Feeling Through: Year in Review • Feeling Through Live Ep. 35

[Doug]: This is our 35th episode of Feeling Through Live 35th straight mind, you we've done 35 weeks straight and we've managed to have navigate every issue each week. And it just so happens that our very last one of the year, we have some technical difficulties here, but again, like how fitting, how fitting that our last episode of 2020 is just rife with technical difficulties. And that is a perfect segue into reflecting back on what this year has been like through the lens of Feeling Through. We had, and some of you who are on, I know have been a part of our in-person experiences that we were able to do prior to the pandemic. But for those of you who don't know about them prior to the pandemic, we were taking the Feeling Through Experience around the country, as part of, you know, it's the Feeling Through Experience for those of you don't know, by the way, is a three-part fully accessible event. that includes the short film Feeling Through a supporting documentary called Connecting the Dots, which follows the process of making Feeling Through, and also the search for our 10 year old, the Deaf-Blind man I'd met many years ago, who inspired all of it. And then part three is a panel discussion and Q and A with the Deaf-Blind community. And we were taking this experience all across the country. We were able to do 14 fully accessible in-person events prior to the pandemic from New York city to Hawaii and many places in between. And it was an amazing opportunity to bring diverse audiences together to have this shared experience. So we had, you know, in whichever city we were in, we would get as much of the local Deaf-Blind population to join us at the screening alongside the general public, have it be a fully accessible event where at times we had as many as 50 interpreters and support staff at a single screening to provide one-to-one accessibility.  

So that meant stage interpreters, tactile interpreters. We would have open captions on the screen audio description available, and various accessibility components to and from the theater and within the theater. And it was such an amazing way to share the experience, to connect with people across the country. And again, bring communities together in a way that, you know, to our knowledge hadn't really happened before providing that level of accessibility. But when the pandemic hit for us, like everyone else, our plans had to change and change drastically. We had about 30 screenings lined up for the rest of 2020, 30 live screenings that we all, we had to cancel all of those obviously. And we're kind of left for, you know, a week or so, like kind of scratching our heads of like, okay, like what do we do now?  Now believe it or not, I know seem like such a pro with live streams now, just kidding. We've had lots of problems at the beginning of this one, not my fault, it's the internet, but prior to this year, I personally had never done any live streams. But very quickly it clearly made sense that that was the way to go about it, you know, at the, at the beginning of the pandemic. And you can go back to our very first episode of Feeling Through live with Ryan Odland from the Helen Keller national center, which was about how COVID was affecting the Deaf-Blind community.  

And in that episode, we talk about how, obviously this pandemic was affecting everyone, but you could imagine how it would disproportionately affect a community like the Deaf-Blind community that relies often largely on touch, during a time where touch was prohibited. So we, we, we knew that there was a lot of people in the community, and in our community that were particularly affected and isolated during this time and wanted to try to find a way to continue to create experiences that connected people and therefore Feeling Through live was born out of that born directly out of this need to connect people during this time where we were particularly disconnected. We've had the amazing privilege to have interpreters, as a part of every episode to provide that accessibility. Very fortunately, Facebook provides pretty accurate live captions. So we've relied on those for providing that accessibility. And, you know, we also started doing the Feeling Through Experiences virtually and, you know, well, I had, at the beginning of this process, I was a little skeptical of how this would all work, because again, we had just come off of, you know, 14 in-person screenings, where we got to physically, you know, connect with people in the same room and shake each other's hands and give each other hugs and get to meet each other in person.  And I was like, how are we going to be able to get anywhere near that with a livestream,  but I was wrong  because although a live stream is completely different and sure you can't duplicate that in-person connection. There are certain things that we've been able to do with this live stream that we would have never been able to in person, which is reached the amount of people we reached this year. And, you know, it's hard for me to say exactly how many, but what I can tell you is that, you know, we've had, as, you know, over a thousand people tune in to just like one of our many Feeling Through Experiences we've done. So to have like a thousand people on a livestream, and have people writing in the chat box telling us where they're tuning in from all across the world is an amazing experience. And something that you can't do in person, you can't have, I mean, you could probably find a theater to fit a thousand people, but you couldn't have people, you know, from 45 different States and 12 different countries like we did on our very first live stream of the Feeling Through Experience, which was just an astounding thing to see how we could connect people from all around the world through one experience. So it's been really a pleasure and an honor to be able to share this with you virtually we're very much looking forward to the time where we can get back and do this in person, but until then, it's, it's really been amazing. You know, Carol Brill just commented, is saying nice things in Facebook. And Carol is someone who is an Ireland who I connected with during this time. And, you know, I was able to do a Feeling Through Live episode with her, me sitting here in Los Angeles, California, her in I believe in the Dublin area of Ireland. I don't know if it was specifically there, sorry, Carol. I forgot exactly where you were, but in Ireland. And how amazing is that, you know, when we're talking about a platform where the goal is to build as big of a community as we can around topics like human connection, Deaf-Blind awareness, what better way than to connect with people all around the world. So it's been really, really special and, you know, something that is an added dimension as we move forward, that we're even when we get back to in-person experiences, we're, we're not going to want to lose the ability to connect with people virtually as well as well. So that's been such an awesome thing. And, you know, again, as far as looking back at the numbers, it's hard to say exactly how many people we've reached, but I think if you add up, you know, all of the views from our Feeling Through Live episodes, across all the platforms and all of the views from our Feeling Through experiences virtually, you know, it's definitely well over 350,000 views. As far as how many people that is a hard to say, but it's a lot, many, many tens of thousands of people, I'm sure. And that's been a really just, you know, silver, if you will, or even more so than the silver lining of this year. So I'm gonna, I'm gonna take a quick pause for an interpreter switch here.  All right. And continuing here. So again, if you're just tuning in and confused, why you just see me on the screen without a guest, Steven was meant to join me today. He was having a little bit of technical difficulties, but this has just turned into an AMA and ask me anything. So if you're watching and you're curious about anything that, you know, Feeling Through related, whether it's, you know, things screenings we've done or episodes of Feeling Through live we've done, or what our plans are for next year, please feel free to chime in and ask. But in the meantime, I'm going to just continue telling you a little bit about this year and what we have planned for the future. Anyway, even if you don't ask. But actually Nilam is, is asking a question. And for those of you who aren't familiar Nilam joined me on this platform a couple of weeks ago, and I highly recommend you go back and watch her episode. It's really amazing. And she's an amazing person. And she asks what has been the most important learning with the Feeling Through Live or experience event? That's a great question. I mean, there's so many things that I've learned throughout this process, but the first thing that pops out in my mind, I'm going to actually go back to the very first in-person Feeling Through Experience that we did in Cary, North Carolina. And at that time, you know, we were screening, Feeling the Feeling Through Experience publicly for the very first time. So we had not gotten any feedback from anyone outside of the project. And at that point, you, you never know what people are gonna think of something until you start showing it to them. It was really important to me that it was something that the Deaf-Blind community was proud of and wanted to get behind. But at that point, I didn't know how anyone was going to feel about it, let alone the Deaf-Blind community, and- Oh that's funny, Nilam says she used to live in Cary, North Carolina. Well, that's a funny coincidence there. But at that screening, during the panel discussion and Q and A portion, one of the very first people that stood up was a man who was Deaf-Blind. And he said that he loved the film. He thought it was really moving and really loved this story, but moreover he loved the, the accessibility we were providing for him to be able to experience it. And he said, and I'm paraphrasing a little bit, but it was pretty close to something like, you know, people assume that because I am Deaf-Blind, I wouldn't care to go to the movies, but I love this. I love coming out to the movies. I just never had the opportunity to have the accessibility like you're providing today in order to experience it fully. And that was such a, such an amazing aha moment in the sense that yes, of course we, we were providing that accessibility because we wanted people to have the, you know, we wanted everyone to be able to have the experience, but it's different hearing it from the mouth of someone who's sharing, why it's important to them. And that was such a, that's when it became, you know, something that I understood up here to something that I understood here. And I'm pointing first to my head and then to my heart, because that's when it really dropped in really truly why accessibility particularly, you know, from, from a film screening standpoint is so important because there's so many people that want to be able to have the experience that everyone else has when they go out to the movies that never have that opportunity and really want it.  And everyone should have that opportunity. It's such an amazing thing to be able to do, to go out and experience a live a live event. And to hear that as like one of the very first comments that someone from the Deaf-Blind community said about the experience was, was a moment I'll certainly never forget. And something that is really fueled, you know, a lot of what we've done over the last year. But there's so many other things that I've learned and, you know, we, we've learned, I've learned a lot about accessibility, you know, virtually as well throughout this process, and know that it's something that I really hope that a lot of the gatekeepers, like, you know, the, the platforms like the YouTubes and the Facebooks and, and places where we share a lot of content start to really focus more on accessibility and really prioritize it more because I know I still have my gripes about those platforms and the things that I feel like they should be doing that they're not yet. And I think there's a lot, there's so many people out there that would benefit from greater accessibility on those platforms. And especially at a time, like now where so many of us have been connecting virtually, and really relying on these platforms to be able to connect and to inform ourselves of what's going on. It's so important for that accessibility to be there. So, Nancy, hi, Nancy. So, so glad you're joining us again. Nancy asks do you see opportunities for the blind community and fitting film production roles? I'm inspired by the live streams have expanded possibilities and outreach and Nancy that's great question. You know, we're, we're really committed on this platform to a lot of the awareness that we're generating is not just for people to have a better we're standing and connection to the Deaf-Blind community, but also, so that they'll very specifically in the, in say the film industry will consider hiring Deaf blind actors, and also people were Deaf blind behind the camera. You know, I think the next thing that I'll be focused on down the line will be, how do we create infrastructures that allow people who are Deaf blind to tell their own stories in film and TV and other mediums and how can, and we support that. You know, I very fortunately right now in Hollywood, there's a lot more attention put on how do we support marginalized communities telling their own stories. And I think that's something that, you know, we've often said on this platform, there's virtually no representation of it, Deaf, blind community and film and TV, or really any media at all. And it, you know, Feeling Through the start or part of that start, right? We're not the only thing out there, but, you know, Robert's the only Deaf-Blind actor to start a film. We definitely are committed to making the feature, the film version of Feeling Through, but moreover, how can, when we create infrastructures that support people who are Deaf-Blind telling their own stories, and that's, you know, definitely still in the early stages of figuring that out, obviously that takes a lot of resources. So that's something that as I connect with people, you know, it's something that I'll definitely Trop in a lot of conversations too, to see who the allies are on that vision and how we can come together and mobilize to fulfill that vision. But that's, that's where we're headed. That's where we need to head. And it's been echoed by or said by a lot of people on this platform, a lot of amazing people in the disability community who have joined me on this platform and spoken much more eloquently and intelligently about that subject than myself, but that's really where we need to head. And, you know, I'm really confident that we'll be able to play at least some part in that here in the, on the Feeling Through platform. And I know that there's a lot of other amazing people out there working hard to create those opportunities as well.  So that's what I think it's most important, but you know, what, something that we're really excited about coming up in this upcoming year is that, well, first and foremost, we're really working on getting feeling throughout to more people. We've as many people as we've gotten to reach this year, we hope to reach a lot more in, in the start of 2021. And, you know, for those of you who follow our social channels, we started a #FeelingThrough and #ForYourConsideration campaign. We'd love you joined in. And I know sometimes, you know, I'll be fully honest. I feel a little funny making those asks, sometimes asking people to, you know, hold up this picture of a piece of paper that says hashtag Feeling Through and a hashtag for your consideration and, you know, posting that on, on social media,  but it honestly really goes a long way in helping us spread the word about this and, and turning on people who maybe aren't familiar with, and so, if you're sitting around over the next couple of weeks over these holidays and maybe have a little downtime, you know, please consider joining in. If you go to any of our social channels at Feeling Through, you'll find a lot of examples of people who have been doing it if you fall. And if you follow the hashtag Feeling Through, you'll see a lot of people it's really simple. Just take a piece of paper, write hashtag Feeling Through hashtag for your consideration and take a picture posted on your social media and make sure you write those hashtags in the text of the post too. And it's going to help us just ripple this outward. And, you know, there are specific reasons why we're doing this. If you're not familiar with what for your consideration means, you can do a quick Google search and figure it out. We're not really at liberty to talk specifically about it at this stage. We can really kind of only say for your consideration, but, you know, there are huge goals that we have for the top of 2021 platforms that we're hoping to be a part of recognition that we're hoping to gain that will really help us spread this, you know Feeling Through and the message of Deaf-Blind awareness and accessibility and human connection to many more people. So everyone that joins in and really helps us get there. It really takes a community. It's a team effort. There've been so many people that have been a part of the Feeling Through family to get to where we are now. And it's going to take all those people in more to take it to more people and have more of an impact.  Nancy, I will post an example of that. I can't really kind of do it, how I'm set up right now, but if you look at our previous posts on our Facebook page, or if you've just type in hashtag Feeling Through, you'll see it pop up, you'll see people who've done it, and I'll be posting about it again on our social media later today. But yeah, if you're just, if you're not already follow our social media and you'll, you'll see plenty of examples over the next coming, coming weeks. So kind of to move to another topic, that's been a really amazing new dimension of Feeling Through that started up really in the last couple months, because Alondra, I see, you're asking an amazing question here of a lot of asks, what's your favorite thing about sharing the experience in school? And for those of you who don't know, we've started to share the Feeling Through experience with schools. We've shared it with some middle schools. We've shared it with some hikes the schools, and it's been really amazing to, to share this experience with the younger for generations. You know, part of the origin story we have all of this was that, you know, at 27 years old, when I met Artemio, you know, it wasn't until I was 27 that I was really thinking about the Deaf-Blind community for the very first time and meeting someone who was Deaf blind for the very first time. And I wanted to make sure people didn't get to the ripe old age of 27, like me before they really got to connect with and understand this amazing diverse community in the Deaf-Blind community. So we've been sharing the experience virtually of course with schools and, you know, most recently, you know, shout out to Schreiber high school. And Dr. Pernick, who's the, who's the principal there. And Mara Silverstein who runs the Ed Foundation, who helped bring the Feeling Through experience to Schreiber high school, but something that was so cool is that we were able to Schreiber high school made Feeling the Feeling Through experience curriculum for all 1600 of their high schoolers. So what they did is that they played the short film Feeling Through in all 66 of their English classes. And then we did four grade wide assemblies with each, you know, grades nine through 12, where we played the supporting documentary, Connecting the Dots, and then had a panel discussion and Q and A with myself, Robert Tarango, our actor, and Feeling Through, and also Chris would fill the associate executive director of Helen Keller national center. And it was so amazing to share the experience with this entire high school. They had great questions. They told us how moved and informed they were by the experience. And it's really, you know, it was really a fulfillment of one of our highest goals when we set out to start sharing the Feeling Through experience to have that kind of impact at a high school, and then also in a community because after they screened it for the whole high school, they did a community-wide screening too for port, which happens to be where Helen Keller national center is located. So to have that kind of impact on a community, to have it something be something where, you know, 1600 high school students experience it and then get to share it with their families is the kind of impact that we set out and want it to have at the beginning of this, but to have that be fulfilled such an amazing thing and such a great way to, to be wrapping up 2020, we're really, we're excited to share the experience with more schools in 2021. And if you're an educator who's watching this, or, you know, you have close friends or family members who are educators, you know, feel free to have them reach out to us or feel free to reach out to us, yourself@infoatfeelingthrough.com. And we'd love to talk about bringing the experience to, to your school and your community as well. So that's been, that's been something that's been really amazing. And you know, one of the other things in looking forward to 2021, another huge goal for us is we are dead set on making the feature film version of Feeling Through. You know, something that is pretty consistent when we screened the film, as people want to know what happens next, you know, what happens to Tariq, what happens to RD? Do they ever see each other again? And these are the types of things we, we love to hear because we love to hear that you want to know more about what happens, and you know, that it moved you in that you, you enjoyed the, the experience of watching the film. So we, we definitely are in, we have that, you know, we're slowly but surely developing the feature film version of Feeling Through, and I'm really look forward to having that ready to go and start connecting with the right entities to get it made, you know, something that was really integral to making the short film and something that will be really important when we make the features. We're definitely gonna want to continue to make it alongside the community and also be able to include a lot more of the community during, throughout the process of making it. So it's going to be an amazing opportunity to have more people from the Deaf-Blind community involved in the making of the story and something that we're really excited about. We don't quite know how we're going to make it yet, or, you know, where you know, who we're going to make it with, but I will also say that, you know, if you are someone out there who is interested in helping make that a reality, we'd love to hear from you as well. My dream is to have someone who has the financial means and the connection to the community or understanding of the importance of film, like Feeling Through to help finance the film. I'd love to be able to do it with the community so that we're not beholden to someone else's vision of it so that we can make it exactly in the way that we want to make it. So if you are that person or, you know, someone like that, please feel free to reach out to us. That would be an ideal way to make this and to make it the way in a way in which we know it will have not only the best representation of the Deaf-Blind community and the best involvement of the Deaf-Blind community, but also have the biggest impact. So that's our hope for 2021. And, you know, we're, we're ready to make it a reality very soon.  But while I continue here, I'm going to take, I know I'm like talking a mile a minute here, so I'm going to do one more interpreter switch before we close out this today's episode.  

All right. Continuing here. Definitely giving our amazing interpreters of workout today. I'm going into a New Yorker fast-talking mode because I'm all by myself today. So, trying to take a deep breath and slow myself down a little bit here, but yeah, you know, for all of you who are watching today and watching this unique impromptu solo episode, thank you so much. And I know a lot of you are, are people tuned into many previous episodes and are a real integral part of our community. And this isn't just lip service. Like I really mean this when I say a huge, thank you and deep gratitude to all of you who have supported us each step of the way, you know, quite literally this could not happen without you, the whole point of, of doing Feeling Through Live and sharing these virtual experiences is to have people like you, and your friends and family and other people out there experience it. And, and without you, it's meaningless really, if there's not anyone there to participate in it. So thank you all for tuning in for sharing information about our live streams, for liking our posts, and for really an asking great questions during these live streams, it's really made it what it is. And it's really been a joy to be able to connect with so many of you, you know, for any of you who ha have missed some of our previous episodes of Feeling Through Live. We have all of them on our Facebook page, but I find it easier to watch them back on our YouTube channel, which is youtube.com/feelingthrough. We have all of our previous episodes up on there, and some really, really tremendous ones. So I would encourage you to go back and watch some of our previous episodes. If you haven't checked those out and we'll be bringing some more right after the holidays, we're taking our first break here since we started 35 weeks ago to take off for Christmas and new year, but we'll be back at the top of the year talking to some more amazing people. And we'll be letting you all know about it and would love for you to tune in then as well. And yeah, it's been such a fun, fun, fun thing, and such an amazing thing to share during a year that otherwise has been really hard for a lot of people so, we hope it's brought you some relief or some joy, during what's been a tough time for a lot of people. And hello Coffey, thanks for joining us today out. Coffey has a question, but Coffey is one of the amazing actors in Feeling Through, he plays the homeless man who, who has a very integral part in the narrative there. And he also is an amazing advocate. He's done a lot of amazing work, you know, pertaining to Black Lives Matter. He's part of a running group. I'm sorry, Coffey. Tell me what it's called again. Cause I forgot the name of it, but where he gets together, huge masses of people to run together, and to have these real communal events talking about current issues that are really important. A lot of what's around Black Lives Matter. That's been amazing and really inspirational for me to partake with, from afar and also has an amazing film called about the people that you should look up that has... I encourage you to look it up. It's, it's an amazing film that has amazing actors, and is a really timely, important message that pertains to, to current issues that affect all of us. So I encourage you all to check that out, but Coffey asks, when will you be screening the film again? That's a great question. We'll definitely be figuring out something for January. Part of our 'for your consideration' campaign will include some live streams for press and also anyone else who wants to tune in. So right now I think we will be doing something in mid January will be the next opportunity, but we'll be posting about it on our socials. And also I encourage if you're not already, sign up for a mailing list@feelingthrough.com, if you scroll to the bottom of the page, you'll just see a prompt to put in your name and email address, and we will be blasting out all the important information through, through that email. And there's also an opportunity. There'll be an opportunity to watch it as part of the slam dance film festival in mid February. And if you go to slam dances, a website, which I think is slim dance dot it's, either .com or- slamdance.com, from now until I believe the end of the month, you can sign up for free passes for that film festival. And you'll be able to watch Feelings Through as a part of the Fest of that festival. And, you know, for those of you who aren't familiar with slam dance, it's an amazing thing. The festival it's one of the best festivals in the country and they really are great at supporting filmmakers and something that's very cool about the festival this year is that they are really highlighting disability in film. They have a new block of films called unstoppable, which is about highlighting disability and film, which Feeling Through as a part of, and, you know, kudos to Slam Dance for recommends now using that and prioritizing that in their lineup this year. That's really great. And yeah, we're, we're hoping for a lot more of that coming up. So, you know, thankfully there's starting to be more attention around representation of the disability community in film and TV. There's a very long way to go. But people are really starting to, to take that more seriously. And, you know, a film that I saw recently, and if any of you watched it, I'm curious, tell me in the chat, your thoughts about it, but it's called Sound of Metal, starting Riz Ahmed, and it's a film that follows a punk drummer who loses his hearing. And I was really impacted by that film. There are a lot of Deaf actors in that film, but also it's ultimately a film about identity, and someone kind of learning to find themselves having lost, you know, what they thought their identity was, which is a, a punk drummer, which he can't do anymore after he loses his hearing. And there's this wonderful, the middle of the film is about him connecting with a Deaf community, and learning about the Deaf community and really embracing the Deaf community. And I was really moved by that section of the film. I'm wondering for people who are a part of the Deaf community, if you've seen it, if you thought that it was an accurate reflection of the Deaf community and your thoughts about it, I'd love to hear, but I was really moved by that and they also do some really amazing things with the sound design to really put the viewer really viscerally inside of them, the experience of the protagonist as he loses his hearing, which I also thought was really effecting, and a really interesting use of sound design that I hadn't really seen before. So yeah, if any of you have watched that I'd love to hear your thoughts. I thought it was really great, and something that's really cool as we move into the award season. Coming up in early 2021, you know, another film that I know that there's been a lot of buzz about for the award season that was so great this past year, is the documentary Crip Camp, which I believe is still streaming on Netflix, that follows this camp in the, I believe it was the in the seventies, that was for kids with disabilities, really the first of its kind. And in having building this community where there were so many people with disabilities that were being, feeling like they were around people who understood them and embraced them and were like them for the first time, there was a whole movement that was born out of that, really led directly to the Americans with disabilities act. It's an amazing film, and certainly hoping that it does well during the award season coming up.  

So those are some really cool examples of films from this past year that touch on topics about the disability community, and include a lot of people with disabilities in them looking, you know, looking forward to a lot more stories like that in 2021 and beyond. We hope to be a part of that with Feeling Through the feature film and just some closing thoughts here, as we wrap up our live streams for 2020. And looking ahead at 2021, I just want to reiterate my sincere thanks and gratitude to all of you who have tuned in during this past year, it's been a tremendous honor to be able to connect with all of you to share the Feeling Through Experience with you and, and to, you know, share in this platform of Feeling Through Live, where we've gotten to talk to so many amazing people, so are really, really appreciate it. And please if you can join in our awareness campaign that we just launched, if you can go to our social media you can see an example of this. I'll be posting more about it, but you'll, you'll see that it's really quite simple. All you gotta do is take a piece of paper, write hashtag Feeling Through on it, and then hashtag for your consideration below that, hold it up, snap a picture. If you want to hold up the, I love you sign. That's fun to do too. And when you post it on your social media, just make sure to hashtag it Feeling Through and hashtag for your consideration. And that's the next step of us spreading this out wider and connecting with more people and, putting us in position, hopefully for some exciting opportunities in, in 2021.  

So without further ado, I'm going to sign off your, thank you for bearing with the technical difficulties we had at the top of this episode. And I hope I didn't bore you too much just hearing from me this, this for the majority of this episode. But we're looking forward to picking back up, I believe our first, let me just check the calendar here, but oops, I just did something funny, but I believe it will be January 8th will be our first Feeling Through Live back, but I'll be posting about it. So once again, have a very happy holidays. Let's close out 2020 strong and, to an amazing 2021 ahead, that's already showing some promising signs of changing the tide of 2020. So thank you all and have a tremendous rest of your year. Happy holidays, everyone. 

Feeling Through Live • Episode 34: All Things Audio Description

[Doug]: Welcome to Episode 34 of Feeling Through Live, where we're going to discuss all things audio description, and we couldn't be doing that with a better person than Michele Spitz. So I think before we start anything, certainly we're going to want to do an audio description of what's on the screen. So I'm going to Michele, why don't you start with the picture that we have up for you?  

[Michele]: Minus my presence today? My photograph, I have long brown hair, brown eyes. I have red lipstick, somewhat of a smile and I'm wearing a black v-neck top.  

[Doug]: And I am wearing a light blue button up shirt. I have short, dark brown hair, a little scruff on my face, and I'm in my dining room. So you can see a little bit of my living room over my right shoulder with some windows in the back and kind of a weird picture hand drawn picture over my left shoulder here. And we have an interpreter box at the top right corner of the screen. And on the top left, it reads Feeling Through Live episode 34, all things, audio description. So Michele, so, so thrilled to have you joining us today. And you know, I think, I think the best place to start is what is audio description?  

[Michele]: The vast, large question of the world. So audio description is a secondary audio track that is attached to media. It could be videos, it's film, it's broadcast, it's gaming, so on and so forth, which describes all the visual content in between natural pauses of dialogue. And it's a very comprehensive process in which this all comes together and there are, I produce audio description. I voice audio description. I fund audio description. I've been doing this for seven years. A lot of love has been put into this work and the, the process in which this takes places, we would take a piece of media. We would then, if someone has a transcript, for example, for a film, we would use the transcript. We would cross references the transcript with time code because the media is stamped and we're looking at the stamped media time, code the transcript, or then hiring an audio description writer, does this as their profession, which takes an enormous amount of time for them to then identify all the natural pauses, define and describe all the visual content that we think is necessary. We can sort of implement and place into those spaces. Sometimes it's limited. So we have to make choices. And then that is QC by people working around me that are producing this. And I then go in the studio and I record that secondary audio track. And that audio track is then mixed into the media edited and also is used for various platforms, such as digital cinema packages in the movie theaters, all the streaming platforms, some of the broadcast networks and video content, fundraising videos, all types of different things I've worked on. So that's the short version of what audio description is.  

[Doug]: You know, I think something that's so interesting about it to me, it's like, I'm fairly new to really understanding audio description. It's really within the last several years for me, that I've really worked with it and gotten to really understand it. And I think there's, there's certainly people in our audience are tuning in who I'm sure use it on a regular basis. For those who don't. I think it's really interesting to think about consuming visual content, if you are Blind or low vision and w the necessity of audio description and really the art behind it, that you were starting to get into Michele that we'll get into in a little bit. But if you think of, you know, certainly a lot of, you know, film and TV and, you know, live events that you audio described as well, Michele are highly, they're highly visual moments that really have very few dialogue cues at certain moments. And if you're Blind or low vision, you, you need this audio descriptive track to know what's happening on the screen. So you can imagine, I always like to think of, you know, something that's like, like an action, like a car chase scene, right, where there's usually very little dialogue in a car chase scene. It's this very heavy cut, you know, high action packed, very visual sequence. And in order to really experience that if you're Blind or low vision, you rely on an audio descriptive track to describe what's what's happening on the screen. And I think what's really interesting to me again, and being coming at this from the angle of, you know, being relatively new to the space is that I think if, if it's, if you're not accustomed to using an audio description track, you might make the assumption that it's just kind of this like rote kind of, you know, mechanical, like, like really sterile description of what's happening on the screen, but not if it's done well, if it's done well, it's a really engaging engrossing part of the storytelling. And I think that's something that people who aren't familiar with audio description might not understand. And something that I've gotten to, to, to understand over these last several years that I've been acquainted with it. So I guess to the point of, you know, Michele, you were starting to talk about the writing and producing of the audio description. Can you, can you go a little bit more into, you know, the process of like, let's take some highly visual scene in a, in a film or TV show that maybe it doesn't necessarily have to be an action sequence, but anything that's highly visual, what, how do you approach that? What walk us through that experience to when you first get material?  

[Michele]: So, yeah, it's an interesting question and I think different people are going to answer differently. So I'm going to answer that question in the context of which I've chosen to pursue this work. First of all, I had my own sort of tone in which I execute. It's sort of my own signature tone, and I prefer to work on certain content than others. And for example, the type of senior talking about, I'm not your girl, I'm not the action voice, casting has a lot to do with this. Who are we casting? And I also hire people to work on some of my projects when I feel I'm not the right person, or for example, we have captions for characters that are hard of hearing or depth of the subject of some of my projects that I work on. Then we have foreign films and I need people to come in and voice the subtitles. I don't want to confuse the listener as to minor ration. And this is really important because not everybody understands that these are other layers of that process. And in addition to that, we have text on screen, for example, on documentaries, which I work a lot on a lot of documentaries. So I'm reading the text on screen and my tone warrants, more of a journalistic narrative broadcast tone in some ways. And then there's another layer that's very soft and engaging and comforting. So I choose content because I can, and because I give grants for these projects and I choose these projects very carefully, which ones I feel I'm best suited for. And if I'm not, then I will hire someone to do this work. But as far as for example, let's say I just finished the new BGS documentary that comes out tomorrow. Okay. On HBO. Now that audio description will not be available on HBO max, because they are not implementing it until March of next year, which is a big change and a big shift, very exciting, by the way, very challenging film. Now that moves very, very, very, very quickly, right. We have lots of talking heads, all four brothers, lots of scenes, text on screen, where they are. I mean, it's all over the map in order to do that audio description, we have to, you know, find that space where we're able to very quickly say what I need to say, describe what I need to describe, and just basically give context to what's happening now, the natural information, which anyone is going to hear, they're going to hear cars, for example, when you're talking about, Oh, cars racing. So, you know, they're intuitively going to hear that as anybody would providing, they don't have a hearing, issue on top of a visual issue. But for example, if someone's knocking on the door, or for example, someone might be kissing, you might hear someone kiss, you don't know, but those natural sounds of life, we're not there to describe them. We are there to give a visual sort of, as you said earlier, and I've always said it, we're painting a picture with words in my definition. So we don't want to give too much information. That's overwhelming. We want to give enough that leads you to sort of that picture. So you can assimilate on your own. What does that mean in the context of what you're envisioning happening? So that's part of how that works. And by the way, I'm only as good as my writer is. And I've always said that I may be able to use my voice in other ways. And I use my voice for many things, but really, truly the beauty of my work is the combination of my voice and the person who is writing that script. And then the person who is directing me in the studio and also editing that work and placing it into a mix for the consumer. So there's many parts that have to come to play here. And by the way, to your point of some audio description being assumed or having been experienced already, that might be a little bit abrupt or short or a monotone, or what have you. There's many different approaches to audio description. And sometimes that happens because it has to be abbreviated. We only have so much room and different approaches and different styles and different writers, also impacts some of that. And now that none of it is necessarily right or wrong, there are different ways. And there are certain protocols that people would like to see in place, which I think make a lot of sense, but we also have to make room for the fact that so much content has not been audio described for so long that even audio describing and getting that done is a step in the right direction. So we'll be refining that over time and we're moving in that direction. So I want to, I want to be fair to all parties involved in this, in this cause, how we're trying to make as much as we can accessible.  

[Doug]: Yeah, absolutely. You know, we had Phil from AI Media on here several weeks back who has been in the captioning business for like 30 years. So he talked through, you know, when he first got into captioning to now has been just leaps and bounds, as far as how much it's been integrated into society and how much more of a demand there is. And therefore how many, how much more resources there are and focus on it. But if you go back 30 years, there was very little, if not, almost anything, almost nothing was captioned, to now where a huge amount of content is captioned by, and, you know, a lot of which by law, audio description, you know, feels to me like it's still kind of becoming more widely known and kind of jocking for more resources and more focus on it. Like you were saying. You know, I don't think HBO, max would ever put up anything, any content now that wouldn't be captioned, but they might put up content before. The audio described version goes up, maybe some point that'll change. Where do you, you know, having been in this field for a while, how have you seen that evolution to now? And where do you think it's headed as we move forward?  

[Michele]: Oh, it's so incredibly exciting. I can't tell you. I am so excited about the future. If you had asked me seven years ago when I started this, this part of my life in this cause and career, I, I think for so many years, I wanted to see this move in a direction so much faster, and it wasn't moving fast enough for me and I'm trying to catch up and I'm trying to get grants and I'm trying to make more happen. And I just thought this has got it. This has got to expand sooner than later, and it is now the flood Gates are open. It's extraordinary. I think what you're going to see happen is so much more content is going to be audio described one by virtue of mandate. And of course, naturally, would we like to see that all content would naturally be audio described and captioned? You bet we're not there yet, but we're heading in a much better direction. So I have a very optimistic outlook. I'm a little overwhelmed by the flood Gates opening as much as they are now. And by virtue of a couple of things, in my opinion, other than, of course the mandate, the advocacy, all those that have contributed to speaking out loud and very proactively about obtaining more of this content in the world to be accessible. But beyond that, I do have an opinion about some of this in terms of why this has changed so much in the last several months. One being when black lives matter happened and the advocacy around that and the attention to diversity and acceptance and engagement of all people in this world at that point, all people, including those with disabilities and all others in this world, as we are as a world we're now considered. And that being said, we went into the pandemic and by default, the virtual world has brought more attention to more accessibility by virtue of the virtual world. So now, for example, the events that otherwise might be live are going to be prerecorded or going to have live audio description or prerecorded audio description. And they're going to have either open captions. They're going to have interpreters. All of this is really interestingly enough, it's a vortex that has now ended up in a place where no one has a choice, but to actually have to look at this much closer. So this has been a benefit, albeit all these horrible things that are happening with the pandemic, but something happened here where we have to pay attention. And so I'm actually grateful for that outcome. And I sit in such gratitude for where we are heading, and I think you're going to see some very exciting things unfold. I'm part of some of them. And I've been part of some of the things in the past. And I just am, really, truly in awe of where we are now, after seven years of doing this, it feels like the payoff is now finally happening.  

[Doug]: You know, Michele that's beautifully put, I think particularly what you're talking about of the climate that we're currently in and how that in certain ways is actually serving the expediting and further expansion of, of accessibility, like audio description. And you don't, I think, like you said, as far as what's been happening with Black Lives Matter, and this kind of like certainly there being a lot more focus on better, more of, and better representation of disability communities and media and in Hollywood that there are I think a lot of people and a lot of decision-makers who are being who are thinking or putting themselves in the shoes of people that they may be in a, in a more, in a way that they may be, haven't had to before to put it one way. And I think there is a lot more awareness around how to make things, you know, accessible and equitable for all people to partake in them. And I think another part of this and something that often comes up on this platform is the saying that accessibility is for everyone, certainly in the past when we've talked about, and we've talked about the different layers of that, but certainly when we've had episodes say talking more about captions, we've talked about, well, certainly captions as a form of accessibility were born out of the need. You know, specifically to serve people who are Deaf or hard of hearing, but that certainly people who are hearing use captions for a number of reasons, whether they have to have, you know, the TV off, but still want to have something on or, you know, whatever that may be, that certainly use it a lot. And it was interesting because we had a gentleman from the New York city mayor's office for people with disabilities, named Walae Sabri, who was on several months ago. And he talked about how he has some friends, who are cited that use audio, descriptive audio description for some of the content that they watch on like Netflix or what have you sometimes, cause they may be, want to be washing the dishes or doing something while they're, you know, consuming a show and maybe they might listen to it that way. So it, it, it also is something that can really serve people in ways that they may be aren't aware of if they don't even know what audio description is.  

[Michele]: That's absolutely true. In fact, we, you know, I do lectures and I do panels and things like that. And sometimes depending on who my audience is, some people in my audience may be familiar with this. Some people may not be familiar. And two things I always say is that the equivalent of audio description, is that a caption? So why we will, why would we leave one community out of having the joy of another art form and experiencing and indulging in an art one, whether it's, it could be anything, it could be dance, it could be, you know, film could be all types of things. Now, that being said, it definitely is very not to similar to an audio book, but it's an audio movie. So for example, beyond cleaning the dishes and what have you, you could be driving your vehicle and you might happen to want to tune into something that it gives you the visual content. And in a way, I actually think it's a really good educational curve for some people, because one, I encourage people. I have people come over to my home and I do screenings and I ask them to close their eyes and open their eyes. And what have you, and most people that are in my life prefer to have the audio description on, even though they have their vision, because they said they heard so much more than they saw on screen, and it made it more robust and more full and experience. So for some we asked, we also have to address another subject matter here, which is also very important. I have to be respectful of this community. At times audio description can be very content heavy, right? It's a lot of words coming at you all the time. So not only are you listening to the content, you're listening to someone like me narrate it, and those that are on the spectrum on neurodiversity, or what have you. This might be information overload for them and to process as much information is not ideal for everybody. So there are other ways of taking that information. If there's other ways of pausing the media, there are ways of doing screening with open audio description, open captions, for those that can manage that there are those that can turn it off and just listen to it, them by themselves, in a room, there were other ways to experience it, but we also have to, we have to respect that. So it has its benefits for some, for others. It might work for a little while, then they have to turn it off for a little while. I I've talked to different people that, you know, express this to me. And of course I read a lot about this and I think that makes a lot of sense to me and I understand it, and we're coming a long way with that too, as we learn more about it.  

[Doug]: That's a really good thing to think about and, you know, something, a space that I haven't really thought too much about myself. So you're even in just you bringing that up. It takes my mind into a lot of different places that I haven't really deeply considered yet myself. So really, really great to bring that up. We, I want to go to a question here from, from the audience Judith asks well she says, Michele, what motivated you to get into this specialty? I hear the passion in your voice and wonder if it was something personal.  

[Michele]: Thank you. I like the fact she hears the passion in my voice. Most people say I'm very palpable. So I appreciate that without even actually having an opportunity to sit with me. This is a very unusual journey. One of which I didn't expect to be taking, I must tell you, and I believe this was a gift to me. I don't think there's been a happier time in my life, or I've never felt so should I say anchored and grounded as to my purpose on this planet? And I will say that with all my heart. And so my journey started a little bit differently. I'm a little bit older for those of you that can't see me, but I'm actually 57, almost 57. So I'm on the older side here, but that doesn't make it any less important. My college degree was in broadcasting and it was a dream to use my voice for my career. I digressed from that and I moved into marketing. So I never really pursued voice work. I then also was a philanthropist and supporting people with disabilities and seniors and veterans and underserved communities in the arts. And in which I have always felt the arts are the healers. I've always felt that way. All of us will identify with some art form. It may not be universal art form, but something where we're expressing something beyond our every day lives. And so that being said, my goal was to be sure that people had the opportunity and the choice to participate as an artist in an art form and or as a patron and an audience, or both on my dime. So I was a philanthropist for a number of years doing this work. And then at one point in time, I was approached by a friend of mine who I will never forget. And I'm indebted to forever for my life, a sort of detour who actually teaches people with disabilities primarily a lot with down syndrome in acting and singing and performing. And what have you, many of whom are now on television and on Broadway. And he had said to me, there's a gentleman who used to do the universal distribution and he's leaving the industry at the age of 50 to go into accessible media. And I said, I'm so sorry. I don't know what that is. Just like most people say to me. And so I thought, what, okay, so I need you to meet this person. And I did. And he had said to me, would you do me a favor? This is very unique. He said, would you do me a favor and go to a studio? The proprietor is Blind. They produce audio description. Some of their engineers are blind. And would you go in and voice a short film about a boy with a disability in this film is going to be part of a submission for an award process of which it did receive. And I went into the studio and I thought, I have no idea what this is, but okay, sure. Why not? And I ended up voicing it and I thought this is very unique. I was given one more opportunity to have to do a full length film called drunk driving blind Tod Purvis, and his brother. And this film was about two brothers who have the same eye disease of which they take a road trip around the United States. And this is their story. And one may or may, they didn't know where their vision, you know, process may go. One is now I believe, blind in the other, Tod himself is not, and they didn't have the money to make it accessible, and it was to be on a panel in Los Angeles. And so I was asked, would I be willing to voice it and possibly contribute to funding it? And I did. And at that point I always tell people, I walked out of the studio. I was four hours of my life. I'd never spent four hours sitting in a studio. I thought I was going to pass out and I walked outside and I felt like the universe wrapped a big red, juicy bell around me and said, I had, I really did. I had goosebumps from head to toe. This is why you're here. And I quit my marketing career immediately. And this is where I went forward. So the, the beautiful, the beautiful sort of full circle of this, this event in my life was not only was I able to financially contribute to people with disabilities to participate in the arts. I was now able to make the arts accessible with my voice. There is no greater gift that I've been given in this life. So that's really my story. Well, that's an incorrect  

[Doug]: story. And, you know, I think it's, I think it's rare for people to experience purpose in, in such a specific moment like you did that you just described there is. And I think that's why everyone can hear the passion in your voice when, when you talk about this work, because, you know, clearly it really strikes such a deep chord in you as far as per you know, it being so purpose-driven for you. And that's, it's really amazing to hear the story behind that. I can certainly relate to, you know, being someone who in certain ways kind of like backed into this space and then really found a passion for it as well in the sense that, You know, Feeling Through was born out of this chance encounter a number of years ago for me, which kind of the path of being moved by that. And following that as led me into all this space and really finding a real passion for the communities that we serve here through this platform and all the people, all the amazing people I've gotten to connect with through that, through this platform. So I've definitely can relate in certain ways to some elements of your, of your story there as well.  

[Michele]: It's wonderful. It's absolutely wonderful. I mean, it does take you in other directions, right? It takes you in other directions. And, and, you know, I want to add to that we never know where some of these things are going to move into and expand, right? So that being said, I, with this cause has come many other ways to expand this cause and to reach out further to the disability community and those associated with inclusivity and diversity and really the, the essence of inclusion in every which way we can. Right? So part of doing this work is sitting behind a microphone, frankly, and being unseen. Okay. And that's fine for a period of time at which, at which point in my career, I decided it was time to get out behind the microphone and get out front and start talking to people about it. Because when you, the voice behind the audio description and the person in front talking about it, and the importance of it, the, the, the, the, shall I say, the acceptance curiosity of wanting to know more, becomes more real. So I've done a number of panels. I've done a number of classes with people that have disabilities to teach them about how they might get into the industry. Where would they fit into this, this part of what I do. And I mentor some of these young people, some are not so young, and it's really rewarding to me because I get to see where they're going with it now. And in addition to that, I have created grants for individuals that are in grad school that are in film with disabilities. I have funded part of their scholarships that they could move forward in their careers. They've learned a lot from me. I've learned a lot from them. This has moved in so many directions, of which I would never have imagined. And so we just don't know. And for you, we don't know where you're about to go to because yours makes me even greater way beyond my world. But I just know that when we leave those options open and we just don't know where we're necessarily going to end up the forest or the trees, I just, that forest just keeps going. I just don't know. So I welcome lots of different opportunities. I welcome input to learn more and to serve as many communities as I can. And part of this is also asking the community and the world to step up and start providing more funding for this work. You know, a lot of the independent films don't have this funding. And when their films go to festivals, film festivals, they may or may not make it to distribution. We hope they will, but there's a lot of content out there. So in order for media to be consumed, even on a festival level, we want to be sure that media is already audio described and captioned. So that should it take a journey. And I pray that it does pass the festival level. Then that media goes along that journey. So when I work with a client and a filmmaker, I take them on, I take them under my wings. There's no question about it. If you're not interested in getting tucked under my wings, don't listen to me further. But when you come under my wings, you're going to have a learning curve and it's going to be a lot of advocacy. So I ask everybody to please indulge this experience. Let me teach you about what it is and let me have you also advocate for your film and your artistry that it reaches all these audiences. So I actually work with every client through the distribution process to be sure the media goes on every platform. And this is a lot of work by the way, this is not work I get paid for. I just feel this is important. So when I take on a client and I get a grant for audio description production, I make sure that this film is labeled. It's promoted. It's talked about that. Filmmaker teaches the next filmmaker. It's a domino effect, so part of what I do is very unusual compared to some people. And that's why I take on one project at a time. And then I do all my advocacy work and all my other disability community work alongside with all of this. So it really comes full circle, but most people don't understand that. One other thing I want to reflect on in the beginning of the conversation I should've mentioned and forgive me for not. For those of you that don't know how audio description is utilized, when an individual who's low vision or blind chooses to go to an actual movie theater cinema, there are headsets that they use. And in the headset, they're going to hear the audio only version of the description. So when we deliver our deliverables are, you know, when we're finished with our recordings and we're delivering the assets, that audio only is in our headset. So you're hearing a movie and then you're hearing someone like me. The other version is a mixed version. The mixed version goes along with all the media that you might turn on, on your television, on broadcast, anywhere else that you are taking in your media, and it's a mix, so you can turn it on and you don't have to have a headset. You just get to absorb the, the media as its natural organic process. And on your television, you might be turning on the SAP channel, which will give you your captions or give you your audio descriptions and option and a DVD. Or Blu-ray not everybody's using those anymore, but that's okay. I'm old. I remember DVDs and Blu-rays you have the DVDs and Blu-rays have the same option provided that the audio description made it that far. Not everybody puts it onto their DVDs, but I insist that they do if they can, right? So they turn it on just like the captions or they turn on the foreign language. So I just want people to understand there are other ways to take it in. There are other ways to share it, but not have to share with everyone you're sitting with many different ways. Just like those that go to the movie that are harder, hard of hearing and Deaf. They have a captioning bar that sits well, they also have some people have Google glasses for all. There's all types of things they're doing. Now, they have an app on the phone. Spectrum is using an app now for audio description, captions, foreign language. There's many ways now you'll see much more coming, but those of you that might have ever seen someone with a catchy name bar, it sits on their arm rest, and they're looking at the captions going across the bar. And so the headset of the audio description is the equivalent to that. So that's the best way to understand it.  

[Doug]: Yeah. Well, very well put, I'm going to take a quick pause for an interpreter switch. Okay. All set. So continuing here, soaps so much great stuff that you got into there. One thing that I want to mention, you know, from, from the filmmaker's perspective, cause you talked about how things are certainly headed in the right direction, but that there's still a lot of content that's not audio described in it and that it would need to make it all the way to a certain point to really have that be something that, that gets that happens. Cause it's, you know, when it gets into distribution, but for all that content that maybe doesn't get like larger distribution does still have that. The audio described, you know, I know, you know, with Feeling Through, for instance, which is, you know, one of the many films out there that was made on a budget and in our case, it's a short film. So it's a lot easier to, to make an audio description track in the sense that it's just, there's less to describe because it's a shorter piece of content, but that was a case where I took on that duty and worked with several people to do that. But certainly there was a steep learning curve since that I watched a ton of audio content before I even attempted to start to work through it, because I really wanted to understand the conventions, how, like, like you mentioned, Michele, certainly different styles, but anything and anything that was consistent that I saw across it as far as how things were described, and in what manner. And so spend a long time studying that and then, wrote out my own a script for the audio description, which I then had a couple other writers write a version as well, because I wanted to know like, and I want them, this is going to turn into a question at the end of this for you, Michele, because something, from my perspective in mind, my one foray into this was that there's such an art to it because you line up 10 different people to watch the same clip and, you know, to write audio description for it. And they're gonna, they're gonna write 10 different versions of that. Like certainly there's going to be commonalities. And certainly they're seeing the same images on the screen, but the way in which the words that they choose to describe it and how they choose to describe it is going to be different for each one. So I wanted to make sure, you know, in certain ways I knew the film better than anyone, but in other ways I was so inside of it that I wanted to get other people's perspective on what they were seeing. So I reached out to a couple other writers to write their own transcript for it. And then we kind of merged the few together into what we thought was the best version. But then again, you know, this being my first, I also had, I had an idea of how I wanted to describe things, but then there's of course the actual space that you have to work in the audio description. So I had to then go back and rework it and figure out what, how to describe everything that's happening there, but do it in a more economical way because it was too, there's too many words in the previous version that didn't work out with the amount of time that I had to say the audio description. So it was just going through one round of it was really a master class and all the things that I learned to consider in this process and certainly have a very high regard for moving forward. I think the hope is that, you know, with the more, you know, to, to your point about being more of a voice for the, for the community of audio description and the importance of bringing awareness to it, is that the hope is that the more awareness there is, the more, this will start to be something that's worked into filmmakers budgets ahead of time, and is part of the deliverables of completing a film regardless of where it ends up. And that will be something that will be a nice thing to work toward, but, you know, I would highly suggest for anyone who's creating content out there certainly work with professionals. There's a reason why, you know, this is, this is a high level profession in and of itself because there's a real balance of art and expertise, but I would suggest just as an exercise take like a one minute clip of something that you've made and just try doing your own audio description as an exercise, cause you'll have a much better understanding of first of all, high regard for the execution of it, but also an understanding of why it's important and why it can be like a really interesting and new way to experience the content that's at hand, because I've found that I looked at the film in a completely different way, having to look at it through the lens of creating, you know, the audio description for it. And it was like an amazing creative exercise that had me have to really understand the content and the images in a way that I hadn't had to prior to that point.  

[Michele]: So I, and that's very well said by the way, and you're absolutely correct. You're a perfect example of what that process is. Of course you probably got involved more than most. I will tell you that. Yes, of course, much of what I also I lecture about and, and on my panels and I speak about is that we do need to find a budget line, okay. Worked into the budget in advance. It should be something that isn't a luxury. It is a must if we can make this happen. And I, I say must with grace at the same time when I say that, but yours, part of what happens when, and I'm very, I must say I'm very particular about a lot of things and I'm a, I'm a perfectionist. So when I choose to work with certain writers or directors or editors, or what have you engineers, I've looked at a lot of different scripts. I've worked with various writers. I have a very good team of writers I'm very proud of. There is nothing that's ever going to be perfect and not everybody is going to love everything that comes out of that. Everyone has a different opinion about what word should be used. Every person has an opinion about what voice they like, how much should we have said? Not said, I accept that reality. When I do feel very comfortable saying is it is a process. Each film is its own life in terms of how we develop that audio description. Sometimes it works better than others. Sometimes we have to rush things in and fit them in and squeeze them in. And boy, do I hate that? I don't think there's anything. I dislike more than feeling like I have to rush something and I sound like Minnie mouse or something. I don't know what happened. And that's like, that's the end, I'm over it at that point. Now I'm kidding. But that does happen. So what, what really has to happen is if you are working on a project, every filmmakers should be actually reading the script when it's done for corrected, it's sort of correcting any information, seeing if they like how things were described, by the way I've had people come back and say, do you think you could put this word in or do you think you could describe that Diply? Well, I then take it back. We get the time code. We might be able to mend part of it. Not all of it. We'd have to, we have to take this all into account. This is not an easy thing to do all the time. Especially documentaries in narratives. There's very little room for it. So we really, we just have to look at this right. And the best way we can, we do the best we can. And we have to accept the fact that we all have different opinions and different styles and different yeah. Things we like. And don't like, but most important isn't. And this is, if someone asked me what would be my greatest wish, what would be my pipe dream right now? It would be that it was mandated that all media was audio describing captioned, bottom line, all television, all film. The reason it's not is because it's not mandated. And it is a responsibility of those who have chosen to take this responsibility on and feel they want to include it. Some because of, for example, we know that, of course there's a number of hours per broadcast that required to be audio described, but wouldn't it be nice if everything was, we didn't have to pick and choose what was available. So we're still in that, in on that. Let you know, we're still in that lane, but from what I gather, yeah. I believe most films now are required to be captioned. From what I gather. It is not been required to be audio described. That's why people, we have to go out and talk to people and say, would you consider this? And that's an ask and not everybody is willing to do it, nor do they know enough about it. And one other thing I want to point out, you might think that the average person may not know about this in general, right. In the world. Understandably. Why would they, right then it's sort of an in-store conversation between post-production houses, maybe entertainment, entities, maybe filmmakers. There's still an enormous percentage, even in the entertainment field, in the directing field and the producing field in the post-production field. And, and by the way, much bigger way, the distribution world that don't know about this. So we're educating all of them. So what other options do we have then to keep talking about it until which time maybe one day it becomes mainstream, but that's the reality of where we are and that's why we are where we are. And so advocacy is number one, and then social responsibility is number two. Do you want to take this on or not? And it's a choice and everybody has a choice to make it, they have the funds they do, if they don't, they don't  

[Doug]: You to add to your, your hopes for the, your dream for the future. You know, I think some really incremental steps that shouldn't be too hard to implement with. Just there being more awareness around this. I, you know, I'd love for plot, just widely use platforms, like say YouTube to have it easily that you can upload it as like, and have it be like a toggle button, like you would for captions and have that be something that can be integrated into the same link. So that's something that you can easily toggle on and off for those that do have audio described versions of content or are inclined to make that. I think that would be such a great, just think something that feels like it can happen immediately if there was an inclination to do so. I imagine that's not that hard compared to a lot of other things that would happen. That's already there now. Oh. So, so there, isn't like a toggle function that you can,  

[Michele]: I haven't tried it myself, but I've been told that that no exist. So maybe it's in beta, I don't know stages, but I haven't tried that myself. And I think that's great. And may I also interject and say that Vimeo of all things because of the amount of media I deal with and films and what have you Vimeo absolutely should have that option. I have filmmakers I'm working with currently who are doing educational distribution. They actually have to post several versions of their film. So would open captions, open audio description one with out, this is, this is in my opinion, Vimeo, it should be an automatic, especially in the virtual world that we are right now. So I believe YouTube has stepped up. I believe Facebook has something they built in a number of years ago. I'm not quite sure what it is and everyone's going to be now including all techs, because that's what we're able to do now and bring that into the sphere. But it is not they have not made this easy. And I might add also, and I, I'm very disappointed about this and this sense, many films I've worked on recently. And I, I don't choose to identify which ones they are. They're some very large feature films I've worked on and documentaries recently. And unfortunately, during the pandemic, the very sad part about it is their distribution on a virtual platform via a distribution platform it's not accessible. So my audio description is not being experienced on the virtual platform of their distribution. So it's, let's say for example, a film has to be shown in a virtual distribution to a number of cinemas that we all know very well. Okay. And all of a sudden you might think, Oh, terrific, I'm going to turn on the mix because they have the mix. We gave them the mix. Can't do it because their technology or what platform they've chose does not accommodate. So there's a huge gap during this particular time. And unless that media makes its way to Amazon prime or to Hulu, or what have you, or to Netflix, then those films will not be experienced by those I care so much about who will want to experience these films. They'll have to wait until it comes out on broadcast and or other platforms. So I'm very frustrated with this particular time because of that. So there are advantages during this time of awareness, there's disadvantages of technology.  

[Doug]: Yeah. Yeah. And certainly, you know, I I've seen definitely improvement in certain capacities during this time, because like you said, with everyone doing everything virtually, there's been a little bit more of a focus on it. So I've definitely seen, you know, more platforms instituting say like auto-generated captions and more accurate. Auto-generated captions has been a nice step in the right direction. That's really great to hear about the YouTube option with audio description. I'm going to look into that more. I haven't seen that pop-up but it may be it's in beta or maybe it's just now being instituted, but certainly like you said, should be on Vimeo too. I mean, these are kind of like, you know, when, when you're a platform, that's all about media and hosting media. These are things that at the very least, if people have these things, you should have the option to be able to, you know, have them all be a part of one link and be able to toggle things on and off. We're at a place where that feels like that's a bare minimum, you know, bottom line thing that we need to be at, for sure.  

[Michele]: I agree. You know, the other thing is some interesting outcomes also during this time, and again, we have to take into account, there will be some audience that it'll be info overload for them. But for example, I worked on the ADA 30 and the end game, which are towards, you know, disability communities, employment, the anniversary of the ADA. And I just finished doing the media access awards, which is fantastic, you know, wonderful program. And the only way that we could do this is do open audio description. Well, the media access awards, there are two postings. One is with open captions and the remainder of the program. And there's another option of open captions and audio description open-ended description like mine, and with NDEAM and with ADA 30, it was posted, I believe on Facebook. And it was purposely chosen to have open audio description interpreters and open captions. And in which case, given we were serving a disability community and everybody was being honored at that time, it really was appropriate in many ways to do that. And many people in this is really important. There's a nuance here. I want to point out. So I also work on other video content, for example, for the disability rights advocates, right? And the DRA has a promotional, or I say promotion and say, promotional a fundraising video to help raise money every year. And they usually have large gallons. And I audio describe the videos in which what we do is we have built in, on, in the, on sort of the onset of this process, which by the way, it's very different. So you'll understand this. This is before we're coming in, after the media has already produced, we're coming in and producing it with them. And we're working my narrative and my audio description into one, so that all audience members find this, should I say more easily digestible because you can't quite, you can't quite figure out what exactly is it? Oh, interesting. I was told a little more than I, Oh, but isn't that the narration. So that's part of what we've done and that works quite well with certain things, but with an audience that's in, you know, asking funding to come forward at something like the DRA, why would we have a video that doesn't show them what audio description is? And by the way, the DRA, without the DRA, Netflix would never be using audio description. And they were the first to be doing it. They are the ones who were responsible for it. That's a much longer story and that's a legal story, but my point being, they also were responsible for Hulu and they also are responsible for HBO max. So I said at one point, excuse me, I think do these open audio describing, we need to tell everybody. So last year the gala was at the national history museum in New York. And I made a presentation. I got up and I said, please let me present this video. Let me explain to them before they listened to, they're not bewildered by this voice, what am I doing? Why am I doing it? And I wanted also to thank the DRA for all their efforts of why we have accessible media now in certain streaming platforms. And boy did that work when they heard the boys talking about it, then they heard the voice narrating. It, it all came together. It was a connect. It wasn't a disconnect. It was a connect.  

[Doug]: That's so interesting to describe that literal just like kind of visceral connection that someone makes from hearing your voice, talk about it and then hearing it in the content itself. That's like, yeah. Cause I think one of the things about media is that it's happening in very, it's having an F a very subconscious effect on viewers right. In a lot of different ways. And I think you've kind of aptly described one way in which the connection of your voice talking about it in front of people versus them than hearing it in the media, make some sort of, kind of deeper understanding that that each one on its own wouldn't necessarily do to that same degree.  

[Michele]: Yeah. And when I do presentations, I show clips of my work and I was like, I explained to them what it is. Again, they're able to assimilate this in a different way, and I say, please close your eyes and open your eyes and tell me what happened for you at that moment. Did you understand why this is so important? And everybody does only,  

[Doug]: You know, you have an amazing voice. So certainly, you know, there's some genetics that play into this as well as being a voiceover artist and someone who, you know, was, was gifted with a beautiful instrument to be able to be such a great voice for the work that you do. I'm wondering, you were talking about the different styles and, and I thought it was really interesting to hear that someone like you, who also has a lot of work come your way, that you're, you're choosing what you decide to work on that, you know, both in just like maybe the team associated with it, but also the content itself, what you feel your voice is best suited for. How did you kind of find your style or approaches it's something that kind of organically happened, or, you know, how did, how did you find your, your spot in all of this?  

[Michele]: Wow, that's a ver I've never, I've been interviewed many times and I've never been asked that question. That's a good question, by the way, okay, I'm going to try to answer this in the best way. I know how and I hate using the word. So forgive me. I don't think at the same time, I can't bear it when people use the word. And I just used it probably a hundred times. I want to say, okay, there is a resonance for me personally, on this level, because my background one is I'm also a singer. I don't perform. No, I used to perform. So singing is very melodic. It, there's a, mellifluous sort of tone that goes with that. Number one, number two, I am not one. Who's going to try to sell you something with my voice or make it up. I'm not going to act. And I know a lot of people say, voice actors are doing this work, and yes, they are. I am really at part more of a broadcaster journalist, I'm going to tell you the truth. So something happened when I started voicing this work, I felt an enormous responsibility to relate to someone who doesn't have their vision. Exactly what I am seeing, that they can translate by what I'm telling them. So I have a very big responsibility. So my tone is one in which I hope, and I can't say everybody loves it. I don't know, but I hope they trust my voice because that's where I'm coming from. It's coming from a place of authenticity of trust and sort of a journalistic approach. But I also know many people have told me and many enough for me to know that the way my voice translates to them is very comforting. And if that's what I've brought to this art form, then my goodness, I'm incredibly honored to think that's how they feel. And if my voice lies gently on ears of those that don't have their vision and they, they, they really enjoy that process in which they're taking in the media. Well, then I've done my job. Well, I hope, I don't think I'm always as good as I am at other times because the content and sometimes the scripts and things I'm working with, make it a little bit more dry and make it a little bit more challenging. But yes, when, when I respond to the question of how I've chosen to take on content. So I have also initiated, which is very exciting. Over the years, I've initiated programs in women, in film, New York women in film and television. I have created the first grants ever for finishing film Gramps for audio description and captions. And because of that, I see films that come past that I get to choose from. And I look at them at first, I look at them not because does my voice match them, but does the content match what I believe I want to stand behind and do I want to give this person a grant? Do I want to elevate this message to those that don't have the vision? So most of my content is about truth telling much of it, some of it not, and some of which I'm very good, well suited for in other ways, but I am hired to do this work as well. And I will often say to somebody, I don't think I should do that project. I have the luxury to do that, but many people are doing this and doing this day in and day out. I do this in combination with all my other work and advocacy work. So that's how I chosen to do it. But because I work in the field of disability awareness and advocacy and inclusion, a lot of content that I've covered also is about disability subjects or those that have disabilities that are making media. So again, I'm up close and personal. So I consider everything I work on very intimate for me. I really want to get close to the media. And there was a time by the way, when many people would go into this work and again, going to do this work, and I have tremendous, tremendous respect for them often, they didn't see the films beforehand. They're watching the films and doing the audio description while they're there and they're doing it off. You know, they're, they're very good at it. I'm not so good at that. I'm much better at having the luxury and opportunity to watch this media and say, Oh, this is juicy. I can do this. I want to do this. And so again, I'm a little bit different that way, but now because of the virtual world media, of course, some people are working with media at home and they're doing a lot of this work from home. So they're having the opportunity to watch some media. So things have shifted in that way, but I don't have that gift to go and dry. I wouldn't, I don't think I'd sound very good by the way  

[Doug]: That is quite, yeah. That is quite challenging. I imagine that's a really special skill set that if you're going to do that at a high level, I, I can only imagine there's a small handful of people that would really be able to do that.  

[Michele]: Well, it's going, it's like going in for an audition. Are you prepared for that audition? Are you told everything? Absolutely not. Do I want to go in for an audition? No, thank you.  

[Doug]: Yeah. Well, but I'm wondering, you know, we, we've talked about how there's such distinct styles and approaches. Do you find that certain voiceover artists in this field start to get a following because people like their particular approach and, and voice and style and delivery,  

[Michele]: I would imagine. So I think there are people that are more familiar that are doing a lot of content of a certain realm that are known for it, and they recognize their voice. It's like an audio book, narrator, certain people like the same audio book narrator. I would imagine some like the same audio description narrator, and they like to follow them as well, depending on the amount of content you do. So I think, again, it's very personal, it's a personal choice. And some, as I said, I have voiceover artists that I hire to work with me for certain things that I know are the right people. And I cast very carefully who those people are. I'll give you an example. I did the Ron Howard cover Roddy documentary. And that was a very laborious process in doing that from an honor, by the way, the ultimate honor to work on a project like that. But not only was I dealing with describing the entire film as a narrator and all the text on screen, which was quite a bit because we're historically going back to his career, I also have to then audio describe all the opera lyrics, as well as all the subtitles of the Italian dialogue that was taking place. So I hired two Italian voice artist, one to do all the opera supertitles and a female to do all the subtitles. And I narrated all the rest, lots of work to work. So I pick and choose those people specifically. As far as who I, who I think would be well-suited. So what's interesting for me is I'm not only a voice artist doing this, or however you want to call me, call me whatever you want, just as long as it's nice. I have worked all sides of this other than sitting behind engineering this and working in that area and editing it and mixing it. I have worked all sides of this, so I understand all the different sides, the casting, my work, everything that comes into play here. So I have a very rich, full sort of full circle experience around what this has been over seven years. And I've moved into different areas of it as I've moved forward in it, and I will continue to do so. The other thing I want to mention to you, which most people don't talk about there is also when you go, when this work is done and they're mixing the audio description into the actual media, not the audio only, which is specifically for digital cinema packages. At some point, some people use it for other streaming things, but let's just say for purposes of this conversation, my particular editor, and who does the mixing and the engineering is actually leveling out the sound so that I'm not too loud, the contents not too loud, and that we're coming in and complimenting each other. And we do the best we can. Sometimes we're also moving some of the media, they use the stems, which is part of, that's probably not for most people to hear about, but the stems is where the reading sound and we're using those stems to move a little bit of the media to give room for a little bit more. So there is an art form just in that, but that's a whole nother conversation, but I think I'll throw that in for the mix today.  

[Doug]: So with the last like 30 seconds or so we have here, are there any, any closing thoughts you'd like to share?  

[Michele]: Oh my goodness. I think I'd like to, first of all, thank you so much for having me and allowing me the opportunity to talk about this as much as I possibly can. And thank you for the work that you do. I don't think your listeners probably know that I did a project for Helen Keller. I took 25 students to see School of Rock on my dime, the live Broadway show with the audio description headsets. I took them to a lunch, a private luncheon with some of the actors there to tell them about careers in the world of performing arts. And it was probably the largest contribution I've ever made for one single day event. But thank you. And thank everybody who spreads the word about audio description and consumes it and shares it with those that have vision or don't have vision or low vision, anything at all. Please keep talking about it. The more you talk about it, the more we're going to learn.

[Doug] Well, thank you, Michele so much for joining us today. It was really, I mean, I've been curious to get more into a really in-depth discussion about audio description. So it's a privilege to be able to do it with you. I certainly learned a lot today, and it was just, yeah, it was just great to have you on, I hope to continue to stay in touch in the future. And absolutely. And thank you of course, to all of you who tuned in today. We will be back next week for our final Feeling Through Live of the year, being that we'll be headed into Christmas right after that, and then the new year. So we're looking forward to that and until then have a great weekend and see you next week. Happy holidays. Bye. 

Feeling Through Live • Episode 33: Education Advocacy for DeafBlind Children

[Doug]: Welcome to episode 33 of Feeling Through Live. I have the distinct pleasure to be joined today by Nilam Agrawal.  And, you know, on the bottom of the screen right now, it mentions your association with the national family association for Deaf-Blind. But that's only because we couldn't fit all the other things that you do too. So, you know, why don't we start off by you just letting people know some of the other things you do in addition to being a board member of the National Family Association for Deaf-Blind.  

[Nilam]: Hi Doug. Thank you so much for inviting me today. It is an absolute honor, and I feel very thankful to have this opportunity to come and talk with everyone here. My name is Nilam and yes, in addition to being a board member with NFA-DB and be the co-chair for the outreach committee, I'm also the ambassador for Usher Syndrome coalition. I'm also leading the two FC Family Community calls for Academy Krieger workroom. So all in all, I think I am very excited to have this unique opportunity to work with different organizations and be a part of their advocacy and awareness work.  

[Doug]: Well, you know, again, we've been talking about having you on here for a while and I'm so glad you're joining us. We we've had the pleasure to get to know each other over the last year plus, and I know there's, there's a lot of great stuff to get into, you know, today we've titled this episode Education Advocacy for Deaf-Blind children. I know, as the parent of deaf- by the way, does your son identify as Deaf-Blind as well, or I just, I know that's, we've talked about there being a distinction between your, your daughter's needs and your, and your sons. How does your son identify just so I can get that  

[Nilam]: And identifies himself as a Deaf individual. He really does not identify as the Deaf-Blind yet,  

[Doug]: And your daughter does identify as Deaf-Blind  

[Nilam]: My daughter does yes.  

[Doug]: Certainly we'll be getting into that, the heart of that shortly, but kind of before we hop into that, you have such an interesting journey to get to, you know, us sitting here talking today. And, I know part of that journey, is a journey that has taken you around the world. Can you give us a little bit of context of that and kind of what life was like before the birth of your children?  

[Nilam]: So, Doug, I was born and brought up in India and, yeah things when growing up was so much different for me, in India, the way I was grown up, I never had an opportunity to be around children or individuals who have Special Needs are, had any special needs or differently abled students in my classroom. So, I was just a normal, happy-go-lucky kind of person. And, I am the first learned from both of my parents family to go for a post-graduation to eighth grade, I did a master's in business, and I had a career in business development and recruitment, and then being moved to India. It was for my husband, from India to U.S. for my husband's work. And after a year or so, my son was born and things were not looking like normal book with him, but we did not have any idea about what we are looking at. And, really again, had to move back. So when you are in a segment of a global working population, you really do not have a home. You go where the work takes you. So after being in U.S. my son was born and then he was six months old. We had to go back and then we came back again to us, and that is us to the second move back to U.S. After a year, we started seeing certain element of his differential helped me, I mean us, with my son, it was in 2008. And actually the first time we experienced that was in 2007, my mom and my son came down with unexplained fever as suddenly he was attack sick. He was like a newborn baby. He lost all his motor muscles. He could not lift his head up. And I had no idea. My husband had no idea because neither of us have ever been around a child with different health needs. So we, we were lost and it did not help us that we were newly immigrated in a way to this country. If we had no roads, no friends, no families and people trying to navigate the system and trying to understand everything. It took us over here. And by that time he came to know that he has started losing his hearing and some amount of Myopic Astigmatism was involved. And the tax sale continued, even though he has been able to gain a long lot of lost skills. He still had some amount of attacks. So I remember we went to Duke that time we were in North Carolina and the doctor there, we started investigating the common causes for hearing loss.  They screening for connects and screening for Usher Syndrome, but, you know, a particular mutation was not identified. So we were given that diagnosis of mitochondrial disorder. And there I was in 2008, absolutely no idea about medicine, because till that time, the only time we had to go to the doctor wasn't down with cold or fever and trying to just navigate and understand. And I, you know, it's so strange when you asked me to tell me who I was and what I was before I became a mom, because it feels like a lifetime ago. I am so different. I think the parenting journey was literally a rebirth of me and trying to identify myself as a new person. So in 2008 November, I remember when we finally got to know that he has a mitochondrial disorder, for the first six months we were lost. You know, because during that time when the diagnosis is given at such an early age, children not have very good prognosis, they do not have very high life expectancy. And I think the biggest thing for a parent is to know that your child will not outlive you. And, you know, this is where I have told you this, when Pharaoh's was saying that it literally made me cry because just like Pharaoh's we thought that I just want to live one day more than my child, because the fear of what may happen to them, if you're gone, especially in a foreign country, it might be their home country, but it is still a foreign country for us because I am a first generation immigrant here. So I did what I'm doing right now with the shared community. And I think my first journey with especially parenting and being with family leader organization started with United mitochondrial disease foundation. The mitochondria, this is nicotine, is such a strong, friendly, and supportive community. I learned a lot and, I grew a bit, the organization, people were welcoming me with your resources, your experiences. If I was scared, if I had questions, they would try to guide and support me. And then I found myself being a co-leader for the tar target chapter. So that was pretty much my, my life. I think that just as early as I can say my life before I became an Usher parent.  

[Doug]: And, you know, thank you for taking us through that. I'm wondering, just to kind of go back to what you were saying about prior to the birth of your son, and then the later the diagnoses, knowing very little about certainly any, anything that he was diagnosed with, but like the disability community as a whole, what was it like for you initially as far from the standpoint of, you know, having very little knowledge and understanding of that world and like, where were you getting your information from? Did you feel like you were able to get the information you needed to start to understand it? How did you start to learn about alert learn about these topics that you obviously are very well versed in now,  

[Nilam]: You know, when Barron walked out of the doctor's office, the first feeling that we have this such we are drowning, but we are desperately trying to put our children up on a shorter and let them breathe. So that is what they do. And at that time, and you're so desperate not to drown, and even if you're drowning to not to let your children down and trauma with you, your check tapping into all kinds of resources. I think for me, it can be even more important because I was always aware I do not have a family. I do not have anyone around me who can take care of my children. I did not have anyone who could guide me, who could support me. So I had to figure it out everything and Google internet. It was not very developed 10 years ago. And, I think I was very fortunate that at that time we did have this community growing into the mitochondria, fill it with U N B F, so I reached out to other parents. Parents are the most resourceful that you can find for any special needs community. You know, whether it is Usher Syndrome, whether it is Deaf-Blind as a whole, whether it is mitochondria disorder. So that was one source for me then, internet is a wide ocean. There are lots of information there. And when you go there, it is very overwhelming because there is no sector. And if I can say one thing from my experience, it just that it just never keep two extra tips. It's somewhere in the middle. But when a parent is given that diagnosis, they really do not know what, what that middle is. So, you know, if you have that clarity of taking away the extreme end, and then connect with the community to collective experiences, you will gradually start understanding more and more about the pain, but it is not easy. And it is not like it's a switch which goes on and off. It is a learning process and the errands support each other. And I think our motivation is that we can benefit others who are our own learning curve so that everyone is not stopping at .0.  

[Doug]: So you talked about parents supporting each other through this. So at what point did you start to feel like you had like a sense of community in this space, perhaps with other families in a similar boat and what was that process like?  

[Nilam]: Actually again, Doug, I think you got two parts to that. It was the first part is 2008 to 2017, 2017, December 2nd. I remember I was in flight. I was going to visit my sister in California and my plane landed, and that is when our geneticist called me and said that your children have Usher Syndrome. So, if I look at the first segment of my life of nine years, I think, it was not just, I cannot pinpoint to one particular point where I have enough information that I can share with the community. I think it comes more about your own passion, about how much you can share with the community as you learn along the way. So I, to not think there are any, there is anyone in this field, we can say that I am the authority and I know everything conclusively. I think they all work together beyond reach out to each other and we share a numb from each other, and then we pass it around. So I, I do not know if it answers your question, sorry.  

[Doug]: Can we go back to the birth of your daughter and kind of where you are at, in your journey with your son when your daughter was born and what that was like?  

[Nilam]: When we were one year into the diagnosis of mitochondrial disorder, but my son, when we found out that my I'm pregnant with my daughter and her book was very complicated. And she had me Meconium Aspiration. She almost did not make it. And she was on ventilator. I'll need to stay for three weeks. So things that are very different,  we did approach her with the understanding that she also has mitochondria to solder, especially because she has an unexplained traumatic birth but things were not fitting in. We were trying extensively to find the mutation, but even not typically to identify that my daughter again had global developmental delays she aimed on with unexplained high fever when she was 21 months old, she brought it back sick. She started losing her hearing. And then it just so happened that when she was putting the months old, she came down with H1N1. She very, very sick that time. And she was on ventilator and she came very close to not making it. We were very lucky that she fought. She is such a feisty spirit of the girl, but when they took her out of the ventilator, that was the first time that we realized that she has lost her operation. So for the next three weeks, she was totally deaf and totally blind. And we were not able to understand this was also the time that we had moved back to India for three years again. So she, when she was six months old, we had moved from North Carolina back to India. And it just so funny to say, in hindsight, that people would think that you were born and brought up in that country, they would be comfortable, but as a special needs parent, when I moved there, I literally felt I have moved to a foreign country all over again. There will be, we were trying to understand what is going on and no one had any idea why she suddenly has a total vision loss. And what is so strange is that, you know, just like my son started regaining his lost muscle skills. She's talking to be giving her lost vision by being able to see in low light. I can, this is interesting as a parent because you know, like I did not understand about hearing loss. And I did not know about mitochondrial disorder. I did not know anything about visual loss for my, with my daughter. And, you know, in my head it was not making sense that in the darkness she can see, but she can not see anything in the light. I mean, how does it work? And, you know, till that time, I was not even aware that blindness is not an absolute condition. It's a whole spectrum. There is photophobia. There is rod cells, cone cells, there is night blindness, all the different element of that. And then up, I just knew that the adopters or not will swing the right direction as a mom. I always had a good feeling that they are missing out on the piece of the puzzle, but I was not educated medically basically together myself. So, yeah, it has been an interesting journey because she was given multiple diagnosis. She was said that she has a Retinal Retinitis Pigmentosa that says she has Retinal Myopathy. Then she was said that she has got a good visual impairment. It was like, okay pack your bags, now you're not going to stand here anymore. You're going to move to this space. And then you have to move from this place to another place. And we were lost, you know, we absolutely had no direction. We had no clue and we did not know what to do. And I think that is the time. We were also struggling with my son's education in India. He was in a mainstream school environment in India. The school setting is much different than in the us. And most of the students, they go to private schools there. And the school that we were sending my son to, it had a resource cell, but for them, Special Need was only learning disability. They did not even think that they might get a student with hearing loss and they need to create infrastructure or him though, we was struggling a lot with his school. And I was basically involved with this education hundred percent, which was my responsibility. And we were taking the curriculum from the school. And I was teaching him at home. I did medical presentation of my daughter, who was a big puzzle and no one knew what she was and why is she has, and I think that my husband made it a motive for himself to find a project here and get a job here and move here. And that is how we moved back in 2000. It has been an interesting journey even after that, because once we moved here, same problem of moving and finding yourself in an alien place because I was in not Caroline, but now we are in Dallas, Texas. So it's a new Yukon. It's a new country, literally like a new country for me. Right? I do not know the doctors. I do not know anything, anyone. So we were still navigating through the system and trying to latch onto whatever resources and help and information we were getting in the processes. I should syndrome death. Time is flustered. It's not anywhere in our preview. You know, it was not in the umbrella. We had no idea. We are looking into that. And you have some classic things, Doug, which, you know, we will disclose as the conversation goes on. I think one of the reasons I am associated with so many different organization is that I have faced this challenges in my own life that our children are so complex. They are like different layers of onion and you have to play it out. Totally understand what is inside that what we understand about usher syndrome right now, it's not all inclusive. And I think as we study more and as we get and connected with the creative community, we realize that there's so much more that we need to find out. So for my daughter there are a few classic triggers, which no one could add. Every time she would have high fever, she would have had a simulation and no one could make any sense because again, misses a child which can not be put in a box. Okay. So it's not a C shirt. She's not getting that. This is not that mitochondrial disorder. What is it, but who is going to think, what is it? No one has the time to invest themselves in thinking about what it is. And it took us five years to find that one tutor who thought they have to invest themselves to find out what it is. So it was one of one such episode in 2016, when my daughter was hospitalized with very high fever and she had an episode of how simulation and we found a wonderful doctor at children. And she said that, you know, I wanted to the genetic testing once more because it just not making sense to me. And I'm not okay with that. And I'm so thankful for that doctor is saying that I'm not looking at that. I'm thankful for her us to know that it is important for a parent to get back for sure. And to get the right type gnosis. So it took us finally one year, but after that, we finally found the correct mutation. My kids have cost's mutation, they have type three, B is a R S and type three B notations. So that is where we have. So it was again, a new word which opened up for me. And I'm being very honest. I really had no idea what Deaf-Blindness is. I did not know anything about usher syndrome till that time. So, but I knew that finally thing, no destination, I was happy that I am not going to worry every time my children get sick at one or more organs will get involved. I do not have to worry that my children will not outlive me. Hopefully they will. And, you know, and I know that I have to focus my energy in understanding about syndrome and Deaf-Blindness. It also brought in the fear because so far the vision need was only for my daughter, but now I know that my son on still has the same condition and it is progressive. So sooner or later, his vision is going to get involved with just to not know, to what extent and when,  

[Doug]: You know, one of the things that keeps coming up for me as you're talking is there's kind of always being on this very unsteady ground, right. Of getting so many, having such questions for such a long time of like what even the diagnosis is, you know, maybe getting misdiagnosed, kind of going down all these different tracks that maybe you hit a dead end for a really long time. And then the moment you get, you maybe learn a little bit more about it. There's this whole other world you need to learn about while also advocating, starting to realize that, you know, no one's going to like put the time and energy into discovering what your children need more than you are, and this experience of you needing to get really okay. With kind of constantly being on this, like unsteady moving ground beneath you, did you feel like at some point during this journey, have you been able to find, you know, a footing, feeling like you're really feel like you're really stable in an unstable, constantly shifting environment around everything that you've navigated with your children. Do you feel like how, how has that part of your journey been over the last number of years that you you've been in this space?  

[Nilam]: So I think every time I thought I'm feeling comfortable, life decided, okay, I am going to throw in a surprise for you, but I think finally now I feel I have reached a point when it comes to my children's needs medical Academy, and I have a very good understanding of what they need. I know that this is my certainties today. The only thing they know about life is that it's constantly changing. So what I understand right now, it makes me feel confident, but I do not know how it will present itself in the future.  

[Doug]: We have a question here from Jeff Cook and he asks, he says, "Neil, can you share about your feelings as a Deaf-Blind parent at your first IEP meeting? With all these professionals talking slash telling you what they've experienced with your Deaf-Blind child, some of them in the mainstream schools have never worked with a Deaf-Blind student in all their careers, and they're telling you about your child, et cetera. How did you feel and deal with all of that? And first off, can you, can you just tell us what an IEP meeting is?  

[Nilam]: So IEP is the individualized education plan and every child who has a different learning needs has been given the right by the government to have an into, to individualized education plan that is designed to address the unique learning needs. And yeah, Jeff, that is a very beautiful question. And I do not want to hurt anyone's feelings, but I'm going to be very honest with you because there are two different approaches and feelings now that I can share. But the first time I walked into the IEP, but my son I'm being very honest. We got very good accommodations. We got everything that he needed, but it was also because we were going to the regionally based school for the deaf. So they are equipped. They have the right tools and resources to eat it to the Deaf or hard of hearing child in a mainstream school environment. And with my daughter at the same time, then we went up, I trusted them. I relied on them. Like I said, we were mentally at a very different space. I was still trying to navigate the medical part of it. I was trying to establish the care and understand what to do everything. So I believed what the school wants me to with her is in her best interest. And I'm very sure initially she bought everything that she needed. And I'm very grateful for all the efforts that the teacher and the school system has within her. However, this question also brings me to our current experience and I'm thinking, this is something that will resonate with each and every parent who has a Deaf-Blind student in a mainstream school environment. It was very important for us to understand and very humbly accept that when we have one desk line student in the classroom, and we have worked with that student, that one student that we have bought, but they can not take that plan. And we can not take that learning and put it blindly and apply it on another child. It does not work like that. And each side has a very unique learning means and they present their unique ways. So we have to be humble enough to understand that we need to keep coming back to the drawing board and look at that child. And the IEP has to be designed with giant led needs. So having a fight, norming media placement done for that child who understand that we collaborate, we communicate, and we build a team. If it's working together in a cohesive matter, look at what are the missing skills that the child has and how do we get you through that? So that becomes very important. So I think off late, I have realized that our team has missed out on those opportunities and my experiences right now. And I go to the IEP is more often an whelming sense of urgency that we need to figure this thing out because I'm just running for my daughter. Why we thought out we can put all the systems, we can put the bells and whistles in place, but she is growing up. And what is very important for us to understand being a parent of a Deaf-Blind child or being educated of Deaf-Blind student, is that it is just a deafness. It's just not that I'm, this, it is a 12th sensory implication, and it present itself in a unique way so that if we to not keep checking on concept mastery this thing up getting wider and as such, I've moved from one grade to another, it gets even more difficult to fill in that cab.  

[Doug]: I'm going to just take a quick pause for an interpreter switch. Yeah. All right. All set. So, yeah, this is a really- I love this part of the conversation. I have a couple of follow-up questions, but before I get to that, a couple more questions from our viewers Jessica Mizel asks, do your children have interveners?  

[Nilam]: My daughter has an intervener, not my son. My son does not need an intrepreter. That's why he does not have, let me say that,  

[Doug]: That, that certainly makes sense. And then Divya asks and hi Divya also a close friend of feeling through live and a former guests herself. She asks, "how do you feel when you and your husband have big challenges in daily lives?" Like public accessibility travel, they cation, you know, anything, social family members, friends at big events or festivals. How do you feel when you have like big challenges during those daily parts of your life?  

[Nilam]: Yeah. That's such a beautiful question and so relevant. I think until you start living this life, there are so many aspects to that that we do not think of. You're not vacation planning is no longer pack your bags and go if we are going to a place, I have to make sure if the surface is that simple for her like my daughter is a Girl Scout and we go camping. And, you know, the first time I went camping, I did not know the ways she would need to be land far so that she can go hiking along with us. And then I realized that the trails are not accessible. And she would get bumped by a tree here or a branch there. Or if there is a loose rock on the floor, she might topple on that if it comes onto her feet. So these are learnings that you get as a parent, as you start working with them. And I think our vacation planning is not the same. And I wish, you know, there was some handy books that I would have God, when I came out of from doctor's office, this is how you plan your child's life. These are the things you have to do and different stages of fishing meat. These are the different things that may be want to be aware of. We have to have, like for her white cane, we have an attachment, which is for daily use. Then her teacher gave me a special attachment because we were going to a small areas. I can go on the snow surface, going out during low vision, sorry low light areas is a struggle. I have to make sure that I'm holding both my children's hand either I am holding both of them, or my husband is holding both of them. You have to make sure that they are able to move around traveling. You know, we have to plan extra time for traveling in the airport so that we can go through the, I, I think there are so many fine things. Like my daughter cannot go to a regular movie theater and watch a movie. I did not know that she could not see 3d movies. It was a big learning for me. Closed Captions, making sure that if you're going to watch a movie, we go in advance, we get a full scaption device so that my son can read that. So accessibility continues to be a big issue. And, in India, it's even more because here the infrastructure is set up in Intel. We have to create that infrastructure. We have to create that awareness. It's really sad that the government of India did not even recognize Jeff blind as a condition until I think it was somewhere around 2012 or 2016. I'm sorry. I'm not able to remember the exact year, but it just, as late as that, that they part, it is sort of low incident. We had really to not need to recognize. So if you cannot even recognize the condition, we can only understand how much work we need to create to, and infrastructure to support this individuals.  

[Doug]: I mean, just to speak to, you know, if you can't even recognize a condition, how do you even start to, you know, accommodate, you know, make accommodations in society and set up ways to, to really make that the world more accessible for someone with that condition. It makes me think again, I want to relate it back to education, advocacy, being something that's so close to your heart now. And I know you'd mentioned before the fact about you can't, you know, as, as an educator, you can't take one child, who's say Deaf-Blind, you know, figure out kind of the best way to accommodate that child. And then just duplicate that across any other child who's Deaf-Blind, because as you mentioned there's many different manifestations of that and many different needs associated each as many Deaf-Blind children, as you have, they'll have a very different experience with, with their needs, what making things accessible for them, kind of the best education experience for them, and really needing this more personalized, you know, tailored approach to each individual. I I'm, I'm gathering from what you've shared that that's often not the case. So, you know, as a parent and also as someone that this has really become a life mission for you, how, how do you start to change that? You know, how do you start to change a system and an institution that's not really set up to understand and accommodate often. I imagine your child and I'm sure many other children out there with disabilities, where do you start with that?  

[Nilam]: I think that is rare. You know, we have to create an infrastructure where we can collaborate together. I believe teaching is such a noble profession because definitely no one is going there for money. We know that, right? So we have to find that song where we can bring the educators and the parents and the family organizations together where they can talk and share their experiences, see the automatic team. And, you know, Auvik past presents a very unique situation for me, where I ha I could sit next to my daughter, for her virtual classroom setup and observe everything very closely. And my daughter is in a mainstream environment and she, this children are called proficient communicator, though. There is something better about that word. So we'll leave that, but we will focus on the advancement of the student and the main thing is that what happens is at the least of this classroom is not designed to address the unique learning needs of a Deaf-Blind student who is there and this children need individualized attention. They also need follow up. Then they need concept mastery. You know, we have to build some time to understand better if we understood everything or not. Are there any areas that we are struggling with? And, you know, it is a lot of weight to put on a student to come and tell us, I am not able to understand this concept because sometimes they do not even know themselves, that it is not okay. That is where the Deaf-Blind interviewer becomes so important because she is the conduit. She is the bridge between the teacher and the student, and she is simply shadowing the child, watching what the child is doing, observing their body language, understanding the unspoken words. And you're not supporting it from behind, but, the teachers and the interveners, it cannot freely communicate with the parent. They cannot tell them these are the ways we are struggling. The parents will not know what is happening with the child, because right now I had the unique advantage of sleeping next to her. I did not have it until now. And that is why so many other skills and struggles, even though I knew it did not make any sense to me. And since, and the same aspect I can medicine word. If there is no one who takes ownership, if in education, we do not have anyone who takes ownership about the success of this children. And there are so many news spots and so many different stake, or those who are not communicating and sharing, it's getting lost. So how do we create a system where people can freely share information and resources he can support and train the teachers. They can support and train the parents and create an infrastructure, which is much more beyond what we understand education to be like right now. And family organization, ciders, keep talking about them because I'm a big believer in the power of family organization together. We can do so much. And when we have a collective forum that different parents can come and share their experiences, I think it tells the educators to understand the true needs. So yes, training and collaborating and sharing will be the way I think we can get done ad finance, because we can create everything. But if we do not have a program which is supported financially, we cannot implement that.  

[Doug]: You know, it's so interesting. You mentioning how your awareness has changed during the pandemic sitting alongside your daughter during her schooling and how much you've learned during that. Patty McGowan, you know, commented over here. She said, yes, you don't know what you don't know. And even with someone like you, who's obviously dedicated so much of your life over the last number of years to really understand your children's needs and advocate for them. Even you are still learning exemplified during this time during the pandemic where you're really learning that much more intimately about your daughter's education process and how to better accommodate it, you know, to follow that up. And you were starting to talk about this, but Patty also asked during COVID and online learning for your children, know what lessons have you learned that you'd want to share with other families?  

[Nilam]: I think the lesson I learned so far with my daughter has been that mom's gut feeling is always right, and I should not second guess myself. I, I always feel that people who are professionals, they are better equipped and have more information about my child's need than I do. But when I sat next to her and I observed her closely, one thing that has been bothering us for, with my daughters since she has been in first grade, is that she has not been able to learn to read. And every time we brought it up with the school system, we were told, you know, she can not see well, so she can not learn to read it. It's all because of her vision. No, it just not because of her vision. It is because she needs a different way of teaching. She needs that extra layer of attention. And I could do that with her in spring when I started working with her to the beginning of the school grade here, she had gained two reading grade levels. I am just a mom, not a trained person, and I could do that, but it also reiterated that a child is a child and each, and every child can learn. And if we are not learning the way we are teaching them, maybe we should teach them the way they would learn. So I think that has been my biggest funding.  

[Doug]: It's so interesting that you say that literally just this morning shortly before our conversation right now, I saw an article about a young woman with down syndrome who went on to be an amazing student. I think she was the valedictorian of her high school and has been very successful in her education. But she really had the main hurdles that she had growing up were so many people saying, Oh, you can't do this, or you're not going to be able to do that. Something that's echoed. So often on this platform by a lot of people with disabilities is often one of the biggest challenges is overcoming all of the people that say, you can't do this, or you can't do that. And really just closing the door on it before there's even been an opportunity to try to, you know, figure out a different way of going about something that would lead to success. So, you know, certainly you, you just encapsulated that as far as the tendency sometimes not necessarily from, you know, anything other than just, having a lack of understanding and education, but by from institutions or individuals to just go, Oh yeah, just make assumptions as to why something's not working yet. And just kind of write it off and as you've exemplified and certainly learned even much more. So during this time being home with your daughter and alongside her, as her schooling is that, Oh, no, there, there are things that you can do that may be, just have not been identified yet. And I think that's such a, such a valuable thing for everyone to understand, you know, cause obviously you as a parent have to understand that because you're the one that's going to be there fighting for your needs. Like no one else will, but for other people to kind of understand, okay, in a situation where I'm, you know, I haven't encountered that often. I really need to dispel every assumption I might make and just throw them completely out of the window because they're not going to serve you in any way, because ultimately what you're going to be doing is probably closing the door on something that, where there's, there are plenty of options there, you just haven't ever been in a situation where you've needed to figure them out yet. And I think that's just such an important part of advocacy on your end is getting people it's not just like finding the solution. The bigger step feels like just getting people to understand that there could be other ways to do something that we just haven't explored yet. And that being almost like the largest barrier there. Interesting follow-up question here to part of our discussion from a moment ago, Julie Meyer says, Neil, and I'd love to hear how you and your children's educational teams have supported your kids. Self-advocacy do they attend and actively participate in their IEP planning and meeting? Do they take part in identifying annual goals?  

[Nilam]: Yes. Oh my God. Both my kids have done so amazing. So my son, he has been truly blessed. He has got such beautiful IP team year after year, and his middle school team leader. Hi, Ms. Tidbits. I don't know if you're here or not, but she has given him very good advocacy for it, she invited me to IP and told him that it is important for you to start taking charge of your education plan and start advocating for yourself and designing uncle's doctor. Again, she is a fierce advocate and you have seen so many of her videos and all, she has a voice. She knows what she needs, and she can ask about that. And I have a big gratitude for her VI teacher who sadly is not working with her anymore, Mrs. Mallory, and she implemented those skills for her. So he or she can advocate for her knee. She can see whether something is accessible or not, whether she can see it, but not. And if she needs any changes to that, 2020 was the first time I invited her to attend her art meeting. She's 11 years old. She was 10 that night. So I'm hoping that she'll continue to do that. What I want to say is that I know Krishani has been struggling a lot with the virtual platform. There have been many ways we realized that her ideas were not getting implemented. Her modifications were not coming her and adaptations were not happening. And she was very frustrated because she was running from one teacher to another teacher and I'm asking them, I can not see this, and I cannot understand this and you please tell me again. And I, it's not fair for a 10 year old child to go around and ask to help me. And then I said you'll have to come to the IP and you have to tell them what you're struggling with. And that night when she slept, it was couple of nights after pack and she hugged me tight. And she said, mommy, I want to say, thank you to you because you invited me there. And it made me feel like matter. Doug I cried so much after that because she always matters. And you know, I am very happy that she knows that. And as a parent, we always have only one motivation that the one might give up on them. They do not have that option. We are never going to give up on them and you should never be, never see themselves as a child with certain medical diagnosis are unable. Deaf-Blindness is a part of them. They are so much more than that. So to giving them that direction and protect your psychology and confidence was important. And at that moment, when she told me that, I said like, I read him to myself. And I think she knows that she matters.  

[Doug]: Julie followed up with saying that, you know, this is so great to hear. I think supporting self-advocacy as early as possible is the way to go. And you know, something that also comes up often on this platform and, and your discussion is reminding me of is the fact that look clearly we want a world in which all of what you're discussing around, you know, specifically your daughter's needs in an educational environment or beyond that in the world as a whole should be better understood by an accommodated by everyone everywhere. We certainly are advocating for a world like that. But one of the, when you have a support system, like you've created for your daughter being alongside her, you know, every step of the way, and certainly creating a network around her to help with these issues. One of the kind of silver linings, if you will, is a child to again, get so good at advocating for herself so early on, and some of the extreme obstacles and challenges that she faces that might be different from a lot of her peers are things that with the right support system can really serve her later on. Because, we talk often about, you know, during the other month where it, where it was national disability, employment awareness month, you know, one of the things that makes people with disabilities such great employees is that they've already had to overcome challenges and obstacles every step of the way of they're just living their lives that they're often able to do. So really well in a job setting, because it's just a skill set that's so well worked for someone who, where the world isn't quite as oriented for them in its current incarnation, as it is for, you know, a lot of people in the general public. You know, I'm wondering, and like you said, I've gotten to see some, some videos of your daughter, and clearly she seems like a extremely intelligent and, you know, someone who's not shy to speak up for herself in such an amazing way. I think beyond her years, I'm wondering what, what are, what goals of, has she expressed to you for the future and does she have a career goals or does she see herself in certain professions moving forward?  

[Nilam]: She wants to work for special education all around the world, especially Special-Ed Community goals, as she says that her dream goal, you know since she was six years old. That is when she first read about Manana and has been so inspired by her. So she wants to be a teacher and she wants to focus on Special Education and let everyone know that if a child is not succeeding, it is a failure of the adult and not the child.  

[Doug]: I love that. That's well, I'm sure I'm sure she's going to be an amazing voice for the Deaf-Blind community moving forward. And just again, getting to see her and the ways in which she's learned to advocate for herself and such a wise and intelligent way that I'm sure that she's going to be able to, to achieve her dreams that she has with the last several minutes we have here, you know, I'm wondering if there's anything that we haven't covered that you'd like to talk about. I mean, I know again that your, your life takes you in so many different directions. You're a part of a lot of different organizations. Is there anything that you'd like to touch on that's coming up for you that you'd like to chat about?  

[Nilam]: I wanted to reiterate that family organizations, the strength of collectiveness, I am so thankful for the opportunity that I have received through NFA-DB, Usher Syndrome Coalition, and my involvement with local state chapters. I think they have understand that the world is very small and we are all interconnected with each other. And aren't, I thought the diagnosis in 2017 off or shift syndrome, if it was not because of the resources and I found NFA-DB or the usher syndrome coalition, I would not have known so much. I think my only sharing for most of the parents who are starting this journey is that reach out you're are people, there are, there are organizations there who are senselessly working bar creating this system and they are trying to support. We are not trying to put blame or anything on anyone. We are trying to collaborate and we are trying to support each other. And yes, I am very proud of the work that we do. And I have learned a lot, and I know all these wonderful people at so many different places, one doing tirelessly so much work, so connect with them, talk to them. I also wanted to say that the TSP symposium is coming out because you were talking about what is coming up, it's in March. And then our mission is on the DB website. It just there on our Facebook page. So please come and look up. It is related to education and Deaf-Blind children education and, you know, things. So it is very relevant to what we are talking today.  

[Doug]: Well, I think that's, that's an amazing thing to wrap up our conversation for today and really so, so happy to have you join us today. So happy to get to talk about your, your children and, and everything that, you know, you all the ways in which you've overcome a lot of challenges with your children to have two amazing children who are, who were certainly well-suited for lots of success in the future. I'm sure a lot of what you shared really resonates with a lot of other parents out there. And I really enjoyed speaking with you today.  

[Nilam]: Thank you. Same here. Thank you so much for inviting me and giving me this opportunity, Doug,  

[Doug]: And thank you to everyone who tuned in today. We will be back next week, same time, same place with an episode and continue right up until the holidays where we'll, we'll probably take a little short break there, but join us next week as well. And thanks everyone. Have a great weekend and week ahead.  

[Doug]: Okay. 

Feeling Through Live • Episode 32: Media Access Awards

 [Doug]: Welcome to Episode 32 of Feeling Through Live.  

[Deborah]: That's my age, I'm 32.  

[Doug]: Oh, well what are the chances, look at that. 

[Deborah]: I'm kidding.

[Doug]: We’re already off to a great start here.

[Deborah]: Are you kidding?

[Doug]: You know, Debra, I'm so excited to be able to talk to you really at any time, but today especially because it's the day after the media access awards, which were last night, which were incredible.  

[Deborah]: Thank you.  

[Doug]: And I'm so excited to talk about not just the awards itself, but the history around it, your involvement, and, you know, a lot of amazing things that you've been able to do. I'm going to read just a little bit about you real quick, but then I'd love to hear from you, but just for everyone. And again, it'll be better in your words, Debra, but the media access awards are dedicated to the accurate portrayal and employment of people with disabilities in all media and, Debra in addition to being the chair and producer of that award show, she's also the chair of the diversity committee, for the producers Guild of America.  

[Deborah]: Sorry, was till last year.  

[Doug]: Sorry, I was reading an old bio for you there.  

[Deborah]: I know, It's my fault.  

[Doug]: So it was, are you still the chair of the Women's Impact Network? Are you still part of that?  

[Deborah]: No, that's, you know, actually, the Producers Guild has gone through a restructuring of all the committees. So while I did that for about 14 years now, it's everything is under one committee called the One Group. So it's an umbrella thing and the media access really has now is so much of my focus that I, yeah,  

[Doug]: And on that note is a very serious undertaking, but why don't you in your own words tell everyone what the media access awards is.  

[Deborah]: So the media access awards, was launched, created by Norman Lear and a producer named Fern Field in 1979. And it was to celebrate the portrayal of disabilities in media, but if you think back, or if you think of 1979, there was no disabilities in media. So there was very little to celebrate and, they were just really ahead of their time. And, you know, but still the awards existed for many years, but eventually people moved on and, the funding was lost and sort of the media acts had ceased to exist. And in 2010 as I, the producers Guild of America diversity chair, together with my counterparts of the different guilds we had done the first ever, sort of coming together of the guilds when we did, the women's international day in 2010. And it was such a great experience of collaboration where the writer came from the writers skill, the producer came from the Producers Guild. The actors came from SAG-AFTRA, it was directed by someone from Directors Guild. So it was a really organic and amazing collaboration. And we said, what else can we do? And October was coming up and we said, you know, what about disabilities? And we decided to do a one-off of the Media Access Awards, but, you know, it was a breakfast at the Peninsula Hotel here in Los Angeles. And, you know, each Guild put up, I don't know, $500 or a thousand dollars. And we rented the room, we got some coffee, some bagels, and we xeroxed the program. And as I'm sitting there and just watching this thing happen, I realized I was hooked and that was 11 years ago. And, I really, that was my first major involvement with disabilities advocacy. And I realized that there was a lot I could do for that. And there was a lot I wanted to do. And, you know, my husband had passed away in 2008 and he had cancer. And I remember how, you know, the sicker, he got, the more ostracized he got, and it was just like, it all came together in my head. And I thought, this is something I really have to do. And now it's turned into a very big event. And you know, and besides the yearly award celebration, we also do, we do, we wrote a best practices guide for the writers Guild in terms of like how to what's allowed by law on not when you're interviewing a writer with a disability, how to accommodate people with disabilities on the set. And, you know, it's a 10 page manual and makes it really easy for people to read and understand. We have also, partnered up with the Black List and the writers Guild disabilities committee, where we do an annual list of the best unproduced scripts that have a character with disabilities as one of the main characters. We do a series of online interviews, just the series of things and why we're focused on media is because I come from producing and my partner, Alan Rucker comes from writing, and this is what we understand. We also understand the power of media, when you sort of make something you bring images and storylines and characters into your own home. They become your family and thus not strangers anymore. And we believe that we can impact society by creating responsible content that really stood up normalized, the disability experience.  

[Doug]: Yeah, beautifully put and you know I'm just curious because I want to get much deeper into all those topics you just brought up, but kind of before we get into that, I'm just curious to learn a little bit more about kind of your personal journey to get here and kind of what brought you into this space or how you really got involved in this space?  

[Deborah]: Well, I mean it's like I said, it was like I really had to come from caring for someone for two and a half years through their fight for survival. I had been in many hospitals in different States and I had seen people do the same, and I saw how lonely it is when people are ostracized, and that really touched me deeply. And I am from Brazil and my family is a Jewish family in Brazil. They came from Eastern Europe. So I've been always a little bit on the outside, although, you know, just because of my personality, I never feel like, you know, it's like if somebody has a right, I have a right to, and period, but I realize that that's just my personality, not everyone is the same way. And sometimes people need advocates because, and I'm not better or worse than anybody. It's just the personality, you know? I'm just like I have a big mouth. So, you know, it's just a matter of personality. So I thought, I can use my big mouth for something, something that, I think it's really, really important. And you know, and that first year, when we did the media access awards back in 2010, it was just so amazing because I saw, you know, young people with disabilities, seeing themselves on a tiny stage being celebrated for their accomplishments. And I realized how important that was because we were helping those young people see themselves reflected, celebrated, and represented. And back in 2010, even there was such little representation. I mean, when we wanted to award people with a media access award, we were like digging really deep to find a writer or a producer, a director, a casting director, an actor who deserved to be awarded. I mean, it was really hard. There was like, Oh, you know, this is not exactly right, but that's what we need to do to get it moving. And amazingly, now we have, you know, it's like, what do you think of this? What do you think of that? Oh, now let's look at that. So there's a lot more, a lot more shows, a lot more movies, a lot more directors, a lot more writers, a lot more content for us to work at, which is amazing and really rewarding. But you know, 11 years ago it was like this really, we really need to call attention to the lack of representation of people with disabilities in media. There's very, there's like 1% and this is the largest minority, not just in the United States, but in the world. And if people don't see themselves reflected on television or film, they don't exist. This is the way we create culture. This is the way we create society. If we don't create tools for people to also participate in the exchange of, you know, points of view and life experience, we are robbing ourselves from a very rich existence. Every time we are allowed to step into someone else's shoe, we, we grow in our own personal lives and experiences. So it was like a lose lose for everyone, lose, lose for people that didn't see themselves represented in lose for the general audience that was being robbed from seeing and sharing experiences that were outside of their life scope. So anyway, that all of that I've just made me, you know, every year more and more sort of like figure out ways to get the message out, to get people involved. And, you know, I'm really be passionate about, you know, sort of changing the landscape.  

[Doug]: Yeah, you know, I obviously, I've been, you know, feeling fulfilling through platforms has been like the biggest part of my life over the last couple of years and have learned a lot through that process and certainly making a film that stars an actor with a disability, I've learned, it's been like a masterclass for me these last few years in learning about this space. And there's a lot of things that you just pointed out that are, that are so clearly important as to why we need more representation for any marginalized group, but particularly the disability community, which makes up like, you know, nearly a quarter of our population yet it's like 5% of characters on the screen. I'm in that, I think that number is starting to change a little bit, but like has been historically a tiny fraction of the characters that we see portrayed in film and TV. And then of those characters, such a small percentage have been played by actors with disabilities, which again is starting to change. But, but we're still far away from where we need to be. But I just think of as just purely from a storytelling standpoint, you know, as someone who, for me, at least in my stories, I always want my stories to reflect the world that we live in. And it feels so false to not include people who make up a large percentage of the people who you're going to encounter and who are around you. So I think just from that standpoint as well, and then there's something else that, you know, I know it is something that's really important to media access awards, which is not just the representation. It's how are those, how are those characters being represented in and are they being played authentically and are actors with disabilities getting the opportunity to play characters with disabilities? Can you talk about, a little bit about kind of the historically the function of characters with disabilities and how that feels like it's really starting to change, but can you, can you go a little bit into the app?  

[Deborah]: Well, I mean, you know, in the past, and this is just something that, it's not necessarily malicious, but it's just out of ignorance. Writers used to create characters when they were characters with disabilities that were either inspirational or, you know, sort of drunks and addicts, people wanting to commit suicide. And it was like, you know, the extremes of those two types of representation. And while there are people with disabilities that are depressed as there are people of color that are depressed as there are people, you know what, it's not a mandatory quality of a person with disabilities. And it's only a projection of the able-bodied people on to people that have disabilities. And again that's not a malicious projection, it's just out of ignorance because when we think of disabilities, the normal thinking is doing something wrong or a person with disabilities is less than, and it's difficult for someone who is not disabled to think that's just who that person is. You know, they're not, they're not, you, they're not, you know, this is who they are and they're complete and complex and, you know, and beautiful and ugly and happy and sad, like every other human being, and we all have our distinct experience. So that's something that we really fight against,  which is this notion people with disabilities exist. Do we inspire us into seeing that our lives after all aren't so bad, and it's really the object objectification of someone with disabilities. And again, that's not made, you know, that's not malicious behavior, it's just out of ignorance. So we really tried to educate people that you're just you're are, it's the reflection of your thoughts. It's not the reality. You know, each person has their own experience of life and you cannot, you know, just because you're different, you can't think in those terms. And it's interesting because a friend of mine saw a very close friend of mine, saw the media access yesterday, and we are very close and he said, I loved it. It was all perfect. But I really feel like it was, you should have had a song that's of hope of inspiration. And I said, exactly because of what you just said yeah. That we don't have that it was an award show. It was not meant to inspire everybody. It was just meant to be funny, moving in interchange, it's not inspirational, got to get that away from people's thoughts of disability, sort of the connection of those, those words. So, you know, the media access really cares about the portray of disabilities. And we really, really tried to make a point that you did not, you know, people with disabilities are complex, inependent, whole people that have different experiences. And it's not for the existence or the benefit of someone who is not disabled.  

[Doug]: Yeah, absolutely. And I think what's so interesting about storytelling it's so contextual, right? So it's like we're operating in a context where there's for so long, there's been so little representation for this community. The representation for a quite a long time was as you were pointing out in really in the specific ways you did not accurate or helpful often, and the hope is that, and I think what the media access awards does so well in, in not just highlighting achievements, for people with disabilities throughout media, but the way in which you put on the awards show, which is just like any other high level award show, it's not like it's the actual presentation of, it's not like, Oh, here's the disability award show. And let's like, let's like you said, have inspiring music. Like, you know, it's like, no, it's a high level award show for people with disabilities and stories about people with disabilities, but it's more about like that high level award show, just like any other high-level award show like that parody, but, you know, likeness to that, you'd see from the Oscars or the golden Globes, you know, and I think it's important for people who maybe are coming to the disability community and in this case, the disability community and media for the first time, and to have it look like other award shows they're familiar with, and to start to go like yeah it's not, it's not really that different from anything else, you know, and I think you do such a great job of how you put that on.  

[Deborah]: That is like my number one goal. This is an award show. How do you do an award show? You have to have entertaining acts. So I put this one, I went to two people that I think are amazing. Evan Ruggieno in New York was an incredible tap dancer. He happens to have one leg, but he's an incredible tap dancer. And it was in a, he sings. And, you know, and we created this thing about being on a rooftop and then being in a bar, you know, so it's like, it's super entertaining. And then Alan Silva, my, my fellow country, man, he's also from Brazil and he was in America's got talent. This last season, he was one of the five finalists. And when I saw his act or was like, I want him in the media access to award, it's beautiful. You know it's just like he is an Acrobat, an aerialist, and it's a beautiful act. And we're not making any concession for the fact that he's a little person, it's a beautiful act to a tall personal, little person, fat person, skinny person. None of that matters just a beautiful entertaining act. And that's what we want to do. Amazing entertaining acts. And then, you know, our host Nyle, DiMarco whose Dad was an amazing host. It's like impeccable, he's beautiful to look at. He is poised to be, he's so self-assured, he was amazing. And, you know, and then we give people tools to watch the show. It's all open caption and audio described. So, it's no big deal. We're just creating great content. And then we're making sure everyone who is interested has the ability to enjoy it.  

[Doug]: And, you know, this year was, was clearly very different from years past in that you had to move everything virtual and, you know, obviously being someone, myself, I have a lot of respect for anyone who pulls off a high-level virtual event, doing a lot of these live streams and virtual events myself. I mean, you really did such a tremendous job. It was impeccable and look beautiful from start to finish and was so smooth. Can you talk about, you know, what went into this year specifically, knowing that it was such a different experience from years past?  

[Deborah]: I mean, I knew, so when I do these shows, I have to. Press responds to celebrity, press does not respond to causes usually, press does not respond to writers or directors or producers. They respond to actors. So I always try to get some name actors because I want the press to write about the media acts so that the message gets out there, and then obviously honor and celebrate talent with disabilities. So it's always, you know, sort of putting these pieces together and that is any year just trying to sort of unite the idea of getting the message out there, you know, and also the sponsors want to make sure that a lot of people see their names and I want the sponsors to come back next year. So there is sort of a success attached to this because I want to continue to do this. And that's just reality, like it or not, it is the way it is. And also I want to always do something that is really good and respectful and has integrity. So these, all of these things have to come together. And then I knew that most people will be home. So I knew that presenters and recipients of the awards would be home and I would have to capture them like, you know what we're doing now, peer zoom or via some other app. So I thought the only way I'm going to get some production value is by getting a host to be on a stage. And when I started thinking about that, I thought, Oh, the host will be alive and we'll be cutting back to the host live. And then I thought, no, it's insane because the internet goes down and we all screwed. So let's then produce this as if we were producing a television show. So it's all prerecorded we'll go live when it's strange, but it will all be pretty coordinated. Once I decided that I wanted either a green screen stage or I wanted an LED stage. So I wanted to use like the greatest technology available out there to create, you know, a Kodak theater at Lincoln center, you know, have brains that production value to those elements, to the host, to the state, because I knew that's where I would get the production value. So I started calling them round and visiting different studios in Los Angeles. And then I came across this amazing and actually was a referral from my editor, Jenny Gold. And she, who's also a person with disabilities and I've been working with her for, God seven or eight years now, but we have a great working relationship. And have you checked out the studio castle studios now? Like I said, no, I went there and I was like, this is it. This is it. It's a green screen, but it's a real time green screen. So you create an environment. And then as you're shooting, you are seeing how the person is relating to that environment. It's not done in post-production. And it's really amazing. And I worked with the artists at the studio and we created the environment. So it seems like there's a lot of, I always say I'm all for bling. I'm always for bling. I think bling is good. So, you know, we put a lot of blamed on this set and a lot of colors and made it look like really big. And I think that's where our production value came from. And then I always have, entertaining or entertainment in media access. And so I've thought about two acts and, I went to Vegas and I shot Alan doing his aerial act. And then, in New York, I hired another group to shoot that because I could drive to Vegas from LA and New York was a bit much, you know, being that we're all locked up. And so we designed the performance over zoom. And when we agreed on locations and everything else, we just had that shot. And yeah, and we really worked hard on putting, so the video packages of the work of the recipients and really finding the, the scenes and, and the episodes that reflected why they, we were honoring them. And I think it all worked, it was just a very, you know, blast experience.   

[Doug]: Let's just take a quick pause for an interpreter switch.  

[Deborah]: Okay.  

[Doug]: All right, all set, great. Continuing here. Yeah, that was, everything looked so great, but that live green screen backdrop,  interactive backdrop for Nyle DiMarco was, was incredible. It looked so great. And again really, these are the things that elevate this award show to the award shows that, you know, everyone's been familiar with for a long time, like the Oscars and the golden Globes, it's that attention to detail and that level of execution, you know, that really elevates something like the Media Access Awards into that arena. And you know I think what we'll see, I know in the last 10 years since you've revived it, I know it's grown tremendously from that first one that you talked about, when you got it back up and going, and I'm sure over the next 10 years, it's only going to grow so much more to the point where, I think, people are going to continue to tune in larger numbers. And I think people are going to start thinking about it in a very similar way to like other, a major award shows that they've been familiar with for a long time. And I think, again, it's the prestige that you brought to it that in this case is so important. You know, a lot of times, you know, we, I know in a lot of responses we've gotten, you know, for Feeling Through, as you know, and anyone who's done any sort of film or TV where there's really positive and, you know, well, an authentic representation for characters with disabilities, you know, people get, are really praised the fact that it's like really elevating a community from a media standpoint that was previously not represented at all, and really not found again, Robert being the first deaf blind actor in a film to start in a film that was completely non-existent in how important it is. A lot of people in the community reflect back to us how important it is to not only have that representation, but have it in a way that's, you know, executed and exhibited in a really like on a really high level so that, people on mass can come to it and really have that communion with the story and therefore by extension with the community. And I think something that's, that's something that's often missing with the disability community as a whole is really having these special events around it, you know, and really elevating it to this really like high and cherish level. And that's really more than anything, what I took away from, from last night and watching it and, and just, I thought I was really stunned by it. I really was.  

[Deborah]: I mean, you know, I mentioned, just a little while back that I butt heads with Jenny. Sometimes I will tell her we need to lose two frames, two frames, it's nothing, but I say, I see it. We are two from Silva. We got to cut those two frames. It's like two frames. It's like, yes, two frames. And I think that's how you approach everything. And, and I, and again, there was, there's never any manipulation of like, well, you know, let's make this moment just a very matter of fact, you know, celebrate a beautiful of work. And I think that that is what really stuns people that are not involved with the disability community. It's how, like how normal all these interactions actually are. And one of the people working with me for the first time this year with actor Steve Way, he uses a breathing machine and he said, Oh, okay. So we're gonna cut the sound out from the breathing, breathing machine. And it's like, and I said, why he uses a breathing machine? You know, it's like, that's part of, you know, that's how he lives. There's nothing to cut. That's how it is. And because it makes you uncomfortable because you're projecting, that's your problem. That's not his problem. And it's not my problem. So, I think that is also what's so important about the Media Access Awards is the full inclusion of how people actually are in this world. And Steve is an amazing, talented guy for people that have not seen Rami. And I think Rami has audio description of the show. Because I think Hulu is one of the companies that have actually taking the great step forward to having audio described shows. It's a very funny show. It's a very funny show. And Rami does exactly what the media access awards does, which is normalized people's experiences. Like, you know, this is just the way it is no more, no less, nothing is just what it is and let's move on and live life, which is amazing and brutal for everyone on this planet.  

[Doug]: I love Rami, I love that show, and certainly, you know, Steve is so great on that show and their relationship is amazing. And like you said, just by it being like two young guys, just trying to figure out all aspects of life. One happens to be Brown and the other happens to be disabled but they're just doing their thing. And I think that the focus being on them just being two guys like anyone else trying to figure out life really goes a long way in giving people a much more insider empathetic connection to communities that they might not normally have really empathized and stepped inside of before and people that they haven't necessarily stepped inside of before. And you have such, you get such great talent to be a part of the award show. Like we were talking about Nyle, DiMarco hosted it. You know, you had interludes with Jimmy Kimmel and Andy Samberg and Joshua Jackson introducing Lauren Ridloff and all these amazing people. Can you talk a little bit about from the producer brain side of this, you know, how you go about attaching the talent and that whole process?  

[Deborah]: Well, Andy Sandberg, who you just mentioned, had given an interview to the New York times, I'm trying to think either, I think in September. And he said that one of the things that had helped him get through the pandemic was, you know, some incredible content that he was having the opportunity to watch. And one of them was Crip Camp and we were honoring Crip Camp. So it's like, you know, it's natural to get someone like him who talked about Crip camp on his own. We didn't have to introduce it to him. We didn't have to, he just saw that and thought this is a great documentary that talks about something that's really important. It was very genuine. So he's a nice guy, and he is, you know, someone that is in our popular culture, that is a perfect union, which is bring the mainstream to what we're doing, mix it all up and have a great result and sort of make it bigger. So that was, you know, Andy Sandberg and, Joshua Jackson had done children of the lesser God with Lauren Ridloff on Broadway and he actually learned sign language. And so it was natural for him. They have a beautiful relationship. And that was really the first big thing that Lauren did. So it made sense that Josh Shaw was the one introducing presenting the award to Lauren. So when we're thinking about, who's going to present an award, it's either someone who is part of the project or someone who is really meaningful to that person. We always also consult, with the recipient because we want them to feel good about who is presenting to them. I would never say, you know, you must receive your award from this person because, you know, if I want to make it special for someone to receive an award, it's got to come from someone who special to them. So it's like, it's a combination of all these factors. And then, you know, you tried to see if you know, someone who knows them directly, if not, you appeal to their, you know, their PR you explain what you're trying to do. And because I've been doing this for 11 years, I think that most PR companies now know about the media access awards, know what I do know that their talent always has a good time doing it, and they appreciate what I do. So it's not so hard anymore, but yeah, that's kind of the process we bring out, you know, those people that are meaningful to the recipient, meaningful to the show and making it happen.  

[Doug]: You know, you were saying before that often the press doesn't respond solely to disability-related topics and that they respond to celebrity. It's nice when celebrity responds to the disability community like that anecdote you just talked about, Andy Samberg. And I know very fortunately highlighting the need for more inclusion in Hollywood has been a hot button issue over the last couple of years. Certainly, you know, even going back to Me Too, and the way that started to kind of unearth a lot of inequities in a lot of things that have gotten a lot more shine since then. And I think inclusion for the disability community is one that certainly gotten a lot more coverage. There's still this need, like you said, to have big name people get behind that. And it's nice to see, you know, in addition to Andy Samberg and that anecdote that you just mentioned I have seen more, you know, notable actors speaking out. I think I saw something not too long ago about Ed Norton and Mark Ruffalo really pressing the industry to cast more actors with disabilities. So it's really nice to see those kind of organically some of those alliances and endorsements happening from, you know, from people who get a lot of attention and get people's eyeballs on certain topics. So it's, it's so cool to hear when it's someone like that anecdote like Andy Samberg of just like him. And again, another example of the importance of media that includes stories about people with disabilities Crip Camp, which is an amazing documentary that's on Netflix, which was rightfully so honored last night, is something that very fortunately got a lot of buzz. I know it did really well on the festival circuit before it went to Netflix, none other than Obama and his production company was a part of part of making it happen. And that's the type of thing where that's a story that I think virtually no one knew about outside of like a very small group of people prior to that documentary. Now, so many people have seen that, and then you get someone like Andy Samberg, who's talking publicly about it and then gets connected to the media access awards as a result. And it all kind of snowballs. And I'm sure you've seen a lot of that snowball effect, you know, if you go back 10 years to now, but you know, you were also talking about how, fortunately, there's a lot more competition now in the media access awards. And because there's a lot more opportunity than there was 10 years ago where you were kind of like, you know, really searching for people to honor just because there was so little opportunity there. So now, you know, how the award show, the 2020 award show having happened last night with some amazing people like Lauren Ridloff and Ron Rami and, you know, Crip Camp getting all awarded. How do you now go about selecting winners and how has that process different from when you started 10 years ago?  

[Deborah]: I mean, the one is just the. Oh, do we award Ryan O'Connell with special, or do we honor Rami? Or, I mean, now it's like some really great shows and, it's just exciting to, you know, sort of discuss why we should honor a show instead of another. So it's like, Oh, Ryan, it's a fantastic show. And he's such a great advocate for disabilities. And he's such a funny guy. I mean, Ryan, you just said, you just ask him a question and you just let him go. You sit back, have a drink. And he just keeps on going, and all amazing and funny and insightful and brilliant. But you know, his show on, you know, as a new showing plenty. Okay. So that's why we're not going to honor, you know, special, but it's exciting that we have these discussions of, you know, why we're going to honor a show, one actor or a producer instead of others. I mean, and we honored a way, which is also a Netflix series because there was such a, I mean first I think it's a great show, a great series and it's beautifully done. And the people involved are really amazing, but there is an organic way of involving people with disabilities. The first person we see who is disabled is a psychiatrist. And we see him in the series. I think first episode, we see him on a screen being the youth psychiatrist of one of the astronauts. And, you know, here he is talking to her being smart, intelligent, insightful. And I think in episode two, if you don't know the actor, you didn't know he wasn't in a wheelchair. And so episode two now, because he is in an office talking to someone, we get to see that he's actually in a wheelchair. And how amazing is that, that it was like a whole episode that, you didn't even know, you just came to know as the story moved on, because there was no need to make a point of that. There was no need to make a point that one of the other characters was a person with down syndrome, it's just, she's just there. She's part of the, you know, she's the daughter of a family friend of, you know, the main characters and, you know, it's just like, so all these characters with disabilities started to pop into the series as just people in the story line. There was no big thing about making a point of this person hasn't disability. And one of the main characters becomes disabled as the story moves on, but it's like, there's the shock of a change of life. And we have to recognize that there is a shock. You have lived your life one way. Now you're going to live your life in a different way. And once that transition period is sort of experience, then that becomes someone's life. And that became the life of this character and he moved on. So it was a really beautiful organic way to create a story and the run number of characters and actors with disabilities in the series. So we thought we should honor, the producers went out and really made a point of doing that. None of that was necessary for the story, but they just see the world as we do, which is inhabited by people of color, people with different sexual orientations and people with disabilities. And that was the world they created in the series that way. And we thought they should be honored for that.  

[Doug]: You mentioned certainly sometimes in the storyline you need to talk about the disability, it's an important, like in the case of someone becoming disabled and adjusting to a different lifestyle, of course, it's a really important storyline to explore, but also the need for characters with disabilities, not the storyline, not being about their disability and how important that is. How far away do you feel like we are from that being more commonplace? Where do you see the future of storytelling in that sense?  

[Deborah]: I think both stories are valid. We can't just have stories about people that become disabled, because that's not the full experience of disabilities. That's maybe one experience which should be explored, aimed storytelling, but no, the majority is just, and should be, these are our, you know, neighbors, our family members, our friends, our spouses, you know, and they happen to have a disability. My partner at the Media Access Awards became disabled in his fifties. And he went through a period of adaptation to his new life. But, you know, once that transition happens he was like, that's who he is now. There's never, you know, there's no, there's no accommodation in, in our relationship of like, he is disabled. It's just the way it is. You know, we work together, we yell at each other, we hang up on each other. We almost like married people, and that's really the most interesting, more interesting in terms of storytelling, which is bringing people in a normal interactions that have different experiences. And I mean, I remember years and years ago, my first real big understanding of the power of storytelling when I saw a movie called the Joy Luck Club. And it was about mothers being mothers, you know, and it was the first time that I actually saw my relationship with my mother through the mother's point of view. It was always like, I want, I am my rights, you know, sort of always my point of view. And this film allowed me to stop, like looking at my mother from my point of view, and actually look at me from her point of view. And I thought, Oh my God, I've been such a jerk. You know, so too, and this is what storytelling can do for us beyond entertain us is to allow us to see relationships from the other side. And when we do that, we start to understand human beings in a different way. And I think that that's, you know, what we should be doing with storytelling is bring all these different experiences, maybe, you know, of people, of color, of sexual, different sexual orientations of disabilities, and have these exchanges and, you know, create these stories where we get to experience. We get to think about what is it like for the other side? It's not just me, me, me media. And so that's the power of storytelling.  

[Doug]: What kind of impact has the media access awards had since, since you started it up again? And how do you try to gauge that or understand that.  

[Deborah]: We have had incredible impact because two things happen. One, that professional who is being celebrated for doing, and recognized and recognized for doing work that includes people with disabilities in a intelligent and complex fashion feels valued for the work they have done. Anybody feels validated. They want to do more, you know, it's just how we function. Oh, I got brownie points. I want more boundary points. And then their colleagues who turn around and say, Oh my God, I didn't think about that. That's incredible. I want to do, I want to do that too. So that's what we do. We sort of support the people that are already doing the work and letting them know. And as I say that, I'm thinking about Simon cow. Okay. So we awarded Simon cowl, the visionary award two years ago. And I am a fan of America's got talent and brought Ellen from that, Ellen Silva and I just started noticing how many people with disabilities actually went through the show and had a chance to win. And how many of them have actually won the show and have had their lives don't really change because of that show and how they're treated like anybody else. I mean, it, Simon has to say, you're crap. He will say, if he needs to say, you're great, he's going to say, and I really applaud that. So when we said to him, we'd like to honor you with the media access visionary award. He said, I didn't think people were noticing what I was doing. And that really is amazing because he knew what he was doing. He just didn't know. People had like really noticed what he was doing in terms of inclusion. And when he received his award, he said, this is the most significant award I have ever received in my life. And I think that right after he received his award, there was an America's got talent winners special. And that the were so many acts of people with disabilities. And I'd like to think that was also direct impact of like I got brownie points I want more brownie points and that's a really great thing and maybe I'm wrong, but I've also heard from showrunners and producers and directors who have said this show has changed my life. It has alerted me to people with disabilities, to the need to create storytelling that really reflects the largest minority in the country.  

[Doug]: And the reality of the situation is as much as you can know, specifically how it's had certain impact, there's so much more impact. You'll just never know. But it's out there and is happening. I think that's one of the interesting things about, you know, now being in the like social impact entertainment space and learning about it, and there being a real focus on for a lot of people really gauging, gauging, and measuring that impact and getting analytics on it and what that's all, that's all well and good. I think that's great to have whatever analytics you can get. But the reality is when you're dealing with media, when you're dealing with the scope of media and how subtly, but significantly it can affect and change someone, there's no real way to gauge the kind of, it's funny, the real, the, the largest, the greatest impact that media has. There's no way to gauge. It's like, how do you gauge how much you moved someone's awareness or consciousness about something, or how you stirred someone really deep in their heart when they were watching something. And now, you know, maybe even it might be a year later, but they might encounter someone that they had no context of before and treat them differently as a result. How do you gauge that? Right. And there's really no way, although it is so great to hear those, those specific anecdotes and stories of how it has specifically created some sort of change. But I love that.  

[Deborah]: David Hobberman, who is a huge producer, he said after the Media Access Awards he went to his casting directors and said from now on, I want to see people with disabilities, as well as any other type of person in my cast and calls it has to change and it's starting to change now. So I know that also is a direct result of the media access to boards is someone who was like, wow, this is really important. I never realized how important this is for people. And again, in general, people want to do the right thing. And when they realized the importance of representation and sort of get to think about things that they didn't have the opportunity to think about before, it's really, they will do the right thing. And, and the other thing about media is that content creators, usually we are working under so much stress and everything has to be done so fast that we have the tendency to just, you know, call Bob and Mary and whoever we worked with before, because it's the path of least resistance. So we have to say, okay, we need to change that. And it needs to actually start on the page. We need to start with the writer, writes something that be specific, if you have to about the creation,  the psychiatry, the NASSA psychiatrist is an actor, is a character in a wheelchair just so that it will force the casting director will force the producer to actually go out and cast someone like that. And until we, you know, that becomes sort of second nature to the industry, we really need to make a point out of casting women cast, you know, in roles that usually women are not cast damn, you know, scientists, you know, presidents and, you know, you know, really make a conscientious effort in doing so people of color, people with their different sexual orientations, people with disabilities. And once that becomes just second nature to everyone, we don't need to do that anymore. It's just going to be it. But in this period, we really need to think about and make, you know, conscientious decision that we need to create content that reflects the world we live in.  

[Doug]: Well, Debra, I couldn't think of a better way to wrap up today's episode than what you just said there. That was the perfect, that was the perfect button on our conversation.  

[Deborah]: Oh yeah we rehearsed it.  

[Doug]: For everyone, just to a T, just like we planned. But no seriously just want to thank you again for joining us today and for everything you're doing with the media access awards, I truly was like, again, in getting to know you over the last year and be familiar with the awards like I said to you, before we started today, I already had really high expectations and they were certainly even still superseded with what you were able to put on last night. Just on a closing note, if, if people missed last night, but want to check it out, can they, can they still do so,  

[Deborah]: Yes, it's online right now. It's MediaAccessAwards2020.com. And again, the show is fully accessible and we love with people, check it out.  

[Doug]: Debra, thank you again. And thank you to everyone who tuned in today. A last reminder, you can join us tonight at 4:00 PM Pacific time, 7:00 PM Eastern  time for a live discussion and Q and a with a panel of artists who are deaf blind, including Robert from Feeling Through, Carol, who is a sculptor and Sally, who is an author. It's going to be a great time, go to youtube.com/feeling through to join us. And Debra, I hope you have a great Thanksgiving ahead, and I'm glad I caught you before the holidays. And again, right after an amazing award show.  

[Deborah]: And I just want to say one of my most incredible experiences was the feeling through experience. So thank you.  

[Doug]: Thank you, Deborah. I appreciate that. And all right, well, that wraps up today's episode. We'll see, I don't know if we're going to be on next week is there's some, there's this little holiday called Thanksgiving, so I'm not sure it's gonna happen next week, but if we will see you the week after, if we're not going next week. Thanks everyone. Thank you.

The Feeling Through Experience @ The India Inclusion Summit

>> DOUG ROLAND:  Welcome to the India Inclusion Summit live stream of The Feeling Through Experience. We're truly honored to be a part of this amazing Summit for a more inclusive India.

A big thank you to our partner, Helen Keller Services, and to all of you for joining us. We're going to get started really shortly, but in the meantime feel free to use the chat box to introduce yourself, connect with other people who are watching, and let us know where you're tuning in from. 

Now let's roll the trailer for The Feeling Through Experience.
>> DOUG ROLAND:  Right from the start, I knew that I wanted to cast a DeafBlind actor.
>> I felt like this is my dream coming true that I'm sitting here in this room auditioning for a movie. It's about bringing the DeafBlind community and other communities together in a physical space for us to all dialogue together and learn together. Some of the changes we hope to enact in rolling this film out and being able to show it in a lot of places is also bringing greater awareness around accessibility.
>> To this wonderful day, Helen Keller's birthday and this special event.
>> Something that we've wanted is to really bring accessibility to the next level so that everyone can experience this. It's not only important to provide experiences that are accessible to everyone, but it's also, there are a lot of people that want to go and attend if you create that level of accessibility for them.
>> I am DeafBlind. The film was wonderful and I foresee great success with this amazing film.
>> As I was watching the film, I felt like it validated my experience. I'm honored to be here, but it's actually not a film about DeafBlindness. It's actually all about human connection. Does it matter? Not only is it a great model for other under‑represented people, I thought the movie was great.
>> DOUG ROLAND:  Robert, can you tell everyone how your life has changed now that you are a huge movie star?
>> ROBERT TARANGO:  I'm humbled. And I look at it and I'm like, wow. I feel really, really good.
>> Robert, congratulations for being the first DeafBlind person to play a leading role in a short film, your inspirational performance is a testament to the diversity of talent among people who are DeafBlind.
>> DOUG ROLAND:  Let’s get started. We're going to begin with the short film, Feeling Through, which is 18 minutes, then go right into the making of the documentary, Connecting the Dots, which is 24 minutes. And make sure you stick around after that, we're going to do a live discussion and Q&A with some amazing panelists. 

FEELING THROUGH 

Tereek, a black male teenager wearing a hoodie, winter parka, and backpack, stands in front of a fast food joint on a busy NYC street with cars and people rushing by. 

He checks his phone, taking it in and out of his jacket pocket a couple of times, as he shifts from foot to foot and glances around. 

Tereek receives a text. He had previously typed: Can I crash at your spot tonight? A response from Corey reads: Again? Lemme hit u back later Tereek waits outside the turnstile in a busy subway station. He asks a woman who is exiting for a swipe. She ignores him. 

Tereek jogs down a dimly lit street with shop signs in Chinese and graffiti covering the walls. He pulls his hood up, catching his breath and collecting himself. He rounds the corner where his friends stand waiting. J.R. is Asian and the other, Clay, Hispanic, is smoking. 

The three friends slap hands goodbye. Arcade excitedly playing a game together. 

Back on the street, the boys stand in a circle. Clay freestyles. 

The boys eat noodles from Styrofoam takeout containers. Tereek shovels them into his mouth. 

Tereek watches as J.R. and Clay playfully fight. Tereek jumps in, taking J.R.'s place. J.R. pulls him off of Clay. 

The boys are sitting quietly on a stoop surrounded by graffiti. Clay offers Tereek a cigarette, Tereek declines. J.R.'s phone buzzes. 

Tereek gets a text from Corey that reads: Tonight don't work Tereek has a worried look. The three friends slap hands goodbye. Tereek glances back, watching his friends leave. He turns back around, looking sad and alone. 

Tereek is perched on a metal post next to a brick building. He composes a text. To Rhoda:  How have you been?  Cool if I roll thru? He pauses, changes the 'you' to a letter 'u' and the 'c' in 'cool' to a 'k,' and hits send. 

A weathered homeless man approaches, holding a worn paper change cup. The homeless man asks Tereek for change. Tereek says he doesn't have any. The homeless man, looking dejected, slowly turns and limps away. 

Tereek watches as the homeless man walks down the block and approaches a man holding a white cane and sign that is too far away to read. The homeless man shakes his cup near this man, who does not respond.  The homeless man leaves. 

Tereek is intrigued and slowly approaches the man with the cane. Tereek takes off his hood and looks at the man's sign which reads: I am deaf and blind Tap me if you can help me to cross the street Tereek looks closely at the man. This is Artie, 40s, short gray hair, and a friendly demeanor. 

Tereek, confused, looks around. Tereek tries speaking to Artie. Then, realizing the futility, taps him to get his attention. Artie reaches for Tereek, startling him. Artie puts down his backpack and takes out a pad and blue Sharpie. He writes: I need M15 

Tereek says, 'it's close.' Tereek helps Artie get his backpack on. Tereek turns Artie toward the street and taps him on the back. A large white truck whizzes by in front of them. Tereek is unsure what to do. He looks around. 

Artie holds out his right arm. Tereek deliberates. He tentatively takes Artie's hand, placing it on his left shoulder, and leads him down the street. 

Tereek guides Artie to a seat in a bus shelter. The street is dirty, deserted, and dark, except for the light of the shelter and a string of lights behind. Artie takes off his backpack and places it on the bench next to him. 

Tereek gets a text from Rhoda which reads: How soon? It's late. Tereek draws a breath, appearing relieved, and replies: On my way 

Artie taps on his pad to get Tereek's attention. He has written, How long until the next bus?  Tereek walks over to check the posted bus schedule. Tereek rubs his hands together as he walks back toward Artie, hesitating momentarily as if figuring out how to communicate. Finally, he takes Artie's hand and slowly taps it with his index finger, counting out loud with each tap. Artie follows along, nodding with each tap. Tereek taps to 10. Artie nods, showing he understands. Tereek turns to leave. 

At the bus shelter across the street, Tereek sees a bus whizz by a sleeping man. Tereek looks back at Artie, whose eyes are closed and has a peaceful expression on his face. 

With a look a frustrated obligation, Tereek walks back to Artie. He takes Artie's hand and places it on the empty bench seat next to Artie. Tereek takes off his backpack and sits next to Artie. Tereek pats Artie's knee several times to reassure him that he is there. 

After a moment, Artie reaches over and pats Tereek's knee several times. Artie sits back and smiles. Tereek smiles in response. They sit calmly next to one another. 

Artie takes out his Sharpie and writes on his pad. He shows it to Tereek. It reads: Bodega nearby? Tereek shifts back and forth, frustrated, hesitating briefly, then takes Artie's hand. Tereek uses his index finger to write one letter at a time on Artie's palm. CAN IT WAIT? Artie clicks his pen a couple of times to make sure it's open and writes on his pad. It reads: I'm very thirsty 

Tereek glances up, looking tired. Artie walks with his hand on Tereek's shoulder. Tereek looks away for a moment. Artie's cane hits a construction barrier. Tereek, startled, yells, 'sorry.' Tereek helps steady Artie. Artie shakes his head. He extends his arm to Tereek. Tereek puts Artie's arm through his and says, 'I got you.' They resume walking, Tereek now with more care. 

Now in the Bodega, Tereek scans the refrigerated drink section and opens the door to make a choice. Artie stands patiently by the register in front of a 30‑something, Hispanic cashier who stares awkwardly at him. 

Tereek approaches, places a tall can of iced tea on the counter. Artie takes out his wallet, holding it open for Tereek to take. Tereek thumbs through and takes out a 20. Then asks for a Snickers bar, who tells him it's $3. Tereek hands the money to the cashier. The cashier hands Tereek the change. Tereek places the money back into the Artie's wallet. He hesitates, then pulls out a ten dollar bill and places it in his own pocket before returning the wallet to Artie. The cashier notices and stares at Tereek. Tereek stares back and says, 'what, you've never seen a blind and deaf guy before?' The cashier lowers his gaze and busies himself behind the counter. Tereek glances back at him with a hostile look before opening the door and leaving arm in arm with Artie. 

We follow behind Tereek and Artie as they head down a dark street. A bus speeds by. Tereek lets go of Artie's arm and races after it, yelling for it to stop to no avail. Tereek mutters to himself, 'Why I gotta get stuck with this?' Behind him, Artie pulls out the can of iced tea on the counter. And takes a big sip. His face lights up with satisfaction. Tereek can't help but smile. 

Tereek and Artie are back at the bus shelter, Artie drinking his iced tea and Tereek eating his Snickers bar. Artie places the can on the ground and reaches into his backpack for a wool cap that he puts on his head. Artie reaches for his pad. He writes: Tell the bus driver to tap me at 129th? Tereek takes Artie's hand and writes back: Yes 

Artie takes Tereek's hand in his and feels it. Artie voices, 'young man.' Tereek is surprised to hear Artie's voice. Artie writes: Your name? Tereek spells T‑E‑R‑E‑E‑K 

Artie tilts his head with curiosity. Artie writes: Pleasure to meet you! Tereek can't help but enjoy this. Tereek writes: Name? Artie writes: Artie 

Tereek writes: Why out late? Artie clicks his pen a couple times, then writes: Date 

Tereek smiles and looks a bit surprised and amused. Artie writes: You? Tereek takes Artie's hand, finger poised to spell, but hesitates briefly this time, furrowing his brow. Finally, with a pained expression on his face, he slowly writes...Same 

Artie pauses as if understanding there is something significant in Tereek's hesitation. The two sit, Tereek fidgeting slightly with his hands as Artie turns to put his pad away. 

He reaches down into his backpack and finds a bottle of water he pulls out. He shakes his head from side to side in disbelief, then shows it to Tereek and begins to laugh. Tereek looks at the bottle, also with a look of disbelief, and the two share a good laugh about this inside joke. 

Tereek and Artie are now both asleep, Artie's head on Tereek's shoulder. Tereek is awakened by the buzz of a text from his phone. 

He slowly removes his hands from his jacket, and gently adjusts Artie, until Artie is sitting upright on his own. And pulls out his phone to read a text from Rhoda. It reads: It's late. I'm going to bed. 

Tereek glances to his left at Artie, still sleeping. He looks back at the text. Deliberating, then clicks off his phone. 

Tereek looks back at Artie. He makes a move, then stops himself. Then he carefully reaches across Artie, pulling the pad out of Artie's backpack. It's a small spiral notebook with messages scribbled everywhere, at different angles and in different colors of ink. 

One message says: Which way is 96th Street? Tereek flips the page. Another reads: Please leave the room and close the door. On another page he reads: Can I kiss you? 

Tereek, moved by what he just read, glances back at Artie still sleeping peacefully. 

Tereek vulnerably looks up and directly into the camera. We get closer to his face as he puts his hands over his ears and closes his eyes. 

The screen goes black. 

A rumbling sound. 

With picture back up, Tereek notices the sound, takes his hands off his ears and opens his eyes. He runs out of frame and chases down a bus, tapping the side until it stops. The doors open and Tereek addresses the driver, 'you mind waiting just a quick second?' 

Now on the bus, Artie is seated near the front. He hands Tereek his MetroCard. Tereek approaches the driver, swipes his MetroCard. The driver rubs his eyes, appearing bored and tired. 

Tereek: 'This guy's blind and deaf. You gotta tap him and let him know when he gets to 129th street. His name's Artie.' 

The driver looks away, uninterested. 

Tereek: 'Excuse me, sir. Could you tap him and let him know when he gets to 129th street?' 

Driver: 'Sure.' 

Tereek: 'No, not sure.' 

The driver now looks at Tereek. 

Tereek: 'He just wants to get home.' 

Driver: 'I'm going to take care of the man.' 

Tereek: 'Artie.' 

Tereek is impassioned, moisture in his eyes. 

Driver: 'I'm gonna take care of Artie. Get him off the bus at 129th street.' 

Tereek looks down, as if embarrassed to show his emotion to the driver. 

Tereek: 'Thank you.' 

Now back with Artie, Tereek takes his hand and writes: You Ok? Artie is smiling, eyes closed. He nods. Artie rises, takes Tereek's hand and spells: You'll be OK 

Tereek appears stunned and moved by this. Artie pulls him in for a warm embrace. Tereek hugs back with feeling. They release. Artie places his hands on Tereek's shoulders, then sits down again. Still moved, Tereek exchanges glances with a middle‑aged black woman farther back in the bus. She smiles approvingly at him. Tereek turns and walks off the front of the bus. Artie sits peacefully smiling. 

Now off the bus, Tereek walks to the sidewalk and watches the bus as it pulls away. He stares longingly. He waves bye in its direction, tears visible in his eyes. 

Then, something occurs to Tereek. 

Now back on the same block where he met Artie, Tereek walks briskly and comes to a stop. He looks down with concern. We see he's looking at the same homeless man from before, asleep on the ground covered in a musty, green blanket. Tereek reaches down and drops the same 10 dollar bill he had taken from Artie in the homeless man's change cup. Tereek takes one last caring look at the homeless man. Then turns and walks away. 

He heads back down a dirty, deserted street with old‑fashioned lampposts and store signs in Chinese. He puts up his hood and places both hands in pockets as he slowly fades into the distance. 

Braille appears on the screen, then morphs into the title, Feeling Through. More braille appears, then morphs into, a film by Doug Roland 

Black. 

Credits roll. 

CONNECTING THE DOTS
>> CHRIS WOODFILL: Chris Woodfill speaking. And I would like to introduce you to Doug Roland. And he is a filmmaker for the project that we're going to be working on called Feeling Through.
>> DOUG ROLAND:  Back in August of 2011, I was coming home late one night. I was out in the East village in New York City and I saw this man standing on a street corner by himself. 

And as I got closer, I saw that he was holding a sign that said that he needed help crossing the street and that he was deaf and blind. 

This is the first time I'd ever encountered a DeafBlind person. So initially I tried to talk to him and quickly realized that wasn't going to work. But when I tapped him, he had a note pad that he wrote to me that he needed a certain bus stop. So I walked him over to the bus stop. 

I didn't want him to sit and wait by himself. So I wanted to find a way to let them know that I would wait with him. And I kind of intuitively just took his hand and started writing one letter at a time on his palm. 

The man who had written his name as A‑R‑T‑Z, Artz, is how I knew him at that in that conversation. He was just a really charismatic, open‑hearted, warm person. I was inspired to write a short film about it. I reached out to the Helen Keller National Center, but they are pretty busy over there.
>> SUE RUZENSKI:  I was a bit skeptical about it, um, because I had never received any call like that in the past.
>> CHRIS WOODFILL:  I remember in the beginning, I remember.
>> DOUG ROLAND:  I was politely persistent in reaching out a number of times through emails and calls.
>> SUE RUZENSKI:  I believe it was a lengthy voice message from Doug that I learned about the idea of the film.
>> DOUG ROLAND:  There are not DeafBlind actors portraying DeafBlind characters in the media. That's the whole reason that we're standing here today and why we've come up here and why we've been connecting with everyone in the community, because we really want to tell this story accurately and authentically.
>> SUE RUZENSKI:  I remember sitting in the lobby of this hotel and meeting with Doug and the team. So I was able to talk to Doug in detail about what inspired the story.
>> DOUG ROLAND:  Right from the start. I knew that I wanted to cast it up.
>> SUE RUZENSKI:  It's not common that we're going to see the face of, of these people in media. It's a sort of breakthrough. It's a first it's never happened before.
>> CHRIS WOODFILL:  I can't think of anybody who is DeafBlind who has ever been cast in any type of movie.
>> SUE RUZENSKI:  It was very obvious to myself and, and two of my colleagues and we were very excited.
>> CATHY KIRSCHER:  Doug told us his story about meeting this guy seven years ago in New York. And I said, I bet we can find him within three hours.
>> DOUG ROLAND:  I got an email from Cathy Kirscher, who was a part of that initial meeting, telling me that ‑‑ they're like, we found him!
>> SUE RUZENSKI:  It came pretty clear who it was, Hispanic guy, New York, tactile sign ‑ this is Artie. Like, at least we know who it is. It's this man named Artemio. We would love to, um, reunite with Artemio who's inspired this story. And then it became a quest. Where is Artemio living at this time? The sad part is we couldn't find Artie after that.  He has no known contact with email and all of that, but that's how small and tight this community is.
>> DOUG ROLAND:  For months and months and months, they couldn't find Artemio.
>> SUE RUZENSKI:  People basically were saying, gee, I don't think we're going to be able to find him.
>> DOUG ROLAND:  I knew that there was so much for me to learn about the community, but, also, that I was gonna ‑‑ I really need help finding potential actors to fill this role.
>> CHRIS WOODFILL:  I remember starting to think in my mind of who could be potential candidates for Doug to interview.
>> You can come sit here.
>> So how would I encounter this person? Would it be just walking on the street on the road?
>> DOUG ROLAND:  And that's initially how the other character meets him.  So I'd love to just jump right in and get to know you a little bit more.
>> In North Carolina, I went to the School for the Deaf and that's really where I learned how to sign and learn how to communicate.
>> DOUG ROLAND:  We'd be using two cameras, um, to capture the scenes in a more nuanced and efficient way.
>> Trying to figure out their communication style and the communication methods so that I can interpret what's going on was challenging at times.
>> Interpreting and translation are very different, and interpretation is always going to be an interpretation. It's going to be me trying my best to get where you're at.
>> DOUG ROLAND:  Right.
>> It's not a direct translation.
>> There may be one word in English that I might have eight different ways to sign it based on all of the other words around it and what your intent is. So my goal is to interpret the meaning and the essence in the manner in which you convey it so that the deaf or DeafBlind person will understand it and be able to respond accordingly.
>> DOUG ROLAND:  At one point in the middle of the day, we had a little bit of a break between auditions.
>> CHRIS WOODFILL:  So we have options that, um, that are not, um ‑‑ Ilissa.  I don't know if this is good enough for you, but if you would like you talk with Robert, he works in our kitchen. We can pull him over here.
>> DOUG ROLAND:  Yeah, I'd love to.
>> CHRIS WOODFILL:  I think he might be a good candidate.
>> DOUG ROLAND:  I know you just got pulled in here, so I'll explain a little bit why we're here. We are making a movie.
>> ROBERT TARANGO:  Um, oh, wait, who is going to be the actor?  You?  I'm just joking, I'm just joking.

It made me feel so excited. I was like, wait, are you serious? I'm auditioning for something?  I don't, you know ‑‑ you have to remember, I work from 10 to 6, Monday to Friday.
>> CHRIS WOODFILL:  So don't worry about that. We would excuse you from work.
>> ROBERT TARANGO:  Are you sure?
>> CHRIS WOODFILL:  Yes. It's only for a few days.
>> ROBERT TARANGO:  I just want to make sure you're not bothered because if I'm going to be a movie star, you know, I don't want to be in trouble with you, you know? And if I'm late, it's on you.
>> CHRIS WOODFILL:  Don't worry about it. We will excuse you.
>> ROBERT TARANGO:  But then I felt like this is my dream coming true that I'm sitting here in this room auditioning for a movie. I'm getting so excited about this! And I love being on camera.
>> DOUG ROLAND:  Genuinely. The moment Robert walked in the room, I was like, this is our guy. So we were really, really excited to call up Robert shortly after and let him know that he'd gotten the role. And he was very excited.
>> ROBERT TARANGO:  I just remember one day I was at work and my boss, Dan came over to me. He's like, I'm on the phone right now. And he's like, Doug picked you!  I was like, oh, my God! Oh my, God! Me? Really? Wow! I just couldn't believe it! I was thinking, I did it! I made it!
>> SUE RUZENSKI:  I felt great for him. I was really excited. It was great to learn that he was the person selected.
>> He's such a friendly, charismatic type of person. He's got a good soul.
>> ROBERT TARANGO:  I was born deaf, but I had 20/20 vision. I thought about wanting to become an actor and meeting actors and wanting even to be an actor in a movie. 

Then at the age of about 30‑31, I started to lose my vision. It became just so depressing to me. I thought there's no way that anyone would want to hire someone who was not only deaf, but deaf and blind to become an actor. I have no peripheral vision at all. I have like a tiny box of vision in front of me that I can see through.
>> So his vision on a great day, it'd be this on top of this.
>> DOUG ROLAND:  Yeah.
>> ROBERT TARANGO:  I mean, Artie is a completely DeafBlind person, whereas I am not, I'm deaf and legally blind. So it was a little bit different for me. We're the same, but we're not. So for me, I was trying to figure out how to play the part of Artie because he had no vision. I mean, who knows in the future, I might lose all my vision, just like Artie.
>> DOUG ROLAND:  I don't know what it's going to be like getting you guys together yet. And, like, actually working through it together.
>> STEVEN:  Do you have any tips to give me?
>> DOUG ROLAND:  I have a plan, but like I also, like I have no idea. We'll have to figure it out. We'll just like, see what it's like when we get moving. 

They have pretty unique elevators in here. There's, obviously, a lot more buttons than the others, most elevators. And you can keep your hand on the button so that, uh, when it gets to the floor, this will pop out and it lets you know that you're at your floor. 

I want him to meet Steven.
>> Nice to meet you.
>> Nice to meet you as well.
>> DOUG ROLAND:  This is just an opportunity for us to be able to get on our feet, for you and Steven to interact with each other, and for us to start to see where we're at with things.
>> STEVEN:  You just got to go, just keep walking. 

That rehearsal that we did was different from any other rehearsal that I've done before.
>> ROBERT TARANGO:  I remember he came over to me, he tapped me and he was trying to communicate with me, Tereek, and it was the first time. And he was, like, trying to guide me, but here I am, this DeafBlind person, and we were trying to engage with one another.
>> STEVEN:  It took a lot of just trusting each other, listening to each other.
>> DOUG ROLAND:  Even if it's a little awkward for you to do it, even if you wish you didn't have as many things in your hands, that's one of the obstacles that you still need to get past in order to communicate to him. 

And that first rehearsal was great to have Robert and Steven jump right into it, but it was also really scary as a Director because I was like, oh man, I wish we had 20 more rehearsals because there's so much more we need to get through.
>> ROBERT TARANGO:  Woah!
>> STEVEN:  Sorry!
>> DOUG ROLAND:  So if I just leave you here, you're not going to be able to get where you're going.
>> That I learned about the idea of the film.
>> DOUG ROLAND:  Yeah? 
>> So why don't you be Robert and let Tereek be Tereek and let him watch you?
>> DOUG ROLAND:  Perfect. I love that idea.
>> CHRIS WOODFILL:  People I think are probably more familiar with what is called TASL, which is Tactile American Sign Language, which is really just using regular visual sign language adapted to the hand.
>> Haptics is, it's just a way of touch communication that we use here at Helen Keller. So we might just put our hand on Robert's shoulder, for example, to just mean hold or just to stop.
>> CHRIS WOODFILL:  But then there are also some people who might learn the Print on Palm method, where you actually take letters, use your index finger and print them on the other person's palm of their hand.
>> ROBERT TARANGO:  It was hard for me to actually use that type of communication because I'm not used to it, so it took me a while to understand what Tereek was trying to communicate to me on the palm of my hand.
>> DOUG ROLAND:  Yeah. I definitely came away from that first rehearsal. Pretty nervous. I was pretty sweaty by the time we got out of there and looking around at other people going, like, is it hot in here or is it just me? 

I know Dan's going to get mad at me. If I don't get you back to the cafeteria. 

It was really great to be able to work with the two of them. And then, also, moreover though, it reaffirmed that I cast the right people. 

So if you want to cross the street, say, you can see or hear this will get you recognized faster. And then when he's walking, he just needs to just move his cane. Like, that's all he needs to do.
>> DOUG ROLAND:  Great. You know, basically we're going to be outside with like some natural light from streetlights, but also like most of the light that he's going to feel on him is light that we're introducing.
>> I actually have a lot of concerns with what he's going to be able to see exactly at night.
>> DOUG ROLAND:  Exactly. 

It was in March of 2018 that we had that first meeting with HKNC, but it wasn't until November of that year that I got an email the day before we started shooting the film that we found Artemio, or we know where he lives.
>> SUE RUZENSKI:  One of our former staff members had the opportunity to be at a forum and at that forum was Artemio.
>> DOUG ROLAND:  So now it's the day before we start shooting and we have this address for Artemio, and I was like, well, invite him to set. Let's have him come. Like, you know what better way to let him know what he's inspired than to have him come down to set. 

Scene nine, take one, mark.
>> ROBERT TARANGO:  I remember the first time I was standing there on the set, they had to do my makeup and I was like, oh, is that what movie stars do? Okay. I'm going to sit in the seat and get my makeup done. 

I'm damn handsome! [Laughter] 

Doug took me over to a storefront.
>> DOUG ROLAND:  Action. We were shooting this film in November, in New York City, outside, at night so you have the obvious challenges that you might assume of it being quite cold a bunch of the days.
>> ROBERT TARANGO:  I had to follow what Doug was telling me to do and it was cold. And I had to focus on keeping my eyes focused and not act as if I was looking. And it was tough with the weather.
>> DOUG ROLAND:  You don't have to scan so much, but really ‑‑ yeah.
>> ROBERT TARANGO:  So just like I'm scanning because I don't know where he is. So that's, that was the scan just ‑‑ right?
>> DOUG ROLAND:  Sure. Of course.
>> I think it helped to just provide Robert with a lot of the touch techniques. So giving him signals to indicate, keep going or to indicate, like, the scene is going to be cut or to stop. I think really helped out in this situation.
>> STEVEN:  He was sticking it out. I thought Robert was about to like tap out, but he was like, nah. He said, no, I got this, I just needed a quick breather. He just got right back up and was like, yeah, we're going to finish this. We're going to do this. And we needed that. That just tightened me up. And I was like, yo, I can get through this, too. 

Oh, sorry!
>> ROBERT TARANGO:  It doesn't matter if I'm deaf and legally blind, I still felt like I could do it.
>> DOUG ROLAND:  We were shooting almost the whole film outside at night. And in those settings, Robert really has little to no vision. So something that we needed to figure out ahead of time, how do we break off and create little settings where the interpreters are well‑lit enough so that them and Robert can communicate.
>> So whoever was not actually interpreting at the moment would hold the light over Robert's shoulder so that the light wouldn't distract him. So it was coming from behind Robert so he wouldn't get any ambient glare and he could actually see the interpreter.
>> What is that? 
>> It's called a silent call pager. It's a very simple system. It's just one‑way. It either chimes or it vibrates.
>> So when they're striking the lights, it will light up.
>> DOUG ROLAND:  This is your part, so I'm just helping you find it, but it's your role to have, take more ownership over it.
>> ROBERT TARANGO:  Okay.
>> STEVEN:  There was a scene where, when I had to, like, when he touches me and I kinda like shift, I kind of flinch my reflexes. And he was saying that, you know, in real life, like it's ‑‑ it's a sad thought that people in this world are afraid of, like, you know, human connection.
>> ROBERT TARANGO:  The point is just communicating. It doesn't matter how you communicate, whether it's through sign language or with pen and paper.
>> STEVEN:  There was a kinship that was building between us and I believe that is showed on camera. It was something just magical just happening around everyone on set.
>> DOUG ROLAND:  Cut! That's a wrap.
>> STEVEN:  Woo! Had to let that out. Sorry.
>> DOUG ROLAND:  So the shoot comes and goes and we're not able to get in touch with Artemio. A couple of days after Christmas of 2018, I was up at HKNC and I was like, I'm going to just go by his house and see what happens. 

We are in front of our Artemio's house about to knock on his door. To our knowledge, he does not know anything about this yet, so we're going to go in there and do our best to explain why we're there so that we can finally be reunited with Artemio and let him know that he's inspired this film. 

Might've been better to do this during the day time. Just realizing that. But it's dinner time. It's, like, an approachable hour.
>> Hurdle number one.
>> DOUG ROLAND:  Definitely don't want to hop the fence. That would not be a good start to this operation. 

By any chance have you ever seen anyone, um, if they have a son who's deaf and blind?
>> They do. They always lock their gates so you have to yell out.
>> DOUG ROLAND:  Hello? Hello. I have a question. Is Artemio your son?
>> Artemio? 
>> DOUG ROLAND:  Yeah.
>> Si. 
>> DOUG ROLAND:  We're friends of the Helen Keller National Center.
>> One moment.
>> DOUG ROLAND:  Yeah.
>> Come on.
>> DOUG ROLAND:  Okay. Oh, great!
>> Sorry, I am hungry.
>> DOUG ROLAND:  No, no, please, please.
>> My husband.
>> DOUG ROLAND:  What did Artemio say when you explained who we are and why we're here?
>> I told him a seven year old friend that is his acquaintance is here and wants to see him.
>> DOUG ROLAND:  This is very exciting for me because I've been trying to find him for the whole year.
>> But at last you found him.
>> DOUG ROLAND:  My name is Doug Roland.  I met you seven years ago on a street corner in the East Village when you needed help finding a bus stop.
>> ARTEMIO:  I remember.
>> DOUG ROLAND:  Very quickly we realized that the most efficient way for us to communicate was just like how we communicated when we first met each other.
>> ARTEMIO:  Are you an artist?
>> DOUG ROLAND:  Yes. Filmmaker.
>> ARTEMIO:  Do you want fresh water?
>> DOUG ROLAND:  Sure. 

And a half I'd met him prior, but the instant, he walked down the stairs, like, his appearance and his energy, it was very familiar, surprisingly so. 

Over the course of this year in searching for him, I started building this rounded understanding of who Artemio was through all these other encounters that I'd had with other people. 

I will tell you more about the film soon. 

It was great to be able to finally fill him in on this whole experience that he's inspired, but it was really just more than anything, just really great to see him again.
>> ARTEMIO:  It was such a pleasure to meet you again.
>> DOUG ROLAND:  So great to see you again.
>> ARTEMIO:  Doug had never even met a DeafBlind person in his entire life. Meeting me was his first time encountering a DeafBlind individual. We ultimately became friends. Now I'm motivated to learn about becoming an actor and becoming an author, similar to Helen Keller.
>> DOUG ROLAND:  Robert being a part of this experience wasn't a challenge. It made it what it is. It was such an integral part of creating the environment that pervaded every moment of the shoot. It's in the DNA of every moment of the story that we're telling.
>> SUE RUZENSKI:  It gives other individuals who are DeafBlind an example of what's possible.
>> STEVEN:  It was a learning and humbling experience all around.
>> ARTEMIO:  I can do anything, just like your typical sighted person can do it.
>> CHRIS WOODFILL:  It doesn't really matter who the people are, it's about that connection that two people can make.
>> ROBERT TARANGO:  I hope to educate people through the film, so that's my hope for the future. And I hope that Doug maybe, who knows, he'll give me a shot at doing Part II of this movie.
>> DOUG ROLAND:  The whole journey from the start of meeting Artemio years ago, to aligning with Helen Keller National Center, to casting Robert as our DeafBlind actor in the film has been such an amazing journey and it was, it was just so great to have it capped off by reuniting with Artie and getting a chance to share that with him.
>> SUE RUZENSKI:  It really elevates people's, you know, just awareness about people who are DeafBlind, it's tremendous.
>> ROBERT TARANGO:  I feel like at the end, when we embrace each other and have the hug, I feel like it was showing how people can help each other out. And I felt like that was really something that really left an impact on me because we are all not alone in this world. Everybody needs each other. Everybody needs help. Everybody can help each other out.
>> DOUG ROLAND:  We hope you enjoyed the films. Now, let's get started with the live discussion and Q&A. Today I have the honor to be joined by Bapin Bhattacharya of the Helen Keller National Center, and none other than Ferose, the founder of the India Inclusion Summit. We encourage you to use that chat box to type any questions you have. Let's get started.
>> DOUG ROLAND:  Hello, everyone! Thank you for joining us today.  It's such an honor to be doing this Feeling Through Experience for the India Inclusion Summit and certainly thrilled to have both the Founder of the India Inclusion Summit, as well as Bapin, who is a very amazing guest to have as well. 

Before we hop into things, just a reminder for anyone that is watching live, feel free to type any questions that you might have in the chat box throughout. We'll try to get to those.  

And we're going to be talking plenty about the India Inclusion Summit throughout this conversation, but I want to say off the top that you can go do IndiaInclusionSummit.com to watch talks from amazing speakers throughout the summit. 

Just to hop right into things, Ferose, maybe you could give everyone a little bit more of an understanding of what the India Inclusion Summit is.
>> ANINDYA BAPIN BHATTACHARYYA:  Thank you, Doug. Firstly, what a delight to be in this platform and thank you for not just making such an uplifting movie. I've seen it now multiple times. First, when it was one of the entries at the Bengal International short Film Festival and I watched it again today and, you know, I think it's become even more relevant in COVID times when it shows how important human connection is, you know, something that each of us are probably missing in our day‑to‑day lives.  

So congratulations for such a brilliant movie.  Congratulations for all of the awards you have been winning.  I'm sure it will go a long way in changing people's mindset about not just DeafBlind, but disabilities in general. Thank you for all that you, Doug.  

And thank you for also agreeing to bring this our audience in India. This is Bolly Week, so I seek forgiveness that many people may be still celebrating right now, but this is available. I'm glad that you have allowed the movie to be open for the next one week. I'm sure a lot of people will come back and enjoy watching the movie, watching the experience, and hopefully take something out of this conversation as well. 

For all the audience, the Inclusion Summit started as a very simple idea way back in 2012 where we said, how do we bring the topic of disability to the mainstream?  Because disabilities were still seen as terrible, people don't speak about it, it's kind of still covered and kept under wraps, and we said, how do we actually change the narrative and flip it in a way that we celebrate people's differences?  

So we started with very modest aims way back in 2012. We said let's put together a small event and I'm glad that in the last ‑‑ this is the ninth year, it's transformed itself into an inclusion movement across the country where the Summit is just one part of it, but we do various other activities, including something called Inclusion Fellowship, where we encourage entrepreneurs who are solving some of the big problems in the disability space. We do something for art for inclusion, where we amplify the voices or the artwork of many people with disabilities and so on and so forth. 

I would say in a very simple, in a nutshell, the Inclusion Summit is nothing but a platform to celebrate people's differences.
>> DOUG ROLAND:  Well, that's definitely a really great introduction there. 

And you know, Bapin, I had the pleasure of speaking with you about your life’s journey some while ago and you really couldn't be a better guest for this discussion today. And I'm sure you have a lot to say on the topics of inclusion of the Disability Community as a whole, as well as specifically in India, but before we get to that, I think it's really important that people have a little bit of context of your life and kind of your story. 

So maybe if you could give us the abbreviated version of kind of just take us back to being a small boy in India, you know, born deaf, later became DeafBlind, and maybe walk us through some of the key points there, as well as your early education experience to give everyone who is watching a little bit of a reference point.
>> ANINDYA BAPIN BHATTACHARYYA: Of course, sure.  First I want to say hello and good afternoon, I would say in Indian time.  Right now for me, it's morning, so good morning.  Actually, for many of you it's morning as well, so good early morning for those of you who are here at this time. 

I'm thrilled to join this presentation with all of you today. I know we have many different comments to get to, of course, but I want to try to keep it as short as possible.  

I want to begin by saying, well, I know we'll have questions at the end, so to start off, I'll start with who I am. So my full name is Anindya Bapin Bhattacharyya and my nickname for a long time now has been Bapin. My name sign, I'll show it here.  That's my name sign. I'm actually from west Bengal.  And I was born in Kolkata. I want to first make clear I was born deaf to parents who have never experienced people with disabilities at all.  They had no experience in that. 

When I was with born, I guess it was a shock to my parents, they didn't know initially what to do. Luckily, I would say I did have in my corner that both of my parent were educators, they both taught in high school.  So I know my parents fervently believed in education as a core value for them.  And they weren't, you know, ashamed about me being a deaf individual.  They were proud to look for a great opportunity for me and try to help me find the best services that were available for me at the time. That's, I think, what has led to most of my success.  

For instance, what my mother would do is she would sit there and try to speak with me, but, of course, I was fully deaf, so I don't have any ability to hear what she was saying. And then she did bring me to a doctor at some point and they gave me hearing aids, but the hearing aids didn't help at all.  

So my parents decided to go ahead, my mother specifically, thought of an idea of how exactly to, I guess, help me learn how to speak. So she would show me ‑‑ she would use different voices and she show me how vowels worked and how consonants worked and that would be for, you know, different letters of alphabet. We would work through these items over and over.  And that was in Bengali.  I do know Bengali, that was my language.  I would say they have about 40 consonants and I would say 11 vowels in the Bengali language, so it's a lot to work on.  A lot more than English, but that is needless to say. 

So I did speak Bengali growing up.  I would say I didn't speak it perfectly as a hearing person might, but as a deaf individual, I would say I did have a slight accent in that regard. My family could understand me just fine, so working through that process, that was one thing we always focused on. 

I was schooled in a mainstream setting, so I was there with other students.  It was actually in my home village.  And that was in Telari, I is probably about 25 miles south from Kolkata and that's actually the area where my parents lived at the time. 

I went to school there, the local school with hearing students and I would sit in the classroom and do my best to observe and to learn by reading their lips, reading the teacher's lips and if they would ask me a question, I would try to be able to answer that. I would answer in what spoken language I could, sometimes it was tough because there were a few misunderstandings here and there, but they try to work through that with me. My mother worked in the elementary school at the time that was next time, so she would take time to sit with my teacher and support her through the process.  At that point, I would essentially get an abbreviated message from my mother at home.  She would work with me on what I might have missed through the day. She would tell me what to do and what work to work on and there may have been many things I missed.  That's how we got through it. 

I would say for about two years that continued until I became blind at age nine. So the way this happened was I was actually, I was playing soccer and, well, so, I guess really, we called it rugby, it was rugby in India. We were playing outside and there was another boy who was hearing.  He was pretty good, he was the team captain, but the coach picked me to be the new captain at the time. So this boy, of course, was enraged and he was upset and he ended throwing ash into my eyes and that's what caused my retina to detach. 

About three months in, I was fully blind. So, of course, this was a shock for my parents, too.  They had no idea at the time what to do or how to adjust this, so they brought me to a local hospital. The doctors tried to salvage my retina and they failed at it. We consulted a doctor for the second time. 

We actually had ‑‑ there were two things going on at the same time with my eyes and because of that it was hard for me to read, I couldn't read any longer.  For the three months going in, my vision started to tunnel until finally it was gone.  There were no interpreters there at the time.  There was no way for me to learn and to be able to communicate with others, I had no Sign Language at the time. I would speak and my parents would respond by writing into my palm with letters.  

My parents spent so much time looking for the best school for me to go. They reached out to a deaf school who said, no, we don't know how to accept students that are DeafBlind.  If they were deaf, yes, but for DeafBlind students, we have no actions for them. 

So as a last resort, my dad reached out to a Principal of a blind school and that was ‑‑ well, he told the story about what I had gone through and he heard somebody mentioning that, well, you know, there's a school called Perkins for DeafBlind students and actually the person he spoke to about this offered a scholarship and my father asked the Government of India if they might be able to help support me.  Of course, they didn't provide me assistance at the time. So my father went through looking for other scholarship sources and other places he might be able to get the money for us to go to Perkins. He reached out to some of the wealthier people he knew and long last, finally Perkins was able to get my father a scholarship for one year. And that was it, that was the time we were given, yes, we can both come, my father and I, but only for a year. 

So my father did receive the money for us to buy the plane tickets and come over here to America. So we made our way over and that was 1983. At that time, I was about 13 years old. Of course, I had not gone to school for the last four years, I just sat home and wasn't able to do much. I had a lot to catch up on.  I didn't have any English knowledge. I only knew just a few words I would say, maybe like I love you.  I knew how to say I have to go to the bathroom, or I want to eat, and I'm ready to sleep.  That was it. 

I remember the first night I arrived in America, my father was, he was in Perkins with me, and it was a really shocking experience for us because it was a whole different world. 

My dad met an interpreter who was actually from Bengali and he knew English as well so he was able to speak to that man and they spoke back and forth. My dad would tell me in ‑‑ by writing in my palm what they were talking about. He would go to class with me every morning to see what it was like for me. It was a slow process for me to learn English in the beginning, but I ended up learning it. And really, I would say the biggest thing that helped me was I was motivated to read.  I was ready to finally learn Braille and I learned new words every day with that and it was just ‑‑ I took off from there. 

I gained language exposure and within the years’ time, I was already pretty proficient in English, I would say. I was really pretty great at Sign Language. And, you know, I was proficient in Braille. And Perkins noticed ‑‑ well, they recognized my skill as having started where it was and exceeding the expectations, so we continued with ‑‑ they decided I should continue on there and continue my studies. 

So Perkins had an agreement set up I would go ahead and stay and my father would go back to India and I would stay until I graduate from Perkins. And I was about 21 years old and then I looked for a college to go to because I know my dad always approached to me saying, you have to go to college, you need to go for a Higher Education, this is what you're going to do to get a good job for yourself and be able to support yourself.  You don't want to stay home and depend on others, that's not how we're going to do this. My dad always said one line as his main go‑to, he said, I'm not going to live forever and I'm not going to be able to financially support you, you have to do be able to do so yourself.  

I was motivated to find a job, and to get Higher Education and that's what started it off for me.  I did go to the University of Arkansas and that was in Little Rock. 

While I was there, I received my Bachelor's Degree and that was in Political Sciences, but before that time, I thought about what I wanted to do as a major track and I was very interested with, you know, law.  That was one thing I wanted to get into. And after reading through it, I know there were a lot of disability cases every day that were popping up and there were discrimination claims. And that was something that, you know, I wanted to ‑‑ I knew people would look down on people with disabilities and that was one thing that inspired me to get involved with that. In this world, it seemed at the time there was a lot of differences between somebody who had a disability and somebody who didn't and I wanted to equal the playing field.  

That's when I thought, you know what?  I want to show them we can function the same as anybody else that doesn't have a disability. So I graduated from there. I got my degree, my Bachelor's Degree, and I thought about going to Law School at the time, but, again, I came to the conclusion that I didn't have, I guess, the patience, you could say, to have to read all day, every day as my line of work. You know?  And I thought, well, I think that's really what it's going to entail for the most part. 

I thought, well, maybe I'll change courses.  Maybe I'll start working a little bit and decide what to do after that. And maybe I can even go back into law later. And I rose through the ranks and I would say really I just kept to my hobbies.  One of my biggest hobbies was technology.  I grew up loving it and going to Perkins for the first time, I saw my very first Apple device and that was a long time ago. That was one of the first Apple computers they had back then.  I was excited to finally get to learn what this was and to become a computer whizz and I felt I was one.  I would always challenge others and I would try to learn what I could. I wanted to learn how it functioned, how it worked, what the programs were, so I continued on with that through high school.  

Down the road, I ended up setting my own, kind of like a short bulletin board with all of my items of my goals I wanted to do and I ended upsetting up a website. So I had this bulletin Board that was online and I was able to call through and check in to see, okay, using this technology, how do I as a person using this online check into things before I'm there?  

So it was one of the things where I used the Internet as a way to connect with the world and that was long ago.  

I also would build computers. I would go around looking at different computers and see what different components were and get a feel for each of them and then I would, you know, from the mother board to the RAM chips and the memory and the hardware itself, I would look around for the best items to be able to build a computer. 

I would work alongside some of my friends who are sighted and we would pick the best color for it. Like maybe we want to put some red here and some black there. 

And, also, when it came to wires, we wanted to make sure we had the red and black wires in the right place and then we could connect them all the board, so that's something I would do and that's how I would build computers.  I worked on DOS at the time, which is a very old operating system.  That was from way back in the day before Windows came out. It's been running ‑‑ I mean, that's how they used to run the computers back then.  

I built about ten computers myself. I ended up ‑‑ I grew that as one of my hobbies and after college I thought about it and while looking for work, I just, I thought, you know, one of my goals would be to be able to work as a person like maybe a Policy Analysts and be able to help lawyers to work alongside them with their cases.  I know sometimes it's hard to find work in these fields, but I could at least try.  

So I interviewed with a few agencies.  There was one that was an advocate agency. They had very limited funds, so they only had limited funds for the person working that position, so I didn't accept it. 

And then I had another friend who worked at the Helen Keller National Center and they told me that there was a job available and it was in the technology department. They said I would have to apply there to become a technology teacher. And I thought, well, I don't exactly have a college degree in computers, computers as a specialty, so I thought, well, maybe my skills lies elsewhere, I'm not really sure.  

I thought about it twice and thought, well, I do have a lot of experience with teaching technology, so what if my experience, my background as a DeafBlind individual, I know the first time I came to Perkins, my friends always told me, go ahead and try it, see what happens, it can't hurt to try. 

I thought about that and I applied for the role at the Helen Keller National Center and I received an interview.  And they told me they would be flying me out to New York.  I said, okay, that sounds good to me, so we flew out to New York.  

They brought me ‑‑ I brought a Braille display with a small laptop and they said, well, there was one student who we use one teacher with for a while, just one‑on‑one and see how that goes, and that was the idea for the position. 

The boss at the time said that after we viewing my application, they were very impressed with me and how patient I was in teaching this one student, so one interview led to another and they choose me for hire. 

And, you know, at the time, the students who were there, I was working with them under a student Visa. There's a lot of paperwork involved in filing for immigration and so it's one of those things that's another obstacle that we had to overcome. But working through that and also being a technology teacher, it was something that led me then to go into a supervising role in that department and there were two staff under me. I guess we slowly, together, we built that department to grow. 

The department itself had only two computers at the time to its name and there was one type of screen‑reader, just one. And there was a Zoom program for the screen and there was a Braille display.  I told them we will need more of these things.  We added more to the program.  They were very motivated to come alongside me and work through that. 

We received scholarships, we were able to reach out to different funds sources.  And we purchased those accessibility items and grew our program. Two years in, my Supervisor ended up leaving and there was a new position available for Supervisor, so I worked in that for about three years. 

My new Supervisor said they would rather have me go out to train people and do that in the field essentially, and that new position in the school at the time and there was also some professional development and presentations that would be involved in that. And there was another educator role, I guess other students would be there as well. So that would be a great time to be able to educate those students who attended during the presentations. 

As a DeafBlind person, it was just vital for me to have access to communication through technology because at the time then, when we first came out with SmartPhones, it was about $300 to buy one and they were interested in doing that for us. It was a SmartPhone that came ‑‑ we would use it with a Braille display. And the Braille display itself would cost about $1,000‑2000, which how would a DeafBlind individual be able to afford that on their own?  And there are many DeafBlind individuals who don't have that access because they don't work and they receive benefits and it's just not going to be enough to be able to manage their finances and budget something like that in. 

And communication is very important to us because as DeafBlind individuals, without communication loneliness starts to set in and you are not aware of anything going around you and if anything were to go awry, you have not privy to it. 

That's why in 2007, I and many other, I would say advocates in the group, ended up coming together to travel to Washington, D.C. and we met the Senate and we met with some Commissioners and we explained the need for these things.  We said, there's need for equipment out there and we like to go ahead and show you what we have.  It's called a Braille displace.  It's a Braille TTY and it's thousands of dollars. So when we showed them, they were shocked how expensive it was for accessibility technology. 

Actually, the representative who we met with said that we would need, I guess, they said, well, maybe a person should just, you know, they should work and maybe try to save their money and that way they would be able to launch it towards that accessibility technology. 

So we thought, well, what if the Government had set up some sort of program that would help with technology and service people with equipment?  You know, we talked about the budgeting for how you have to budget it years before. Eventually the program can come out for maybe, I would say, what would it take?  Four years.  I said that's four years without technology. Four or 40, it's years without it. So we pushed it and we went back and forth until finally we signed the communication and video accessibility act which is the CVAS of 2010. And that was an accessibility law that came to be where under that law in 2012, a national program was formed. It was a National DeafBlind Equipment Distribution Program, NDEDP, so that was one of those programs that was run. 

I actually run two different International programs. So here I am in the states, I run two programs, one of which is Florida and the other is Iowa. I'm responsible for all of the technology with all of the clients under that program, to see if they qualify and see if we can assist them, if they have a specific income threshold that is required, then we can go ahead and purchase accessibility equipment for them and we can provide training on how to use it and that can include iPads ‑‑ I'm sorry, laptops to tablets to iPhones to screen‑readers, Zoom software, really any sort of accessibility equipment that we would have to add to make communication accessible for them. 

And all of the money that funds it comes from the FCC, the Federal Communication Commission, and they offer over 10 million dollars a year for this program for all 50 states around America.  

It's a really impactful program and it's been really successful so far.  Looking around the world, it's one of those things, we see there's still such a need for accessibility in every country, for those that are DeafBlind, let's say. And even in this year, in January, I went to the first national DeafBlind meeting and that was a conference and that was in ‑‑ I'm trying to think of the name. I'm trying to think of the name. 

I'm sorry, did you have a comment? 
>> DOUG ROLAND:  Yeah, just one moment.
>> ANINDYA BAPIN BHATTACHARYYA:  Go ahead.
>> DOUG ROLAND:  I want to get more into that in a moment. You shared so many great things in there, I want to walk back a little bit and talk about some of the great topics that emerged from your personal story that you told so beautifully. 

There's so many things I want to talk about there, but one of the things that sticks out right away for me was, Bapin, when you were talking about your relationship with your father and both of your parents, but when your father said, you know, I'm not going to be around forever to take care of you, I want you to make sure that you can be independent. 

You know, immediately, Ferose, I thought about some of the stuff you and I have talked about and obviously, you being a parent of a child with special needs, and maybe if you could talk a little bit from the parents' perspective and really how that's led to kind of us being here today. If you can kind of connect the dots on that for us.
>> FEROSE:  Yeah, no, it was so amazing to listen to Bapin's journey. As I said, I'm still, I would say pretty early in my journey with Virvan, who is just 11 years old, he's non‑verbal, so he can't speak, he has autism, and every day struggles is what Bapin explained. What do you do?  What is his future like?  

And the emphasis on education. One of the reasons I came to the U.S. is exactly the same thing as Bapin had, which was my son, because he was non‑verbal, he couldn't go to a school and autism at this point, I'm talking about 2010‑2011 when he was diagnosed with autism, it wasn't even seen as a disability in India. It was added to the list of disabled only in 2016. 

So obviously, when it's not recognized as a disability, there are not enough funds from the Government, not enough special schools, most of them are private, there's no public schools and so on. 

When I was listening to Bapin, it was like being on the other side as a parent and I can imagine all of the struggles Bapin's parents have gone through.  The reason why he came to the U.S. was exactly the same thing, is to find education that would eventually lead to independence.  

Again, for me personally, I'm still incredibly fortunate that I could move to the U.S., but I always go back to the whole idea, like, what happens to those people who can't move to the U.S.?  It's just not easy for everyone. It's incredibly hard, it's incredibly expensive. 

I sometimes, I must say there's some sense of guilt deep inside me that I'm fortunate to provide education to my son, but what about the thousands and millions who are not that fortunate?  

So even the move to the U.S. six years back, I still have very deep connections with India and the Inclusion Movement. So even though I've been here now six years, we still have a volunteer base that still runs many of these activities around disability. 

And, you know, when I look from a parent's point of view, I think education is the core of everything. And the way I and my wife handled it was very different.  I never ‑‑ I always felt that, okay, he should go to a school, he should learn, you know, some basic stuff so he understands, he can read on his own. And I must say that I was not ambitious enough for him. 

Whereas my wife was extremely ambitious.  She was like, no, we want him to go to University, there's no reason why he cannot. I was limited by my own understanding.  He's on the spectrum, he is non‑verbal, how will he ever communicate?  And when I listen to Bapin's journey, it gives encouragement and hope that we should all be extremely ambitious for everyone.  

And I think this is a great message that Bapin has shared. That irrespective of what your disabilities are, I think you should never think small. And you should try the best with all the accessibility feature that is are available to you to make the most of it.  That's one aspect. 

The other aspect, that I'll connect back to what Bapin was saying is the use of technology. His life changed because of computers, because of iPad, because of all of the Apple technology that is are available. 

I think as technologist myself, I think technology has a huge role to play and make it a much more level playing ground for everybody. It doesn't matter if you have a form of disability or not, I think the ability to live your life to the fullest potential is possible because of technology. 

And I think now technology is becoming cheaper and cheaper so more and more people have access to the technology to live a fulfilling life. 

So those are some things that I have been reflecting on when I was listening to Bapin, more as a parent as to, what do I need to do to really maximize the potential of Virvan, but also maximize the potential of every child in this world, irrespective of what their abilities or disabilities are.
>> JASON SCHWARTZ:  This is Jason, the interpreter speaking, it seems as though Doug is having some tech issues.
>> FEROSE:  Okay.
>> ANINDYA BAPIN BHATTACHARYYA:  This is Bapin.  I wanted to make a comment. I wanted to say thank you for your comments. I have two short things I wanted to add in respect to that. So the first thing regarding technology, I would say it's great because it has not stayed stagnant. Over the years it's gotten so much better for accessibility and disability. 

As far as technology goes, it's funny for me to meet people who have no idea how to use the Internet. For instance, I can just communicate straight back and forth with a person who has good English skills as a hearing person because we can type on the, let's say. There are actually a lot of Tech Support people I reach out to the phone and we'll just have conversations back and forth and then later I'll meet them in person and I might see that they might have had an attitude in person because they're like, oh, look at this person who is DeafBlind. It's very interesting to see how the perspective changes when they didn't know I was DeafBlind on the Internet and we are communicating on message and they see me in person and how things change.  

I think it really demonstrates that I'm able to function in society just the same as anybody else and in an everyday way when I face challenges, and let's say, when they give me attitude, I try to calm them down and keep things positive, but I also try to I would say on a friendly tier with them, a good side with them, and kind of move on from there. 

I remember I've had plenty of experiences with those and I think I will until the last day of my life, you know?  

And the second thing I wanted to add about what you said was, I ‑‑ so as a father, it's interesting how my role has now reversed because I'm a DeafBlind individual myself and sore for my son, he is a hearing, sighting individual and he does not have a disability. I have the disability and still I treat my son as ‑‑
>> DOUG ROLAND:  If I can get this back up, hold on a second.  

Hello, everyone! Okay. Oh, shoot!
>> FEROSE:  I think Doug probably had some Internet outage at his site, right? 
>> JASON SCHWARTZ:  This is Jason speaking. Yeah, Doug had a power outage, he just texted me, so I think he's just trying to figure out what to do.
>> FEROSE:  Okay, no problem. No problem, no problem. I'm just trying to check out what's happening on the live website.
>> ANINDYA BAPIN BHATTACHARYYA:  That sounds good, yep. 
>> DOUG ROLAND:  Hello! Sorry, everyone. I literally have the most stable Internet connection here, I've never had that happened, and, of course, of the 60 live shots that's the first time that has happened.  

So we're going to finish our conversation a little while longer and I can stitch them and upload them. It won't be a problem at all.
>> FEROSE:  Murphy's Law, right?  [Laughter]
>> DOUG ROLAND:  I literally have never had once even the slightest problem with the stream here and, of course, the one time.
>> FEROSE:  That's life, no worries.
>> DOUG ROLAND:  What we'll do, Ferose, if you can kind of remember roughly where you were at, where you dropped out.
>> FEROSE:  Yeah.
>> DOUG ROLAND:  Pick up there and I'll continue it for like another 20 minutes or so.
>> FEROSE:  I think Bapin has a question.
>> DOUG ROLAND:  Bapin, do you have a question? 
>> ANINDYA BAPIN BHATTACHARYYA:  Yeah, I would say that I think that maybe all the comments that are coming through, maybe that's just what broke our technology.
>> DOUG ROLAND:  You know, I'd like to think so. We'll see.
>> [Laughter]
>> DOUG ROLAND:  I'm going to just get back up, just give me one moment here because I'm going to get Bonnie's captions back up here and that's the last thing I need to do and then I'll hop right back into this. Just give me one moment here.
>> DOUG ROLAND:  Sorry, everyone, we'll can back up in just a moment.
>> FEROSE:  Sure, sure. 

>> DOUG ROLAND: All right, everyone, just moments away here. Sorry for that delay. I think we're all up here, just give me one second. 

Looks pretty good.  Sorry, one moment. All right, almost there. Okay, we'll make that work. 

Yeah, we're going to just get back into the conversation here.  And, Ferose, if you want to do your best to pick it up.
>> FEROSE:  Sure.
>> DOUG ROLAND:  There's one more thing I need to do to my name here and then we're good. 

Okay, I'm going to start recording again and, Ferose, take it away.
>> FEROSE:  So, you know, what I was trying to tell is as a parent, we need to be ambitious for our children and being, you know, working towards maximizing the potential of every child irrespective of what their abilities are is so integral. 

I consider myself as having learned through that journey, but initially I wasn't ambitious for Virvan, I was thinking in terms of limitations.  

But when you listen to what Bapin has spoken about and what he has achieved, it gives us hope. As parents we live on hope for a better future. 

The Inclusion Summit is nothing but a platform of hope for everybody.  That what it does, it provides hope to parents, caregivers, families, and I think that's what the platform is. In many ways, that's what your movie is about, Feeling Through, and what Bapin is all about and I think that's the core to what we're trying to do.
>> DOUG ROLAND:  Beautifully put. 

You know, Bapin, I'm wondering, obviously, as you described, you had the great fortune to be able to end up in a situation where you had access to the education that you needed to thrive in the way that you have. You're obviously a very accomplished person who has done many things. 

I'm wondering what connection you still have to India and how much things might have changed around education for the DeafBlind since you were a small boy there.
>> ANINDYA BAPIN BHATTACHARYYA:  Sure. And thank you, Doug. Thanks for asking that. 

I would say that when ‑‑ oh, the last thing I was mentioning actually in my comment, last January, I did go to Kolkata and that's where they set the first DeafBlind National Conference.  And the thing to understand about that is there are two DeafBlind individuals who are two young men and they planned on setting it up and they asked me if I would be involved and if I would help them.  And my response to them was, I would be happy to be an Advisor and to help you, but to be fully involved, I think this should really be your project and you should lead it and it should be under your discretion, so we should follow your lead with this meeting. 

When I did get there, I was impressed to see what they had put together. It was over 60 DeafBlind individuals with their guides, their interpreters, and I noticed there were two DeafBlind leaders who were on the stage. They were the ones making the presentations.  They were the ones with the comments. And they asked other DeafBlind individuals if they wouldn't mind sharing their life experiences, their frustrations, their goals. And everybody was quiet when they offered this and nobody answered. 

So this moment is one of those moment where you want to go, okay, well, is somebody going to stand up?  So one person did go ahead and stand up and it was a DeafBlind individual from Aldine, so they went ahead and they took the stage. 

And the two presenters just gave them the opportunity to speak and it was incredible. It was very impressive for me.  I loved seeing how active they were and how motivated they were to lead this. 

And really, once they set this up, there were a politicians who were there sitting in the room. It was very inspiring to me to watch their story.  It's a very long time coming and a very long road for the Government to change their stance on how they address people with disabilities and what they will do for them and to continue supporting things like this, you know, this is the goal. 

And to have interpreters, let's say there, for the opportunity support them. 

Recently in February, I went to Chili in India and ‑‑ well, actually, this is not my first time going, it was three times in a short span, but it was very interesting.  

I was shocked to receive the CalvinKare Award and this award is for my leadership and for influencing those around the world for ‑‑ for people around the world with disabilities and to give my continued support and it's very inspiring to have received that award.  

The goal for me is to continue reaching out to people, they still have frustrations, they still have their fights, to continue reaching their goals and break those barriers down.  I would like all of us to live together in harmony and have every day experience and I would really like in a monthly basis to get involved in all sorts of events. I wouldn't want things like barriers to get in the way of that or discrimination to get in the way of that. I want to be able to help highlight those who have disabilities and help them receive the benefits of accessibility moving forward. 

>> DOUG ROLAND:  And Ferose, I'm wondering since you talked about your experience with your son and certainly when your son was very young and you first found out about his diagnoses and kind of what you did from there, what, if any, progress have you noticed in India?  And where do you think the next evolution of things need to happen to really move to the next level with that? 
>> FEROSE:  What I have realized in the last ten years is that the entire space is incredibly complex.  There are so many different layers that any system‑level change that needs to happen requires massive coordination. 

So my big insight has been that there's a lot of great work happening at various nonprofits, for‑profits, organizations, Governments and so on, but unless there is a concerted effort for everybody to work together, I think progress will be very limited. True progress happens when everybody works together. 

I think that has been the goal of the Inclusion Summit, we are disability agnostic, it doesn't matter what disabilities they are, it doesn't matter what nonprofits you come from, we just want to amplify and share the stories. That was the core idea, to get everybody together. 

For having worked in the conference for more than two decades what I have seen is that corporates have the financial means and the intellectual capability to drive change.  So corporates have a very important role of being a front runner in driving change.  

The significant change I've seen in the last five‑six years is the entire topic of diversity and inclusion has now become an integral part of every corporate strategy. It was seen as good to have. But now there are chief diversity and inclusion Officers in every large corporate. 

But it's become such a core, strategic piece of every large company, it has also meant there are funds associated with it, so there has been a larger spotlight on the topic of inclusion ‑‑ diversity and inclusion overall.  

I have seen a lot of change happened. I must confess, I'm pretty amazed that the last ten years have seen, I would say an exponential increase in understanding and awareness. 

The other thing which I think has played a huge role, and you as a filmmaker would realize, is films have the power to drive social change.  

And what has happened thanks to OTT is that now good, quality, good content can reach the bedrooms, right?  We lived in a culture where you need to make a big budget movie before you have a release on a theater, right?  

But today, you can make an outstanding movie, release it on YouTube, release on OTT, and so I think the medium has massively expanded and I would say OTT and YouTube has just amplified great content at very low entry barriers.  You don't need a lot of money to make a good movie. I mean, you know, if you just have a good idea and, you know, somebody who really knows how to put it together, someone like you, I think we can drive social change. 

And I strongly believe that movies have a big role to drive social change.  When I asked the Bengal International Short Film Festival to have a section for inclusion, that was the first time they ever did. And we thought maybe we would get ten applications, we got 400‑plus applications, Doug.  I had a hard time judging the final 32 movies because they were so damn good. Right?  

So I think movie have a very important role to drive social change and spread more awareness on the topic of diversity and inclusion.  

So the good news is I think a lot of change has happened, but we still have a lot of change to ‑‑ we still have a long way to go.
>> DOUG ROLAND:  Yeah, you know, I certainly personally love your recognition of the role that movies and stories play, you know?  And just in listening to you talk about the corporate side of it, to me it's really kind of a merging of those two, you know, I think really goes a long way.  

As a social impact filmmaker and spending a lot of time in that space, I know that a lot of things are starting to progress there are people trying to mobilize to create more connections between, you know, social impact filmmakers and story tellers and entities that have the resources to help tell those stories.  So that's certainly something that ‑‑ a place, at least in my world, where those two worlds collide or trying to come together more. And a place that can help accelerate changing the narrative on a larger scale.
>> FEROSE:  Absolutely. My thinking is the real power is at the intersection of multiple people coming together. And I think the Conference, as I said, has the financial ability, the intellect to drive large‑scale change.  Nonprofit brings a huge element of compassion along with what they are trying to do. And Governments have the ability to do massive scaling because they have so much of reach, right?  

And I think magic will happen at the intersection of all of them.  Where the Governments, the core operations, the nonprofits, that sweet spot is where you will drive a lot of change.
>> DOUG ROLAND:  Yeah. 

Bapin, a question for you, you know, I'm wondering as we look forward here, and, obviously, the Summit is an opportunity to both reflect what's happening and what needs to change and also to discuss where to move toward, what progress looks like. I'm wondering, Bapin, in your words, what does progress look like in your estimation?  And, you know, whether it be specifically for the DeafBlind community or for Disability Community as a whole.
>> ANINDYA BAPIN BHATTACHARYYA:  Sure, I think that was a very good question. 

I would say that there are really many, but the top one we can talk about is I would like people with disabilities to feel that they are welcome in communities.  I want them to feel that they are able to independently traverse communities and have their own accessibility. They are able to go and be able to transport themselves. I want them to be able to do things as they see fit, you know, for themselves. 

You know, I want them to be able to enter any business, any bank, and so forth, the list goes on.  I would like them to live in a community of other people and not find themselves stuck in a situation where they can't seem to breakdown the barrier of communication.  Or if there's an interpreter that didn't show up, what are they supposed to do then?  

I would love to see that there is maybe a new communication system.  I would say like a mechanical or robot communicator that would then be a reference for them so if they had a disability, they would still be able to still, you know, they could run for Government, they could do things in leadership roles.  

I would like to see people with disabilities become mayors.  I think really in the world it seems there have not been any people with disabilities like these that have run for Government. There are very few. But it's usually a situation of a hidden disability, like a learning disability, or it could be something that is physical, but not quite visible. You might see they speak clearly and perfectly, but maybe there's a disability you don't see. 

So in New York, for instance, long ago, there was an individual with low vision and they were the first of their kind to be able to go into Government. I want to see in politics there are more DeafBlind individuals.  I don't think there are any right now who are DeafBlind. 

I think the world ‑‑ I want it to become a place for everybody to be part of one group, one community.  I fly back and forth very often from one location to the next and I'm often frustrated in the process because there are so many barriers.  I'm not able to get on to a plane by myself because I'm a DeafBlind individual and how am I to communicate with others?  In my 35 years of flying on planes, as often as I do, still today it seems like an issue and there are many barriers even around that. 

You know, there are many things, I would like to see these barriers eliminated across the world and in our communities. 
>> DOUG ROLAND:  As we enter the last several minutes here of our conversation, you know, Ferose, I'm wondering if maybe you can tell people about what they can see at this year's Summit. I know some of it has already happened.  Some of it is upcoming.  Can you talk about maybe some of the highlights and some of the different voices that you are featuring this year? 
>> FEROSE:  Yeah. So, you know, we broke the Inclusion Summit across four weekends.  The first part of the event was done last week end, on the 7th of November. This being the Bolly Week, we took a break. The next event will be 21st November and I'm talking about Indian standard time right now because that's where most of our viewers are.  We are doing something called Inclusion Summit for the Youth. This is the first time we have reached out to 500 schools across the country and we wanted to take the message of inclusion to the younger population in the country because we believe that true mindset change happens when you start early. 

So we have reached out to a lot of schools.  We said this two hours of the Inclusion Summit should be made mandated viewing for the students and afterwards ask them to write an essay about, what does inclusion mean for you?  

So it's making it both fun and interactive. So that's on 21st November from 11:00 AM to 1:00 PM. 

And then in the evening on the same day from 5:00 to 7:00 PM we are doing a celebration aspect of the Summit where you would be featured, where we have Shakti Kapoor, who is an Academy Award Winner Director, really talking about art, movies and culture.  That's on the 21st. 

And then we end on the 28th November with focusing on corporates and entrepreneurship and nonprofits and that's also between 5:00 PM and 7:00 PM. 

We are also in the discovery phase, Doug.  This is the first time it's fully virtual, so we are learning as we are doing stuff, but we're having fun.
>> DOUG ROLAND:  I love how you're sharing it in schools and that way. You know, something that we have started to do with the Feeling Through Experience is share it in schools as curriculum.  

I think when we talk about what does progress look like from here, you know, we've already started to talk about changing the narrative, having, you know, people who are DeafBlind and people with disabilities be in all sorts of, you know, holding political offices in much more visible positions, I think something that will go a long way in helping that change is to bring these topics to the younger generations and have it be something that is super normalized at a very young age so that we can get to a more equitable world a lot quicker. 

You know, I think since, Bapin, since you were a small boy, I think a lot of things have changed around the perceptions of people with disabilities, not to say there aren't still a long way to go, but I think there's been a lot of change around that and I think if we can continue to bring that message to younger people and have that really be something that's ‑‑ becomes commonplace to them, that's how we really start to really deeply change that narrative. 

You know, with the last couple minutes we have here, I'd love to just get some closing thoughts, whatever you would like to share from both of you. 

So, Bapin, starting with you, maybe for about a minute here, if you could share whatever closing thoughts you have for our conversation today.
>> ANINDYA BAPIN BHATTACHARYYA:  Yes, of course.  

I would say the most important thing would be to look into modifications so that individuals can live independently with whatever they would like to see.  I would like to see included support for different circles of individuals, so parents to friends, maybe they can support one another because for an individual who is alone with these experiences, they will want peers alongside them.  

And, also, I think it's important that they have that support from others around them so they can be successful in breaking their years down.  

I, also, would be able to my experience, I could share mine with somebody, I can show them and teach them how I have done so and they can do the same for me. 

And many parents, they are barriers to their children's development in many of those ways because they help, they always want to help.  I see them as wanting to help instead of seeing us as equals and that has to change. It's very important that they allow the children to be independent.
>> DOUG ROLAND:  Ferose, why don't you bring us home?
>> FEROSE:  One thing I have learned is to accept people the way they are and be prepared to make some adjustments. I think that's incredibly important, whether it's at the workplace, whether it's at home, if you are able to make some adjustments, I think we will make the world a much more equitable place.  

I'll end with one of my favorite quotes which says that, accept what I cannot change and change what you cannot accept.
>> DOUG ROLAND:  Well, thank you for that. And thank you so much for having us be part of the India Inclusion Summit. I know in the time I have gotten to connect with you and your team and partake in the Summit, it's certainly gone a long way to my personal continual education. And it's really just an honor to be a part of it. 

Bapin, thank you so much for joining us as well. It's really always a pleasure to speak with you. 

And I appreciate everyone on this stream who is in very odd hours here to accommodate an audience overseas here for where we are.  It's really been a pleasure.  

I encourage all of you watching to go to IndiaInclusionSummit.com. You can view a lot of great events there. 

Thank you very much, Ferose and Bapin. I hope to speak to both of you soon.
>> FEROSE:  Thank you, Doug. Maybe you should mention that the movie is available so people can view it over the next few days, right, Doug? 
>> DOUG ROLAND:  That's correct. We'll leave it up for a good little while here.
>> FEROSE:  Thank you.
>> DOUG ROLAND:  Knowing people can't always get to the live streams, they will be able to still view it, so we'll have it up for quite a while for people to be able to see.
>> FEROSE:  Thank you, thank you. Thank you, Doug for all that you do. 

And Bapin, what a delight to meet you and see you and learn from your journey and thank you for all that you do. 

And to my lovely translators, thank you so much. Thank you. I know this is odd hours, I really appreciate it.
>> JASON SCHWARTZ:  It was very nice to hear you and your perspectives as well. Thank you.
>> DOUG ROLAND:  Excellent. Have a good rest of your day or evening or where ever you are. 

IndiaInclusionSummit.com, check it out and thank you for watching. 

Bye, everyone.
>> FEROSE:  Thank you. Take care. 

Feeling Through Live • Episode 31: India Inclusion Summit

[Doug]: Welcome to episode 31 of Feeling Through Live. I have the distinct pleasure to be joined today by Ferose of the India Inclusion Summit and of many more things. And before we kind of get into the heart of this conversation, Ferose, we've had the pleasure to get to know each other over the last couple months, but I really got to go a little bit more deep into getting to know you over the last week, preparing for this episode. And because I know we're not going to get to all of this, I just want to give everyone a quick little snapshot of all of the many things that Ferose has accomplished here. And mind you, I'm sure this is the short list here, but let me just give a little bit of a proper introduction of a lot of the many things that he's been involved with, and then we can kind of narrow in on it a little bit more. So Ferose heads the SAP Academy for Engineering, he's also the chairperson on the board of Specialineste...sorry, Specialisterne USA, which is a non for profit foundation with the goal to create 1 million jobs for people with autism and similar challenges. Yes, that's right, 1 million jobs for people with autism and similar challenges. We'll get to more of that very shortly. He's also the founder of the India Inclusion Foundation, which is a nonprofit aiming to bring the topic of inclusion at the forefront of India. Of course, that includes the Indian Inclusion Summit, which we'll be discussing today, but a couple other things that I want to let you know about that we might not have time to get to. He's a best-selling author who co-authored the book Gifted. He's a regular columnist in a lot of different publications that he's had published, some of which have gone viral. And here's some cool things that I just, you know, there's, he has a very long list of achievements. He's in something called the Happiness Hall of Fame, which, Ferose, when I read that, I was like, is there a cooler hall of fame to be in than the Happiness Hall of Fame? I might have to ask you a little bit more about that in a moment, but I just think that's about the coolest thing I've ever heard. And then a couple other things, he's young global leader, named a young global leader by the World Economic Forum, India's top 40 under 40 by Economic Times and Spencer Stuart. And I mean, honestly the list goes on here. I don't want to spend our whole hour just talking about your achievements, even though they're really impressive. But you know, Ferose, I guess before we kind of get into the meat and potatoes of everything, I'd love for you to just have an opportunity to introduce yourself, because to be honest, you're in a great way such a hard guest to introduce because you do so many things. So how would you introduce yourself?  

[Ferose]: Firstly, thank you, Doug. I mean, I feel very flattered and I must confess, I hate to share my profile because that's what I call as the official profile because people ask me to send that in, but I have another profile, which I call it my failure as you may, which by the way, is a much longer list, which, you know, I'm happy to share it as well, but I always say the introductions are sometimes very one sided and I love the introduction because I always say, I wish my mom and dad were there to listen to these introductions because my dad will feel very proud and my mom will actually believe everything. Right. So I think we shouldn't put too much emphasis on the introduction part. But yeah, if you, if you ask me the one thing that I'm incredibly proud of is really the work that I've been able to do in the last 10 years in the space of disability, because this was one topic which was a topic which wasn't spoken about, which was really a community which was marginalized. And for me, the work in the disability space gives me the greatest joy. And of course I have a day job as an executive at SAP, which is, you know, which is already a very interesting job. But I think the work that we've been able to do in the disability space has been just both very fulfilling and life-changing for me. So I would say if there's, if there's any introduction, if people remember me for the work in the disability space, I think then I've lived a life worthy of something.  

[Doug]: Well, in addition to that, I also want to make sure people don't miss the amazing Dali clock that's right above your head. We had to make sure we pointed that out, but you know, I'm so fascinated by this because for someone who is as accomplished as you are as a business person, and obviously I'm sure tremendously busy and leading teams of thousands of people globally, what brought you into the disability space? Because I know that's something that now takes up a tremendous amount of your time as well, and really is your passion as you just described. So what brought you into that space?  

[Ferose]: Yeah, I mean, you know, if you allow me, I'll try to start with where it all began and I have to rewind a little bit. It all started in the year 2010, so it's almost a decade. And at that time I was heading SAP in India, which is, you know, SAP is a German multinational, it's a hundred billion dollar company, a hundred thousand employees worldwide. So it's a massive organization. And SAP had a big R&D center in Bangalore. And I was heading that. We had around 5,000 plus engineers and I was the head of that and when I look back, I think I was incredibly lucky to get a leadership role at a very young age. I just 33 when I was the head of SAP in India ,was one of the youngest to take such a leading position in a global multinational. And in many ways I thought, you know, I had located the perfect life. I was heading a huge multinational. I had married my college sweetheart, which took me by the way 10 years. That's a different story. Me and my wife, me and my wife went to the same college, sat in the same class. And eventually got married after a lot of family pressure because I'm a Muslim and my wife is a Hindu and that's, that's a perfect recipe for disaster. Especially if you know the India context. But I got married, then I had my son and you sometimes feel that life can't get better than that, you know, great career, great family. And then my life changed when one moment, you know, again, I realized that after multiple tests and things like that, my son Vivaan was diagnosed with autism. So that was when he was 18 months old. And I remember that moment when the doctor gave me the diagnosis, me and my wife, and we drove back home and we didn't speak in the long journey of an hour in the car, which is just, we just didn't know what hit us. I went into my bathroom, I locked myself and cried for half an hour. I said, here goes my perfect life. And you know, as an engineer, your default thinking is you can fix everything, right? You think that, oh, you give me a problem, I can fix it. So the first reaction was to the doctor, okay, fine, you know, this is autism, I get it. So tell me, how do I fix this? You know, what should I do? What medications will fix this? And he said, no, this is a condition for life. Of course you can do therapies and so on and you can get a way around it. And he's just very young, so you don't know if this is going to be a severe form or is this going to be a mild form? And I just couldn't understand that I've been dealt with something that I can't fix, right. And I went into depression, I went into denial and I was like, you know, I just couldn't handle it. And after that, I think my, you know, there was one phone call from my mentor that changed my life. And, what happened was when I was going through this low phase, my mentor, her name is Dr. Kiran Bedi. And she is one of the most admired women in India. And I was really fortunate to know her. She called me and said, Ferose, why this radio silence? Why haven't you called me for a month? And now you are not responding to emails and messages. And I broke down and I told her, ma'am, you know, Vivaan is diagnosed with autism and I don't know what to do and they say there is no fix. And she said, Ferose, let me tell you one thing, is that most people spend their entire life not doing what their purpose is. You're incredibly fortunate. The purpose found you. And she said, spend the rest of the life not just taking care of Vivaan because that's required, that is what every parent would do. Your first responsibility is to your child. But you are in a position of power. You are in a position where you're financially independent, you have the network, the intellect She said, use this to support other less fortunate people like Vivaan. Then you would have led a meaningful life. And you know what, Doug, that conversation has stuck with me since that time, right. And for me, even though the time after that has been, you know, a lot of challenges when you have a child with special needs, it's a day in and day out challenge, but it's also been the most fulfilling experience that I've had because I found a way to convert that personal pain to a larger mission.  

[Doug]: Well, you know, thank you for that amazing introduction to a lot of the topics we'll be discussing today. What I love so much about that is, in getting to speak with a lot of incredible people like yourself who are doing amazing things in many spaces, but, you know, on this platform, the disability space, something that tends to be a common theme is having this really amazing kind of origin story, if you will. And, you know, I think yours is, you know, I don't mean this to minimize it at all, I mean this to really elevate it, it's kind of this stuff that like great books or movies are made of. Really just this, you know, as far as you kind of having this perfect life, thinking it's one thing, having something happen that really feels at the time this devastatingly bad thing, and then coming to realize the ways in which it changes you in this very deep-set way.It's, quite literally the greatest gift that you will ever receive in your life and just that whole journey and everything that sprouts from it. But I think what separates you from a lot of people is the scope to which you've carried this. And, I think something that I read in reading a lot about you that really stood out to me was that there's a lot of people who want to, when they say have a child with special needs, they want to make the world, they want to make that child have a more fruitful life in the world and help them adjust to the world. But what I loved so much about the way you took it is that you wanted to change the world to be better for your son. And, and it's like, I love this idea of, rather than just helping this person along, I want to help change 7 billion plus people so that they can see things differently. And I think it's the scope of what you do that really sets that apart. So going back to that moment again where you heard from your mentor that really started to crack things open for you and really change your mindset. Can you walk us through kind of like how, you know, I know it's a long journey with many beats, but how we kinda got here, what your first steps were to enact that vision that you had?  

[Ferose]: So I think, I will always say this, that we are all actors in a series of coincidences, right? We're all very smart in retrospect. But at that moment, I was just going through a phase of discovery, right. Once I realized that this is my purpose, I said, okay, I really didn't know what to do next. I was like, fine, I found my, I know I want to do something, but I really have no clue. I really didn't understand the disability space at all. But I started by actually talking to parents. I started speaking to a lot of parents who have special needs kids to really understand what are their challenges. And I went on a discovery phase, right, from watching every Ted Talk on autism to every book on autism. In fact, I actually flew down from Bangalore to meet Temple Grandin here in the US. It took me 36 hours and I had a 90-minute lunch meeting and I flew back. I did crazy stuff. I was like, if I have to meet Temple Grandin for 90 minutes, I'm going to go around the world. And so I was, again, I think I was really fortunate that I had the means to do some of this crazy stuff, but I really went out on a phase of discovery because I didn't know what to do. And I think there were a few moments that really defined me and I'll share a few conversations that happened. So while I was speaking to all the many of these children with special needs and their parents, I remember one conversation with the father. When I asked him, what is the biggest challenge that you face? What keeps you awake at night? And he said, Ferose, I got the same answer across everybody. They said, I don't know what to do with my kid after I'm gone. Almost everybody had this as the number one challenge, but I heard something from this father that broke my heart. And he said, Ferose, my wish is to live one day more than my son. And for me, that broke my heart. I said, you know, if you read any form of books that are on pain and death and others, they say the most painful experience any human being goes through is to see their own child die before them. And here was a father saying, my wish is to live one day more than my child, because I don't know what happened to him after I'm gone. And that broke my heart. And that for me, really felt like, yeah, that's true for me too, right. And so I said, we have to change that narrative. We have to do better. We can't leave these kids just to, just in the hands of no one after we have gone. So that was one big moment where I said, what do we need to do to defy, to change the narrative for people with disabilities? So that was one. The other moment, which, and both of these led to two different actions that I eventually took. The second one was I was not able to understand why disability is a taboo in India, right? I was like, why don't people speak about it? Why are, you know, you have, if you look at the data, Doug, in India, they say only, the last census that only 2% of people are people with disabilities in India. World Health Organization says the world average is 15%. So how is it possible that India has 2%? Because we don't talk about it. So the data shows us that we don't either capture them or we don't talk about them. And if you don't have data, you're not going to move the needle. And that's when I really tried to understand and figure it out. It is deeply rooted in our religious beliefs and my mentor, his name is Arund Shandy, he wrote a whole book around this. He said, so he said, let me understand, what does different religions talk about disability? What does Christianity say? What does Buddhism say? What does Islam say? What does Hinduism say? And he said, the core problem is that in Hinduism, they say that if you have a disabled child, it is because you've committed the sin in your previous life. Now if you have that negative narrative, why would anybody want to talk about it? Because everybody's feeling very guilty of having done something so bad that I've been now given a disabled child to suffer, right? And that was a core reason why it's seen as a taboo topic. And he said, for us, if you want to drive change, start by changing the narrative, right. And that was really the genesis of the India Inclusion Summit. He said, Ferose, do something where you celebrate people's disabilities. It should not be one talk which is hidden, and it's not about sympathy, but it's about celebration. And so that was actually the genesis of the India Inclusion Summit, where we said, we will bring these unsung heroes and we will bring these world leaders and we will get disability to be discussed in mainstream. So that is basically the two areas that I started working on. One was really to make sure that there is some form of employment so that autistic children or people with disabilities have independence. And the second was to bring the topic of disability to mainstream so that it becomes okay to have any form of disability in your family or in your friends.  

[Doug]: What I really love about what you're doing is it's not just about, again, creating more accommodations for the disability community, it's really about deeply changing the narrative around it. Like you said it's having a much wider-scale awakening for people as to changing their misconceptions and deeply held, damaging beliefs to a community that's really much more diverse and much more capable than a lot of people really know. And again, you talked about creating a lot more opportunities for the disability community and something that I know has been somewhat of a rally cry, if you will, for a lot of the work that you do is that everyone is good at something. Can you talk about how that applies to the work that you've done within SAP, specifically around autism?  

[Ferose]: Yeah. So, you know, when I realized, when I tried to dig deeper into this problem of why people with disabilities are not getting jobs, because jobs or employment is the only way of independence, right. And I realized, and when I looked at the data, 99% of the people who are disabled, or especially when they are any form of intellectual disability, have no meaningful employment. And many of them do some small task at home just to be busy, but there was no meaningful employment. And that's when I met Thorkil Sonne, who's from Denmark and he had the same challenge and he started his own organization called a Specialisterne because his son was on the autism spectrum and said, you know, he would never get a job. And the reason he would never get a job is because he was non-social and his communication skills were limited. And he said, these are the two skills that you need in your workplace, good communication skills, and the ability to work in teams. And he said in the absence of those two, my son, who was even though, you know, very smart and intelligent, never got a job. So he said, let me start my own company. And over the years, it became a very successful organization with around a hundred employees. And just to note, this was a for-profit organization. This was not a nonprofit. So he said, I want to prove that there is a business benefit in hiring people on the autism spectrum. I was so inspired by what he did, I actually flew down to Denmark, spent two days, understood what he was doing, came back to India, and I told my leadership team, you know what? We are hiring people on the autism spectrum. And people were like, what are you smoking? I mean, does this really work? What are you talking about? You don't even know what people on the autism spectrum are capable to do, but I've seen it work. So I wouldn't claim any credit for it being an original idea. I've seen it work. And I said, if it can work in Denmark, maybe it can work in India too. So I took a leap of faith, Doug, hired three employees on the spectrum. Believe me, they had no college degrees, you know, they would, they could browse the internet and they had some good skills, but we spent time to train them. And after 18 months we proved that their outcome was better than my best engineers, right. And so I was able to prove that there is a business value in hiring people on the autism spectrum. And I was like, you know, if we can hire people who will never lie, who will always tell you the truth will always show up on time, who's ready to work seven days a week, never ask for a hike, never ask for a promotion, I'm like, and they do better work than my engineers, why the hell shouldn't I hire them, right? And I said, if you can hire sometimes people with bad attitude, I would do anything to hire people with the right attitude. And what happened after that, Doug, was nothing but a series of, you know, just serendipity I would say. Forbes carried an article and that article is called, everyone is good at something, because I just told that in my speech while I was doing the interview and the journalist read to it, the whole article went viral. I think the journalist went, got some awards and he was like, I didn't do anything in this article. I just transcribed your speech. That's it. But that opened up a lot of doors. And that same year I was selected as a Young Global Leader by the World Economic Forum. And, you know, Davos is like the stage where the who's who of the world comes together. And I got invited as a young global leader. And they said they selected, I think maybe five or 10 people to give a five minute pitch of an idea that can change the world. I gave us four and a half minute speech called the ability in disability and why hiring people on the autism spectrum makes business sense. CNN carried my speech the next day. And my CEO read that newspaper. What's the chance that my CEO reads the news about me in a conference, which is where their are like thousands of people? And he called me for a breakfast meeting and said, is this true? What you're doing? Are you hiring people on the autism spectrum? I said, yeah, I've done it for the last one and a half years, but I didn't tell anybody, right. And he was so inspired. He said, if you can pull this off in India, which is the hardest place to do, you know where there's no healthcare, there's no insurance, there's no medical support, there's really no infrastructure. So if you could pull this off in India and you are saying it makes business sense, let's do it across SAP. And so this was, this happened in Jan, in May we made the announcement, which is, I think one of the most landmark announcements by any corporate for people with disabilities, where they said, we'll have 1% of a global workforce with people with disabilities. And we had 65,000 people then. So we said, we'll hire 650 people on the autism spectrum by 2020. We've hired now almost 180 across 20 different locations. We have given opportunities to another 150 for part-time jobs and fellowships and so on. And you have now more than 100 companies who have their own autism at work program. And there was in 2000 I think it was 14, we were invited to the UN and Balkin Mon asked other corporates to make similar commitments as SAP. 2016 it became a Harvard case study. And in 2019, the highest innovation award at SAP was won for the first time by an individual and it was won by a person who's on the autism spectrum. So imagine the highest award, it's like getting the Oscar, is won out a hundred thousand employees by one person who's on the autism spectrum from Argentina. These people won't have even got a job anywhere and they've gone on to win the highest innovation award. So when I look back, you know, people ask me, how did you plan this out? I said, I just didn't. It just happened. And I always believe that if good people come together with good intentions and if you are at it for a long time, and that's important, you have to keep doing it for a very long time, magic happens.  

[Doug]: So much of what you talked about is certainly near and dear to Helen Keller Services, which is our ongoing partner in this, who I work with. And, you know, you're speaking to the fact that I think the narrative that's really changing around employees with disabilities is that it's not just about, hey, you know, let's just give people with disabilities opportunities for work beause it's just the right thing to do. It's like, no, actually in a lot of cases, they make great employees, if not better employees. Something to your point, you're saying that your top engineers can be as productive, your top engineers with autism can be as productive as like three engineers without autism, because there are certain things about them that make them uniquely fit for that job and to do it at a very high level. Similarly, this past month was Disability Employment Awareness Month, and we spent a lot of time talking about these topics. And, you know, we talked a lot about how employees with disabilities are often, like you were saying more loyal employees, they are more reliable employees, as far as showing up on time and doing the, getting the job done. Like you said, one of the unique traits of people who are autistic often is that they are literally incapable of lying, like you said, and how, I mean, how amazing of a trait is that as an employee, someone who's going to be completely straight up with you at all points in time and a whole number, a whole longer list of qualities that really make a lot of people with disabilities really outstanding employees. And I think the way in which you've instituted these larger scope missions to have 1% of your employees at a huge global company be people with autism and how you're getting other companies to realize that and sign on is so deeply important because it's at that level where people globally start to change their minds about it. And it's the big industry leaders taking this on and signing off on this that will make a lot of other people follow, like you mentioned. So it's really so deeply important. Before we continue here, I'm going to just take a quick pause for an interpreter switch. Alrighty. And we're going to continue here. So, Ferose, I would love to get now into the India Inclusion Summit portion of this. I know we kind of started to touch on that, but I'd I'd love to get a little bit more into that. So can you kind of walk us through a little bit more to like you, you started to get at it, but the origin of that and tell people a little bit more about what it is for those who aren't familiar with it?  

[Ferose]: Sure. So, when my, when my mentor told me that the lowest common denominator, the thing that, the stairs at the lowest level is awareness, right. And he said, for us, if you want to drive change across the society, focus on awareness first, because if people are more aware, then they become more sensitive. Once people are more sensitive they will drive the change themselves. So a lot of what our mission at the India Inclusion Summit is how do I reach to a 1.3 billion population in India? How do I reach to 7 billion people across the world? And really what are the various things that we can do to have that level of scale? And as I said, it was to really make disability a non-issue. I said, the day disability is a non-issue is a day when I stop conducting the inclusion summit. Then we don't need that summit anymore to spread awareness because people are sensitive. People are aware and people then know what to do with it. But we realize, and this is just for the, especially the American audience, you know, India, I would say, is at least 20 years behind the US in terms of the disability movement itself. I know a lot of things have happened, but because I've lived long enough in India and now in the US, I can see that there's a lot of catching up to do, right. But when we started thinking about this, I also figured out that actually there was no event in the entire world where they were talking about disability. I mean, I'm talking about 2012. Yeah. 2000. That's when we started it. And I realized that disability was one small section in a larger event. And so, they'll have one panel discussion about disability or inclusion, and more often than not, they had no clue what they were talking about. Either there was no representation of people with disabilities, neither in the panel, nor in the audience. And I'm like, what are you guys talking about? When nobody on the panel is a person with disabilities, how do you even know what this story is? So, right? And that's when we said we will make the first, truly inclusive event done across two days. But we were also very clear that we didn't want to just do an event. We said, how do we move from an event to a movement? And that's where I've been very, very deeply, engrossed in understanding large scale movements. I've studied Gandhi's independence movement, Martin Luther King's civil rights movement. I looked at what makes say a Women's March happen. I said, how does this large-scale change happen? Driven by a few committed people. Right? And so when I studied that, I kind of built in a lot of those core principles into what we are doing. So one of the things, for example, some of it may seem completely contradictory, but these were things that we built our entire movement around. The first thing we said is it has to be truly inclusive, right. When I say truly inclusive, it's not just for people with disability, they said it should be inclusive financially, we should have financial inclusion. We should have social inclusion. We should have political inclusion, all forms of inclusion is important. And that's when I realized that if you want to do a world-class event, I said, how do I do a Ted for disability? But can I do it free for all the participants. It was a, you know, how does that work? And if you want to attend Ted it's $10,000, if you are going to the live event, right. And I'm like, no, no, I want to do $0 because that's when financial inclusion happens. Because a lot of people with disabilities just doesn't have the financial means. And I said, why should they not attend an inclusion summit? Absolutely no reason. So they said everything that we will do will be free, but we'll also be world-class because people said, oh, if you get free, nobody will show up. I'm like, you know that the day we opened registration, within a week, I have full house. I have at least double the number of people who would register and, you know, even send me mail, Ferose, I'm willing to come to the summit and get my own sandwich. I don't need to eat the food, but I want to come. So we actually proved that you can do world-class content and do it free. And people still show up. Our event starts at nine, Doug, and have people lining up at 5:00 AM. I wish you were there in person to see that because I'm not exaggerating anything at all. So for the first thing we said is we will have true inclusion in all spirits, but you still do it well to us. This is not one, you know, half-baked effort. This has to be world-class. There is absolutely no reason that people with disabilities don't deserve the best platform on the world, right? The second thing we said is a core principle called no logos and no egos. They said the cause is front and center. I had large companies coming in and saying, Ferose, I want to be the platinum sponsor. I said, you can give me a million dollars, but there is no platinum sponsor. If you want to join us, join the movement, but you can't buy us off. And there's a reason why the people who come, people say you come to the summit, you meet incredibly good people, if nothing else. So we are very, very clear that we want, and one of the core things that Gandhi said was the purity of means is as important or more important than the outcome. I think your means to achieve your goal has to be pure. You can't game it because it's so damn easy to game the system. You know, I'll tell you, our website has millions of views. We don't do paid advertisement. We don't take any money. In fact, I get mail saying, okay, you can, you can make X amount of money just by putting ads on your website. I said, we will not do it. And more people, most people think I'm incredibly crazy, but I said, you know, do the right things for a long enough period of time and that's when you drive change. So really the purity of the means is incredibly important for me more than the outcome. And I leave you with this last thought, because almost everybody asks me this question, say, as soon as you've done this for 10 years, show me the impact. I said, you know what? I am not going to show you the impact because I don't know. How do you measure that? You know, I've changed one person's life after coming to IIS. How do you measure that? I really don't know. I have no ways to figure that out. So we don't measure impact at all. So many people ask me, show me the impact analysis. I said, I really don't know. I mean, these are some data I can give you, but I really can't say that I've changed people's life because it's hard to do it. And I always tell a beautiful chord that Mother Teresa said. So one of my very dear friends who wrote the biography of Mother Teresa, he spent like two decades following her. And so I asked him, so you spent so much time with Mother Teresa, tell me what was your greatest lesson? I mean, he's now 78 years old, pretty senior guy. And he said for those, you know what, after I was inspired, I said, I wanted to do something for leprosy because that's what Mother Teresa's focus was. So I asked her, Mother, what number should I start with? How many people should I support? And her answer was, don't get lost in numbers. If you're able to reduce the pain and suffering in the ocean by even one drop, it is worth it. And that's all you're trying to do. I'm like if one person gets inspired, I'm fine with it, right. It doesn't mean that's the only thing I aspire for. I'm still aspiring for a billion people, but you know, don't get confused with too much of numbers behind it because sometimes really magic happens when things intersect and you can't plan those intersections. As I said, when I started with the autism program, I started with three people, three people. And today, you know, when I, they did an analysis at SAP, impact of the autism at work program. And they said, it's the most impactful program they've ever done in their 48-year old history, more than any product launches, more than any billion dollar things done. They said this program. And they did an analysis, has touched 7 billion people in terms of its outreach and media and newspapers and so on. So, you know, you start somewhere and, you know, you just keep going. And so that's been my biggest lesson through this whole inclusion summit,  

[Doug]: A lot of things came to mind in what you were just saying here. One of the first things that, I was kept thinking to myself, I love how bold you are in how you go about doing this. But then I thought about it a little bit more as you were speaking, I think it runs much deeper than bold. I think from the outside looking in, I think it looks bold, but I think really what it really feels like to me when I sit with it more is you're just someone who obviously was gifted with circumstance in the form, obviously your son specifically, and the love and care for your son in the ways in which he's deeply affected and inspired you. And I wouldn't say you're a bold, I would say you're inspired, inspired in the deepest way. And that's what leads to action. I think when you're really moved and connected to the deepest core of purpose and vision, you make bold actions and you make bold decisions because you're not bound to how other people are doing things. You have this very pure connection to that, which is moving you in operating from that place. And that's how real change happens. I think, what's so great about it, everything that led up to before the birth of your son and the position that you were able to hold, as someone who has a lot of influence, who has a lot of ability to change things, it's like the perfect amalgamation of things to change things globally and have that like global vision that you have. And something that I love so much is, being in the social impact and disability space, you know, being a social impact filmmaker, that's been specifically in the disability space the last few years, all the time people go, well, you know, what's the impact? How are you measuring the impact? Right. And like, look, I get that, you know, a lot of times, particularly when people consider investing in or supporting something financially, they want to know like what the impact is and what the numbers are and how many people this and that. But like you're talking about, and what really honestly, is inspiring me at this moment, because sometimes I get a little swayed by those things of like, geez, like, how can we get better analytics on all this? But when you're trying to change things on a global scale and in a really deep way, there are no analytics that can really say, speak to that. You know, we get emails all the time with The Feeling Through Experience that we've gotten to share with thousands of people. And it's like, I can tell you, like, I can estimate roughly how many people have been a part of the experience. I can estimate roughly how many of those people who have joined us are DeafBlind, blind, or low vision, or who were maybe coming to these topics for the first time. I could probably figure out some more analytics, but those analytics will never speak to the type of email I get when it's someone who says, you know, that was a life-changing experience for me. And I'll tell you really specifically how, because the day after I saw The Feeling Through Experience and had a much deeper connection to the DeafBlind community and other disability communities, I saw a man who had a cane, it seemed like he was lost and was looking for help, and I felt very comfortable approaching him. I felt like I knew how to talk to him in a way that really respected his autonomy. And that was all because of that experience that I just had. And those are the types of things like you can't quantify, right? The moment to moment things that, where you've really impacted someone deeply, someone, how someone sees the world and experiences the world, but those are the most important things. So I love how it's not about coming out of this with, you know, the certain numbers or categories of we've hit these benchmarks. I mean, look sure those are great. And if there's a way to do that also by all means, but you really understand that it runs much deeper than that, and you're never gonna, you're never gonna really encapsulate changing people in a really deep way through numbers. It's just not going to happen. And I also love again, how, and I think again, being who you are and being someone who's in a position to really make change, how you make it, not about companies, logos and sponsorship, which can take on a whole life of its own, right? Because you allow one company to come in and be like top billing for something, and all of a sudden the way that can kind of, the politics of that over time can get murky, right? It can, that can become a distraction to the main thing. And what I loved the most about that is when you gave the analogy of someone coming in and offering to be a platinum sponsor, it's like, how about you just join the movement? You know, how about you give us the money that you want to invest because you believe in the movement and then you join too. And maybe you come and you experience this and you hear from the people and learn from the people that are going to be speaking at this. And, you know, I think those are the things that as I've gotten to watch previous speakers at the summit, as I've gotten to watch some of the people who are speaking right now, that's what I think is so powerful about it. Maybe if you could tell us a little bit more about what this year looks like? It's a little different than other years. It's, normally it would all be happening in person. I know you've had many, many hundreds of people at each event that you do in person normally. Obviously this year, we can't do that for safety reasons. So it's all happening virtually. Can you tell us a little bit about how you've had to pivot because of the pandemic and how this year is distinctively different in that way?  

[Ferose]: So, great question, Doug. I mean, we are very fortunate that the core group of basically volunteers, everybody's a volunteer. There are no employees in the foundation. Everybody is a volunteer, including myself. And the core group is around 30 volunteers, I would say, right. These are the people who do the heavy lift, but we have maybe thousands of volunteers who are also doing other activities, but the core group of 30 people are all technologists. And so in some ways we lead with technology in some ways we understand the reason I am, I wouldn't say I don't put too much emphasis on data is also I know because data can be flawed and data can be misused. And I know that because I see it in my day job. You can use the same data for doing exactly the wrong outcomes, right. As I said, I can, you know, people, I remember when people come and say for us, if you give me a hundred dollars we'll get you 10,000 views. If you get me $200, I'll give you 25,000 views. And I'm like, how does that matter? It's not going to help you in your movement. It can help you in some report saying XYZ. But if your mission is much larger, I think you don't fall into these traps, right? I'm not saying that I'm right or others is wrong. It's just that it doesn't matter to me. That's number one. So we are very fortunate to have a lot of technologists in our core group. So as COVID happened, we were pretty clear that we have to pivot, which will work, where many other people took a lot more time to think that way. And I like, we were like, this is virtual. And so we had enough run time to understand how to do a virtual event. I'm not saying we know it well, but we've understood a few principles. One of the principles is you have to curate for attention and not just for content. You know, that's the biggest learning I've had that attention spans are small. So you can't do an eight hour event. You have to do a 90 minute event, but do it across four weekends. Then we, you know, last year we started with movies because I have personally seen the impact of movies in driving social change. And it's funny that most people just don't realize how powerful movies have been for the disability movement. And if you just look at the data since 1989, and so, Doug, you notice 14 out of the 27 best actor/actress awards when it comes to Oscar awards have been won with people who played the role of a person with a disability. 14 out of 27. So 50% of the people who won the Oscar for best actor or actress since 1989 have played the role of a person with disability. Now, which means that you've suddenly given a massive global space to a cause of disability. And I looked at the same thing in India. And the answer is there's none. I don't have mainstream media or mainstream movies where disability or the main protagonist is a person with disability. And that's where we said, let's start with the Bangalore International Short Film Festival and the founder who had come to the inclusion summit, et cetera. I didn't even know such a space existed. And I said, I need, you know, he said, how can I support you? I said, please start a section for disability and inclusion. And guess what he said, will anybody apply? I mean, is this important? And he got 450 applications across the world. 450 short film movies. And I watched, you know, I think 32 of them outstanding, including, you know, that's how I met you and saw the Feeling Through part. And I'm like, believe me, a lot of the Indian audience have no access to such movies, have no access. And so a very simple thing like including a disability section has suddenly opened up completely new avenues. So, the summit is all about looking holistically. You know, you've done art, you've done movies, you're doing writing, but really the idea is to bring all forms of topics to enhance and spread awareness about disability. So while the event happens across this time, across three weekends, but our activities happen throughout the year. You know, we identify inclusion fellows or entrepreneurs working in the disability space. So there's a lot of work happening throughout there, but in some ways it kind of converges to this massive in-person event once a year in Bangalore. But of course that's fully virtual this year, but there are, some silver lining is that. We've got so many outstanding speakers, international speakers this year. If you got eight international speakers, you know, I never had a budget to fly more than one, max two speakers because it takes a lot of money to get them to India and so on. And we never had a budget, but now the cost have gone half and our reach much more. But having said that, I don't think that is any substitute to a human connection. I mean, let's all agree to that. I think that's not even a point of discussion. While the virtual world is good I think there cannot be any substitute to a human to human connection. I think we live in a hybrid world where we have both virtual and in-person, but maybe we lead with virtual and the in-person happens later. Unlike the other world, pre-COVID world, where we lead with an in-person and virtual followed. It's like, I feel like I know you like a friend and a brother, Doug, even though we have never met, right. But when we meet, I think we'll just see like, oh, we knew each other for years, which are very different in a pre-COVID world where you lead with an in-person connect, then you kind of keep in touch. But I think that's completely inverted now in the post-COVID world.  

[Doug]: I got to say, you touched on, certainly you can never replace the in-person, and I know we'll all be very eager to get back to that when it's possible, but in the meantime, there are some great advantages to doing it virtually. It's not just a silver lining, it's actually more than that. And, you know, it's definitely something that we've experienced with Feeling Through and certainly getting to do it, share it with people, not just across the country, but around the world. We're super excited to do our Feeling Through Experience for the Indian audience and we've had, you know, 20 plus countries join in on previous Feeling Through Experiences that we've done. And, you know, that was something we could certainly never do in person. I mean, we had plans to take it abroad at some point, but to be able to do that from my home and connect with people around the world has been a very, very cool thing that I didn't think about at the beginning of this. But it's certainly been a really great way to connect with people. And I will say having done a lot of virtual events, something that's really great about the India Inclusion Summit and why I really, really encourage all of you watching to join in, and I guess the easiest way go to IndiaInclusionSummit.com.  

[Ferose]: It's live, available. You don't, you just need to register if you want it to be sent reminders because you know, that's all we do otherwise we don't take any information other than your email. So one hour before the event, and one day before you will get a reminder, that's all we take the email address for, but otherwise on the website on YouTube and Facebook it's live.  

[Doug]: And what's so great about what your team has done is like, you've really taken it to the next level. And as one of the speakers there, one of the first things Ferose told me, he was like, okay, we're going to send you a green screen. So you're going to record on the green scene. We're gonna put you on a virtual stage. And I heard that I'm like immediately I was like, okay, they're already going above and beyond. They're sending all the speakers green screens. But what's really cool about it is I've now gotten to see what you've done with it. And I mean, it's, it looks incredible. I mean, it really does look like we're all standing on this big stage with the  India Inclusion Summit up over here and whatever, you know, a screen up here that supports whatever we're talking about or can play clips. And I mean, look, you know, we certainly, we can't be in person right now, but you're getting pretty darn close with how your team has constructed that and it's really...Oh, hey!  

[Ferose]: Vivaan, you want to say hi? Come say hi, come here. Say hi.  

[Doug]: Hey, nice to meet you.  

[Ferose]: Say, how are you? You're good. Okay. Thank you.  

[Doug]: We're so glad he got to make an appearance here. This wouldn't be a live event without having a family come in and join us. I love that.  

[Ferose]: So now you see there, the family fight, right? Vivaan, this is a live event here.  ave.  

[Doug]: We'll have to invite him to the start of the next one, so he can just be here the whole time. I love that. What a great, I mean, I'm glad he joined us with just the last few minutes we have here, I'm glad he made an appearance.  

[Ferose]: Thank you. My apologies to all the audience.  

[Doug]: No. I'm sure that'll be everyone's favorite part.  

[Ferose]: As I said, he's been a regular in all my keynotes, Doug, so now I'm not, I'm not feeling embarrassed.  

[Doug]: Right, there you go. He's like your right-hand man there, you know, to come in and support whatever you're talking about. But, with the last few minutes we have here, and I think it's perfect timing with your son visiting us, I guess I'll just simply ask you, after all of this, everything that you've experienced and everything that you've done over the years, what has your son taught you?  

[Ferose]: You know, that's the hard question, Doug, because he is nonverbal, so he can't speak. He has maybe two or three words, he can say hi, but he's non-verbal. And, honestly, I mean, sometimes, until a year back, my biggest wish was I really know what's going on in his brain. I was thinking, how do I know what he's feeling? Whether it's feeling happy, pain, suffering, I don't know. But thanks to a one breakthrough that happened, there is a method called rapid prompt method where now he's able to point at alphabets and kind of show things what he is. So he's able to write a few words and sentences by pointing fingers at the alphabet. So that's how we know what is happening and he's now attending regular classes. But that's the hard one, having a child who's completely non-verbal. It's very, very, it can be pretty challenging, but you know what? He's  done such a great job. You've seen him right. The great thing about him, he's incredibly happy. And I'm like, how blessed are we to have a child? I mean, he has, I didn't tell, but he has Crohn's disease, which is another form of auto-immune disease. And he has a lot of medications, but is an incredibly happy kid. And, and for me, there's no other joy than seeing him to be happy. It doesn't matter whatever pain he goes through. He's always smiling all the time. And I think that gives us great joy. And I teach at Columbia University and I often say, my son has taught me more than any business school can ever teach me without uttering a single word. Right. So I think I've just learned so much from him and I've seen the, you know, it may sound very spiritual, but I have to tell you that everything I've done with very pure intent, even in the most difficult of circumstances, when I expect all doors were closed, the most unexpected door has opened up. And so, and I always say, if you keep your intentions pure, but you can't dilute your intention, that's the key here. If you start gaming your intention, the doors don't open. So I am so relieved. I'm like, I'll do my best, I'll see, and more often than not things happen. And that's the power of the purity of intent.  

[Doug]: I mean, beautiful words. And, what I love so much about the purity of your intention and your inspiration is that you become this amazing vessel, that has such a great capacity to kind of hold, and not just hold, but deliver to other people that which has deeply moved you and inspired you. And as a result I can say that I'm certainly one of those people that's tremendously inspired by what you do. And how your life has moved you into that place, and your son being at the heart of that. And also clearly I'm sure many thousands of other people can say that maybe more than that in the scope of what you've been able to do with that. So, I think you so beautifully encapsulated that in what you said. And I think it runs contrary to what people hear a lot of times. I think people think they need to be super smart and savvy about things in a way that I think like you just mentioned can be the very thing that actually cuts off the magic, so to speak, really siphons off the really powerful energy of intent that's really the engine that's driving all of this for you.  

[Ferose]: Yeah. Yeah.  

[Doug]: So with our last like 30 seconds here, I'd love for you to just like close on whatever you'd like to share. Whatever that may be, but certainly, just if you could also let people know how they could find out a little bit more about the summit.  

[Ferose]: Yeah. Yeah. Thank you. Well, firstly, thank you, Doug, for inviting me. I'm also, I must say greatly inspired by what you've been doing and, you know, for me, I get the energy because I meet such outstanding people. The India Inclusion Summit is just an excuse to meet great people. So because of that, I've met you, got to know you a little better and the work that you've been doing. So I think I just want to extend my gratitude to what you've been doing and also to the wonderful translators here. Thank you so much for what you've done for the last one hour. I greatly appreciate it. I just want to end by a very beautiful chord, which says that intention has infinite organizing power. And so if you keep the intent pure and if you keep the faith, things organize. And I can tell you every year I struggle with pulling off the summit. You know, we don't have enough budget. You know, some volunteers are not there yet, but it always worked out because we were so clear on the intent. And I say, that's when I say intention has infinite organizing capacity. So keep the intent pure, things will happen.  

[Doug]: Well on that note, that's a perfect way to wrap up today's episode. A reminder for everyone watching, please go to IndiaInclusionSummit.com. You can go right now, it's already begun and it's going to be going until when does it go until, Ferose?  

[Ferose]: The next live event is on 21st, November. And then afterwards on 28. Each of these live events are for two hours. But because of the time zones, sometimes it could be a challenge for people in the US to attend it, but you can go there, watch what happened last weekend and all the videos are there. And so, please do watch on the 21st because Doug is going to speak. I mean, actually he's already spoken. So, I'm super excited to listen to what Doug has said. So thank you, Doug, for all that you do.  

[Doug]: Absolute honor and pleasure. I'm so happy to have connected with you and really formed a wonderful relationship with you and be a part of the summit. It's really been one of the high honors of this amazing run that we've had with Feeling Through and The Feeling Through Experience. And one last reminder for everyone watching, it's going to be on Tuesday, the 17th in the United States, Wednesday, the 18th in India and abroad, but we're doing a Feeling Through Experience. Ferose will be joining us. Of course, I know all of you who spoke will want to come back because you're just such an amazing speaker and we'll also have Bapin Bhattacharya, who's been on a previous episode of this and is an absolutely incredible man who is DeafBlind, who is just, he works for the Helen Keller National Center. He is a tech whiz, and it has a truly incredible story as well. He'll be with us. So go to feelingthrough.com/register or follow us along on our social media @feelingthrough. We'll have plenty more information about that. And, yeah, Ferose, you'll certainly have to come back and chat with us on here again at some point in the future.  

[Ferose]: Sure. Looking forward to, and thank you for the opportunity, Doug.  

[Doug]: Well, thank you everyone for watching and have a great weekend and week ahead. Bye.  

[Ferose]: Thank you. Bye-bye bye-bye thank you. My gratitude. 

Feeling Through Live • Episode 30: DeafBlind Access & Independence

[Doug]: Hello, everyone. Welcome to episode 30 of Feeling Through Live. I'm joined here today by Jason Corning of Three Monkeys Communication. We're going to be talking about deafblind access and independence and a whole host of other topics. But Jason, since you were just mentioning it, specifically around your shirt color, why don't you talk about whatever you wanted to mention around that?  

[Jason]: Hi everyone. My name is Jason Corning and my sign name is JC and we have an interpreter here. So I'm a white man, so that, for that reason I have a dark shirt. So it would contrast the color of my skin and I'm wearing black glasses and I'm smiling. I tend to be a very happy go lucky person and I'm really honored to be here and joining this conversation with Doug. I just wanted to briefly mention the shirt to help all the deafblind individuals out there to be able to get full access to all the information. And so that's the reason I'm explaining all this information. So the deafblind community knows what I look like. I'm 30 years old, I'm a white male and I'm wearing a dark brown, black shirt. And I'm also wearing sunglasses that are black and I have short brown hair.  

[Doug]: And Jason, thank you for that, you're setting the right tone for this conversation, certainly. So you know, there's a lot to discuss today, but I'd love to start at the beginning. Jason, you're someone who's very accomplished. You have multiple degrees, you're a business owner. Can you tell us a little bit about how you got there in the sense of what your early education was like and your childhood?  

[Jason]: This is Jason. Sure. So I grew up in Wisconsin. I went to Wisconsin School for the Deaf K through sixth grade and they said, my parents said at that time, that school for the deaf, it was really challenging. No, they didn't really have large print books or interpreters. It was a, it was a hard time and the blackboard was far away. So overall the education was okay, but there were some challenges there. But then at that point in seventh grade, I got placed at a blind school and that school had much more accessibility equipment. The teachers worked more closely with you. They sat closer. They had equipment to enlarge the print. There was guide dogs. So it was much more advanced equipment to encourage independent living. You know, we had mobility training, we went out shopping. So there were just so much equipment that was already in place to help us succeed in the future, which was different from a little bit different from my experience at the school for the deaf. You know, we were involved in football, track, swimming. We had the same experiences that sighted individuals. And then during high school, I transitioned to, I joined the transition program so that I could get ready for college. And at that point I wasn't really sure what to expect. You know, once I got out into the real world and in high school, you know, I wasn't, I had been in this small community of deaf and deafblind individuals. So going into a public high school, I wasn't so sure what to expect. And 11th and 12th grade, I went to a local tech institute nearby. And the purpose of that was to get a sense of what college education was like. And we had a, I took a psychology class that discussed the behavior with different sexes and that sometimes with those topics, I was a little embarrassed because I wasn't sure of the appropriate terminology to use and all that. But over time I got used to that type of college-level environment. So that experience at the tech institute really helped me in 11th and 12th grade. And I actually gained credits for college in high school and that tech institute to apply it to my undergrad. So once I applied the undergraduate university, so, oh, you already have credits. That's great. And I didn't do so great on the ACT, but because the college saw I have some of those credits and had some experience, they thought, you know, this might be an opportunity, perhaps we'll try it out for two semesters, see how you do. And if you keep a 3.5 GPA, you're able to stay in the program. So I really strived to keep that GPA and my really pushed me to be involved in the community. And from that I actually start to give different presentations at different schools during my college years. And I taught individuals how to advocate for themselves. I really pushed individuals and children at an early age to really advocate because it's really hard if you don't learn these skills at a young age to then be able to advocate yourself when you're older. So my education, originally, I did internship in IT business and with an IT department in my home area. And there was also with a focus on security and travel security with the TSA. And that really helped me understand how the government works because I never worked for the government before. You know, I really, I thought that all these experiences was, you know, just the legislation, the Congress, but there's so many different departments within the government. So I learned so much at that opportunity, the federal government, there's just so many different aspects that I didn't realize. So after my BA degree, excuse me, while I do my BA degree, I had an internship with the TSA, with the Department of Security, Homeland Security. And this was a really different experience for me, you know? And at this point also I moved far away from my parents. I wasn't used to this living on my own, being able to support myself. It was all just so new for me, You know, and I started to make new friends near my town and my employer provided different services. So I start to feel comfortable as an adult in the real world. And someone at that point suggested that I should go fir my masters. So I kind of searched in the Maryland community where might be the best IT department, IT and business in conjunction, those two programs. And I found John Hopkins University and, you know, many people ask me, oh, so you're going to become a doctor. You're going to be in the medical field, but now they do have a small school of business called the Carey School of Business. So I did four years of my master's. I really just took my time there with my master's. I took classes at night and I took the three different campuses in Baltimore and in Washington. So I really took as much credit as I could, took my time and got my masters. So that's kind of, so my work experience that you asked about, I don't know if that answered your question.  

[Doug]: Yes, certainly. Not only does it answer my question it runs through a lot of topics that I definitely want to go back and talk more specifically about, but thank you for that overview. You know, I want to just go back. You said you initially went to the Wisconsin School for the Deaf and then ended up going to a school for the blind. Can you tell me as a deafblind person, the difference between being in a school for the deaf versus a school for the blind? I know you started to talk about the technology, but from a culture standpoint, did you find one to be better than the other from your vantage point, or did you find them to have different pluses and minuses?  

[Jason]: And this is Jason signing. I'm happy that you asked me that question, you know, all over the US there's many different programs. And most of the hearing, sighted schools, the level of education is better than the schools to the deaf and schools to the blind. You know, all the technology, the pace, the competition it's often better. And with an interpreter that obviously kind of equals the playing field a little bit, but as far as culture, the cultures are not the same, you know, often it's like they're in these solar groups, you know, this is the deaf group, this is the blind group. This is the hearing group. They have these different cliques. So there's the deaf culture group. There's the blind culture group. So often for example, the deaf culture group, they'd be signing to each other, but I had no idea if they were communicating with me or trying to have me involved in their conversation because there's really this solar group of like four friends who would sit at the cafeteria together, chat at the dorm together. So it was a very, very cliquey type of environment and that there was really two to three deaf people at that. So that was the deaf part of that.  

[Doug]: You know, I find it interesting in the sense that, you know, you going to, initially a deaf school than a blind school, but not a deafblind school. I know later on that you, you know, you studied the Helen Keller National Center and perhaps other spaces that focus on deafblind. Do you know of any early education that's specifically catered to deafblind children, you know, from a school standpoint or is that something that's not really around yet?  

[Jason]: I know there are very few state schools that have deafblind programs. Often the students are mainstreamed with the blind program, for example, my best friend who I grew up with, he was blind and really his educational experience was quite lagged and he would join some of the middle school classes. But he was really still at an elementary level. So they really couldn't set up a class for the two of us because we are at much different levels educationally. I really think it's important for all States in the US to have that accessibility and not to automatically say, oh, you're deafblind, so let me put you in with the teacher and you'll just play games and you'll drop pictures. You know, that's not the perspective that we want to have of the deafblind community. We need to give them opportunities, the same opportunities. And often what would happen in these IP meetings with interpreters there, you know, we would try to encourage to have individuals be placed in regular classes in mainstream classes. Because how else are we going to be able to be successful in high school and in college, if we're not challenged at the same level of our hearing sighted peers? So really there's still so many deafblind individuals who are struggling and not having the success meeting their expectations of success that could happen.  

[Doug]: As someone like yourself who has a bachelor's degree, a master's degree, is a business owner and is deafblind, what do you most attribute your personal success to?  

[Jason]: So really I attributed to my master's degree to my involvement in the community, to my support system, my family, my friends. You know, they really encouraged me to get out there and to do everything that anyone else would do. And I had great access. So that really led to my success in life without that access. And without that support system, I would've have had much more barriers in my life.  

[Doug]: I want to pick up from where we left off in your story. So you said you worked for quite a while in government. At what point did you decide to start your own business and what motivated that decision?  

[Jason]: Sure. Yeah. I'd love to answer that. So when I worked on the Department of Defense, I worked there for eight years, my first two bosses were unbelievable. They were great bosses. They really encouraged an accessible environment. And it was a very fast paced work environment, but they really empowered their employees and imply and empowered me too. It was a very empowering environment. They didn't just give me everything and tell me what to do and really like, hold my hand. It was quite an empowering, compelling environment. And I really had the opportunity to try out different offices within that department. And, you know, often with providing interpreters, you can't always get an interpreter last minute. You know, it's not always so available. So my experience was that they really made things available. And when that didn't happen, we had complained to the EEO and, you know, I am a very positive individual, I have the house, I take care of myself. So I really decided to kind of apply for that business license to get the EEO. It took three or four years for that EEO finally to get approved. And also to get a full-time interpreter and an SSP and pro-tactile interpreter. It really took time to get all the accessibility pieces in place and to get all the contracts in place. And a lot of interpreters don't have that pro-tactile experience. So it's really a new experience for everybody. And sometimes they don't have the exact match for the interpreter who has that deafblind experience. Hold on one second, Doug. So, you know, often, sometimes we have to communicate through writing. There's just sometimes the communication's a little challenging, so we make that work through writing, or if the interpreter is not well-versed in the communication, then we kind of figure out ways to make it work with the deafblind community.  

[Doug]: You know, I think one thing that's really interesting that you're bringing, Oh, sorry, go ahead, Jason.  

[Jason]: I just wanted to add to my comments and clarify, and I just want to make sure that we're all caught up with everything here with the interpreters. So my point here is that for different individuals, you know, for example, there might be a math problem, and everybody approaches that math problem more easily. So for a hearing person, they might have a certain approach, but with the deafblind person, there's a different approach. So that really has quite the impact on the communities. Maybe feeling that anxious about having the appropriate services and having job placements and really as a person like, do I want to keep continuing fighting for my rights as a deafblind individual, or do I want to find a position where I'm happy and content. And this is the, hold on one second. I just want to catch up. So my point is that in my previous job with the government, I was doing a lot of fighting for accessibility. So at that point, I really wanted to take a moment and I didn't want to fight as much. I wanted to set up a business where there would be full accessibility. So that's how that all started. Thank you for allowing the interpreter to clarify. So that's why I wanted to start my business. So I applied for, you know, excuse me, I'm really motivated. I was really motivated to get that business going. So for two years, we built the trust of the community and really worked on setting everything up with the business, all the fine details. And we wanted to make sure that this business had accessibility, it had the technology, it had advocacy and all the data systems. So it was a lot of work and a lot of honestly still fighting to make sure that we had everything in place.  

[Doug]: So like a lot of great business ideas, you identified something that needed to change or be bettered and you started it yourself. Like you were mentioning, you noted that accessibility for someone who is deafblind, like yourself at your previous jobs was sometimes, challenging or not coordinated in the best way. And that you felt like you could do that better and provide a service for other people who are in that position. What is it like starting your first business? You'd mentioned that there were certain things that were challenging, but did you have anyone who was mentoring you or how did you go about figuring out all the things that you needed to do in order to start a business?  

[Jason]: Yeah, that's fine. So I've been married for six years now and we traveled to many different countries and while traveling me and my partner, we're out really trying to figure out, you know, how can we make this work. We like to help people. We've seen so many problems within the government, with interpreters, with having accessibility, with accessibility issues and to so many different things within the government that needs to be improved. And there's been so many different lawsuits. So we're really, you know, getting our hands dirty and trying to improve upon the system. So that's really how it all started. Just with the discussion with my partner. Our goal for the business was to spread worldwide accessibility. So Europe is really ahead of us. They really cherish the diversity in their communities and the differently-abled, disability communities, communities with different races. You know, Europe is really way ahead of, the right way ahead of everyone else. And you know, me and my partner, we are in the gay community and, you know, in all these different countries and Japan and all of these countries that I visited, we noticed that often individuals in that in the LGBT community were kind of hidden. So we decided to start this company called Three Monkeys Communication based on the Japanese figures, you know, the hear no evil, see no evil, feel no evil. So that's kinda how it started. The inspiration was seeing the Japan, those figurines. And then we kind of looked at ourselves and we figured out what our tagline would be. And then we decided the tagline would be that we want people to be able to see, we won't be able to hear and be able to feel. So kind of similar to that. The three monkeys, those figurines of the three monkeys that are very famous in Japan. So we created, excuse me, interpreter is just catching up. So this app was to really make the world more accessible. And that was the start with the company, the Three Monkeys Communication. And when we traveled, we looked for individuals within those countries that could provide services and provide accessibility within those countries. So, and the three apps that we are in the process of developing are Mizaru, Kikazaru, and Iwazaru. And that was the name of the three monkeys. So those, those are the products that are in development. And instead of those names, we're actually using those names similar to touch with pro-tactile for feeling, and then for deafblind, that's another name, another app that we're developing. And then also for hearing, we're having another app to make everything more accessible. So while we're in Australia, we got some experience there, traveling, coming up with ideas for how to make it accessible. And we, can you tell him to hold on one second? So while traveling in Australia, you know, we had this experience of trying to figure out how we can make our experience more accessible for traveling. So this also inspired the idea of these different apps. And so that's those three apps that I was mentioning that were in development. We're caught up now.  

[Doug]: Great. You know, Jason, I'm wondering, you had mentioned that Europe is really far ahead in certain ways around accessibility and accessible practices. Can you speak a little bit more specifically about the ways in which they're ahead of the United States?  

[Jason]: Sure. Yeah, so many of my friends worked for the government and also many of my friends are paying for SSPs, support providers, and interpreters. They're paying for them themselves with their own finance. Now in other countries, individuals who live in a country, they pay taxes. So that way those funds are available and that the consumers are not paying for it themselves. Now, another example from Brazil, you know, Brazil really cherishes their history and they cherish senior citizens. And Brazil is still in the process also of creating accessibility with interpreters. So those countries are still working on those levels. And same with Americans in America. We don't use taxes to provide services for the deafblind community, which I think is a really great incentive that they have in Europe.  

[Doug]: Are there people in the United States that are advocating to function in the way that Europe is functioning in? And do you see that as a possibility for the United States at some point,  

[Jason]: No, the US is improving. We now have captions. We have interpreters, sorry. The interpreter is just clarifying information. And so I can't see the chat box here. So we have Universal Studios, oh, excuse me. In Florida, Universal Studios, you know, the company Universal Studios? Yep. So I just want to comment something about that. They provide interpreters. They have VIP passes for individuals who are deaf and deafblind, and they have different lines set up that are accessible so that people can tour and experience Universal Studios, you know, easily. So I think we kind of need to set up that same process overall in America to make just everything more accessible. And so in America you can get interpreters anywhere you go. It's really easy to find interpreters because there's so many different agencies. So, can you just, I'm sorry, can you just clarify that as he saying that interpreter? So for example, you know, the alcohol Jameson, they won't provide interpreters for traveling, you know, they have interpreters in America for traveling very available.  

[Doug]: So Jason, going back to Three, Monkeys Communication for a moment, and by the way, I love the inspiration for the name that you described. You started to talk about, you know, what your company does. I know there's a lot of different facets to it. So can you kind of just summarize the main components of Three Monkeys Communication?  

[Jason]: Sure. So we offer a keynote presentations. We offer keynote presentations to schools, to businesses, to companies, same as we're doing today. And I share my experiences of how we can make the world more accessible and I try to provide a different perspective. And the purpose is kind of that with the topic of, I've never thought of this. So how can I become more aware of this? And we also provide trainings for companies. For example, we provide pro-tactal trainings. We provide inclusion and diversity training. . So if, for example, some companies want more GDPs. So we help create an app or we might help develop an app to solve those problems. And we do consulting to basically make their businesses more accessible for the deafblind community. We also offer mentorship that includes interpreting and to make sure that we have qualified interpreters and pro-tactile interpreters. We want deafblind individuals to be as independent as possible so that they can travel the world so that they can be involved in businesses so they can be, have real discourse with companies. So we really teach a wide range and a wide range of trainings. We do consulting. So for example, if you have a website or an app that you're creating, and you want us to give you an analysis report, we can do that too so that we can offer suggestions and ways to make your apps more accessible for the deafblind and blind communities. Plus, we have two products, one's called Mizaru, and he was just showing the sign name for it. And that's an app that focuses on deafblind traveling. So if they're going out of the country, often you might need an SSP. So we offer trainings for the SSPs for specifically with traveling. Can you take the names again? So there's Uber there's Airbnb. So we also offer some trainings on how to make those apps more accessible for those companies. Now, lastly, the monkey, Iwazaru, that one. We have different trainings and interviews that we do on YouTube with deafblind individuals and their experience with traveling around the country. And we're actually making videos and have made videos of people's traveling because we want people to see that, you know, deafblind individuals, we can travel, we can experience the world just like everybody else. So that's part of our business is showing the world and doing the videos that include deafblind individuals traveling throughout the world.  

[Doug]: Jason, you had mentioned before the topic of advocacy. And I know that's something that comes up often on this platform. I know that it can take many different forms. One thing just in connecting with you over the last few weeks, the topic of advocacy around communication comes up for me. You know, I know that you're someone who's really good at making sure ahead of time that the communication that we are going to have is going to be facilitated in the right way. I think sometimes people assume that, you know, we just have interpreters and we just hop on here and that's it. We're just ready to go. But obviously there's sometimes a little bit more back and forth and work involved in that. And certainly you are really good at advocating for yourself around that and making sure that the communication is going to be facilitated in the best way. Can you talk a little bit about first, specifically how we facilitate our communication to be here and have this conversation today and why it's important for individuals who are deafblind or anyone who's working with interpreters to advocate for themselves around communication?  

[Jason]: Yeah, sure. So I just want to add one little little side comment. I am an adjunct professor and for each class I need to have an interpreter. So I have to prepare, I have to prepare my PowerPoints, all the vocab that the students need to learn. And often the interpreters show up late or right on time. And there's no time for prep and they don't know what's going to be discussed in the class. And I have some students who actually are taking ASL five and sometimes the students will actually tell me that the interpreter said the wrong thing. So that really bothered me and I never forgot that moment. So from that moment on, I made sure that I had all the prep materials ready for the interpreter so that once they entered my class they knew the topic and the content that I was going to be discussing. Now, for example, with this zoom call, I asked Doug if we could chat prior with the interpreters and I wanted a man talking so that it emulated me as a man also. And we also made sure that we pinned the correct interpreter. So we had everything in place prior so that we had as much accessibility as possible. And we reviewed terminology with the interpreters. We checked that the backgrounds were in place and that the backgrounds were accessible for myself and for the deafblind individuals watching, because we want everything to look professional. Most of the time, from my experience, growing up with my teachers, with my parents, it seems like too much to ask or people feel like it's too much to ask. But what I want to say is it's okay, it's all right. And you need to do those things. Be brave, be confident advocate for yourself. Now, if you need changes with the interpreter or the color of the interpreter's shirt, you know, ask for what you need. I've been doing zoom presentations for a while, and I'm very comfortable with them. But the one negative with zoom is that sometimes it's a little hard to see the interpreter for clarification. You know, there's not really thst facial expression, being able to be read as easily on zoom. So of course with coronavirus, as things are more challenging and we do the best, we can.  

[Doug]: Obviously your company deals with creating more accessibility and more accessible environments for people who are deafblind. What would you say to people who might say something like, well, it's just not financially feasible or practical to always have, you know, as many interpreters as you might need or SSPs as you might need. Like sure, in an ideal world that would be great but it's not practical or it's not feasible. What would you say to someone who might say something like that?  

[Jason]: You know, most of us, we think it's a really, people think it's a really complicated situation. And we're often too concerned for the interpreter, the person to like us as an individual and then people that like your personality and they like you, then they might be willing to make more adaptations for you. So I noticed that approach works. If you build that connection first, if you right off the bat, like, oh, this is what I need, and you try to convince people that, oh my God, I need this, you need to give me this, you need to provide that, it doesn't work. You can't be pushy. If you ask them nicely in a professional, personal manner, like, okay, this is the situation, can we brainstorm together and work together as a team to make the most of our time together? You know, we can discuss, perhaps we spotlight the interpreters and really talk about it in a way that's more team oriented, you know, maybe suggesting different fonts or different modalities, you know, and also, you know, we use, we use zoom, so there's different creative ways to solve problems, but really it's so important to work together as a team. So we did, we try the best we can to make it work. And I have a background in teaching. So what I do is I make sure I send the PowerPoints ahead of time. And then if there's any problems we're prepared and sometimes my students will email me and let me know if there's an issue with the PowerPoint or something needs to be changed. And my interpreters during class will give me a little reminders like, oh, you pressed too far ahead. Or, you know, they'll give me those visual cues. And in my master's program, we had to be quite quite creative. For example, with Adobe Connect, we had the movies, the PowerPoints, everything on Adobe Connect. And we had to make those add up to adaptations to make that work. But for the interpreter it was challenging because they were looking at the PowerPoint and they're looking back at me. So that's why we had to make those adaptations to then use Adobe Connect. So really, the purpose is we need to be creative to make adaptations that works for the individual and work together as a team and not force and convince the individuals to do something.  

[Doug]: So certainly, you know, you're speaking to a certain level of accommodation that you need to make on your end in that if you were to just outright say all the things you needed without first building a rapport, you said it might run the risk of being off-putting to someone and making it harder to facilitate the accessibility that's needed. Do you imagine a world in the future where you don't necessarily need to be so accommodating to other people about your own accommodations, but rather that will just be a more widely instituted practice and that people will have more understanding of what it means to facilitate accessible conversations and just have that be a part of the planning of all conversations? So I guess in short, I know that was kind of a long way of saying, do you imagine that at some point in the future, people will just be better about providing accessibility without someone like yourself needing to negotiate that situation so much?  

[Jason]: That is my goal. And my goal also with my company is to create, or to have this YouTube channel that I have set up that I know how to approach these situations. And also so that the sighted individuals with their businesses, they can look on the YouTube channel and have more background knowledge about what to do. And they can see it in action on the YouTube channel, our deafblind experience. And that way, when they hire an individual, they will know what to do. And sometimes hiring somebody for captioning is just too much money. It takes too much time. So it's just easier to have it ready on there for, you know, YouTube do the automatic captioning. And sometimes that's a fact of, and sometimes it's not. So we're trying to make that we're trying to solve that problem and that you should, by solving that problem by solving that problem, I'm suggesting that we have the words already on the video instead of using the YouTube captioning, because sometimes that's not completely accurate. So that's one suggestion that I do with my YouTube channel, and we know that YouTube does have this new, the subtitles automatically transcribed. So that's really great access for the deafblind community for the accessibility there for that piece. Oh, excuse me. This is an interpreter error. I'm just suggesting people don't subtitle. I think you should use the YouTube automatic transcription because that saves money and that saves staffing. I don't suggest to have the words right on the video. And the reason for that is people who are using braille equipment, won't be able to read it. And now if you use the YouTube transcription, they can read the braille and at home it's easy for them because they can adjust the font to their liking. But if you already have the words on the video set up and the captions on the video that can't connect it with their braille devices.  

[Doug]: And that's a good point that you make, Jason. I mean, every platform is a little different in that way. So for instance, in YouTube, or say Facebook, like you mentioned, where you can pretty easily upload a captions file, that's better to do than burning the captions in because it allows someone on the other end to have a degree of flexibility of how that looks. Certain platforms like Instagram or Twitter, where you can as easily upload caption files, you might want to consider burning in the captions just because it's better to have them there than not have any access to them at all. So yeah, it definitely varies on a platform to platform basis.  

[Jason]: Right. Exactly. Now YouTube and Facebook, they do have those accessible, you know, they already have it available. You can transcribe it live. So that's really nice.  

[Doug]: Yeah, no, they're getting way better with that too. I know, even in the time that we've been doing these broadcasts that the automatic, live captions have gotten way better than they used to be. So it's nice to see technology being used to help create progress around accessibility. And certainly I imagine in the future there'll be even more technology to support a lot of the accessibility initiatives that you are undertaking with your company.  

[Jason]: Yeah, yeah, yeah, yeah. Many states have the resources and they're ready to get that started, but some companies don't have the finances. For example, in Maryland, we have something called the RCC and I'm trying to remember what that stands for. I forget what the acronym stands for, but they have these three resources available for meetings and the host doesn't pay anything and it already adds the transcription. So we do, like you were saying, we do have some of these apps available, but some states are still catching up.  

[Doug]: So Jason, with the last five minutes or so that we have here, you know, I know that you've mentioned a couple of times during this broadcast and also when we've spoken prior about traveling. Can you talk to me a little bit more about your personal passion for traveling and also maybe tell a little bit more about how you as a person who is deafblind travels?  

[Jason]: Sure. Yeah. Yeah, I'd love to. I Have two stories to tell you, actually three, but maybe I'll just pick two to save time. So I've traveled to the Philippines and I was searching for an SSP in the Philippines. I made all these calls, tried to make contacts because people in the Philippines had never worked with a deaf individual before. And you know, Philippines culture food, I wasn't so familiar with all that. Oh, excuse me, interpreting error. So the person who I had hired, the deaf individual, they weren't familiar with Philippines culture. So I wanted to find somebody locally who could show me around and be a quote unquote SSP, a support provider for me. So I found a friend who wanted to learn, was willing to learn. And my friend created an app that made the world more accessible for the deafblind community. So rather than spending all your money to fly another person out, why not find someone locally? And I also know a hearing, sighted person who was, had a lot of experience with traveling. They had been to Australia and we, and myself, we climbed the bridge in Australia, the Harbor Bridge. And I was really concerned about that. But, you know, with the SSP that I found in Australia, we, you know, we were like, oh, it's really dangerous. Not sure how we can make it work, but we did it. It was a success. I couldn't imagine I would ever be able to climb that Harbor Bridge, but we did it, you know, with the SSP and it was quite an inspiring opportunity for me. So that was really one of the best experiences I've had. It's really important for deafblind individuals to get out there, to have those experiences, to see the world, to touch the world.  

[Doug]: And, you know, I think it relates so much to your overall mission of just, you know, part of fostering an environment that is more accessible-friendly and that breaks down barriers between say the deafblind community and the general public is more interaction between those two communities, more visibility. And I think, you know, when I listened to you talk about traveling and your passion for travel, that's what comes to mind for me. Is that not only is it obviously great for you personally, to be able to experience the world and see all these new things and have all these new experiences, but also it's nice I think for people who maybe have never met or seen anyone who is deafblind, to see them out in the world, enjoying the world, just like anyone else would. So I think it's, it feels like it has that extra impact. Do you feel like that's been the case when you've met people while traveling?  

[Jason]: Oh yes, yes. Yes. Definitely. My goal in this world is if I can do it, any of you can do it. Any of you, deafblind and blind individuals who are viewing this video and watching you can do it. Come on, let's do it, let's see the world. You can get jobs, you can have the career you want, you can travel the world. You can have the life you want and the opportunities that you want. So that's really my goal in this life and in this world. And it's my responsibility to encourage deafblind people to do that.  

[Doug]: Well, Jason, on that note, you know, I think that's a perfect sentiment to wrap up today's episode. Thank you so much for joining us today, for sharing everything that you did.  

[Jason]: Thank you so much, Doug, for inviting me on today. I really appreciate it. And I'm honored.  

[Doug]: Yes. And it was, it was an absolute pleasure. And I look forward to staying in touch with you, hearing more about Three Monkeys Communication. And, please do keep me posted on everything you're doing.  

[Jason]: Will do.  

[Doug]: And thank you to all of you who joined us today. We'll be back next week, same time, same place, with another episode of Feeling Through Live. Until then have an amazing weekend and week ahead. We'll see you then. Bye, everyone. 

Feeling Through Live • Episode 29: The DeafBlind Vote

 [Doug]: Welcome to episode 29 of Feeling Through Live. I'm joined here today by Alice Eaddy and we will be talking about everything that has to do with the disability community and the upcoming election that's just days away here. Certainly there's a lot to get into, but Alice, you know, I know that in my research, if you will, for this episode, I've certainly learned a lot. And, you know, one thing that is not something that I have had to previously think about before that I've learned a lot about is a number of different considerations for a lot of people in the disability community, as far as different obstacles or challenges with just casting a vote for the election. I'd love to start off just really like from your specific experience, if you could kind of talk about some of the things that you've had to deal with in prior elections or for this upcoming election in casting your vote.  

[Alice]: Okay. Before, when I do, I have used the electronic machine, the adapted one with the headsets and the big controllers and that, but I no longer can hear enough, even with all my mechanics and cables and all that jazz that that's not doable. So this year I actually did it by mail. But even then the consideration was, I always went super early. Like I was always there by 6:45 in the morning, make sure I had plenty of time. I also, the polling person always had an extra person that sat with me through the whole thing because seriously, the volume that I had the devices on they were, they could hear it standing next to me anyway. So if I had problems, figuring out what the instructions were and that kind of thing, they were right there and readily available, the person that coordinated any repairs or anything like that, he was also the first person there. Anyhow. So it was, it was different, but most of the time in my own county, I was the only one that use that machine in the first place. And that's kinda sad. So, and that whole process, while if you were hearing and could do it hearing blind for me, it could have taken anywhere from an hour to an hour and a half or more to complete, but, you know, I was determined and I stayed in there now doing it this way. You didn't account for, for instance, I had got my ballot in New Jersey, we can electronically do it. So regardless I would have been, had to have somebody fill it for me, which I did that meant calling an agency, making sure they were available, going over there, hooking up with a case worker and letting them fill out the forms and everything they had it equally had to call for advice. So that, that you had that time in, and, you know, the bus trip over and you're out of town and the whole night it was pretty lengthy. But you know, and transportation is equally a problem for most. I do know that they sent out information about specific open polling locations. So I did know that mine isn't outrageously far from here. It's still more than a 45 minute walk, but you know, not outrageously far. But here again, as the blind person, that that would have been the choice we would to have been new, to use the, the adapted voting machine, which I cannot do since I have dual disabilities. So that's not counted in Pennsylvania. It was, they had judgments made that allowed for electronic voting to the extent of not only being able to fill in your form and print it out and mail it that way. So there were other ways that could be done more electronically related to vote than there are here,  

[Doug]: You know, in some of what you just said, you know, I'd read, in reading a number of articles prior to today, I'd read in one that during the 2016 election election in one particular poll noted that 83% of polling places posed at least one impediment for voters with disabilities. And sometimes it was more than one impediment. This year, obviously through, for reasons largely around the pandemic, various other forms of voting such as mail-in voting, or drop box voting have certainly added another dimension to the options available for voters. Has that in and of itself made a large positive impact for the disability community, having those additional ways to vote?  

[Alice]: Well, for me personally, after I had my form filled out and everything, the drop box election drop box actually was literally right outside their door. So when my paratransit came to get me, all I had to do was walk out the door and stick it in. But in some places there are, should you say, fake ones that people were told or the right election thing box to put it in. So you really had to make sure you check with your county as to where are the authentic drop boxes were, unless you just threw it in the mail in general, and then you wanted to make sure you did that really soon and tracked it if at all possible. I confirmed mine and it's definitely there. They had it on the eighth, so I was good.  

[Doug]: Good. Well, I'm glad that worked out for you particularly. And, just the first question, Barbara is wondering what state and County that you voted,  

[Alice]: I'm in New Jersey and I'm in Cumberland County,  

[Doug]: Cumberland County. And what have you found again, you were starting to get at this, but you know, I imagine it's quite different from location to location, but previously when you voted in person, you kind of talked about having to go really early and know that you are going to face, perhaps some extra impediments there. Are there other people in the disability community, in your general area that you've spoken with about their voting experience in past?  

[Alice]: You have to remember that in between 2016, they even moved our actual voting location. So when you got there, there was a lot of confusion as to how do you get in and a whole lot of other things. And because of, you know, me being dually disabled, where they actually put it, if I was hearing blind, you really wanted your machine to be in an area where it was relatively quiet, which really doesn't happen because it's not doable. So sometimes you would have other voters complaining about the machine in the first place you'd have. So you had to deal with regular people trying to get in, and the idea that I'm doing it early, and they might actually come get me and pull me into that room before everybody else. And now you got people that have attitudes and that kind of thing. So, yeah, there's a differences, especially when they moved, there are actual physical polling location. And the year before last year, I didn't vote because I was at Helen Keller National Center and the process to acquire the, you know, to sign up and everything was an inaccessible building and a location that was not accessible for me as a disabled dually disabled person. So I could never even sign up for the absentee ballot. So, and, you know, and you have to remember that probably some of that was part of the process and it just made it complicated for us. And here, a lot of us, we have a higher illiteracy rate in our, in our county in general. So that's a problem. And they did this year though, actually have people going door to door to make sure you got your ballot. That hasn't happened. I don't think I ever seen that since I can remember. So that's a nice tidy little thing to have happen, but, you know, I've heard from others that they did make random phone calls, which wouldn't do me any good because I wouldn't get them anyway. But, um, yeah, so.  

[Doug]: Just to continue this part of the conversation about, you know, how different people have different considerations when voting, I'm going to just read a short section from a recent New York Times article, which reads, Sheryl Grossman voted in Maryland's primary this year by taping a blank mail in ballot to her door, alongside her list of choices. As she watched through the window of her home in Baltimore, two election officials filled out the ballot, texted her a photo and sealed the envelope. And, Sherly, just kind of skimming down here, Sheryl has Bloom syndrome, a genetic disorder that we consider immune system and causes cognitive disabilities. And because of the pandemic, she can't safely go to a polling place or allow anyone in her home. And because she can't read text with formatting like italics or borders, she can't complete a mail in ballot. And I found that really interesting because, you know, I think a lot of times when, at least for me, when I first heard about accessibility issues at the polls, my thought immediately goes to you know, ramps for wheelchairs and maybe certain devices for people who are blind or low vision, or maybe an interpreter at the poll. I would have, my mind would have never gone to something like that. So I think it's really interesting to kind of learn about the different ways in which different voters have different considerations when it comes to being able to cast their vote.  

[Alice]: Oh, there's a little known usage even for non-disabled folks for the adapted voting machine, because it has multi-languages, it would be fantastic, but apparently it's not highly advertised as such for any foreign non English speaking people. And that would eliminate so much more inabilities to vote because it has the ability to digest and send out that information in multiple languages. But here again, well, if it's actually spoken, it wouldn't necessarily matter when they could read it. So that would be useful. That's just a tiny tidbit of something that that deputy machine can do that people don't think of.  

[Doug]: You know, just like kind of to move to a slightly different part of this discussion, you know, beyond the accessibility component of it, there is the voting power of the disability community. So I think if you read different things, you'll find different numbers, but I found that an estimated 38 million eligible voters have disabilities. And then beyond that, that number becomes more like 67 million, if you include people in the household, which constitutes a very large percentage of the overall vote. However, I've often heard that it doesn't, there's also this statistic to go along with that, that in one poll that I saw, 61% of voters with disabilities had a negative opinion when asked if they felt like their elected officials were addressing issues that were specific to the disability community. So why do you think it is that there, it feels like there's, elected officials don't really address such a large voting demographic?  

[Alice]: Because most of us never see them among other things, you know. Under the pandemic, it made it worse because normally if I were looking to hear about my elected officials, I would be at a senior center or some of the different disability awareness council. We usually had a meeting and had a forum for those folks to come and speak, you know, do their little spiels throughout that day. And we didn't have that function either. And so we don't really see them. They're certainly not coming to places where deaf folks would be hanging out, and depending on where you get your news, you're not going to, you could be shut out that way as well, because, you know, we actually had to have somebody take the White House to court to just talk on TV and have an interpreter available. So, I mean, you know, that whole communication backlog becomes a problem period. And, even in the meetings that I attend, I use adapted equipment as well as adapted headsets and different things just to handle the meetings and forums that I do go to. And it's not always done even in the ones that are sponsored by our police departments and our Elks clubs, where they have specific forums for seniors and people over 50, the idea that they would actually come have communication access doesn't happen. I usually bring my own.  

[Doug]: Do you feel like personally, you know, personally from your perspective, Alice, do you feel like, whether it be presidential candidates or other candidates for other seats, speak to issues on, that are important to the disability community and is more specifically important to you?  

[Alice]: Um, not necessarily. I mean, we know economics and jobs and that kind of thing, but we also know that for instance, the minute the pandemic hit, those service personnel that were vital to us were the first things that we're eliminating. You know, a lot of us have multiple disabilities and some of our attendance and personal care folks and all of those were equally affected, and that left us even more isolated than we were in the first place dangerously. So now you've got that level of in excess and their healthcare could be affected as well, and not counting the whole mental health effect of the pandemic, the anxiety, the different versions of whatever you're told and that kind of thing. And not having anybody to assist very often is maybe off the, it made it very, everything was unreachable to some degree. And for me, somebody that also, you know, like here again, our interpreters were equally affected and SSPs, and are what access we have has been virtual, which has been helpful, but, you know, like helping to set up your shopping and different things that we would need, but a lot of other needs were not met. They didn't think about the, those in senior homes and assisted living places and places for challenged adults they're living in group homes and all those kinds of things. Most of them aren't getting reached by pretty much anybody, you know, and if you have just the staff that worked those facilities, there's only so much they can do, they got them, they have their hands full just keeping you guys alive and doing the daily. So, yeah, we're excluded.  

[Doug]: You had mentioned healthcare. You know, in a lot of what I read, when looking at what issues are most important to a lot of people in the disability community, certainly healthcare came up at pretty high up or at the top of the list in a lot of things that I read. Can you maybe discuss more about that? Whether it be, you know, from what, you know, in general, or maybe more specifically from your experience?  

[Alice]: Healthcare as a program or a healthcare as an access to healthcare program systemically? Currently our president wants to kill it all together, depending on how you listen to it. And so that's really bad because there are a lot of serious implications of things that can be dropped that we don't need. They changed for instance, even for elections and other kinds of identification for other kinds of programs. I spent like a year and a half ago when he first started moving to a more stringent ID process, the poor, the handicap, the disabled, those that, you know, are in marginal employment. They're the first ones that are going to be stuck, trying to find official ID. And if they don't drive, that means, you know, you could be going a good deal of distance just to get those things done. I got in a whole lot of trouble because apparently so my official ID didn't have my middle initial and, you know, so that meant traveling. I did the motor vehicle place, and it is a bigger version. There's a local one, there's a regional one, and there's a state one day and I've been all over the place. And, you know, that meant different kinds of transportation, different kinds of communication needs. And in very often, you'd sit there and hope they'd send somebody that would actually tend to your needs. And that's a whole nother story, but I did eventually get it done. But that whole, that concept of idea alone made the process very complicated for people to get it. But if you didn't have your university certificate as one of your bigger ones, now I have the passport. Then the one that looks kind of like a credit card, as well as the little passport, that's the book, the whole nine yards. I did everything I could possibly do to make sure I was covered. But some people couldn't.  

[Doug]: A question from the audience here from Judith, she asks, Alice, how much activism has there been to bring the disability community together as a voting block? The way other minority groups are to view them as a more powerful force?  

[Alice]: Where I live in my county or anything, none. We, yeah, that's very limited. I learned most of my knowledge through Helen Keller National Center, because we took a lot of classes this summer while I was still home. Snd through groups that I am affiliated with, but, and we, we try to collaborate and share knowledge as well as councils that I serve on. But most people aren't, I don't even have access to all those things. So there's a whole gamut of non-information in general. Some of us don't even have enough trouble figuring out what we don't have in the facilities we live in. And if there's short handed in that, so you now have barriers to any kind of extra communication. Once they locked down places, you didn't even have visitors, so you didn't have that part.  

[Doug]: You know, I'm curious on another, another thing that I saw in reading for today's episode. Something that I noted, I guess one of the topics that I saw a lot about was the politics of disability-related policies. So something that I'd read and knew a little about from before had to do with the fact that initially disability related political topics were bipartisan. You know, if you go back to the ADA being, I believe initially introduced by a Republican Senator and signed under the George Bush administration. Now in a statistically in a lot of things that I looked up, it seems to be a pretty partisan issue with it being much more frequently addressed, again, maybe not enough in either, but in the democratic party versus the Republican party. I guess I don't really have a question about that as much as, like, what are, do you have any specific feelings or thoughts around why it's become such a partisan issue and not something that seems to go beyond party lines like it seemingly once did?  

[Alice]: You have to look at our present leader who has kind of set those guidelines and made it fairly visible, brought back some of the more violent versions of our past and made racism even more, hi, how are you, it's it's okay, because he doesn't seem to stop it. A lot of those things changed the way people used to think, well, why don't we at least look like we're on the same page, you know? And when you attack your own party periodically and other officials, and basically say, you're going to pull their state funding because they don't follow what you want them to do. You kind of lead, you know, you just let the horse out the barn and it made for my, where I sit, it made it real clear. We didn't matter from quite some time ago. And so it depends on your leadership. It depends on who's still got backbone and not counting the division in the various political parties to getting things done. You just, basically, you made it, you made it more essential to not get anything done than you did to make something happen. So everything, no matter something teeny weeny, weeny is just a battleground all the time. And if part of your goal is to dismantle healthcare, well, we're already stuck. You know, there's nothing we can do about it, where we are losing as the owners, this pandemic goes, we lose a lot more, you know, not counting our homes the ways to save us from rent issues and all of those things where we're pretty much dead in the water, but that's some of that's orchestrated by inaction and kind of like, let's make one thing a priority and let everything else suffer period. So while they're fighting about who can, how you proceed with something, everything else falls apart.  

[Doug]: I'm wondering, and again, they're there, I'm sure there's a lot of things that are going on that I'm not aware of. But you know, again, just you talked about in your local community, you didn't feel like there was a lot of activism that was bringing the local disability community together to be a more powerful voting block. Do you have any thoughts of, of what could be done to create more of a unified front there and to have a more powerful voice?  

[Alice]: Inclusion. The beginning of inclusion. And it means everything from, you know, you went, this is a training topic, but we, when we eliminate the services that make people aware, we cut programs, we cut funding to, or change the ways that medical care, for instance, the abortion issue. We turned that into something where you're pretty well guaranteed, pending anyone of low income, can't actually take care of them and maintain their own body in that relationship. And you made it something that they've got to go out of state out of country for all kinds of things, whether it's your medicine or something else now you've totally divided. It's like you took the city and cut some, you know, made some squares and cut a couple of sections out. There's no way to put that puzzle back together. And if the county or the town you're in, doesn't make the concerted effort to kind of, okay, we'd better start rebuilding here and putting back into place. The things that we've eliminated. There's no, there's not much chance. Then you're going to have the same kind of anger and, you know, not necessarily violence based, but because we weren't the ones making the violence, but the confrontations are going to be there, especially in the medical area. And there's always going to be some kind of drama or trauma. That's not going to take the high road and it's going to be the only thing people see and they forget all of the other interconnected things that made that worse.  

[Doug]: I'm going to just take a quick pause here for an interpreter switch. All right. All set. Great. Continuing here. And for those who are watching us right now, if you have any questions or thoughts about anything we're talking about, we'd certainly love to hear from you. Whether it be questions for Alice or your own personal thoughts on sharing any obstacles you perhaps had voting or any anecdotes you have about that, we're certainly happy to field those, but, continuing here. You know, we're, days away here from election day. And hopefully not that long after knowing who our next president will be though there are certainly some thoughts that that portion of things might get dragged out depending on what the numbers look like in a few days. But I guess just kind of thinking ahead here, what are you hoping for in the future around various policies or anything political that would change for the better for the disability community at large, specifically the deafblind community?  

[Alice]: Well, we can start with hoping they don't defend the social security tax, because that would end up with lots of things related to social security and Medicare being defunded by 2023 and tons of disabled people, not just deafblind people are affected by that. It would be a disaster for us. And I mean, there's that, then there's just, if we're going to reformat, for instance, to policing and other things, where are they going to draw the party lines? Where are they going to divide the cities even more? We're already, they've already sectioned out for instance, in a lot of the poorer sections of town. Those are also a place where a lot of the clinics and the side, smaller offices, those are all gone. You know, a lot of the factory type work, a lot of the work that most of us would be capable of doing that's gone. Economically I have no idea what we're going to go and it certainly, ain't going to be fast enough to secure our, the integrity of our own country, you know, where we're not looking too good on that front. So that just, the economics of things and the way to get any assistance that you want. For instance, during the pandemic, they talked us into using a forbearance as a way to lower what you were at spending out for your homes if you were a homeowner, but they didn't tell you that when you did that three months down the road, they wanted that full amount of money plus interest immediately after that three months. So I did that and came to that realization. And now you've got a plan that's going to cut, I'm going to be paying almost twice my mortgage. Well, definitely twice my mortgage that I originally had just to get out of the forbearance thing that I signed into. And I won't be out of that until after February. So some of the things that people told us to do that we would not have, you know, had the expertise to understand those tiny little details, they were disastrous ideas in the first place, and you've got plenty of them.  

[Doug]: Do you think there, you know, just that, that just makes me think of education around, you know, whether we were talking about how to, you know, how to make sure that you're able to vote or anything political related. Do you have any, do you have any personal resources that you go to that you find to be reliable resources to educate yourself around topics that pertain to, you know, anything that has to do with an election or policies that are most important during that election?  

[Alice]: Oh, I do only because a lot, I sit on a lot of boards in the first place, for instance, I'm on the transportation advisory board. So I know all the kinds of kits that are likely to come our way and that kind of thing. I'm on the disability awareness council. So I'm fully aware of usually of the different kinds of things in my county, and it can be done I'm on the area agency board, so that I get at least privy to some of it. Because if I went to our county website, I don't have the same access that I would have hoped there would be. So I'm in the right places. I, you know, I do my research, I get a lot, I've learned a lot over the summer through Helen Keller National Center, going back to agencies. So I mean, you you've got to do it, but, and there are some of us that can't, they, we truly can't, you know, by the whole process of changing how we're doing education and making everything zoom oriented families that don't have internet, or doing lots of bizarre things to be able to acquire. They weren't prepared and they didn't know how to do it. And, you know, there are programs that have come out that will make sure that they have, you know, the schools let them borrow things long-term, kids had been using for instance, like Burger King and McDonald's and all kinds of places that has free wifi and, you know, doing that. Some, you know, you've seen a lot of kindness being done where people have assisted, but there's going to have to step it up just to bring people halfway to par because the haves, the have nots and the exclusion is so deep and it's, they've made it specific so that, you know, we don't cover all of those little nooks and crannies that we created by manipulating how housing is done, how, where businesses go. All of those things are going to have to be looked at in a different way, not counting those people that come have formed backgrounds and immigration related, all that drama.  

[Doug]: You had mentioned a couple of times now, some of your education being at Helen Keller National Center. Can you talk a little bit more about what that's entailed or what that looks like?  

[Alice]: Anything, or just what I've been doing this summer?  

[Doug]: I guess, maybe more pertaining to this summer.  

[Alice]: I did take some advocacy training this summer. I've been involved in sharing support groups I've been involved in related to like, just dealing with COVID and being a support group amongst ourselves to try and answer all of the kinds of questions. Like how do I get the doctor's office now that I can't do this? And how do I, how do I manage to make communication happen when I don't have an SSP or an interpreter? We talked about how we use our own technology. There's also, there was actually a support group related to that as well. And it helped us with our technology. There were ones that helped us with trying to learn how to get, make sure we weren't food, you know, food wise, how you learn, how to shop online, how do all those different kinds of things did you have to consider medical things. What if you had lots of appointments that were out of town, some in some cases out of state and I do too, how are you going to logistically manage to do all of those things? And so you had to have a device, whether it was the audiology department on the mental health person on campus, mobility instructors, lots of stuff. So there's a lot that was available to me that I'm thoroughly grateful for, besides just having a place, not to stay on your head, you know, but being able to talk to each other is much more important.  

[Doug]: I'm coming back to this, and I know we kind of touched on this earlier, but maybe I'll ask it a little bit more directly, but for you personally, whatever you'd like to share on this, going into knowing that we're days away again from, from election day, obviously many people have already voted, but nonetheless, what topics or issues are most important to you personally, that you feel like sharing?  

[Alice]: Healthcare, housing, how to keep your house if you still own it and not end up losing it under these situations. Jobs, because a lot of us have been out of our jobs long enough that especially if we didn't have, you know, serious secure ones and we weren't able to work from home, a lot of us are seriously unemployed. The number of say, for instance, blind vendors that work with those folks, they haven't been able to go, you know, state buildings are closed, this, that,  and the other thing. So a lot of those folks are just as hard up as we are. And, you know, so you've got those considerations that are paramount, you know, my house, or should I say my mortgage dependently went, got sold to another company. And when that company took over, the rates were higher. So that, you know, there's always something and you're talking about just plain basic things that we have to worry about how we're going to do it as this epidemic continues to wander along. And, it's going to be complicated, even the things that are coming out. Like I did get back to the gym. Thank goodness. I love it. But there's a lot more, I found that there's the way that I used to walk there for instance. Totally unsafe. So a lot of logistics of how to get to where I need to go, whether it was a store or, you know, like I could shop online what they wouldn't deliver. So I'd still have to physically go there. So now you're talking about how are you going to drag a hundred dollars worth of food back and stuff. We have no taxi service, by the way, it's gone. It left somewhere between the summer and it is totally gone. And the whole taxi building thing is absolutely. They literally tore it down just now. So it's adding, so we have no taxi service in my town and the way that they're doing paratransit it, say the bus can hold 10 people. You're not going anywhere with more than four maybe. And that kind of thing. So it's complicated using the regular public transportation turned into a nightmare. I've been on a running argument with them about communication access for deaf people since the pandemic hit. So there's a lot just how did to do the normal things that everybody else does and people avoid you like to play or pretend you're not talking. And sometimes it's easier not to talk and just use whatever communication devices, and cards and whatnot that you have. It's exhausting and tiring and frustrating. And, you know, it's sad in general,  

[Doug]: You know, talking about to a little bit of what you were just talking about in there and what we were discussing before, as far as there being, um, certain considerations for the disability community, that a lot of people who aren't a part of that community are directly connected to, it might not be aware of. Do you think it's important for other people to be aware of say the disability community's around voting and certain policies that are important to them? And if so, why is it important for other people to know about that? So I'm just more speaking to the, like having a way, those who maybe aren't familiar with accessibility issues for certain people at the polls or certain things having to do with, certain topics concerning certain people around health care. Why even if it doesn't affect you personally, why do you think it might be important for people to have a greater awareness of those issues? Even if it's not something that's going to be directly affecting them?  

[Alice]: Okay. If you're talking, just getting into the poll, for instance, I point blank asked them about, since I can't use the talking machine, what if I, if I had an SSP or an someone to sign with, would they be able to go in with me? They said, yes, there's, they actually have a special waiver type form that they would sign. So if that could happen, that probably also means you still potentially have a Democrat and a Republican there too, but theoretically it could be done. They, you know, on-site but, here again, you've got access issues of getting into the place if you've never been there before. Like the first time I went to the new polling place, I was lucky. I had a friend who had been there before and at least kind of knew where it was supposed to be. And then it was, I'm kind of in the vicinity now, what, because it was somewhere near my Millville public library, which, you know, there's a whole lot of stuff over there. And once you got to the parking lot, okay. Now what do I do? Because no, I never even knew the building next to it existed. So, you know, that way, so I was lucky. There were people actually standing outside and, but for instance, medically in displaying, walking in the building under COVID, and using para-transit to get there, I had surgery over the summer and, I was fortunate that I was COVID tested because they wouldn't let me have the surgery without it. And they were supposed to provide an interpreter for that process. And it was on a Sunday. And of course, public transportation runs different on Sundays. And so that's a whole nother belly whack of stuff. And I had a friend that was going to come with me. He couldn't even get an Uber from his town to come into town to help me. So once I knew there was no interpreter, it would became a process of they said the place where they were doing the COVID test, it turns out it was actually really a tent, but visually I'm not going to see a tent, it could be a mountain for all I care, it wouldn't have mattered. I get to the, I finally get to the hospital and I knew how to get in because I'd been there before and they, you weren't supposed to by the way. So I get in and the security folks came to directly and I told them where I was going. And they took me back outside and you stand in this line and you, then you watched how many times they came out and pulled other people in past me to test them and ignored the fact that I was standing there, period. So now I have my iPad and I have apps in there. So I literally wrote, this is me. This is my appointment time. I'm supposed to be tested now. And it's black background, white letters can't miss me. So I positioned myself as close to where I thought everybody was coming out just to be seen. That's crazy. You know? And of course, then there's all that confusion about what they're going to do with you once you walk in, because she's like really, when did that new discovery, because, and you have you talked to them to plan all of that in the first place. So you're talking tiny, every little thing, getting into the building, getting out of the building, parking. It turns out when I had my procedure, I went in one place, but the actual surgery was in another building. Now you've got to figure out how are you going to tell the driver that you got switched? So that ring hires me, making sure I hit security or somebody else to call them. And, and it's, it's a monstrous thing. And just because hospitals say that if you're deaf, you can do XYZ. Don't believe the process because it doesn't always work. And you gotta remember that the interpreters don't necessarily have the PPE equipment to be there either. You know, because the interpreter that I had fortunately had the shield kind of mask, she had the one that everybody's wearing but she also have the shield. So for me to use the shield, because I had at least some access to her face to know what possibly came out of her mouth and whatnot, she still signed, but you know, that just teeny tiny, real communication is utterly ridiculous on any planet. Medical doctor going to, getting it, like, God forbid you lose your wallet and you have to get replacement ID. Going to the bank was horrible. Because what are you doing with a disabled person that has to go through the drive-through? What are you going to do with them? You know, and I mean, I survived it with communication cards and an iPad and all that knowing full well, they could talk through that little microphone thing. Didn't do a darn thing for me and they didn't get it for awhile. Um, and hope nobody ran you over because you took up all their time and, and stuff. They didn't think at all about what they were doing to people that don't drive that couldn't physically get into the banks when they were closed and they had to do that. And, and that applies to a whole lot of other situations. So those concerns, yeah, it'd be nice if you'd have thought through, okay, we're closing down this state. Why don't we make caregivers? You know, well you call it essential and they didn't. And because they weren't essential, they were the first things. I had a personal attendant, personal assistant. That was the first thing left because they couldn't come in the house, you know, and people that use them for daily living real daily living, like getting out of bed and getting dressed and going to the bathroom and all of that, what happens to them? So yeah, there's a lot of tiny details. Nobody thought of,  

[Doug]: You know, something that's very evident from a lot of the anecdotes that you shared and certainly, you know, personally getting to speak with you a bunch is that you're really, you are very great at advocating for yourself. You know, something that I came across, maybe for those who don't quite have that skill, or it's not something as well worked for them. I came across some basic voter rights that I thought were really straightforward, but important to share. And the ones that I came across read as follows one first and foremost, the polling place must be accessible to you. And I know, Alice, you were already sharing the difference between the idea of something supposed to be one way, but the reality of if it really doing that or not. And certainly there are a lot of accounts of polling places that have various accessibility features that aren't working properly. And aren't adhering to that, but certainly that is a must and certainly something that's part of, you know, the ADA and things that have been implemented since then. Um, and you know, another thing is that you also, you can take your time and not to feel hurried. I know a lot of times when there's extra considerations it can, and maybe there's a long line. It can feel like, come on, get this over with, but you're entitled to as much time as you need to be able to cast your vote. And another thing is, you know, so something that's certainly necessary for certain people and, is that you can bring someone with you to help assist you in whatever way that might be. And that's part of your voting rights. And for anyone who feels like their rights are being infringed upon, one number I came across and I believe there's local numbers as well, but one kind of general number I came across was 8-6-6-O-U-R-V-O-T-E, whatever numbers those translate to, I don't have my phone by me right now, but that's the election protection hotline for Lawyers Committee for Civil Rights Under Law. And if there's any issues that you have at the, at your polling place, and you feel like your rights may be infringed upon, you can always call that number to discuss that and make sure that you are, your voter rights are protected. So I think that's, something that, I think it was important to share in the context of just having the right tools at your disposal to advocate for yourself. If you feel like there's, if your voter rights are being infringed upon. So, you know, Alice would kind of like, moving into kind of the final stages of our discussion today. I'm wondering if there's anything that we haven't yet touched on or anything that you'd like to, to expand upon, anything that comes to mind there?  

[Alice]: I worry that with all of the emphasis on just COVID and the disaster part and the part that's actually effective, jobs, mental health, we are going, we as disabled people and you guys are in monstrous, we're in a lot of do-do on that one. But the funny thing is, in some ways, disabled people had their, a better grip on it because we spend a lot more time being isolated. And you do so some of the isolation, although it still sucks, it hasn't, it still gets to you, uh, the idea that we don't have human contact still gets to us, but it's kind of different when your whole life is that way. Most of the time. Because I mean, in my town, there's nobody deafblind. Absolutely nobody at all. So I don't have, you know, I can't go out anywhere and know that I'm going to have communication access. So, but for like, if I had a best friend and I do, and I've actually gone out of town to visit, and that would be, those were my access times. And being involved with various disabled, deaf-related activities and sorry that, that away give me the ability to, um, to interact with each other remotely. If I didn't have our own clubs and different things that I'm involved in, at least I see them, when I have my communication facilitator or my playing games or whatever, it's, they're right there on that screen, you know who they are, we know who is on who's coming to play the game. Who's coming to do the happy hour, all kinds of fun things design for us because we can't go somewhere. I mean, I don't do it normally. I wouldn't go, you know, like I don't go clubbing and bar hopping and all that kind of jazz period. And you know, we can't do it because of social distancing and sign language. Yeah. There's no such thing as sign language for us, six feet over, you know, the dogs don't, you know, telling us, not like in line at stores and people being grumpy because our dogs aren't social distancing. That's not a part of the plan. You know, it don't work that way. Gyms, same thing. I mean, what they managed to do on a gym to make it useful was amazing, but a lot of, you know, getting our hair done, do you know how insanely it was? It was like being reborn to be able to go and get your hair cut because that, that alone raises your morale astronomically to be able to come to yourself from the, oh, now I feel like a human. So I mean, we need those things and they're still going to be hard to come by. And for us, there's still not enough of them, social things, or otherwise those are it's going to be worse because once we as unemployed, there's our unemployment levels get even worse, we're not going to be able to afford the kinds of other places. So we're going to need lots of other mechanisms to maintain our children. Keep them healthy, find ways for them to have socially acceptable relationships and guidance and stuff. Because what if there, what if God forbid the home they live in has abuse there. They need some. Now you need another outside entity that can be a resource for that family and stuff. I saw that they've, been talking a lot about tiny little cues that someone might use to let someone know while they're on social media, you know, discreetly, I am in trouble kind of thing. That's really awesome because there's no other, you know, it's awful. But that's not that nobody's talking about the super long orange long range plan for the mental health of this country and all, you know, we think we got shortages and teachers and other things are that they're going to be a shortage of those guys and professionals for that problem for a long time.  

[Doug]: You know, Alice with our final question here of the day, Barbara asks, have you considered running for office? And that makes me think, should we start, should we get Alice 2024 going here? Should we, should we start early? What do you think?  

[Alice]: No, I've never actually thought of that. I do. I am. I still continue to be a part of as many kinds of coalitions as I can, but no, I never actually thought of that one.  

[Doug]: Well, you know, 2024 is going to be right around the corner. So if you need, if you can count me as one of your campaign volunteers, if you decide to run. All right. So just give me a heads up on that when you make a final decision about it.  

[Alice]: Alrighty,  

[Doug]: It has a nice ring to it, Alice 2024. I think that sounds that that's kind of catchy.  

[Alice]: It'll be interesting. Lord knows what it's going to look like. I just want us to really plan rebuilding properly to make it less divisive, more inclusive to bring us back as a country, the way that we started, because we just drift in. It didn't take long. Apparently it was easy to do. We easily get distracted into not seeing the forest for the trees. And this is where we're at. It's gonna take a lot of work.  

[Doug]: Well, Alice, you know, I think that's a, that's a great sentiment to end on today. And, you know, thank you for everyone who joined us today. Certainly, we encourage you all to make your voice heard and cast your vote in whichever way works best for you. Alice, thank you for joining us once again, and I hope you, return in the future to discuss any number of topics that it's, it's a real pleasure to discuss with you.  

[Alice]: Okay.  

[Doug]: Well, until then, um, everyone we'll be back next week, same time, same place with another episode of Feeling Through Live. And we hope you have a great weekend and week ahead. Bye everyone.  

[Alice]: Bye. 

Feeling Through Live • Episode 28: National Disability Employment Awareness Month

[Doug]: Welcome to episode 28 of Feeling Through Live. I'm joined today by Chris Woodfill and Bryan Ward, two amazing guests who are going to be talking everything that has to do with National Disability Employment Awareness Month. And before we hop into all of that, I'd love for you guys to introduce yourself. So Chris starting with you, can you, can you give a quick introduction?  

[Chris]: Sure. First of all, I do want to say I'm very honored to be involved. And this discussion again today with you, Doug, especially as it relates to NDEAM. Like you mentioned, my name is Chris Woodfill. I currently work as the associate executive director at Helen Keller National Center, which we refer to as HKNC. I've worked there for eight years now. Prior to that, I've worked as a teacher in the state of Wisconsin at the Wisconsin School for the Deaf. I was a teacher there for 13 years. And prior to that, I worked as an English as a second language teacher at Gallaudet University. I've had a lot of part-time jobs as well in the interim internships, various employment experiences from my teen years through today before I got my first full time job, which was at Gallaudet. I had a lot of internships and other things through school, and I know we'll get into some more of that later, so, I will stop there for now.  

[Doug]: Great. And, Bryan, can you give everyone a quick introduction as well?  

[Bryan]: Hi everybody. My name is Bryan Ward. My sign name is beyond the back of the hand. I want to say thank you to Doug for allowing me to join today. This is a great event and it's a great opportunity for us to celebrate National Disability Employment Awareness Month. I also work at HKNC. I've worked there for three and a half years. Now I'm the program coordinator for the New York Deaf-Blind equipment distribution program. It's also called New York ICC. I Can Connect. I went to college up in Rochester at RIT, and I've had different jobs there as a student. But after I graduated, I got this job at HKNC and I've been here since.  

[Doug]: So, you know, there's a lot to get into, but I want to start with the basics. You know, Chris, I've known you now for about three years and one of the very first conversations we ever had, you told me that of, you know, the most important topic to you personally is disability employment. And, you know, specifically for the deafblind community, obviously the primary community that not only are you a part of, but that you work for. So I just want just to start things off for people who are maybe new to National Disability Employment Awareness Month, which we shorten to NDEAM, can you tell everyone a little bit more about what it's all about?  

[Chris]: So the month of October, which was the month that was selected for is it is used to both recognize and celebrate the contributions of disabled people to the workforce. Another goal that they have is to educate about employment. And one of the big, one of the big aspects of NDEAM is to say that people with disabilities can be productive members of the workforce and can be an asset to companies. They can benefit organizations, and it does benefit organizations to hire people with disabilities. So NDEAM's goal is to really get the word out there throughout the country to educate about disability employment, and to also spread the message that disabled people can do great work, they can aid in production, they can contribute successfully to the workforce. They can help organizations accomplish their goals. They can do that in the government sector and in the private sector as well. Government sector and nonprofit. So that's really an important point. There are a lot of disability related organizations that do NDEAM related events. It becomes this really big push during month of October to get their names out there. Vocational rehabilitation agencies, which we say VR agency are one of the biggest proponents of NDEAM.  

[Doug]: You know, Chris, some of this, what you touched on in there, and you know, I think to me as someone who obviously knew very little about the deafblind community and certainly the disability community at large, if I go back three years, prior to the heart of the Feeling Through journey and something that I know a lot of people who, or maybe where I was a few years ago, a lot of what your, the work that you do this month, and that Helen Keller Services in the Helen Keller National Center does this month is to educate people so that they, to rid them of their false assumptions that they might have about the capabilities of the deafblind community and any other disability community. And, you know, Bryan, my question to you about that is, you know, what are some of the false assumptions that you come across? As far as what, the ways in which people assume, you know, what you, you can't do or what the deafblind community can't do that are maybe the most common ones that, you know, you'd like to dispel right off the bat here on this episode today?  

[Bryan]: This is Bryan signing. That's a great question. I want to mention two things. Many people hear the word disability, or that someone is disabled, and they automatically assume that there's something wrong with somebody. That's the first assumption that people make. And then when someone hears that someone is deafblind, they automatically assume that somebody is fully deaf and fully blind, which is not true often in the course of my job or in the course of a meeting peers and colleagues, they meet me and they realize, you know, I say that I'm deaf blind, I may say, but you can see me. I am legally blind. I don't have much peripheral vision. I can't see far away. I can't see at nighttime. And it takes a lot of explanation to get people to understand that blindness does not mean completely blind. Society is just not educated enough to understand the spectrum of what disability looks like. And I may be the first deafblind person that somebody has ever met. So they have to question those assumptions. So that's why it's really important to educate and clearly educate people. So that, that image that they get in their heads when they first hear a particular term, isn't the image that sticks.  

[Doug]: Yeah. That's, you know, thanks for pointing that out, Bryan, and certainly that's something, you know, I'm one of those people that did not know that prior to getting to learn a lot about the deafblind community. You know, I didn't personally understand the wide spectrum of manifestation of deafblindness and the many different communication styles and everything that goes along with that. So thank you for pointing that out. You know, I think one of the best ways to start to break down, you know, erroneous assumptions about capabilities is to hear directly from people in both you, Chris, and you, Bryan, who are extremely capable, intelligent, and accomplished individuals who are deafblind. You know, I'd love maybe starting with Chris. Maybe if you could share a little bit about, you know, what it is you do on a day-to-day basis, and, you know, by extension, I think that'll fill in some people's understanding about, you know, one of the many things in which the deafblind community is very capable of doing. So can you tell us a little bit more about, you know, what it is you do at Helen Keller National Center on a day-to-day basis?  

[Chris]: Sure. So I have a lot of responsibilities. The list is pretty exhaustive. So again, I'm the associate executive director, so my responsibilities kind of span the gamut of what HKNC does, but my day to day schedule varies a lot. It's not the same every day. So I'll start by saying that, but I'll give you a couple of examples, or just to give you a general understanding of what a day might look like. Part of my day always involves meetings. I have direct report staff. We just did some reorganizing at HKNC. So I can't remember at the moment exactly how many direct reports staff, I believe I have 13 or 14 staff that directly report to me. So I'll have meetings with one or several of those people throughout a day. I meet with all of them at least once a week, but each day the number varies. Most of the time now we meet virtually, I use my iPad and I have a zoom on there. We use Microsoft Teams. They have a video option on that platform as well that we'll use occasionally we'll use FaceTime. I'll use the video phone sometimes. I've got a lot of different options. One of my direct report staff is fully deaf and fully blind, which is like Bryan mentioned what a lot of people think of when they think of somebody who's deafblind. This person is that. So video is not an option. We have meetings over text message. So we have a time to chat where we don't get distracted by emails or other texts. It's just the two of us and we have this meeting via chat. Those meeting are anywhere from 30 minutes to an hour. In addition to those direct report meeting we have team meeting as well. I have a senior leadership meeting. I meet with my supervisor. There's people throughout the agency. Sometimes there's a meeting for a particular reason or particular event that's coming up that I have to attend the meeting for. I do a lot of emailing. To be a little bit more specific its really anything and everything. We used to be heavy paper users at HKNC and now a lot of things have transitioned to online. So I do requisition forms. I used to get a piece of paper for those. Now they're sent to me via email. I have to sign them electronically and email back. So the number of emails I have to deal with on a daily basis have gone up quite a lot. People ask permission to come to the center. We have protocols in place now with COVID. We need to make sure that there are not too many people on campus at any one time. So it's a lot of scheduling, a lot of rearranging, a lot of organizing. People may not understand, you know, that I do have vision issues and not understand how I can keep up with email. I use ZoomText and fusion, which are two computer programs. They're pieces of software that change the colors on my screen. Most people on their computers have a white backgrounds and, you know, black texts, which for me, it really jarring. I have it opposite where I have dark backgrounds and light colored texts. So it's a lot easier on my eyes. That's called inverting colors. And I also use something called ZoomText, which makes the fonts on everything a lot larger. There's a lot of things. One other thing I do want to mention, you know, I do a lot of documents, document editing and drafting documents. Same thing. I invert colors. I make the text larger. That's how I edit documents as well. And for another part of the day, I do report reviews. So people send me their reports because our staff is required to write a lot of reports. So I read those, give feedback, do report consolidation, sometimes have meetings to go over those reports. I do strategy planning. So part of my days involved in thinking and a lot of thinking, making notes, you know, I came up with this idea for a new department at Helen Keller called the Technology Research and Innovation Center, which we're calling TRIC. You know, we have to think about how that is going to operate and what that department's going to look like. So I do a lot of strategic planning there. I have to write job descriptions for the different positions that are coming up. We have to develop budget plans because people need equipment. So we need to budget for that. I do a lot of thinking on how we can do outreach, you know, to get our name out there, to get people coming in to the center for classes. I do interviews with people. So my day to day varies quite a lot. It's a really awesome job. I absolutely love it.  

[Doug]: You know, we have our first audience question and, you know, Bryan, I'd love to start with you if you have any thoughts or an answer to this question. I know, Bryan, in connecting with you I know you're someone who has multiple degrees and this question is about education. So perhaps you might have something to say on it. But Nilam asks, how do we address the need for accessibility at schools in helping with better employment opportunities later on? Do you have anything to say about that, Bryan?  

[Bryan]: This is Bryan signing. First of all, I'm very, very proud of where I graduated from. I got three degrees from there. My associate's, my bachelor's and my master's degree. And one of the reasons that I'm so proud of RIT is because they were very accessible to me. It was a great place to be. I learned a lot. They encourage you to make mistakes and, you know, learn from those mistakes. And it was also a place where I could build my skills that I would effectively lead to a job. They also helped me learn what was available for me and what would work and what wouldn't, you know, when I go into the job, I need to figure out what accommodations are going to be right for me and which ones aren't.  

[Doug]: And a follow-up question to that is, and Chris, I I'd love for you to answer this follow-up question, which is how do you get the ADA to help with accessibility and tech modifications at work?  

[Chris]: So I mentioned working at three places, one being Gallaudet University, one being Wisconsin School for the Deaf, the third being Helen Keller National Center, all three of those organizations. Well, let me back up for a second. So Gallaudet is really designed to support deaf people. They do have some deafblind students as well. Wisconsin School for the Deaf is very similar. HKNC, is very deafblind oriented. All of those organizations are very, very aware of the ADA. They're also very knowledgeable about accessibility and accommodations. So for me, I've been lucky in that I really have never had to fight that hard to get any sort of accommodations. I've had to have discussions with supervisors and explain what I need and why I need those things. But it has never been a fight. I can tell you one story about that. Like one of my toughest experiences throughout my 24 years, I would say, this is one of the toughest. The problem did eventually get resolved, but I was a teacher at Wisconsin School for the Deaf. My vision had already started to decrease at that time. I would say I could probably see two or three students at a time. I could not see the entire classroom unless I turned my head and I had one particular class and that class was for a lot of students that were pretty troubled, troubled youth. They had various challenges. Some of them had emotional challenges. Some of them had behavioral challenges. Many of them had anger management issues. And I remember one student got very angry during class and lost his temper. So I was trying to calm the student down. And while I was trying to calm the student down, another student left the classroom and I didn't see them do it. And they left the school and they went off campus. I had no idea because I couldn't see them out of my peripheral vision. My principal came into the room and he knew that, you know, he knew that I was dealing with this one particular student, but tapped me on the shoulder and said, where's Johnny? Obviously that's not the student's name, but I looked and went, oh my gosh, I don't know. I don't know. I was busy with this other student and I didn't see anything and one of the other students went, oh, he left, he went downtown. He went to smoke. So I, you know, didn't really feel great about myself after that happened. My principal was very good. You know, I knew that he knew that I had Usher syndrome. I knew that I had Usher syndrome and the principal said to me, you know, what do you need in order to make sure that doesn't happen again? So it took some thinking on my part. And I said, you know what? I need a second person in the classroom. Someone that could watch the entire room and let me know if there's, chaos in one corner, or if someone tries to leave the room, if there were having a second person there, that student wouldn't have been able to leave without anybody knowing. Now there are several deafblind employees that work under me at HKNC. And I have learned from the principal to ask them, what do you need in order to make yourself more successful? What do you need in order to make it easier to do your job? And that principal was hearing-sighted, but was sensitive and respectful enough to understand what my hearing and vision were like. You know, some of my employees needed additional equipment, some need different kinds of support as far as another employee's assistance. But you kind of have to take these challenges as they come one by one. As far as the ADA, again, it's been very rare that I've needed to sort of threaten anybody with the ADA. I've worked in places like I said that are very, very aware of the laws, but I know other deafblind people have not had that experience. And sometimes they do have to use the ADA. If that does happen, it's important to have the specific verbiage there to show HR wherever it is that you're working to say that these things are you're entitled to.  

[Doug]: I'm going to take just a quick pause for an interpreter switch. Alright. So continuing here, yeah, Chris, you touched on a lot of great things in there. Certainly something that you touched on in there that comes up time and time again on this platform is individuals in the disability community and really any marginalized community, but we're talking about the disability community, acquiring that skill of speaking up and making known what certain needs are in a situation. And also on the other side, educating people to ask about that, right? Because you're someone who is deafblind yourself, so you have the knowledge and wherewithal to ask your employees what they need. Certainly there are employers who aren't deafblind who aren't disabled who might now think of the simple thing of asking their employees with disabilities what if any considerations there might be for them to be aware of? So that's just kind of brings me into my next question here. It's for Bryan. And I'm wondering, Bryan, do you have any, you know, personal stories that come to mind around that topic of maybe a time where you experienced a certain barrier or where you were in a place where someone, where an employer or an entity wasn't providing you some sort of accessibility that you had to speak up about? Are there any kind of anecdotes that come to mind around that topic for you?  

[Bryan]: This is Bryan speaking. I've had a ton of experiences even after I was in graduate school, and other areas, but one thing that really tends to happen is, you know, I, well, first of all, I really kind of take a more proactive approach. And I speak with my employer first about what my accommodations are and what I need. I am a workaholic that is just my nature. But, you know, sometimes, I noticed that sometimes on the job I get little stressed out or I'm not realizing what my issues are. So, you know, that's when I have to kind of take a step back and really take a look at, you know, why am I getting kind of stressed out? Is it something that is, I just need a little bit of an accommodation for, and that's where I have to kind of reevaluate and maybe speak with an employer about what my needs are. I think the biggest thing, my biggest takeaway is you really have to be careful of your attitude and it's all about your approach. It should be more of a team effort when approaching an organization or an employer. You really have to be willing to compromise and work with them and have a positive attitude and really be able to work with them. Don't be nervous when asking for your accommodations either again, if you're experiencing challenges on the job, you need to be able to speak up and ask for that accommodation to make it a little bit more special and accessible, even in, you know, the college setting, you know, your ultimate goal is to get that degree. So you need to make sure that, you know, what's working for you and not to be stressed out over the little things, ask for what you need. If it's not suiting your needs, sometimes you have to kind of figure out what you can do. For example, you know, in my profession right now, there's a lot of travel. I can't drive. I don't have a driver's license. So now I have to think about other other ways, you know, for individuals that maybe part of their job is to actually answer phones. We have video phones. So, you know, we have to really kind of identify what we essentially need and come up with alternative solutions and being able to openly talk to the people about these. That's the only way to really be able to succeed. I was able to graduate from my program, find a good job, but you really have to focus in on, you know, essentially, what it is that you need. And also, you know, kind of come up with alternative solutions, you know, I can't drive, you know, so I have to come up with other ways to go about that. And again, in having those discussions with your employer, you have to have a positive attitude, be flexible. And also, you know, when you're applying for your job, you know, or sending in your resume, be up front about that, tell them what you, what you need. And open up that discussion. You know, don't be afraid that you're gonna automatically be turned down from that position, you know, apply for the job, go through the, the process. You know, unfortunately, sometimes, you know, you are actually, or we did that because you're labeled, you identify as deafblind, but you have to really explain to them your skills, show them that you are qualified for that, as well as educating them. A lot of times that you have these experiences where the employer doesn't understand what deafblind means, and you need to be able to clearly articulate it and also how you can successfully do the job.  

[Doug]: That makes me think of, you know, Chris and Bryan, you know, you obviously both work for the Helen Keller National Center, an organization that's not just aware of, you know, whatever accessibility needs you might have, but in an organization that advocates for that. What about all those people with disabilities that don't work for an organization that has anything to do with the disability community? You know, I guess Chris, my question around that specifically first to you is, you know, what would you say to an employer at any organization that's not affiliated with the disability community, who has reservations about hiring someone with disabilities? What would you say to that potential employer?  

[Chris]: I believe in and positive feedback and with that positive approach. With diversity and inclusion I think that's really great for an organization. Each individual with a disability has unique gifts and skills, and now you have to figure out how to capitalize on those unique skills. And once you do, they will benefit your company. One common comment that I often hear, and it's about a specific disability, autism, is there specific or unique quality is that they really kind of hone in on a task and they may excel within whatever it is that, you know, really that they kind of hone in on, but they do an amazing job. So you really have to take a look at the person as a whole, what are their skills, what are their unique qualities, and where are the areas that they really excel in. Now, taking a look at an individual who is deafblind, we tend to really hone in on the fact that a lot of deafblind employees are loyal employees. Their tendencies are once they are hired, they are committed 100% to their job and they will stay with that employer for a very long time. There's not a lot of turnover with deafblind employees. So for an employer, you know, we really kind of explained to them that you're not going to have a lot of turnover. Their dedication is they put in a 100% of themselves. They fully invest themselves into the organization and the company, and they love to work. So we kind of take a look at those skills to try to allow or convince employers, to give them a chance. They tend to, also statistics show that they are more productive within the workplace as well. There are some tax benefits for employers that hire individuals with disabilities, there's actually tax benefits and other incentives. So we do educate employers on the different incentives and benefits. You have different write-offs and whatnot. So we do educate employers on that. Also, any accommodations that are provided are also considered a tax write off. So there's a lot of perks to hiring individuals with a disability. So there's all those pros, as well as the diversity within the workplace, the loyalty of your employee, the higher productivity of the work that they provide. And this is feedback that we've actually received from employers over the years. And oftentimes some of their feedback is they never realize how great or incredible a job the deafblind employee will provide once hired. So, and then also realizing all the benefits of that employee as well. So that's that.  

[Doug]: Yeah. You know, what's so great in what you said there is so often the narrative around inclusion is some sort of group that's on the inside, letting in people who are on the outside. And then what becomes problematic with that, and the ways in it's becoming a little bit outdated is that that also means that when you look at it through that way, you're looking through a lens of there's people on the inside who are better and more capable and there's people on the outside who we're just kind of letting into our world because, you know we're being all good and nice and allowing for that. What you've so aptly just pointed out is a very different narrative. You know, one in which it's not just about creating accommodations and accessibility to allow those with disabilities to work in the workplace or have accommodations anywhere else. In fact, they're actually not only amazing employees, but oftentimes better employees in cases than people without disabilities. So when you start to highlight that, you start to have a very different understanding of what's going on here. So now it's not just about creating accessibility because, you know, okay, the ADA is twisting our arm or, okay, I guess it's the right thing to do. It's also about doing it because your company is going to benefit from that. You're going to be a better organization in many different ways, in the ways that you aptly pointed out.  And, you know, Bryan, I'm wondering if you have anything to add to that topic, the topic of the fact that accessibility for those with disabilities isn't just about doing it because if the ADA is twisting the arm of an employer, but because employees with disabilities offer great value to whatever organization they're working with. Do you have anything else to add to that part of the topic?

[Bryan]: Yes, I do. Really, Chris and I, great minds think alike. So I'm really kind of on the same thought processes him. It is, you know, personally, I have seen within organizations who have hired individuals with disabilities, we ask them for their perspective. And often we do say that they do come back with the positive feedback of how productive they are and how amazed they are. And often, once individuals hire one individual with a disability, they tend to hire more because they realize what great employees they are. However, sometimes you have to really kind of think outside of the box and come up with really creative ideas and ways for the individuals to be able to perform the same and perform the duties of the job. And I think it improves essentially the health of that agency as well as the people that surround them and other staff that are on the job. I feel like it inspires everybody.

[Doug]: So, another question we have from Debra. Hi, Debra. Nice to see you again. Debra asks, and I guess Chris, I'll start with you on this question. Debra asks, when do you let the employer know that you need accommodations? When you send the resume and cover letter or during the first interview, or at some other point? What would you say to that, Chris?  

[Chris]: This is Chris speaking. That's a great question, Deborah. So the concept of disclosure is a very hot topic right now within the employment field for individuals with disabilities. And it's an individual preference. Some individuals are very open and forthcoming with that information and can also essentially have that same effect as just essentially checking the box. And what do I mean by checking the box? It's essentially, you know, on an application, they'll say, Oh, do you have a criminal background? And they'll have those essentially where you check these boxes off, in the like disclosure. Some employers, you know, once they see that, you know, that box checked, they automatically get rid of your application. So some individuals choose to not say anything until they have the interview. Some individuals choose to disclose that information during an interview process. And during the interview process, you can not actually discriminate or dismiss an individual with a disability at that time. Some individuals that are deaf or deafblind don't always disclose it right away. When I was a teacher in the Wisconsin School for the Deaf, as well as Gallaudet University it was a little bit different. I did graduate with two master's degree from Gallaudet University and, you know, sometimes, you know, people like, for example, like my degrees are what they are. And I may not always disclose all that information about where I went to school because that automatically identifies me. So sometimes some people choose to not always essentially add in personal information about where you went to school to automatically essentially out yourself. Some people feel that that could be, you know, a barrier, if you do identify that right away in getting that job. And they will hold that information until the interview process. Again, if you do experience discrimination at that time that you feel that you did not get the job due to your disability, then you have, you can file a suit against them for a case of discrimination. So it is kind of more of an individual preference of how they want to navigate those waters. And again, we do always have that discussion of disclosure with our consumers and working in training with them, for the interview process. Again, it's a personal preference as to when they choose to disclose it.

[Doug]: Question for Bryan. You know, we now know from this conversation that there are certainly a lot of employers out there who don't understand the capabilities of many people in the disability community and how oftentimes they can be better employees than people without disabilities for the reasons we went into. So how do we bridge that gap and understanding? What can people who are watching right now do to help fix the problem of that lack of awareness and lack of understanding?

[Bryan]: That's a great question. I think the most important thing that we can do is educate. Share your resources, share your knowledge with employers, organizations, maybe new disabilities, that you have encountered or learned about, you know, talk about them, spread that awareness. Again, like myself, I do have my personal responsibility of sharing my information and sharing, you know, information about the disability because that education is power. That's what really creates change. We have a lot of resources where we provide webinars and trainings, and also just even learning about new technology right now is a huge resource that, you know, creates that level of accessibility and equality. So having that open discussion, talk about it, share your knowledge, create an environment where individuals want to learn. Again, this isn't something that you just learned about one time and you take one training. This is a life long learning experience. Talk to one another, learn, ask questions. Don't be scared about asking questions. You don't know what you don't know. So you have to ask individuals about their disability and understand it to be able to really create change.  

[Doug]: You know, Chris, similar question to you, but I'm wondering, you know, for people who are watching right now, who now may be understand, maybe already knew about this, or maybe learning about a lot of what we're talking about for the first time, what can they do to help increase employment for the disability community and awareness around the diverse capabilities of the disability community?

[Chris]: Another great question. Again, many individuals with disabilities do seek employment with the help of VOC rehab and VR agencies. VR is a great resource to be able to connect with. They have a lot of business relations. They have a business relationship as specialists get in contact with their business, relations specialists and that individual can talk about different, could guide to different resources and a lot of the how to. So if you have a company, you are an employer you can get in contact with VR and their business relations specialist. There's also local disability organizations as well as other affiliates. So there are some vocational based services, socially based services and organization, but again, there are resources they are placed to really get in contact with to find out more information for, you know, other organizations and agencies that are available. So there's always those types of organizations close to where you work. Right now, everything has moved to an online platform. And again, you can do just general research on online, go to, um, www.ada.gov. They have a lot of information that is posted on their website as well, and other resources that is available there, and that is provided by our government. So again, that's www.ada.gov. So maybe your initial response would be like, oh, I don't know. I don't know what to, I don't know where to start. That's okay. There's a lot of information out there. You just have to look. Get in contact with one community agency. They are going to be more than happy to help you. If you are looking on how to be able to provide with appropriate accommodations, reach out to them, it's okay. Everybody's willing to help again. Remember that hiring somebody with a disability will benefit your organization.

[Doug]: So question for Bryan, certainly we're talking about ways in which we can improve upon disability employment as a whole by, you know, raising more awareness around the capabilities, correcting people's false assumptions around that. I want you in your imagination to take a moment to walk forward in some future world where a lot of this has been bettered. What does that look like to you? How would you describe that? What is it, what is like progress like really significant look like to you?

[Bryan]: Hmm. Well, right now in 2020, we have a lot to do we do since the pandemic. I think that really was something where everybody had to kind of take a step back and reevaluate and from the pandemic and from this experience, I think the biggest takeaway is that I really hope that we can grow from here. It's something I feel, I really hope that everybody just continues learning, start networking, open up, talk to people, ask questions, look at different agencies, such as VR. And I think everybody needs to set their own goals of what they want to do and go ahead and move forward. And hopefully we can, everybody can essentially set goals moving forward to make improvements.  

[Doug]: So with our final minute here, Chris, I'd love for you to bring us home in this episode. I guess, completely open platform for you with the last minute here. However, you'd like to close this discussion, please, the microphone is yours.

[Chris]: Really. The final comment that I essentially want to make to the world is that individuals with disabilities are a valued member of the community. They are productive members of the community, and they can contribute to society. But that's, if you allow us to. Again, the key is you have to allow us to take down those barriers. People with disabilities can, they can do. It's just overcoming those barriers and they can be effective members of society. Thank you.

[Doug]: Well, I can't think of a better message to wrap up this episode. I know there's so much more we could discuss, but I'm really glad to engage in the conversation we did today. A huge thank you to Chris and Bryan for joining us today. Really, really, really insightful and great commentary you had on this subject. And thank you for all of you who tuned in. As always, we'll be back next week with another episode of Feeling Through Live, same time, same place. And I also want to remind you all this Sunday is an amazing opportunity to be a part of The Feeling Through Experience, which is taking place at 12:00 PM Pacific time, 3:00 PM, Eastern time. If you don't know what that is, it's our three part event that includes Feeling Through, the first film to star a deafblind actor, Robert Taragno. The second part is a making of documentary that follows the process of making the film. And you'll see Chris makes a couple of appearances in that documentary. And lastly, it includes a panel discussion and Q&A. On Sunday, we'll also be talking, we'll not just be talking about the film, but be continuing our conversation around disability employment being that this month is National Disability Employment Awareness Month. So what better way to use that time? So if you haven't already sign up at feelingthrough.com/register for your free ticket, we can't wait to see you there and certainly see you back here again next week for another episode of Feeling Through Live. Thank you. Have a great weekend and week ahead. Bye everyone. 

Feeling Through Live • Episode 27: From Prodigy to Pro Representing Blind Talent

[Doug]: Welcome to episode 27 of Feeling Through Live. I have the distinct pleasure to be joined today by Danny Kean. He is an amazing musician who will be giving us a special live performance later in today's episode. But before we get there, we've got plenty to talk about. So, Danny, let's, let's just hop right into things, you know, I'm gonna throw you a fast ball to start off, but you know, one of the ways in which you were introduced to me, and this is not a word that people throw around lightly, but you are obviously now a very successful adult musician, but you started as a child prodigy. I, you know, again, I know that's not, maybe not, we don't necessarily like to call ourselves prodigies, but I know everyone else has called you a prodigy. Can you kind of walk me through the start of your relationship with music and how early that started in your life?  

[Danny]: That's an easy one and a fun one. And I could talk about that all day. I played since I was two, my mom loved this family doctor, one of those old style family doctors, where they smoke in the room with you. This is the meaty stuff right here. And he, you know, she brought home a blind kid and brought him to the doctor and took a look at my hands and said that those are piano hand like these big square hands. And he goes, there are a lot of great blind piano players. So, my father's uncle was a very well known Catholic priest. He brought Martin Luther King to New York in the sixties, and it's a big deal in Brooklyn. And he bought me my first keyboard when I was little. And that's what I started playing when I was two years old and I could play anything I heard without too much of a problem. I was not a great student, at first, and then a couple of things happened when I was probably about 11. My sister started to get really big into music and we were really, really tight, you know, living next door rooms and going in and out of each other's places all the time. She would bring records home and we would play to them. We both learned them and she couldn't believe how quick I could figure things out. And that's where I started to really get into it. And it became very obvious that this was something I was meant to do to some degree. I didn't know how, or which way, and that would lead me down a lot of paths, but that's where it really started to take off from me. And that's where people started to notice, because when you start playing with records, you have to learn really fast, not only what you're hearing, but how to fit into it. So that made me, uh, a guy that everybody wanted to be in a band width, and that included people of all ages and really brought me out of myself in a big way. And so I was really thankful for that.  

[Doug]: You know, I never, I know one thing I know is that I don't have piano hands because. Mine are like not very dextrous. And I can, a couple of times I've ever sat in front of a piano trying to reach the keys that I imagine you're supposed to be able to reach are not easy for me. So, I think, I definitely don't think I share the piano hands with you there, but you were, so how old were you when you, when you first like sat down and started playing?  

[Danny]: Probably about two or three. There are pictures of me playing before I could walk.  

[Doug]: Wow.  

[Danny]: And, you know, it was just something that you take for granted because you're interested in everything. I liked science and math, and I found out that math skills are very tied to music later on that it's not a coincidence that that all goes hand in hand. To me, music is taught wrong. I think that you got to get kids interested in what they hear first, before what they play. I didn't get a lot of that growing up. I, you know, they teach you these classical pieces because they are very good for your hands to learn, how to coordinate, but they're not particularly interesting for a kid and you're not going to see the beauty in them until you really start hearing stuff that you want to play for me, that's just how it works. And maybe, you know, they do work together because when it's time to play the stuff I wanted to hear and want to be able to play, I already had some of the knowledge that you need to do that. So maybe it's not wrong, to me, if I had a kid in my life and I thought that really had an aptitude for music, I would try to find out what they're interested in first. That's all.  

[Doug]: Yeah, no, that definitely makes sense. So did you get started in the traditional way then with like classical songs? Is that what you first started with?  

[Danny]: Yeah. Yeah. I learned all of the Bach minuet, the inventions and all those things for your hands, and they're very important. But they're not the only way to learn and I was better at learning other things. I had perfect pitch. So if I hear it, I know exactly what the notes are. I just got to figure out how to make my hands do it.  

[Doug]: You know, when we're talking about, when I think of like a prodigy, you know, my mind goes to, like, I'm thinking of when I've seen depictions of like Mozart as this like tiny, like tiny child playing these like intricate songs in front of the King is kind of like my association. But like when you're, you know, when you're someone who has perfect pitch and you start playing at two years old, is that something where like, how long is it before you're like playing like Bach or Mozart? Like what, how quickly does that happen when you have that kind of gift?  

[Danny]: I was probably in first or second grade, by the time I learned those. I certainly wasn't, as prodigious a talent as those people you're mentioning at those ages because classical music was in at that time. And what people wanted to hear was super intricate and the peer pressure to learn. It had to be different when I was a kid, you know, R.E.M. And Nirvana and Guns and Roses and all these things from the R&B side. You had Jodeci, and you had these things that you could learn and that's what I started to grab onto. And that would bring me to all sorts of things, including a love of radio. And that's how I got really deep into all kinds of music. So I wasn't a great student and I think that's, cause I wasn't exposed to things that really interested me. At those ages I could play, it just didn't interest me that much. It just didn't mean more when I would hear something and my brothers and sisters would flip out that I could do that. And, and the attention of your friends and teachers and school mates and all that stuff, those things are really important when you're little and music definitely got me in that way. And, after I started learning things that are interested in me more, it wasn't so much practice. It was fun. And I look up and I was in junior high and I would sit down at the piano and I look up and it was hours later and I'm still digging on this thing I'm figuring out. And, and that's really how I think music has to be taught, but I could be completely wrong.  

[Doug]: Well, we have our first question from Barbara. She says that she really loves the lilt and rhythm of your speech. And she's just wondering where you're from.  

[Danny]: I get that a lot. I am from Long Island, New York. And I was for a long time as a teenager and early twenties, I was groomed to be a Baptist preacher. And I played for church and, backed up a lot of the greatest gospel talents in the world at those years, mostly as a guitarist actually. And, so that's really where my speech took an interesting turn. I always had a bit of that, whatever that is. And it was always sort of there, but it got more severe and I haven't lost it yet. So I get that a lot.  

[Doug]: So you said that that was something early on for you. Was that, when was that something that you like transitioned out of? I imagine you're positing in a way where that's not the case anymore, but like for what period of time was that, um, your musicical life?  

[Danny]: Probably 19 or 21 I started doing that and probably about 22 or 23 when I stopped. And, yeah, that was an interesting period and I learned a lot and, I take it with me wherever I go, some of the skills I learned.  

[Doug]: So I want to walk back a little bit here. You know, we obviously have established your prodigious skills from a very young age here, but, you know, I want to talk about, you know, obviously there's a long lineage of really amazingly talented blind musicians and you're someone who was born blind. And obviously that's only a part of the story there, but I'm curious kind of what your journey was and how, like how your blindness intersected with your musical life and also just kind of your life as a child growing up. So, I mean kind of going back to kind of just, can you walk us through like the beginning of that and your kind of like earliest memories around that?  

[Danny]: Well, as far as being a kid goes, I didn't really know why I was different. Someone had tell me, and that was a really traumatic thing. But I don't think there was a playbook. People who are totally blind, like I am, are so few and far between in the world that there really isn't enough of a community. For my parents, I mean, they talk to other parents of blind kids and this is the best they could come up with and they did the best they could with what they had and they were incredible. But there really wasn't a playbook for how to tell someone what their deal is and what makes them different than somebody else. And that was a traumatic thing. And there's nothing, you know, hindsight is always much clearer, and there were things that I'd love for, you know, to be different about that. But that's one of my earliest memories, just finding that out.  

[Doug]: You know, what's interesting, sorry to cut you off there. It's interesting, you know, you mentioned, you know, I think something that comes up a lot on this platform, certainly something that I've learned a lot about over the last few years, is, you know, I'll first use the example of the deafblind community, but, you know, I think a lot of people who say, know nothing about the deafblind community assume that everyone who is deafblind is completely blind and completely deaf in that there's no, they don't understand kind of the spectrum of the manifestation of that. Similar to blindness, you know, you're describing the difference between someone who's born blind versus someone who maybe loses their vision over time, or maybe has partial vision. And how that kind of, there there's different, I guess you could say kind of like subsets within the overarching category of blindness, but you were just saying that there aren't a lot of people who are born completely blind and that kind of makes you feel like you're in a different category than other people in the community. Is that a fair thing to say?  

[Danny]: Well, definitely. You know, when you're a kid, you dream of being all sorts of things, firemen and police officer, an army man, and an oceanographer and all those things that kids go through. And there comes a moment when you realize that that's not, what's going to be your destiny and that's not open to you, and that's hard on a kid. And you can't talk to your parents about that because they'll be bummed and they don't have any experience with that. So all you're doing is making their life darker. So you keep that to yourself. And I don't really have, you know, I knew blind kids, but they were different than I was. They were much more scholastic than I was. I was a wild kid. I was a lot of fun and a big personality. And so I didn't see myself in them. So not only did I not hang with them, probably as much as I should have or could have, but I've definitely didn't talk to them about the bigger things. Because I didn't see myself in them as peers. I felt like they were both ahead of me and behind me in certain ways and whether that's right or wrong, that's how I felt. And so I was very much all alone with these things, but I knew that there were way more sighted people than there were blind people like myself and that if I wanted to live in their world, I had to hang out with them. And I had to figure out how to get along with them and how they could get along with me. And my parents made sure that I had those experiences that I went to regular school. I was the first kid in New York state to go to public schools. There was a huge court case about it and that wasn't a fun way to start school, but these things needed to happen. And because these things happen to my generation, it won't happen to other people. And it wasn't easy. I went through a lot of discrimination in school by teachers, people that just, you know, when they went to college, you know, whatever community college they went to, these people did not have teaching the blind on their list of things they wanted to do. And it was really hard to deal with that. But I had a wicked sense of humor and as much as they embarrassed me and treated me badly, I could embarrass them and treat them badly. And I had the upper hand cause I was a kid and a kid can embarrass somebody way better than an adult. And it was tough. It was a really tough existence, but my home life made up for it. I had great friends, great family, my sister and I were super tight and it gave me access to a lot more people than things that I would have in a different situation. And it made up for how rough, a lot of the situations I was in had to be.  

[Doug]: You know, there's so much in there that you were, that you just shared, but I'm just curious, you were talking about being the first in Long Island in a court case. Can you just expound upon that a little bit? Because I mean, what I'm gathering from that is that you're saying you were the first kid who was blind to go to a public school in Long Island?  

[Danny]: New York. New York state had never had a blind person in public school prior to 1989. And I was the first and there were a lot of reasons about that. Teachers had objections to it because they felt it would be distraction and inclusion was the new word of the time. And it's still a word that gets thrown around a lot, but that's what it meant, the opposite of exclusion. And it was something I had to go through so that other people didn't.  

[Doug]: So, you know, obviously in certain ways, you know, I'm sure a lot has changed since that time. And in other ways, I'm sure there's a lot of kids still dealing with a lot of the same things, but I can only imagine being quite literally the first in New York state comes with its own particular challenges. You talked about it being not just challenging with the kids, but, but also the teachers, but maybe can you go into a little bit more about, you know, you talked about early on not knowing that, you know, not really having this awareness that you were like blind in the sense of different from other people until a certain point. Can you talk about how that understanding of yourself was molded particularly, you know, among your classmates and what that experience was like as a child?  

[Danny]: It really didn't present itself as much of a thing. Kids are pretty amazing. They have to learn very, very well what different is. They know you're different, but they're different too. And they're so busy worried about themselves that they're not really casting dispersions on each other. That's why it really isn't a thing until someone tells you it's a thing or until something comes along, that makes it a thing. And what first, uh, made it a big thing in my experience was sports. I was a very popular kid in elementary school and around the same time the music really grabbed a hold of me, sports were grabbing a hold of a lot of guys and girls, and that became the new hierarchy, who was good in sports. And then there were the music guys and we were nuts and I became one of the guys and that's where it really became being blind was different in a way that separated me from everybody else. Other than that, people were very good to me. A lot of people, you know, took being my friend as something of a challenge until they found out that I was fine. And then it wasn't so much a challenge as, you know, look at the neat guy we brought into our thing. So kids were amazing. They really were looking back. I didn't really get made fun of a lot, really ever by kids. Once sports became a thing and you know, all that stuff really, you know, takes whole in junior high and high school, I wasn't so much made fun of at all. It was just, you know, I was acknowledged for other things, but not as much as other people were and that's part of life. And that makes you focus on those things you're strong at.  

[Doug]: We have a question from Hillary who's watching and she asks, being the first blind student in your school system, did you have challenges accessing materials and did you get everything you needed in braille or was it a battle? What was that like?  

[Danny]: It was a lot of work. I had an incredible itinerant teacher that I'm still very, very close with to this day from third grade all the way through senior high school. And she made sure that she got everything that couldn't be in braille, like textbooks and stuff like that. Those things of course could be in braille, but she got, you know, any assignments or worksheets she would braille those out so I could read them. And, so, the answer is yes, I got what I, both through state services and through this itinerant teacher who really made sure that I did well and wouldn't let me slide. And, a lot of people would just, so it wasn't their problem and she never let me slide on anything.  

[Doug]: You know what I find an interesting, it makes sense now in hearing it from you, but I find it just interesting that, you know, the way in which you were talking about how kind of kids are kind of dealing with their own stuff at that time that they were, they were less of the problem than maybe some of the teachers. I guess like that that's not where my mind would go immediately, but the way in which you explained, it actually makes a lot of sense. And I've certainly heard some other parents with kids with disabilities who've mentioned similar things. So now that's kind of coming up for me as well, but I'm curious if you kind of, you're talking about just so back to the music here, you were talking about how, you know, initially you have this gift right away, but you're not really that serious about it. You're not really working at that much. And then at a certain point you really, you know, fell into it and really had a passion for it. Can you tell us a little bit about that transition from, you know, this kid who's, you know, sat in front of a piano at two, had perfect pitch, picked it up really quickly, but wasn't necessarily that inspired to work that hard at it to a kid who, you know, really becomes, it starts to become like the main thing in your life?  

[Danny]: Well, yeah, that's, that was a magic time. For me, I didn't really have ambitions to be anything because like I said, there becomes a time where you realize when you're disabled, that not everything is open to you. There hasn't been a disabled president, police, chief, all these things that, and I'm not saying that these things couldn't happen, but they're probably not that likely for a kid of my generation. And I was smart enough to realize that. And I think that, I realized that this is something I really cared about, and I didn't think there was any, you don't know when you're 11 or 12, why something means so much to you. It just does. And learning these things really meant something to me and it felt good. And I started to really get into the story of what this was and forget it. When radio became a thing in my life, there is so much to this day, there's so much great radio out there for free. You don't have to go to a store or buy anything because the kid has no money. If you knew where to tune in and knew how to mess with an antenna - and boy, did I become good at that - you could hear the most incredible music from all over the world at night. I mean, I used to get in trouble for that, but that was a big thing for me, was radio and hearing this music and how it all connected and how it all, the most modern thing you heard you could, what if you really wanted to, you could trace it back to the beginning of recorded music and then try to figure out where that came from before that, and it became this big, a mystery that I wanted to solve. And I still feel like that to this day. Like I get crazy talking about records and artists, and it's really a passion that has brought me through some really rough things that would keep anybody away from it had they experienced the love and the passion always brings me back.  

[Doug]: We mentioned this right off the top, but you know, now you're talking about when these influences that really started to come in for you and really finding that passion, you know, certainly there's quite the long lineage of blind musicians, you know, dating way back. And certainly throughout time, I'm wondering how much, how much those musicians were an influence on you, how important it was to know that there were blind musicians that were, you know, considered right up there as the greats along everyone else. And, also just who were other influences of yours, whether they obviously be blind or sighted or, you know, what were other musical influences?  

[Danny]: That's a great question. I didn't think about it until later, but so many blind musicians were influences of mine and I didn't, it didn't dawn on me how serious that was until I started to work as a professional musician. As a teenager, the expectation of greatness that people put on you is so heavy that you really work hard to live up to that. Now I'm still trying to move up too, so of course the Stevie Wonder and Ray Charles, there's a great pianist named Marcus Roberts that's blind. He's probably around today. He's a great teacher, mostly. George Shearing is a great blind pianist. Jose Feliciano, great, you know, flamenco guitarist, and singer. There are so many, forget it in the blues world. There was an incredible amount of, of talented folks. I could talk a month of Sundays about that. But a lot of my early influences were guitarists, just because that was a big thing around here. And once I figured out there was a pitch wheel, these wheels on a keyboard and you could, you know, yeah, you do country on it, all these kind of moves like that. I, that really drew me in it and I didn't get more traditional. Like I was really good at those things, a jazz guy that was really into that was Chick Corea. I was really into that style. It wasn't till you start, I had to start working that I got more traditional in my playing and I'm really learned what this instrument and other instruments meant. I play a lot of instruments, but you know, it all leads back to the piano and it always starts there and it always ends there.  

[Doug]: I'm going to just take a quick pause here. We're gonna do an interpreter switch. And all right. We're all set there. So it's hard not to feel that when you start, you know, I love, I love jazz and I love, you know, like, you know, when you're, when you were just showing your examples there, it's hard to not like, you know, feel that like, and really, really vibe out to that for sure. So I can definitely relate to that. So, you know, so you've kind of painted this picture, just kind of walking through the chronology here. You know, if again, now we're at this space where you've really kind of like found your passion for music and you're really kind of more invested in it once you really kind of find your place in it. What can you kind of walk us through that and to kind of a little bit more to like where you are now is, you know, again, going from this child, like child musician to someone who's does it professionally, day in and day out now.  

[Danny]: Oh, that took a lot of work. Uh, it takes a lifetime of dedication. It's one of those, even though I'm not a great formal student, I work harder than, uh, I don't, you know, I guess maybe doctors, you know, put crazy work into their study throughout their life. But most people don't, most people, you know, you can go to college, so they give people a piece of paper, so they could do something. And, you know, they do that for 40 hours. This is a thing that you wake up thinking about how to do it better and how to do it different and how to put yourself into it. And you go to sleep, trying to do that. And there are points in between, but that's always on my mind. And so as a kid, you know, people tell you that you need something to fall back on and that just made me want to do it more. And you know, you tell me I can't do something now I have to do it. And, so there really was such a social thing in the music, and once people find out you can do something valuable to them that is hard to find, you will find the right friends and the right situations for you. And I continue to find those. And it really has made a way for me to travel. And, so that it really started as a teenager just going to things and meeting people and introducing myself and having cool people, introduce me to cool people and learning from them and learning what to do and what not to do. And it's a constant study, but I really cared about it so much. I want it to be a part of it so much that it was fun in a way that most people would find difficult. I found it really fun. And, my advice to anybody is say as long as you're not hurting yourself or somebody else or say a lot of yes, when you're young, if someone asks you, if he knows something, say yes, and then learn it, if you don't know it already, because the opportunities that yes creates for you are unbelievable and you might even surprise yourself. I know I always surprise myself by saying yes to how much I can learn and how much I can expand what I know and what I do. I hope that answers the question.  

[Doug]: No, absolutely. And that's such a great message too. You know, I think of, I think of this, you know, in musicians and athletes, you can be, you can be born with great talent, but if you don't, if you don't say yes to things, if you don't lean into that, that talent can only take you so far. Right. So like, it needs to be a marriage between your, in your case, like really deep, you know, God given talent, but combined with, I'm sure it didn't really take off for you until you started to say yes, until you started to lean into it in a way that actually it's the combination of those two things that really creates you as an artist I would imagine.  

[Danny]: Absolutely. And I think that as much as I know, people without as much, you know, given aptitude for it, I think that having it either could make you lazy and think that you could just lean back on it and you're probably right to some degree, but there will be the next person that has it and worked with it. So in other words, I feel like I'm always trying to catch up to how strong at this I was supposed to be, and I never live up to it. And I don't, I don't know if I ever will, because every time I think I know what I want level-wise I maybe get past that. And there's a new thing that comes along. So I think that it's a marriage. If you don't have the aptitude for something, keep doing it if you really love it, but be patient with yourself. If you have the opposite attitude for something you owe it to the universe. So whoever you believe in, God or genetics, however you want to look at it, you owe it to that thing to be the best you can be at it. And I really believe that, and it's pushed me through so many things that most people you probably would have stopped because of, and I keep going and I keep learning.  

[Doug]: We have a question from Rubi. She asks, can you copy, like, I guess she's saying, can you copy any music? Just like BB King. So I guess she's asking, can you just like hear something and just play it?  

[Danny]: Oh, yeah. You know, some things I have to put, my mind always can hear what it is. The trick is in memorizing it and then making my fingers do what I've memorized. So, you know, I can read music in braille, but if you want to show me like that, you need to give it to me a couple of weeks in advance because it's a very slow form of reading. It's divided into different hands. So you learn the left hand part and then to learn the right hand part and try to put them together. And that's great. And I'm glad that there's a way of notating that I'm just not great at it. So I prefer to hear it and then put it together and work through it like that. So yeah, I have a really strong skill for that and a good memory if I, especially, if I like something, if I like something it's done, I got it.  

[Doug]: Can you, you know, I, I've never thought about reading music in braille. You know, I don't know braille myself. I have like a basic understanding of say, like reading a book in braille, but can you, can you talk a little bit more, I mean, about what that's like, how it differs, maybe reading music and what it's like reading music in braille?  

[Danny]: Reading music in braille is very important if you want the exact timings and notations for stuff. And that can be very enlightening. It taught me much more about writing music than it did about reading it and playing it. But for, it's a very archaic way. If people didn't have recordings, they learned like this. And what they did was you write down the right hand part with certain signs that denote it from the left hand part, and then underneath it, the left hand part is written. And then you have to memorize those both cause you can't. I mean, even if you can learn and play while you're reading with the right hand, you're going to have to switch and that's hard. And then you're going to have to put them together, which means you can't be reading at the same time. So it's all, it all boils down to memorization anyway. So, it might not make me a great fit for music programs that exist in the world, but for my money, I get it done a lot quicker just by hearing it and having the...music is funny. One of the things that's amazing about music is that it's very predictable. There's a mathematical code to why things work. And you can guess if you know your music well enough, your theory and why things work and where they go. You could show me something I've never heard and I could play along with it and guess where it's going next. And I'll probably be right. And so it makes you have confidence that you will figure it out. Because there's only so many ways it could go.  

[Doug]: It kinda sounds like, I mean, again, this is coming from someone in myself who is musically ignorant as far as, really I'm an appreciator, but not a musician myself, but it sounds like you're kind of, you're describing jazz kind of in its purest form in the sense of, and particularly like kind of the riffing element of like a live jazz piece where you have this kind of understanding of it in what you're describing is like in a mathematical sense as well. I'm sure also just a really intuitive sense. And is that what kind of like allows you to riff in a situation like that, that you're like hooked into the DNA of it in a way that you can kind of like know where it's going without having known it before?  

[Danny]: That's definitely the idea. There are certain kinds of jazz, especially that their goal is to not lead you where you think it goes, and then you have to do the math on that. And that can be, uh, feel a little more like homework, but I can do that if I have to. I'm not the greatest at it, but it's not foreign to me.  

[Doug]: So, you know, I think why don't we, why don't we get set up for your song here. You know, as we'd mentioned earlier, Danny is going to be playing live for us right now. So Danny, why don't you take a moment to get that set up for that? Let me know when you're ready and, for all of you who are watching right now, now would be a good time to share this stream with other people so they can join him for our special life performance here. I know I got a sneak peek and, you're certainly not going to want to miss it. Danny is a tremendous talent and we all know that during these times where live music is not something we're getting enough of, certainly to get any form of that is really important. So as we're getting set up here, feel free to share that stream. If you're on Facebook, just hit the share button. If you're watching on YouTube, feel free to copy and paste and send that link to anyone you think might enjoy. And, we're gonna get, we're gonna get into in just, just moments here. So Danny, why don't you let me know when you're set on your end and then we'll hop into it, but take your time.  

[Danny]: Right. Great. We should be ready.  

[Doug]: Cool. All right. So, um, why don't we, if you could just tilt the camera up just a little bit more there, because we're, yeah, that's, yeah. Maybe even just a touch more. Perfect. That's perfect. So, yeah, Danny, why don't you just, let us know what your playing and then just go right into it.  

[Danny]: This is a tune of mine that I wrote about all the things that I've missed out as a blind person, and yet how I can see people for who they are and care about them as strong as anybody else. And that's really what counts in this world. And, it's off of the first album I put out of my own and, it's called I See You. Not like the hospital room. sung I can't see the forest and I can't see the trees. I can't be no tourise, there's no sites for me to see. I can't even see my family growing up so fast, or look back on my memories from a not so distant past. I see you, you're all I want to see. I can't see the scaring, that has formed around my heart. So I have to say I'm sorry, cause sometimes I fall apart. I can't see my reflection, no. no. With your love and affection, there's no need for vanity. I see you. I see you. Because there's no other vision that matters to me. I see you.  

[Doug]: I'm applauding you right now, Danny. That was beautiful. Really beautiful. Thank you so much for sharing that today. We're really, really fortunate for you to lend your musical talents to all of us today. That was really beautiful. You know, you'd started to set up, tell us a little bit about that, but, you know, now that we've got a chance to experience and hear the lyrics, can you just tell us a little bit more about like where that song comes from for you and what it means to you?  

[Danny]: I think that, personally I've always felt, that I might appear inadequate to others. I think that, we are animals first and foremost, and although intelligent animals with smartphones and all that, we are capable of extreme judgments on one another and on ourselves. And I wrote that song because the only thing I've ever been good at as a human being is to make people feel good and to be a good friend. And most of being an entertainer is being a friend that someone hasn't made yet. That's why we get so invested in the lives of celebrities is because we feel like we know them and we see ourselves in them. And I wrote that song because I really care for people. And when I care for people, I feel like that's the only way I'm ever on equal footing with people. And that is the honest truth of where that comes from. And, I hope it means a lot to people because it, it means a lot to me every time I get to perform it. And it's a really special song.  

[Doug]: Well, you know, beautiful song and certainly, you know, your extrapolation of what it means to you, where it comes from makes it all the more beautiful and certainly something, you know, some of the themes that you were just talking about there is something that's certainly near and dear to us here at Feeling Through. You know, a lot of, kind of what Feeling Through and then subsequently Feeling Through Live, and this whole platform was born out of is really forming connections with others and from the deepest parts of our humanity, regardless of whatever differences we might have. And I think that's something that you're certainly communicating in that song and also just what music and art has the ability to do. So I think that's such a, you know, what you're sharing there is such an amazing example of that. And it's kind of like most fundamental and beautiful form there. So thank you for sharing that. Well, we still, we still have like about 10 minutes left here, so I'd love to touch on a few more things here. You know, I'm just curious, you know, certainly, this is a very unique time for everyone, but certainly musicians. You know, it's something where any sort of live performance is something that is not really easy to come by in this time. And certainly, you know, gathering together in any sort of crowd for a concert is something that who knows when we're going to be able to do that again safely. I'm just wondering, can you tell us a little bit more about as a musician and one who I understand, you know, plays live very often, what this time has been like for you during the pandemic?  

[Danny]: It's been a time of great reflection. I haven't really worked in the traditional sense in about six months and I was really looking forward to doing the things that were on my schedule and didn't happen. And we don't really know what kind of business we're going to come back to. Is remote concerts the wave of the future? Is that where we're going? Are there going to be places for us? Are people going to be scared to come back, even when you know, things have changed either through vaccines or therapeutics? I don't really know what's ahead. So what I'm doing is working on myself in a big way. I had some health difficulties a few years ago and the middle of those health difficulties I found out that I had been born with a birth defect where my tongue was kind of tied like with the little cord in the front of the mouth. And I got surgery to alleviate that, but I've had to learn how to talk and sing completely, absolutely different. And I've used that time to practice like a crazy person and really work on my thing and work on what it means to really love this thing and to commit to it in a different way, when you don't have a gig, some people would allow themselves to falter until there is. And I'm like, you know, what if I really want to come out of this better then let me put the time into it. So I've used it for good things for myself. And what I've been doing is Friday nights, I do a Facebook live show for free. A lot of people have, you know, had to use virtual tip jars and PayPal and all that stuff. And the universe has lined up so I don't have to do that for the time being. And so I don't. And so I take whatever I've been practicing that day. And I do it for people and people all over the world. A lot of well known musicians and people I've known my whole life and people I've never met and never will meet watch. And then Saturdays, I do a Twitter live. So, and people watch all over the world for that. And that's really a lot of fun. And that's been on a whole new skill set. I'm such a crowd...you wouldn't think a blind guy would care if there's people around or not. But the energy of live music is really funny, especially the kind of things that I do. I do about it, rhythm and blues and so rock stuff, and some jazz stuff, old soul music, and it's all about having fun with people. And I love to joke around and, and to learn how to do that without anybody around it has been really hard and a valuable skill that I think is gonna help me in recordings and live taping was and all these different things. So I don't believe there's ever anything that we learn that makes us worse at something, whatever we learn about our craft about ourselves. If we choose to use it for our betterment, we can learn something. We don't always know how, but it will come out later how it was valuable and purposeful for us to learn that. So I'm using this time to really get better at these things. That's a really figuring out what I want to do next, whatever that is.  

[Doug]: Yeah. You know, certainly can relate to you in the sense of, you know, a lot of what we do on this platform is, you know, sharing, you know, the film experience, The Feeling Through Experience that we do. And we were, we were having the great privilege to take that around the country and do it, you know, as these in-person, really diverse events that certainly we've had to pivot as well. And like you were talking about some of the silver lining of that is in doing it, you know, as a livestream, you get to connect with people around the world that you might not have gotten to connect with otherwise. So there is something really interesting about that. Certainly it's a time to like, learn new skills, like you said. And I'm wondering what, you know, as far as if people want to check out your regular shows that you do, can you tell people where they can find that?  

[Danny]: Well, my Facebook is DannyKean12 or Danny Kean and Friend's Band. Those are my Facebook pages. And it's on both of those. And my Twitter profile is at Danny Kean music and Kean is spelled K-E-A-N. That's a little different, but, if you Google me, all of these things will come up and my albums are available on all the streaming platforms and Amazon and all that stuff. And so, I'm easy to find hard to lose, and I hope you'll find me.  

[Doug]: Well I know I'll be tuning into some of those. And I hope everyone who's watching is. So with the final couple of minutes we have here. I'm just wondering, you know, we've gotten a chance to talk through a lot of stuff, but certainly there's, I'm sure an endless amount if we have more time, but is there anything kind of anything that we haven't talked about or any kind of like parting thoughts that you want to share? 

[Danny]: One thing I think it's important to realize for anybody that's going through something that makes you stand out, you know, a way that's different and, uh, uh, might make you the target of curiosity is that you represent something more than just yourself. When I pre pandemic, we go to the city and take trains and, and meet people. This was the most likely the first time they've met a blind person. Uh, and so how they feel about our experience meeting each other, represents so many more people. Uh, and I wanted it to be a really positive one and somewhat might say that that's not incumbent upon us, but it is because we are, uh, people who judge one another and we judge each other by the experiences that we have with one another. And so when people meet me, I try to make sure that they have a good representation of what blindness can mean and what being a person can mean and it's not the end of the world. And it can be the start of a different world. And I hope that I've done that. And I continue to learn how to do that and I think it's important for us to be kind to one another whether or not we understand each other. I think that these are times of great division and those tactics have been used throughout history to conquer great swaths of people at the time and we can choose not to be part of that by loving people with whom we don't have a lot in common. And when we do that we might find that we do have a lot in common. So I try to make my life about that. And if I can do it for somebody and you can do it for somebody we can change the world. And that's all we can do as human beings. We can decorate the small corners of our world in the best ways we can, and hope that the ripples from our good behaviors and deeds and treament of others can make it easier for the next person to feel more connected with them. And I hope that makes sense, and I hope I'm not talking crazy. But that's how I feel and something that's important to me.

[Doug]: I know I'll be tuning into some of those. And I hope everyone who's watching is. So with kind of the final couple of minutes we have here, I'm just wondering, you know, we've gotten a chance to talk through a lot of stuff, but certainly there's, I'm sure an endless amount if we have more time, but is there anything kind of anything that we haven't talked about or any kind of like parting thoughts that you want to share?  

[Danny]: One thing I think it's important to realize for anybody that's going through something that makes you stand out, you know, a way that's different and, might make you the target of curiosity is that you represent something more than just yourself. Pre-pandemic, we go to the city and take trains and, and meet people. This was the most likely the first time they've met a blind person. And so how they feel about our experience meeting each other, represents so many more people. And I wanted it to be a really positive one and somewhat might say that that's not incumbent upon us, but it is because we are people who judge one another and we judge each other by the experiences that we have with one another. And so when people meet me, I try to make sure that they have a good representation of what blindness can mean and what being a person  

[Doug]: are able to articulate that so, so poignantly and certainly a great way to wrap up this episode, a great sentiment. And so happy to be able to have you on today, and certainly hope that we can connect again in the future. And, you know, maybe you'll be able to come back on and play some more music for us at some point. We'd certainly love to have you.  

[Danny]: I would certainly love that. Thank you all so much for watching and thank you very much, Doug.  

[Doug]: Well, it was an absolute pleasure. And again, thank you all for tuning in. This has been another episode of Feeling Through Live. You can find this every Friday, same time, same place, and, until then have a great weekend and a great week ahead. Bye everyone. 

Feeling Through Live • Episode 26: White Cane Awareness Day

 [Doug]: Welcome to episode 26 of Feeling Through Live. I am joined here today by Monica Godfrey-Lehrer and Judy Wieber. And we have a great conversation ahead for you. So before we kind of hop into everything, why don't you to both introduce yourselves. Judy, do you want to, do you want to start?  

[Judy]: Sure. My name is Judy Wieber and I live here in Suffolk County, West Babylon. Um, I'm a mom and a student presently at Helen Keller Services for the Blind in Islandia.  

[Doug]: Excellent. And, Monica, why don't you introduce yourself as well.  

[Monica]: Hi everyone. Good afternoon. My name is Monica Godfrey-Lehrer. I work for Helen Keller National Center as a supervisor of three different departments, orientation and mobility, low vision and audiology. It's great to be here.  

[Doug]: Well, we're so happy to have you here, both. And, you know, let's just hop right into things. So the title for today's episode is White Cane Awareness Day. Also known as White Cane Safety Day. I know, depending on who you ask, they might say one or the other, but they're both the same day, October 15th. So we're using our Friday before October 15th to talk about White Cane Awareness Day. What it is, why it's important, why you should know about it whether you use a white cane or not. So, I want to hop right into what that is. So Judy, could you start things off by just explaining to people what White Cane Awareness Day is and why it's important?  

[Judy]: Um, well the day is really...  

[Doug]: Judy, we're having a little bit of that internet problem that we thought might be an issue. As those of you who are watching live know, internets can be... Judy, sorry, I'm going to just stop you for a moment. We lost you for a moment because the internet got a little choppy. So you want it, do you want to start that over?  

[Judy]: Sure. Um, just that it's a day to really make aware of the use of white canes, people using white canes to get around in their communities to do everyday things, those with low vision or no vision. It was passed, I believe in 1964 by president Lyndon, B Johnson. There's a law giving the right of way also to people using canes, crossing the street to make people more aware of the fact that, you know, we're out there and we're using canes to help us get around safely.  

[Doug]: Great. That's that's definitely a great, great start and introduction there. And Monica, maybe if you want to kind of fill in from your perspective, in your words, what is White Cane Awareness Day and why it's important for everybody? Not just people who use a white cane?  

[Monica]: Well, back in the 1960s, the National Federation for the Blind was really active and advocating for the rights of blind individuals. And they really were instrumental in helping this joint resolution with Congress to pass this White Cane Safety Day back in 1964. And initially it was all about, you know, the white cane is a tool used by people who are visually impaired and blind to really probe their environment. You know, it's an extension of themselves to feel the ground and navigate. And you know, through time the tool really has become a symbol of independence and freedom among those who are visually impaired and blind. And that's really the greater thing. And that's why NFB has really changed the focus on the day from safety to awareness. It's so important for all of us to become aware that this really important tool is used by individuals not to say they're dependent, it's because they're independent. It's something that they need and it's an extension of themselves to be able to travel more freely and independently in the world.  

[Doug]: Yeah. Beautifully put and, you know, definitely want to get more into everything having to do with White Cane Awareness Day. But before we do that, I'd love Judy, I'd love to start with you. If you could tell us a little bit about kind of everything that leads up to you using a cane yourself. If you could kinda kind of take us back in time and give us a little more context leading up to your personal cane usage.  

[Judy]: Well at a very young age, I had been diagnosed with juvenile rheumatoid arthritis. I think it was about a year and a half. And my mom noticed I was having some trouble walking and, the doctors had diagnosed me with JRA. And there, the doctors also had sent me then to the eye doctors because they caused inflammation in my eye, which then led to glaucoma and cataracts...  

[Doug]: Judy, if you can hear me, your internets getting a little choppy again. Hey, Judy, sorry to interrupt. Right when you're talking about cataracts, that's when we, it got a little jumbled. So if you just take a step back to wherever you were. Yeah. It's okay. We're, you know, again, here's the thing that everyone understands particularly during this time, internet is a thing that is always a little unpredictable and has been a little bit more so, so don't worry, everyone's got a healthy kind of patience for weird internet. But it's coming through okay now, so why don't you just continue from there.  

[Judy]: Sure. So with juvenile rheumatoid arthritis, it caused inflammation in my right knee. And then also in my eyes, something called uveitis, um, and the treatment they use to treat the uveitis had caused glaucoma. So they were able to actually control the uveitis, but not the glaucoma. The glaucoma is something I still battle today with eye drops but have had several surgeries to lower the pressure. It's the pressure in the eyes affecting the optic nerve, which first takes peripheral vision. And when I turned 18, my visions was such that I was considered legally blind. I was graduating from high school and was introduced to the New York State Commission for the Blind. A man by the name of Ed Kaplan had come to my home with a white cane and showed me how to get around in my neighborhood using it. And I used it mostly through my college days. And then in 1990, the graduation of college, I had had some experimental procedures done to control the glaucoma. And there too, I then lost the remainder of my vision and relied heavily on the cane at that time. And then after that I went and got a guide dog from Smithtown Guide Dog Foundation. I went to work for a Newsday, here on Long Island as a telemarketer and then quality assurance person. And I did that for about 14 years. I got married, I had two children and, you know, you can travel, you can need to be...  

[Doug]: Oh, sorry. Yeah. Just to, just to follow up on one part of your story there, because I'm interested, you know, as someone like yourself, who's both used a cane and a guide dog, I'm interested to talk about that distinction a little bit, but before we go into that again, you were talking about, you know, first starting to use your cane. Can we just go to that for a moment and kind of like, can you walk us through a little bit of what that experience was like being someone who's who's never used a cane before to learning how to use one and kind of just let everyone know what that experience was like for you?  

[Judy]: Sure. Well, when I first came to use the cane, I had some central vision that I could you, I could still see, and the cane is only used when I needed it and it was hard to come to use it because then it, it really made others aware of the fact that I couldn't see. And that was still something that I was still struggling with, even to be called blind was very hard. I never liked that term. And even using the cane, I didn't really like using the cane initially either. So it took me a while. Um, he had come to show me how to use the bus, how to walk around in my neighborhood, had to go to the store independently. It really was a safety, you know, because it, again, it explained to others that I couldn't see and so people could offer assistance. And also, you know, it made me more confident traveling. I wasn't as timid, you know, because I was tripping on things and walking into things. So it, you know, it was an adjustment period, not the easiest, but it took me a while. And then as my vision started to decline, I realized I needed to use it more. And then, you know, then as I said anyway, and I had gotten a guide dog, and then, now after the birth of my children, my dog had come to retire and I then went back to using the cane. I've been toying with the idea of getting a dog, but there is some practical reasons as to why I haven't gotten a dog yet as a guide. I have a pet at home for the kids and myself and, you know, and use heavily the cane now getting around, walking in my neighborhood, going to the grocery store, different events.  

[Doug]: Well I definitely, I want to get more to that kind of distinction or differences between cane usage and guide dog shortly, but, Monica, question for you and you know, something I know when we got to connect about this earlier in the week, you definitely have a really good understanding of kind of the history of the white cane, and kind of, you know, White Cane Awareness Day by extension. Can you give us a little bit of an overview? Because I know I found that really interesting as far as kind of like the earlier origins of the white cane to like where we are now.  

[Monica]: Sure. You know, the, the white, the cane or a stick or a staff or anything like that, that goes back to really biblical times. I mean, you can think of like, just growing up before you heard about what a white cane was, maybe you were hiking in the woods, you pick up a stick and you'd use it to explore the ground. Maybe use it for support. So the use of a long object, stick or whatever, it goes back a long time, but it really, I mean, even maybe the 1800s and late 1800s. So it's the first documented use. However, there was a gentleman, in the UK, his name was James Biggs from Bristol and in 1921, and James was an artist and he became blind and he was using, I guess what we would call today a cane. And he noticed drivers were not stopping when he was using the cane. So he was the first person documented to paint the cane white and to really increase driver's acknowledgement that here there's someone crossing the street. And then the first documented, really use in the United States was back in the 1930s. When there was a president of the Lion's Club, his name was George Farnham. He also painted a black cane white and put the red stripe at the bottom of the cane. And that's now known as the white cane in the United States. So I guess we could talk a little bit more as we go along, maybe we could drop little hints along the way, Doug. But really the next big thing was when all of the vets were returning from World War II, Dr. Richard Hoover, he was really instrumental in developing along the white cane and in the field of orientation and mobility. The first really known technique for our profession was that of the Hoover method and that was when individuals would tap the cane from side to side in sweeping motion, but keeping it, really tapping it from side to side, keeping it kind of a little bit above the ground, but to probe their environment. And really that's really how the training began. The first documented programs in the United States of course were started by the National Federation for the Blind in the sixties, and then followed by Boston College in 1960 and Western Michigan University in 1961. So there are so many dates within the field of orientation and mobility and also the journey of the cane which I find the best timeline to be on afb.org. They have a really great timeline that everyone can look at. And that's the American Federation for the Blind. So much to learn. But it's so great to know and understand what it's all about.  

[Doug]: And, you know, Monica, part of what you just brought up and thank you for that, that little run through of, a truncated history of the white cane there. But you know, Monica, Judy, Monica was just talking about kind of the different cane usage techniques. And certainly there's been an evolution of those over time. Can you talk about personally, you know, what cane you use now and maybe if that's different from a cane that you started with and maybe how your personal cane techniques have maybe changed or evolved over time?  

[Judy]: Oh, when I first started using the cane and I use now a graphite, a four section cane that folds up and, but when I first started using it, it was more of an aluminum kind of cane with a pencil tip where I did a two point touch as Monica was talking about, you know tapping back and forth in like an arc motion about a foot and a half in front of my body to protect me from anything coming. And also giving me a little path that I know is clear. But I use now more of a technique where it's swishing from left to right, right to left, being in constant contact with the ground below me, letting me know the terrain, you know, whether there's any holes or curves. Also the tapping also gives me some information about my environment as well. The sound that I received back from the tap, especially if I'm approaching a stairwell, the echo sounding, or in a cement, inside of a building, the echo sound coming back kind of gives me an idea of how to get around that. There are things that are am approaching. Really when you're using a cane you're very much in touch with your environment. And not only the cane gives you information, but your other senses as well, such as the pavement under your feet, you know, or am I on grass. You know, using my feet helps me to also navigate, I use the cane to trail along the grass line or along with the sidewalk. You know, I'm very conscious also of, is it going downhill or uphill the pavement below me? You know, am I on gravel or, you know, am I on grass when I'm outside? Then of course listening for different things and locating different things helps to orient me in space. You know, the feel of the air around me, sometimes turning a corner on a street, you know, the draft from a building, you know, if you're in a hallway, lets you know where, you know, there's an open doorway or a corridor. So you use a lot of your senses or all of your senses, in order to get around.  

[Doug]: And you know, Monica, again, Judy was kind of highlighting some of this in what she was just talking about, about her personal use, but can you, there are, I think what might not be apparent to a lot of people who don't use a cane is the fact, knowing the fact that there are a lot of different types of canes and certainly not just an evolution over time, but certainly different options as they stand now. Can you walk us through a little bit of like what some of the different types of canes are, and fill us in on that a bit?  

[Monica]: Sure. This is Monica speaking. So the, when the came first came out, it was just a long rigid cane. It also had a crook on the end of it, almost like a Shepherd's crook. And that was initially designed in the way that you would hold it, travel to protect your wrists and your fingers as you were traveling. And the cane has evolved where the crook is no longer. It's almost like a golf grip on most canes today. There are still rigid canes that are really great for people who travel every single day because they really take a beating from the outside world. Most people today use a folding cane, which comes in different sections or they use a collapsible cane. And through all my years of teaching mobility, I always think you always want to go with a preference of the individual taking into consideration where they travel, how often they travel. You know, it may not be uncommon for someone to travel with a long rigid cane, but also have a full length cane in their bag because you never know, you know, something unfortunate could happen while they're traveling. The cane could be bent or broken and they would need to enact and use the second cane. So it's all personal preference. There's aluminum canes, graphite, fiber glass, and I'm sure in the future there'll be different designs making them lighter. But it depends on the traveler too. You know, most people like a lighter weight cane because sometimes the tips weigh the cane down a little bit and some people with balance challenges prefer a heavier cane. So it's just really about that individual traveler that makes the use of the cane important in the type of cane they use.  

[Doug]: So I guess as a specific example, if I'm someone who say, uses a cane and lives in a city, but occasionally likes to like go on more like wilderness like treks and hikes, I'll probably be using a different cane for each of those environments. Is that correct?  

[Monica]: This is Monica. Sure. And, and you know, you may use different tips as well. You know, there's various different tips like Judy said, you know, the first cane tip that was out was a pencil tip and it was just a little narrow tip. And I'll be honest with you, when I was getting my training at Western Michigan and I used that pencil tip, boy, did they get caught in everything. But that was really the purpose of the cane, is that it's supposed to tell you what's there on the ground. But thank God there's been an evolution in tips, you know, where there's smaller tips, there's bigger tips and they roll. And now there's options for everybody, which is great. And I always think as an instructor and in life, you always want options because without options you're stuck. So you may have a few different tips depending on where you're traveling.  

[Doug]: And you know, something that comes to mind when I think of like specifically White Cane Awareness Day and something that we were starting to get into of like the fact that it's an awareness day. Again, it's not, not even so much for the people that use a white cane. Obviously people use a white cane are very aware of it. Part of the awareness day aspect is for everyone else, people who don't use a cane, we were starting to talk about again, why it's important for other people to know about cane usage. And one of the things that comes to mind. I know we get asked this a lot when we do Feeling Through Experiences and, you know, Judy, I kind of ask this question to you. And again, there's certainly with the caveat that there's no one size fits all answer to this. But how might you answer someone if they ask the question of, hey, if I'm someone who doesn't use a cane, doesn't necessarily know much about that world, and I see someone out in the world in a city per se, on a street with a cane, how do I know, how do I help that person? Or how do I know if I should help that person? How should I approach that situation? Again, there's no one size fits all answer to that. But how would you start to answer that question if someone asked that?  

[Judy]: Well, I think if a person is to approach a person who is using the white cane, the first thing that I would say is the nicest thing is just to first ask that they need assistance. And that way it gives the person using the cane to say yes or no. Because some people are very independent and they know the route that they're going and may not need assistance. So it kind of respects their dignity and allows them to, you know, say yes or no. And then if it is that the person does need assistance, because it does happen, you kind of get into areas where you don't know or you get disoriented, especially on a day where it may not be so nice out. And the sounds are different. Or, you know, if you're out in the, in the snow, it's a lot harder to feel your landmarks and the pavement under your feet. So, if a person does need assistance you could offer them sighted guide, where you would offer them your elbow and then person would hold onto your elbow. And if you keep your elbow close to you as you travel it then puts the person who can't see a little bit behind. And that puts the person in the lead who can see, the person guiding. And, it's funny, but sometimes I've had experiences where even though I have my cane, you know, people don't always realize that I can't see. And I've even been to like a restaurant and a person has, you know, guided me to where I have to sit at the table and then leaving the restaurant, there'll be walking me out and they'll be saying, they have said, you know, I'll walk you to your car. Where are you parked? And I'm thinking, uh, they don't give me a license. It's not a good thing. You know, it just, they just weren't able to put, you know, put it together. Or if, say you were looking for something and you might ask, you know, where is the bus stop and a person will say, well, it's right over here. And I'm like, okay, where's over here? They're pointing, you know, and that's what I'm doing right now with my hand, Oh, it's right over here. You know, so if a person can be very specific about the directions that they get and often too, when a person is looking at a person, the perspective is opposite. So, you know, my right is your left. And so in a lot of times, people have trouble with that. When giving direction, you have to try to think of the perspective of the person who can't see in order to give the detailed description.  

[Doug]: You know, Judy, your example is so apt. It really points out the fact that the awareness day, the importance of the awareness day for other people, right? For there to be more awareness for people that when they see a cane, a white cane, even if they don't use one themselves, they know what it means. They have a better understanding and context of how to approach or not approach, right, ultimately a situation. But like if you start to associate with a white cane, if you start to associate some of the deeper understandings that you're sharing, someone will be more likely to not just say, oh, it's over there or point to a direction and actually have the deeper understanding of the context of the situation and make sure that either, whether they're going with you or describing where to go, that they understand how to do so it's actually helpful for you. So, you know, again, great example that really illuminates why White Cane Awareness Day is an important day for other people who don't use canes to really understand that. And I'm gonna, I want to get into a lot more of this in just a moment, but before we do so I'm going to take a quick pause for an interpreter switch. And all right, we're all switched over there. So I'm continuing here, but before I do again, I'm about to go to our, actually our first question here, but, you know, again, by all means and for anyone who's watching, feel free to ask any questions that you might have. I know that I've learned a lot over the last week in preparing for this episode about White Cane Awareness Day, and certainly a lot about white canes and why it's important to have a greater understanding. And if you have any questions by all means, feel free to ask and we'll do our best to get to them. So, Judy, this first question is for you, it happens to actually come from a Judy as well, who's asking the question. So the question is, Judy, aside from the many practical safety uses for a white cane, what are some of the more symbolic things that are also important that you would like sighted people to be aware of? So we just starting to get into this, but maybe if there's anything kind of to add to that, please go ahead, Judy.  

[Judy]: Symbolically, just, you know, making it awar,e the community aware that a person using the white cane is using it to get around because they cannot see, they have some type of vision loss. So it does symbolize vision loss and they are using this tool to navigate safely. It's, you know, it is very liberating. It's the difference between staying home or getting out and doing things and to do it independently because you can't always have somebody with you. And so it's a symbol of freedom and it's a symbol of safety and it's a symbol of a person who can see and just trying to make their way as best as they can.  

[Doug]: Beautiful answered. So, you know, I want to take a moment, you know, Monica, you had told us at the top of this episode when you introduced yourself a little bit more about, you know, your profession and kind of the multiple hats you wear at the Helen Keller National Center. I'd love to just explore that a little bit more. If you go like a little bit more into depth of those, the various avenues of what you do there, and certainly how it directly applies to a lot of what we're discussing today around White Cane Awareness Day.  

[Monica]: Sure. This is Monica speaking. So I I'm actually rounding out my 21st year at Helen Keller National Center. And, I remember when I first started there back in December of '99. Dr. Gene Bourquin really took a chance on me. He was the supervisor of the O and M department at the time. And I was just a new mobility instructor. And I knew how to instruct those with visual impairment to total blindness, but I had no idea how to work with a dual sensory loss. And through all of these years and great mentorship from Gene and a lot of my colleagues, I've really, I mean, I have to say that every single day working at Helen Keller is just magic. You have no idea what's going to happen. You know, the residential nature of the center helps us to really support everyone who comes to learn and everyone, you know, is so different. And I was having a conversation with one of my colleagues, I think it was yesterday and, you know, deafblindness or blindness or deafness, It's just a part of who you are as an individual. It's not a label that should identify or, you know, really make who you are. It's just a characteristic of you. And I viewed every single person that I've worked with over these past 21 years, it's just that. Someone was asking me like, what do you do with all of them? You know, every single person? I said, no, no, what do I do with each of them? And I think that's probably the biggest thing I've done over the years is that I've worked with each individual and with all of my colleagues to help them achieve whatever it is that they're looking for. If it's traveling out to the community, traveling to a work site, traveling to college and, you know, I'm so, so fortunate to have both a low vision department and the audiology department, because most blind rehab centers around the country do not have an audiology department. So we're so fortunate to be able to say, hey, so and so went out on a mobility lesson today and they were identifying traffic sounds. Can we have the audiologists come out with us and really understand what equipment they need? You know, there's a mobility setting on hearing aids that are so great to turn on when you're out there traveling, or maybe there's an assistive listening device that would help. And maybe a quiet area where we're talking about a lesson and my mobility and my low vision instructor, she will actually say, hey, you know, we need to add some medical filters too, you know, which are known as sunglasses to help someone see better when they're walking from a well lit area to a shady area. I mean, we just have the ultimate team at Helen Keller National Center that we look at people in a 360 degree view. And it's just a gift to be able to work with everyone every single day and to know that each individual that comes truly leads their program. We're just a part of their journey. And I'm so grateful to be a part of it.  

[Doug]: Well, Monica, so many gems that you just had in there. And, you know, certainly as someone who's had the distinct pleasure and honor to work with the Helen Keller National Center for quite some time, now I can certainly second everything you're saying about HKNC and you know, something else that came up for me, and again, I just keep filtering this through White Cane Awareness Day, and something that was so great that came up for me in what you were just saying is, you know, when you were saying, when asked, oh what do you do with all of them, you say, what do I do with each of them. And really seeing each person as a person with their disability, whether, again, in your case, dealing with deafblindness, in Judy's case, you know, talking about the blind and low vision population, is certainly that's an aspect of who you are, but it's one aspect of many and seeing someone as this fully formed human. That like, when I think of back to the question of, well, what do I do when I approach someone and see if they need help? Well, a good thing to start with is maybe start thinking of the person as a person and not as their disability. Because that'll probably right off the bat really inform how you're going to go about talking to them. Right. And I think that's, it comes so much of the awareness that we talk about on a regular basis. And, you know, obviously around, in this case, White Cane Awareness Day, or whether it's, Deafblind Awareness Week, there's certainly unique aspects to each one of them. But I feel like a fundamental cornerstone of each is if you were to see each person as a person and in these cases, not as their disability, you're going to be in pretty good shape for everything else that follows. And, you know, certainly as someone who, you know, is maybe about three years into really my formal education of the deafblind, blind, and low vision communities, and certainly learning on a daily basis, I always say, if you, if you're grounded in that, you're going to do well. Because if you maybe, you know, say something a little bit, you know, not in the best way you could or whatever it is that you don't know, if it's coming from that place, someone will be more than happy to fill in whatever gaps of understanding you have. I feel like it really only starts to be really offensive and off-putting when you treat someone not like a person, but as their disability is were kind of like most of the problems arise. Right? So again, Monica so much in what you said there really, really helped illuminate that point. And I want to come back to some of it more in a moment, but first another question for you, Judy. You got a little bit of activity back there.  

[Judy]: Yes. Hold on one sec. Hold on one sec.  

[Doug]: This is, you know, this is one of the, one of the things about when we're live. Now we're all, our offices or our whole worlds are our homes. Certainly dealing with a few more elements than normal there, but, it looks like, maybe, Judy, you got things to settle down a little bit over there.  

[Judy]: Yes, let's hope. I have an active household.  

[Doug]: Whoever's there, if they end up keep talking, we're going to have to just pull them into this episode.  

[Judy]: That's right, right. I wanted to also talk about the fact that, um, I am a member of the American Council of the Blind, which is another national organization. And we've done a lot to make the blind community aware of accessible traffic signals, which is another important pedestrian safety tool where we actually get access to pedestrian signals, traffic signals, you know, it's an, it's something that's auditory as well as it vibrates. And I've had the opportunity to have two of them installed in, in my area and what it actually does as anyone would approach an intersection and if it has a pedestrian, I think they call it a ped head, where, you know, you see that picture of the little guy that's going to walk or not walk, the pedestrian signal of where you, when you hit the button on the, on the pedestrian signal, it will let you know that it's safe to walk or that the sign is now saying to walk. So it'll actually put it out auditorily, or it will vibrate. There's a, on the ones that we have here in town. It's like an embossed arrow that starts vibrating when the pedestrian signal walk sign is on. So it's access to information that you would see visually or hear, well, you wouldn't hear a signal, but for these signals you can hear. You know, it lets, you know, when the light has turned, turns green and though you still need to still be aware of traffic around you because anything mechanical, you know, can break. So you still need your mobility skills and training to listen for traffic. And then there's a lot that goes into the training, crossing a very busy intersection, and I'm sure Monica could give you more on that, but, you know, you have to listen for walking with the traffic parallel and that using a block or a car as a blocker does take a lot of guts to do that. And I, and using the assessable signals do certainly help. And so I'm glad that they have these things. It's a relatively new, I would say within the last, I say 10 to 15 years, maybe they've had them. But not everybody knows about them and it's based on need, you know, it's part of the Americans with Disabilities Act. There's a section that talks about access to signage or environmental signs and, or, I can't remember the exact wording, but it's giving us access to something that you would normally have visually. And in order to get one installed, you do need to contact the municipality that governs your traffic signals. So you have to know, is it a state road? Is it a county road? And then you have to write to them and you have to let them know your need. And then somebody will come down and evaluate, but the more people are aware of it and the more people asked for it, the more that it'll become, you know, commonplace in, the community. And it not only helps people with low vision, it not only helps people who are deafblind, but it helps, you know, old elderly people crossing intersections, mothers who might be traveling with their children. It's just another tool that we all can benefit from.  

[Doug]: And, you know, Judy, you know, you've aptly pointed out the importance of advocacy. Certainly that's something that has been a big part of our discussions often on this platform. Certainly, you know, recently, you know, celebrating the 30th anniversary of the Americans with Disabilities Act. And, you know, Monica, a question that comes from that is around, you know, obviously, you know, Judy was describing kind of like this kind of, you know, in her immediate environment advocacy with, you know, the kind of, the local municipalities to get this accessible traffic light installed. What about, how does advocacy play in when you're training someone? Like their personal advocacy on like a moment to moment basis? How does that play into your work when working with people in mobility?  

[Monica]: This is Monica speaking. I think that's a very foundation in how we serve every single person that comes to Helen Keller is that their voice matters. And it matters a lot, just like all of our voices matter. And that, you know, with time and practice, your voice gets stronger. You know, in the beginning, when you're advocating to get assistance at a store, maybe you're fully blind and you're getting it. It's scary. It's, the same level of being scary when maybe we go on public transportation for the first time. Every first time in life is scary to all of us. And I think when you bring a sense of normalcy to the training and saying like, you know, we're all the same with our fears. You know, the fear is just maybe different. But learning how to speak up and say, this is what I need. Like, for example, when Judy was saying, you know, when you're guiding someone, you could just say, how can I help you? And you can help your student find their voice saying, can I take your arm? You know, because people want to help. What they may do is they may push, pull, tell you it's okay to cross the street. And you're like, hello, I'm blind, I can't see where to go. Or, I'm deafblind, I can't hear or see anything. But if you have the words, whether they're spoken written or gestural, you can advocate for yourself. And we do a lot of that practice in all of our classes at Helen Keller, especially in mobility. You know, we practice a lot at street corners with how to accept human guide assistance and how to advocate for the right assistance because in life, all of us, how is anyone supposed to know what we need if we can't say what we need or demonstrate what we need. So that practice is so important and you know what, we're all forever advocates of our own needs. And that will just never stop.  

[Doug]: You know, Monica, I felt like I could, I feel like I could derive like many wise quotes from much of what you're sharing today. And something, you know, that you were just talking about that, again, we spoke about earlier when, Judy, you were talking about answering the question of like someone who asked, how can I help, or if I should help. Alice Eaddy, a dear friend of ours notes and, you know, kind of in conjunction with what you were just talking about, Monica, she says, please stress why it's so important not to grab a blind or deafblind person in an effort to force assistance upon them. You create fear, not the impression that you want, to be helpful. Especially since some of us can't hear you approaching. So certainly, Alice, I hope I believe Monica was just speaking to that, but, you know, really, as you just detailed, Alice, in addition to what, Monica, you just shared and Judy, what you shared earlier, certainly that's a point that can't be spoken enough and can't be made, people to be made more aware of, because it's certainly an important one and something that certainly a lot of people in the deafblind, blind and low vision communities have to deal with on a pretty regular basis. Please, Judy, go ahead.  

[Judy]: Sorry, just, I wanted to say that I've had the experience where I was at a corner and was going to cross and somebody came over and not knowing, I guess, how does to ask, took my arm. And I ended up actually crossing over, you know, the wrong street. So now I had two streets to cross in order to get to where I needed to go. And the attention was good. And, you know, because we really weren't communicating, this is early on. And, you know, we weren't really communicating, I wasn't communicating what I really needed and they weren't really asking either. And I was going, you know, they were taking me. And so I guess that sometimes if you don't ask and you don't say, then you might end up on the wrong street corner. And  haveore m work to do.  

[Doug]: Go ahead, Monica.  

[Monica]: That is just so true. It's just like, you know, with timing, you have a better understanding of your environment and where you want to go. Because, you know, as Dr. Gene, you know, when he was doing all of his research on the street crossing card and in all of his research, you know, deafblind travel, you know, what he found was that people truly want to help, but often when it comes to street crossings, they will help you in the direction they are traveling. And sometimes if you don't let go of their arm, they will help you to cross several more streets to just, they're just being nice. And, you know, in mobility, a lot of times we let that happen. You have to let those things happen to have a moment of, oh, okay, now I need to pay attention because I need to get places. But those things will happen. And I think the other thing I wanted to say is that, you know, when people grab, push, pull and try to help someone who's visually impaired or blind, just take a moment and consider anyone who's not visually impaired or blind. Would you push, pull, or grab them? No. So don't touch please.  

[Doug]: Right? Exactly. It's like, well maybe if you just applied how you treat anyone else to this situation, that's a great place to start from because you wouldn't do that for anyone else. Certainly people who are sighted and hearing sometimes need help navigating a space too, or need directions. And you're not going to like go up and grab them without communicating with them either. So, you know, great, great, well, put there. Judy, there's another question for you from Kimman. Kimman asks, what is the practical difference between having a cane and a guide dog and does having one mean you don't use the other?  

[Judy]: Well there are pros and cons to both. If anybody just heard the dog barking in the backyard, she's my house, but she's not a guide.  

[Doug]: Obviously you're dog can obviously hear our conversation and is wanting to speak for itself.  

[Judy]: And so sometimes dogs have their own minds and want to do with what they want to do. So that is a kind of a drawback. Using a cane is something you can fold up and put in your pocket book and, you know, have when you need it whenever you need it. You know, dogs can sometimes be stubborn and not always want to do what you want to do as my dog is talking now. And then, also the cane puts you in touch with your environment. You know, you can find a landmark easier with a cane that you might be using, like going down here when I was taking the kids to the bus stop, you know, when they were getting on the school bus to go to school, you know, and I was holding the hand of my daughter and using the cane to get to the bus stop. And I would know that as I come to a certain part, there was a fence and, you know, if I had a guide dog, the dog would go right around it. And I wouldn't know, you know, and it's a little disorienting at times. You know, not knowing if I've passed my landmark or am I at my landmark or like even a mailbox, like we used to use as, okay, this is where I have to go, and then it's up a little bit and I make my turn. So canes definitely let you know of your environment. But guide dogs will go, you'll go a lot quicker with the dog because they're not stopping. And, you know, they're, unless they're distracted and then it wouldn't be good. But, you know, most guide dogs are very disciplined and the team has to be very disciplined. It's not, you both are working together. You have to know where you're going and you have to still listen as to where you are. It's a lot of commitment. You know, dogs need care, they need to be walked and fed and taken out for a break. When I went to, when I was working at Newsday, I had to find a relief area for, you know, where I could take my dog out. And, you know, with a cane, you don't have to take your dog out. You don't have to take you cane for a potty break.  

[Doug]: That would be a very special type of cane. I'm not sure they've come up with that one yet.  

[Judy]: But of course, a dog is, you know, it's your friend, you know, it's your companion. It's, they're very sweet and lovable. You know, they're good friendship too. So again, I can remember a time when I was in a cab and I had my dog and, you're getting the dog to get down and under, and then the little space and they've been trained to do it, but my dad was very stubborn and wanting to get up on the seat with me, you know, and that wouldn't, didn't sit too well with the cab driver. And I don't blame him, but, you know, you don't want to be sitting there all day fighting with your dog, you know, get down on the ground. So, you know, there's a lot of pros and cons, like I said, like a guide dog will prevent you from getting hit by a car, you know, falling down a stairwell. You don't need to take as much time to, you know, get assistance from people because, you know, once you've gone through a route and a dog, you've trained with the dog and you know where you're going and it's a lot quicker and they will prevent you, like I said, any oncoming traffic, they're trained to disobey a command as well. You're putting all your trust in an animal. So that's a big thing to adapt to as well. And they are, you know, things happen even sometimes, like they can get distracted and, you know, things. I think I shared with you the other day how I, one of the first trips to the park with my guide dog, Aster, she was sniffing the ground. She was very interested in something on the ground. And I kept telling her, you know, hup-up, hup-up. And she wasn't going and I thought, well, come on, you know, you're being stubborn, she's sniffing. And I went forward and fell right into the pond, you know, up to my knees in water. And she wasn't going, she wasn't budging. And I just figured, you know, that she was more interested in what the park had to offer. And, you know, I didn't, wasn't reading her correctly and, you know, went into the water. So, there's a lot involved in both cases. A lot of training, a lot of practice. Practice helps. Going over things a lot helps trying to learn the routes. You know, you use the same routes. It helps.  

[Doug]: You know, on a related note, and we have a great question here from Alana, and this is actually something I didn't know until very recently, but, Monica, maybe if you could take this one. She asks, are there benefits to a guide mini horse? And are there any drawbacks? Do you know anything about that subject? Because I personally did not even know that there were mini horse guides until very recently. Is that something that has come across your experience at any point?  

[Judy]: Well, I have heard about them and what I, and I don't know much about them. I was kind of interested in finding out more of myself, but I think they wear diapers, I think. So I don't know, as far as like the maintenance of, you know, that might be a drawback.  

[Doug]: Sure. I'm just curious, Monica, in your, I know that you've worked with guide dogs obviously, has a guide mini horse ever come up for you, or do you know anyone that uses them?  

[Monica]: This is Monica. No, I haven't. And we haven't built the stables yet at Helen Keller. But from what I know, the guide ponies or mini horses that are out there have been used for people who live in more country like settings. I can't foresee them being used in urban or residential settings because they do require more space, but I don't think there's any downfall to any of the things that individuals use to travel as long as they're using it to benefit themselves. And, you know, I just want to go back to that point that Judy was making about her dog, Aster, was that whether you're using a cane or a guide dog or a guide pony, you never go forward in the world when you're traveling outside of your home specifically without the dog going forward, the pony going forward, or your team going forward, because they're clearing the path for you to go forward. And I think that's, I mean if that's one last thing I have to say, you know, today regarding White Cane Awareness Day is that it's so important to probe your environment, you know, to make sure it's safe to forge ahead. And, you know, all of these tools and living animals that help everybody, the goal is overall safety, but as Judy so carefully pointed out, the traveler is the person in charge, you know. They're the ones that make the decisions. And like you said, Judy, it's a tool and it's really about independence and freedom. And thank God there's white canes.  

[Doug]: And, you know, we're getting close to the end of our time here today, but we still have a little bit of time left. And I'm wondering, you know, Judy, starting with you with the last, you know, maybe with our last, you know, 30 seconds each here, if there's anything that you'd like to share in closing. It could be something about White Cane Awareness Day, or just, you know, any kind of sentiments you want to leave with. Is there anything you'd like to share?  

[Judy]: Well recently with being at Helen Keller Services, and I'm on in their team program right now. And I'm there with other people who have been newly blind and more recent than I. I've been now without my vision longer than I had been with my vision. I lost my sight when I was 22, totally. And now I'm 52, so 30 years without vision. And what I would say to somebody who recently lost their sight is don't be afraid to get out and do to use the tools that are being given to you. Don't let it keep you inside. Because when you're out and amongst everybody, that's what it's all about. Life experience, touching others. And I know Coronavirus right now has us afraid to do that. And it's, you know, putting distance and, but not to be afraid to ask for assistance and realize that you have skill and have talent, and we all have it. We practice our skills, we get better. So I think really the key is practice. Be confident, put your foot forward with your safety devices, but get out and do,don't, isolate yourself.  

[Doug]: Well, truly beautifully put there, Judy, and thank you for sharing that. I'm sure that that resonates with a lot of people who are watching. Monica, just same to you. I'm wondering just if you have any kind of final sentiments to express, whatever that might be.  

[Monica]: This is Monica speaking. Just, a word of encouragement, you know, for anyone who is newly diagnosed with a visual impairment or on their way to total blindness, you know, it's important to start, it's important to start your journey with a white cane. I always like to say, just attach it to your body, wear the carabiner clip or a keen holster, get used to having it on you and start using it. You know, every bit of practice, whether it's math homework or using your cane, practice does make perfect. And without that cane, you're truly not safe. So start using it today, start your journey. If you're out there and you're newly diagnosed, reach out and get some help. You know, it's a beautiful journey.  

[Doug]: Well, thank you for sharing that, Monica. And obviously, you know, one of the places people can reach out to is Helen Keller National Center. You can go to HelenKeller.org, certainly to find out more about all the services that the whole Helen Keller network provides. And Judy, was there, was there something that you wanted to note before we sign out here?  

[Judy]: Yes. That also, I would encourage people who are sighted not to be afraid to talk to somebody who, you know, is visually impaired. To reach out and ask, respect as we had talked about before, you might make a new friend. You know, if somebody needs assistance, never shy away from it, you know, to offer and then to just respect whatever answer you receive, whether it's no I'm fine or yes, thank you. And this is the way, you know, I can help, you know, let them know what it is you need. Like you said, to advocate that way. That's really, that's communication. That's reaching out and touching. That builds community.  

[Doug]: Yeah. And you know, Judy to just kind of pick up what you were just talking about. I can certainly second that, you know, as someone in myself where, you know, kind of one of the great life journeys that I've been on over the last few years was in, all stems from me connecting with, Artemio, a deafblind man, one night, late, on a New York City street corner and all the gifts that have come from there. Certainly a lot of great relationships, really close friendships within the deafblind community, blind, and low vision communies. So I'm definitely living proof on the other side of what you're saying, as far as, you know, how much value connecting with all types of people can really provide in your life. And, you know, I just want to thank both of you, Monica and Judy, for joining us today. It was really quite a pleasure. And I'm really glad that we got to talk, not just about White Cane Awareness Day, but certainly a lot of really interesting issues that stem from that. And I want to thank all of you who joined us today.It's, been a pleasure to have you all, you asked some great questions today and certainly had some great comments to share. As always, again, reminder too, White Cane Awareness Day, also known as White Cane Safety Day is on October 15th, which is a Thursday. So clearly we're doing this on, we do these on Friday. So we wanted to do it the Friday before, but certainly there's still plenty of time to share whatever you've learned today with others. And certainly help raise awareness leading up to, and then on October 15th, which is White Cane Awareness Day. So with that said, thank you everyone. We will be back again next week, same time, same place with another episode of Feeling Through Live. And until then we hope you have a wonderful weekend and week ahead. Bye everyone. Thank you. 

Feeling Through Live • Episode 25: Zeno Mountain Farm

[Doug]: Welcome to episode 25 of Feeling Through Live. I have the distinct pleasure to be joined by some of the Zeno Mountain Farm team here today. We have co-founders Ila and Peter Halby. We have many year camper and actor extraordinaire Jeremy Vest joining us. And I'm really excited to talk about a lot of things today, but for starters, for those who aren't familiar with Zeno Mountain Farm, perhaps, Peter and Ila, if you could, if you could kind of fill everyone in on what Zeno Mountain Farm is and what you do there.  

[Peter]: Sure. Hey, uh, Doug, thanks for having us. This is fun. It's fun to, to sit down and talk about this stuff, especially now more than ever. Um, and, and Jay, I'd love to get your interpretation of what Zeno Mountain Farm is, but, um, you know, it's, it's first and foremost, it's a place where we're up in the hills in Vermont. And it's this location that we've created over the years where people can gather, year after year and come back. And we've created this, this camp and this retreat where people with disabilities, people with cancer, veterans, people with chronic illness, and other marginalized communities can come back year after year, be together in a community, share sort of history together. Um, do really fun creative projects. Um, and you know, it's lifelong friendship basically.  

[Doug]: And Ila, do you have anything to add to that because I'm going to get to you and Jeremy as well as your personal definitions, but Ila.  

[Ila]: Yeah. Zeno is, the mission is committed to creating life opportunities for lifelong friendships and community, and to live in a diverse place where everyone is celebrated, everyone contributes, everyone is needed, and the talents of everyone elevate the entire group and all that we do in the day in and day out, just living together and also the art that we create, movies and plays and all the fun things that we do when we gather.  

[Doug]: And Jeremy, I'm sure you got something to, to help round out what Zeno Mountain Farm is.  

[Jeremy]: I do. I want to say hello to the beautifully talented and well ,lovely Atalia and Emily. Hello you two. I love you so much. I hope you guys are doing well. I miss you. And, uh, Zeno is a place where I feel at home. I feel like I'm not lonely anymore when I'm stuck at home. I feel like life just gets better every summer. And when I'm there, you know, magical things happen unexpectedly, and that's just part of life. And, you know, I've known Peter and Ila for most of my entire life. I've known them for so many years and they've been a huge part of my life. And I, and I loved them for that.  

[Doug]: Well, you know, we'll definitely get into, you know, some of this stuff of the ways that the current situation in the world and pandemic have made things challenging, of course, and not having that, that same experience that you normally have. But what I will say is, you know, you guys have all kind of pieced together, this well-rounded explanation of what Zeno Mountain Farm is and what I've kind of come to know over the last couple of weeks in connecting with you all. And. And, you know, checking out your website and watching one of your films and reading about you is that it's something that can be, you know, I I'd say in a, in like a New York Times article, I saw that could be really like simply described as, you know, this camp where disabled and non-disabled campers all work together to have fun, make art and make these amazing films and create this really amazing, inclusive and diverse space. But as, as you all know, and as we'll get into, that's really just skimming the surface of really what the heart and ethos of it is. But I will say something, you know, something that I, what seems a little bit maybe untraditional from some other camps that you might imagine like this is that they're, not just, I remember when I would go to like sleepaway camp back in the day, I would go for, like, I think I went to my camp for like five years, and that was like a good run. You have campers that come back year after year for many more years than that. Jeremy, how many years have you, have you attended or been a part of Zeno Mountain Farm?  

[Jeremy]: Zeno started in 2009 I want to say, or 2010. I'm not quite sure. But since 2010 I've been going and I've been, and I've been blessed to have gone into this place, and I have the best friends in the world from this place. So I've got so many people in my life that have come in from Zeno, and we've continued this journey together for 25 years or so.  

[Doug]: Wow. 25 years. How did you guys first meet? How did you first get connected with each other?  

[Peter]: Well, I, yeah, we've known Jeremy for 25 years. Yeah, he was, we were sort of kids together. Um, although Jeremy's younger than we are. And, uh, you know, I was just gonna say that, you know, there's, there's certain pillars of Zeno that we've developed over the years. Um, one of which, which Jeremy was talking about is that we, we invite the same people back year after year. Um, so we can have that, that shared history, which, which often doesn't exist, um, a lot in the disability world. Um, and then, and then the other one being that, um, everyone contributes to the full extent that they can. Um, we, we, we call them camps. So we actually actively don't use the words campers and counselors because that brings in this hierarchy of, you know, typically it's, non-disabled people are the counselors and then disabled people are the campers and we sort of go away with that language because we don't want that hierarchy that exists. Um, in that dynamic, we, we say everyone comes and contributes what we can, what you can. And then in another important piece and pillar of that is that we don't charge anyone and no one, um, we don't pay anyone to do it. So everyone who comes to one of our 12 camps or retreats, uh, is, is here sort of on the same level and comes for the same reason because they love sort of the, the adventure of it and the community and the, and uh, the creativity  

[Ila]: And often, um, the people with disabilities that come like Jeremy have been coming for 25 years, summer after summer. And the people that are the safety crew, that's the term we use for the group of people that are helping and providing care, are coming for shorter stays. Sometimes some people come for 25 years, but people sometimes also come for five years, like you're saying. And so Jeremy and our crew with disabilities is teaching and training new volunteers all the time. That's, you know, I mean, Jeremy's kind of like the Zeno ambassador. If you need someone to greet you and introduce you to the culture of Zeno because like what you're saying, and it is hard to kind of understand the feeling of the community when you just read about a camp on a website or in an article. And when you come to Zeno and you, or you see a film or you come to a play or performance, Jeremy's the best guy to be, he's like the eternal, you know, host, and he can kind of show you and teach you about what we've created here and how people show up and how we treat each other and how we support each other, how we say yes, how we get creative and how we care for each other. And so without that social hierarchy of counselor and camper, that sort of says that people without disabilities are going to be teaching the people with disabilities when often it's the other way around, or it's all just mixed. You're having, even in one meal, you're having, everyone's teaching everyone, everyone's making friends. And because a core value of Zeno is service, when it's this diverse, everyone gets to be of service to each other. Jeremy can be of service to the new person who comes along. I can be of service to Jeremy to drive the van downtown when he wants to get a jelly bean. You know, we, all the service is integrated and natural and organic and very complex and also very natural at the same time.  

[Doug]: There's so much in what you both just shared that, like, I feel like you could design a master class around, you know, everything that you just illuminated around kind of breaking down these constructs and these hierarchies and what that really, not in a conceptual way, because there's a lot of talk about inclusivity and diversity that gets very conceptual and very kind of away from like the actual deep intention of the purpose of even having those conversations. But when you really strip that away and really foster an environment where it kind of transcends inclusivity, there's this a quality in a much deeper sense that allows, like you said, people's diverse talents and abilities to rise to the surface and look more through that lens and not through the lens of this hierarchy that, we've often had people on who've talked about the hierarchy of the term inclusivity. Because it means there's someone on one side of the door saying you're not here yet.We'll, crack the door open and let you in, which is, can be problematic in and of itself. So from that, question for Jeremy, you know, as someone who's obviously been a long time participant in Zeno Mountain Farm, active in many of the films, which we'll, get to, we have a clip of one today that we'll share, what is it like for you being someone who obviously year after year participates in and is part of Zeno Mountain Farm, but presumably lives most of your life in an environment that isn't quite the same as what you experienced at Zeno Mountain Farm?  

[Jeremy]: Well, this year was a big loss for me because, and for everybody and, you know, being, being at Zeno Mountain Farm gives me peace. And it gives me a lot of hope that, you know, it's a place where magic will come magic will happen every day. You know, you wake up feeling like a million bucks to see these people every morning and really, really feel at home. And since Emily and Talia are on, I want to thank them for being a part of my life as well. Because they had been with me for a long time as well. And I love them and they're there when I'm there and if I need to talk to them, they come right over us.  

[Ila]: And I think we've, we've talked about this a lot, Jer, that at Zeno, we believe it's a human right to belong. It's a human right to have a sense of belonging and to have a place where you can just like Jer was saying, come and give and receive, share your talents, give and receive love. Um, be part of something that has, um, your, your contributions are meaningful. Your contributions are necessary, your contributions are celebrated. And I think part of that is also being really honest about what people can and can't do. We're not gonna sugar coat and ask Jeremy to drive the van. You know, that that's the same examples we just spoke about.  

[Jeremy]: I'd be happy to if I could.  

[Ila]: Right, but he can't. Jeremy has Williams syndrome and that does not allow him to drive the vehicle. Um, and so when you're really honest about what people's needs are, what people's talents are and you start with what Jeremy can contribute to the group, a whole world opens up and we can get super creative and super funky and have a lot of fun and get all that stuff done to have enough support to get that done.  

[Peter]: You don't, you don't let somebody's care define them, right.  

[Ila]: And what they can contribute.  

[Doug]: And I think, you know what you both just illuminated in that point too, and you know, something I often hear reflected on this platform is that at the same time where you're not defining someone by their disability, you're also not ignoring it, right. That is obviously an important aspect of who someone is. And it's one aspect of many, which, you know, when we're talking, looking at someone as a human being and not as one part of their humanity, you guys would just kind of all really illuminated that point, which is often spoken in this platform. And I think, you know, really well exemplified through, um, how you conduct things at Zeno Mountain Farm and what the environment is like there.  

[Peter]: Yeah. I think we, we actively celebrate, you know, who people are and what they contribute. And certainly, you know, in the disability world that it's, it's this, it's kind of this untapped resource right. Of creativity and innovation and, and fun. And, um, zaniness, uh, I mean, I mean, I, I, you know, kind of like Jeremy saying, like it's the best time of his, his year. I mean, me too. I mean, it's, you know it's, just, it's just a fun, it's a fun world. And, and in our world, like we, we can create it, you know, cause we, you know, we have this group of people that are all, you know, here for the same purpose and, and, and care for each other. And so we can, we can make it, I think we, you know, we, we know that the outside world is rough, right. But, but here on this mountaintop, we can, we can create our own reality. And, and it's a good one. It's one I've really missed right now. I'll tell you.  

[Jeremy]: We do it well. We do it very well.  

[Doug]: I'm sure. Oh, sorry. Go ahead. No, just to mention in creating that reality, I think, you know, what we'll get to in a little bit, and where kind of media plays into this and, and, the films that you guys make there I think, you can have this experience at Zeno Mountain Farm that's very much in your all control in this collaborative environment that you create. But I think one of the kind of greater powers of a place like Zeno Mountain Farm is making these films that the casting, um, I, you know, not just in front of the camera, but I know behind the camera, as far as key roles in the crew, uh, exemplify the same kind of diversity and not even diversity, but like just this quality, if you will, of environment that you foster. And it's something that, for those who can't go to Zeno Mountain Farm, they can see through the films that you make. I mean, I know obviously what, you guys can all explain this better than me, but I'm familiar with I think you said you've made 13 films all told, but I know you have a lot of films that you know, you all collectively write direct and act in together, but I know there was also a film within a film, One which was following, a documentary that was following the process of you all making a film. So there are these amazing pieces of cinema that for those who can't necessarily go to Zeno Mountain Farm themselves can really get a view into what that is in a really intimate way. And I know I'm looking forward to watching a lot more of your films. I have gotten the opportunity to watch Bulletproof, and I'm looking forward to watching more, but I'd love to just play a clip from Bulletproof right now that will also exemplify Jeremy's amazing acting skills, which I was pretty blown away about. So let me just queue that up real quick.  

[Jeremy]: Oh, I am honored to hear that, Doug.  

[Doug]: We'll get into plenty of that in just a moment. So let me, let me queue that up.  

[Man #1]: Let me call you off and, uh, I'll buy you a drink.  

[Man #2]: You gotta score, settle with the reeper gang. It involves my handgun and six bullets in your chest.  

[Man #3]: You're gonna find out if you're as quick with gun as y0u are with that flower.  

[Man #1]: Sheriff, you gotta help me.  

[Man #4]: Good luck partner.  

[Man #1]: Shit. I guess he's got time y'all get.  

[Doug]: Can you guys tell people where everyone can watch that full film and in any other, any of your other films?  

[Peter]: Sure. And just, just to drop it in context. So that's one of the 12 camps that we do throughout the era is a movie making one, right? And it started out where we would, we made the first movie we made, you know, it was, it was a cheap soap opera that, that was just so awful we never showed it. And then, and then it kept kind of elevating and, and we would meet new people. We'd all shoot out in LA. And, uh, and then eventually we, we shot that Western, um, maybe about eight years ago now. And, uh, so, and you can watch the whole evolution of our movies minus the soap opera. Um, you know, they're on our website and that, like you mentioned, Doug, there was a documentary film made about that Western, the Western called Bulletproof. And then the doc is called Becoming Bulletproof. And that is that's on our website as well. Um, which is a fun, you get to see this all in action.  

[Ila]: And the website is just ZenoMountainFarm.org. And if you click on the film studio tab, it will get you to all, all the movies and also some more informational pieces that we've done with Jeremy. And a lot of our other friends. I think the movies really started as we love the dramatic arts we love. We're always doing creative things at camp we're in a parade every year. Um, we love building floats. We love, we put on musicals, we'll have to write plays and skits. I mean, almost every dinner is like theater, if there's announcements and songs and stories and kissing jokes and everything. Um, but they started out as just kind of a fun thing to do together and a way to step into, um, a higher level of creativity with this diverse group. So, so often in our culture, the bar is set so low for people with disabilities. Again, like we said, what they can contribute, what, what their talents are, what their skills are that might be different than other people. And so as we start to make the films, we were just having so much fun making the films. But as that picked up, we sort of became like accidental advocates. And then we realized like we actually really wanted to be advocates and it's not accidental. And then movies are a way that we can, like you said, give people an experience of this type of integration and experience where the product, the creativity is enhanced by the diversity and the behind the scenes. Like the BTS of that is that it's also a total creative adventure to make a movie with this diverse of a group. I remember one story when Jeremy, we actually were sharing a cabin in Los Angeles, Pete and I, and Jeremy, and I had said, Jer, like, go get your, uh, your jeans on for the scene. And so he went into the room and he came out wearing my jeans and we all laughed so hard. They were so tight and Jeremy was just cracking up. I mean, we probably laughed for like, we were late for our set for our scene because Jeremy and I were laughing so hard about him putting on my jeans to go, you know. So it's this, this level, where...  

[Jeremy]: I love you that much. Just to make you feel good, so.  

[Ila]: It's, it's just this type of integration and creativity and a place where everyone can step up to and elevate that has really made the films a hallmark of what we're doing and a hallmark of how we can connect with a greater audience and connect with, um, the world that we want to see in the media.  

[Doug]: And, you know, one of the things that really stood out to me in watching Bulletproof is, and it relates to Ila what you were just saying about, oftentimes the bar is set so low. The, like the production quality, the writing, the acting is really high level in any context, right? Not just in the context of what one might assume it would be in that space, right? Like it is really, really high level filmmaking. Um, and you know another, just on that note, what really stood out to me is, you know, Jeremy, I was really, you have like genuine, like leading man charisma on the screen and really are able to carry the nuances of, you know, the central character in this story and really carry these, these scenes that really demand someone who's a really, really great actor like yourself. I want to know more about you as an actor. Like, is that something that you were always into, tell us more about your journey as an actor?  

[Jeremy]: Well, I always liked to act because, you know, I wanted to be a performer for my whole life. And now that I've gotten to do that, you know, making these films was a joy because there were, you know, there were days when I just couldn't wait to do a scene because I was so excited for that day. And, you know, we would be shooting and I would have a lot of fun with it. And, uh, I remember the last night of shooting Bulletproof, we were all there together at the compound and I was sitting next to AJ and Pete, and, Ila, you were there, I remember. I remember saying the final words of the movie, that's a wrap and we all cried and hugged and partied and you know, those moments, I cherish that because there were, there were very special moments and very, very sad moments too, because we're all we were all done and we were just celebrating life together. And that really made me happy and proud, so.  

[Peter]: Uh, just, I was going to say, yeah, we, we worked really hard and I do, um, we were talking about sort of the level, how the bar is held in. I think the bar is low, right? So we just, we, that, that sort of fuels us to say like, no, like just like other independent movies, like it, it should be incredible. Because we know it, we, we know this community, we know what people can do. And so we want it to look amazing and be amazing and, you know, not settle for, for less, but that means you gotta work really hard. And, you know, I, I think we're always pushing up against the reality of, of, of the world and the media world, which is, you know, it's like two, it's like one to 2% of the roles that you see are disabled characters. Um, and that's, that's trying to represent 22% of the population, which is disabled. Right. And, um, and then a lot of times it's a non disabled person playing a disabled character. And, um, and I think with these movies, we were able to show like, like, hold on Hollywood, like we we've got some, we've got some serious talent, um, that should be coming in.  

[Ila]: And I think Jeremy has also, Jeremy has been in all 12 of our movies. He's been in every single one. And so he has really developed his acting talents. And in the beginning of acting journey, wasn't playing as big of a roles. And I mean, Jeremy could speak to this, maybe didn't have as much perseverance on the set, but has really developed an incredible capacity to bring his presence and his heart and his like authentic emotions to whatever scene that is. And he also brings that same presence to the set. So people love to work with Jeremy. Directors love to work with Jeremy. It's a give and take. It's a reciprocal co-creative process and he does lines differently than anyone else. I mean, no one else can be Jeremy Vest playing that role. And so that, that's part of the creative adventure. And also our movies are, star an integrated cast and integrated crew, but aren't about disability. And I think that distinction, like anytime you're seeing disability in media often, it's the disabilities that finding part of that role, that's the focus of the character, you know? And so I think we want to see more across the board, like the girlfriend or the neighbor or the person at the gas station attendant. You know, we need to see disability in all types of small roles, as well as big roles. And we need to have disability represented behind the camera to get that  

[Ila]: to happen. That's not going to just happen instantly unless we have a disabled representation in production. Um, so that's also with our current movie Best Summer Ever, which is just coming out. We were scheduled to go to South by Southwest last year. And we were like March 2019. I mean, Jeremy and Peter and I were going to party in Austin. Um, but it's still coming out.  

[Jeremy]: Can we do it next year? I mean come on. Can we do it next year?  

[Ila]: It's unfolding. Yes. We hope everyone in America and all over the world can see Best Summer Ever because we had the most integration in, on the production side, 50% integrated across production, as well as in the film.  

[Doug]: Well, I definitely want to get more into Best Summer Ever. And some of the great themes you were just exemplifying in your films, but I'm going to do a quick pause for an interpreter switch. All right. All set. Great. Continuing here, you know, again, just to get to the point, Ila, you were just making about, you know, having this representation on screen, but really not, the films not being about the disability. I think you, there are examples of that. We'll see in, certainly we try to do that with Feeling Through, but I think you guys really take it to a whole other level by the fact that it's,it's, not just that there are characters with disabilities playing roles that they might not normally have the opportunity to play, but that they're constituting, you know, I mean, at least 50%, in some cases of the faces that you're seeing on the screen and something that you started to see in this clip. And again, I know it was a little laggy, so all the more reason that I encourage you all to go to their site and watch some of these films in their entirety, because what I can say is, again, there's a lot of conversation around diversity and inclusion, and certainly with Hollywood being under pressure as they should be with some of the, what we've seen that lack of that in, in mainstream films, I think sometimes people lose the actual reason as to why it's important.  

[Ila]: I mean, Jer, do you want to start, like, have you ever, I mean, Jeremy is a big media consumer as well, watch it, there's a lot of, you can fill us in Jeremy, on TVs and movie, especially, um, cause there can be a lot of isolation in, in daily life, you know, of, um, you know, Jeremy's been looking for a job for, for a long time finding a job that can work, but have, you know, have you in all the media you've consumed Jeremy, any people with Williams syndrome or other disabilities that you could think of? Like, what was that like? Did you feel like you were represented in films and you have been? Or what does that like for you if you don't feel represented?  

[Jeremy]: Well, Doug, if you know anyone in Hollywood, who's looking for an actor, let them know I want to be there. So, and I kind of, I do feel isolated. Like I would like to be in more films. I would like to do more and be part of, you know, a part of the journey that many people have gotten to do. And, uh, the Zeno films are, you know, fun to watch over and over again because I do watch them on occasion and the media is just really good. There's a really good outlet for it.  

[Ila]: I think often too, sometimes you see one character with a disability isolated, you know, within a scene or within a you know, that that might be more similar. And so like you're saying to have, when it's like, uh, 50% of the cast, when it's a higher percentage and it's sprinkling all over, you kind of stop that stops to be an identifying primary identifying factor. You start to get into, into the creativity of it, the scene, the, and that's kind of a secondary factor of the setting. And I think that, um,  

[Peter]: The disability, isn't the defining factor. Like I was saying, like, how did you get in the wheelchair? You know, it's like, no, you're, you're just, you're, it's a part of you, but it's not like the part of you.  

[Ila]: And it's such a wide group. It goes across all races, genders. I mean, it really encompasses such a large part of the population.  

[Doug]: You don't, again, Jeremy, you were starting to talk about your experience as an actor. And certainly, you know, I hope that in addition to these great roles that you've been able to have at Zeno Mountain Farm, that you'd, you'd have more opportunity elsewhere. Um, have you found outside of Zeno Mountain Farm, you know, anyone, a casting director or any kind of entities that have, you know, that you've auditioned for, that have been wanting to, wanting you to be a part of other productions? Have you had any experiences around that?  

[Jeremy]: Yes. Uh, a while ago I auditioned for the hit TV show, Blue Bloods, starring Tom Selleck. And unfortunately I didn't get the role, but they were looking for someone with my disability. So they cast someone that didn't have Williams syndrome and people were like contacting us saying it wasn't good. The actor was not that good. No, I don't mean to say that out loud, but he, wasn't. So it was kind of troubling to me that they would, they would let him do it when I tried very hard to get the role.  

[Ila]: I think it's a very normal part of auditioning is that you go to a lot of auditions where you don't get the parts. I think that's a common thing. But just opportunities to get to those additions. So I think also busting it open a little bit about the roles and the ways and the, the jobs and how we can bring that diversity into media across the board. Our friend AJ, who is one of the Zeno crew, and actor said, you know, I want disability to have a seat at the table in pop culture. And that's really, I think really sums it up.  

[Doug]: I'm curious, what you, what kind of feedback you've all heard from other people about, you know, perhaps people that are watching a film, like the films that you make for the first time, you know, if you've heard anything back about what kind of, what that experience is like for them and if it's, if it's changed them in any way.  

[Ila]: Yeah. I think often the feedback we get, what is kind of what you said earlier, Doug, which is I didn't expect it to be so good, you know, and people are having an experience where they're seeing themselves if they have a disability, on screen, which is, has a huge impact to see someone that looks similar to you or someone's experience that you can relate to. I mean, that's what we all want for movies and media to feel, to see ourselves in a piece of a character or to relate to an experience. And so to open that up to the disabled community has been incredible, or people with disabilities, parents, or you, you, your best friend with a disability, you know, it starts with a person with disability, but that ripples out to so many people in our community and, and watching the films. I think it has a huge impact to see Jeremy onstage playing the, the cop, the magician cop, you know, and I think also people, it causes people with, and you see this in the documentary a little bit, to just rethink, to kind of take a step and go back and rethink about where their misperceptions, about what people with disabilities are capable of. Had I written somebody off, like I think it just, it causes us to take a pause and to, and to, to lean into that a little bit, which is I think a normal human thing and a really healthy thing. And again, what we hope to do in media is to get us to get pushed a little bit. You know, if it's a scary movie, you want to get pushed into that, those feelings. And so with the inclusion, we can, we can step into our, our, our service, our humanity.  

[Doug]: Jeremy, do you have, do you have a favorite all time role that you've played? My.  

[Jeremy]: Favorite all time role would have to be the mascot and our new movie.  

[Doug]: Tell us more about that.  

[Peter]: Jeremy played a giant Eagle. He was in this giant Eagle costume for a lot, a long time.  

[Doug]: Was it hot in there?  

[Jeremy]: Very. It was worth it. It was worth it.  

[Ila]: Also, if Jeremy needed a break, occasionally we would put an understudy in the Eagle costume. And like we put a guy in, he could do like hand springs, you know, and then, so that's pretty funny because you see Jeremy and then you see the eagle handspring, it was just really fun role to play with. And a lot of natural enthusiasm. That was a little bit of a typecast.  

[Doug]: It's like sliding right into the perfect role for you there.  

[Peter]: The Eagle gets pushed by the mean girl in the movie. Um, and I won't tell you if that was Jeremy inside the ego costume, was it? Do you remember that Jeremy?  

[Ila]: We can't reveal.  

[Peter]: We can't reveal whether it was his double or not.  

[Doug]: Jeremy, can you just, can you just let everyone know what just like the, what Best Summer Ever is about?  

[Jeremy]: Well, I would like to let Pete and Ila talk about it. Talk about, a little bit about it. I'm not really good at, uh, plot lines and synopsis of movies.  

[Ila]: One thing you are good at Jeremy is the feeling we can fill in about the plot, but can you share, like, what's the feeling of Best Summer Ever? What's, what's the feeling that you get?  

[Jeremy]: A lot of excitement, dancing, and singing and a lot of, a lot of joy.  

[Peter]: So, um, basically we, we, uh, you know, we kept making movies over the years and it just kind of kept building and building building, and they had always been short movies, half an hour shorts that we would usually shoot in two week period. Um, but with the success of, of Bulletproof, which he saw it, um, and we went to film festivals with that and people were like, okay, what are you going to do next? And we've always been, you know, big fans of musicals, you know, Footloose and Grease and, um, you know, High School Musical, whatever. And, uh, and so we said, okay, we're going to write our own original musical and make it feature length, and have it be, you know, the biggest cast of people without disabilities ever in front of, and behind the camera. And we're just going to go for it and sort of threw that marker down and made it happen. And when we shot this movie for over two years, and I mean, it was a monster project. Jeremy, like he said, was sweating in a very hot eagle costume. We all, I mean, we worked the hardest we've ever worked. Um, and, uh, and we're super psyched that it's finished. Like I said, it was going to show it at South by Southwest, in March, the world crashed. But we still have the movie and we're, and we're starting to roll it out. Actually, we, we sort of, we we've sat on it for awhile and now we, we said, okay, well, we don't want it. We didn't do the virtual film festival things, which I know you've done Doug. Right. And maybe we'll get into that, but we wanted to, to show it to an audience the best we can and, and festivals are starting to do these drive in theater deal. So we're, we're actually premiering next week at a festival on Martha's Vineyard. And then we're coming down to you, J, right? You want to say, talk about that?  

[Jeremy]: Yes. Best Summer Ever is proud to be a part of the Cuculorous Film Festival this year. So I'm delighted. I am very, very excited to be there to represent the Zeno family and my family and my community of brothers and sisters.  

[Peter]: And that's in Wilmington, North Carolina.  

[Ila]: We are so proud of this movie. It is so much fun. As Jeremy said, high energy, a lot of drama. It's a high school football drama. And again...  

[Jeremy]: Shout out to Mount Abe Eagles, I love you guys.  

[Ila]: We filmed at the local high school in Vermont where we live. And again, a movie too, in this genre where people can see themselves represented in a genre where they're not normally not as represented in this kind of high school, small town musical drama. It is super fun. And we can't wait for you to see it, Doug, and for everyone to see it.  

[Doug]: I can't wait. You know, again, before I ever met any of you guys, I'd read about it, that it was going to be part of South by and was super excited to see it. So the other thing that I know is with, you know, what I know about it and what I know about what you guys do, that a pandemics not going to stop it. And it's going to be something that's, people are gonna want to watch for a long time after. So I know whether, you know, you're starting to get the drive-ins and I'm sure there'll be opportunities, plenty, once things settle down again, no matter how long that is for you to screen it in theaters and certainly for people to enjoy it all over the place. I know I certainly will. With the last kind of several minutes we have here, you know, obviously we've got, we've gotten to talk about a real great overview and of the ethos of Zeno Mountain Farm. Certainly talked a good amount about the filmmaking aspect and just media representation as a whole, really the deeper reasons as to why it's important, but also, you know, Zeno Mountain Farm, as you set up at the beginning of this is not just about filmmaking, although that's a really vital part of it. Maybe just with the last several minutes, we can kind of talk about some of the other dimensions and things that you do there.  

[Peter]: Sure. Yeah, we started out just doing programs for people with disabilities and, and had so much fun with it and did all these different creative projects like the movie making, but then also, um, musical theater, music, we would get together for a week and, and, uh, you know, do retreats that were focused on wellness and, um, sports. And then we would get together and we were in Vermont, we would all go ski for a week. Um, and, uh, and then over the years it was, it just kept being like, well, what, what are some other groups that, that would benefit from the same philosophy of, you know, don't pay anyone, don't charge anyone come and, and do what you can. And, uh, and so we, over the years have built in, um, a cancer retreat, a retreat for veterans, chronic illness retreat, and traumatic brain injury specific retreat. Um, so yeah, there's 13 of them now, and it's, it's sort of every month of the year, there's something happening. And now that we're in COVID world, we we've made them all virtual. So we're, we're keeping it, keeping the families going, um, be it like this in the zoom-a-sphere,  

[Ila]: It was cool and amazing to watch the philosophy translate to these other, to the other groups, the core being, again, a sense of belonging, a group where I come back year after year and I contribute and I can build friendships and I can be part of something that is greater than myself, you know, and each retreat has sort of become like a little family. It's like almost like a family reunion when they come back. Um, and in our cyber camp during COVID, we had some big group, Zeno, all community check-ins. And so some of the crew with chronic illness that comes in February and is a really tight Dino group, but doesn't really overlap with Jeremy's group in the summer, right Jer. They came to some of the cyber programs and some of the cyber meetings. And that was again, just another layer of, when we're all of service to each other and we're all in that kind of space, that's where we like connect with our shared humanity. And that's where like, all this creativity comes. That's where we can, even in an hour of a day on zoom, we called it the Zoomiverse. That was the term Zeno made up, even for an hour, a day on the Zoomiverse we can plug into this, we can plug into this meaningful connection. And that's really what, um, it was neat to see like the power of Zeno in this other format when we sort of knew that, but it had a new potency with just getting to see Jeremy and the Zoomiverse, and, and still have that sense of belonging and connection.  

[Doug]: And like you're saying, when you have something that, you know, runs as deep as like the ethos that I'm understanding very clearly that Zeno Mountain Farm is, certainly even something as big as a pandemic isn't going to stop kind of the heart of it. And I understand, you know, one of the ways in which you're using technology moving forward, very soon is to do, you're doing a virtual dance-athon. Do you want to, do you want to tell people a little bit more about that?  

[Peter]: Yeah. We want to plug it and, and invite everyone to join us. Literally everyone on the planet can come this year. Uh, but we are, our big annual fundraiser is a, is a dance marathon. And, uh, we typically do it here, um, at our facility in Vermont, in our big barn. And it's a, it's a 24 hour dance marathon that people do, um, in teams or individually, we have a lot of folks who come and actually do the whole 24 hours. It's come one, come all. And you, you raise funds much like, um, you know, people do when they run a marathon or whatnot. Um, and this year it's, it's virtual we've, we've stripped it down to a four hour virtual extravaganza. It's a Halloween theme. Uh, and then, and then there is a caveat, cause we do have hardcore dancers where we're going to do a dance till you drop competition. Um, so after the four hours you keep going and you can win a big prize along the last one.  

[Ila]: Yeah. This year it's on October 24th, from 6:00 PM to 10:00 PM. And the dance marathon is such a Zeno event, you know, as our main fundraiser, um, we don't have a fancy auction or, uh, we do this is like people can come and get a taste of Zeno and dancing is such a great thing to exemplify the diversity in the community because everyone's dancing is unique to themselves. Everyone dancing brings energy to the group. Everyone's dancing, helps pump other people up that are dancing, you know, everyone's dancing contributes and it is so much fun. Jeremy's come.  

[Peter]: Yeah. Jay, any, any advice?  

[Jeremy]: Make sure you drink a lot of water.  

[Ila]: Wear supportive shoes. But it's such as, you know, thing that like, there's no dancing is wrong, no dancing is worse than other dancing. You know what I mean? We all, we all can and celebrate and feed off each other. And so we've had a lot of fun with this 24 hour dance marathon in the past and wanted to find a way to keep it going and to keep, you know, keep the lights on it's, you know, during this pandemic as well. And we have a huge base of small donors and we're hoping that the dance marathon will continue to just bring in a lot of, a lot of small donors make a huge difference. And that's kind of always the way Zeno has made our movies and when our programs, and we're looking forward to boogeying with Jeremy. Are you gonna wear the Eagle suit for the dance marathon, Jer?  

[Jeremy]: I'm not sure like how long I'm going to make it. Hopefully it'll be up for awhile.  

[Doug]: And, and again, you, you mentioned when it was, did you mention how people can join in if they want to?  

[Peter]: We'll give a, can we give a link out?  

[Doug]: Yeah, absolutely. And we can post that as well.  

[Peter]: Yeah. You just click in and fill out a form and that's it. And then come, yeah.  

[Ila]: It would be so fun to have an increased crew and a bunch of new dancers that would bring so much energy and joy to the Zeno crew. We hope you can join.  

[Doug]: Yeah. Well, I'm, I'm gonna start, you know, drinking water and doing my stretches now to get ready for it. With the lead up there. Otherwise, if I don't start preparing now I might drop way too soon.  

[Peter]: Yeah, training starts.  

[Doug]: Well, you know, guys, it was so great to have you on today. You know, I'll just look at whatever technical glitches we have as a reason for us to join forces again. And to have you guys again, in the future, maybe, maybe around when the film is more widely available. We'd certainly love to connect with you and you know, something that, you know, I'm just personally, what I've gotten to know of the three of you, of Zeno Mountain Farm, it just, it really inspires me as, as a creative of how I can, you know, push the boundaries more and kind of work outside of traditional norms that much more in the stuff that we do at Feeling Through. So I really thank you for in many ways, pioneering a lot of things. And really just exemplifying, you know, diverse and inclusive filmmaking at its absolute finest. So it's really, really genuinely not hyperbole for me when I say that, it's really, really honest. And, you know, Jeremy, certainly wish you the best in your, in your pursuits moving forward. And certainly hope that people who watch this and watch the films that you're in call you for roles in the future. Because you really are a tremendous actor. And I thought you did an amazing job in Bulletproof and really, really want to see your diversity of roles that I know you play in a lot of the other films.   

[Jeremy]: Thank you. And I want to thank Peter and Ila for being with me every step of the way all my life and you guys are really special. So, thank you.  

[Ila]: Yeah. Thank you, Doug. We love what you're doing too. And this push also for things to be more accessible in this kind of platform is so important and it's so easy for people to not consider that, you know, and I, and I love that we're all stepping up in this area and it's, it's really inspiring to us too.  

[Doug]: Yeah. Thank you guys so much once again, and thank you for tuning in.  

[Ila]: And thank you, Erin, for interpreting.  

[Doug]: As always to our interpreters, Erin and Patrick.  

[Jeremy]: Thanks, Patrick.  

[Doug]: And to you who stuck through some of the glitches and we'll see this cleaner version up. Thank you. As always, we'll be back with another episode of Feeling Through Live next Friday, same time, same place. And until then we hope you have a wonderful weekend and week ahead. Bye everyone. Thank you. 

Feeling Through Live • Episode 24: World's Strongest Disabled Man

 [Doug]: Welcome to episode 24 of Feeling Through Live. I am honored to be joined by Cody Colchado today, who is a strongman. He was the 2015 World's Strongest Disabled Man, has 33 world championships, and that's just a small part of his story of which we'll be getting into many other elements of it. So, Cody, thank you so much for joining us today.  

[Cody]: Hey, it's awesome to be here. I'm really excited. Um, it's an honor to be here.  

[Doug]: Well, Cody, you know, again, there's, there's so much awesome stuff to get into today. But why don't we start in the, why don't we start in the beginning? Why don't you kind of walk us through, you know, your adolescence and kind of some seminal moments, you know, that happened for you in high school, that kind of really determined a lot of your life's journey.  

[Cody]: Okay. Very good. Well, before we start, you know, I want to let you know, I'm five foot eight, I weigh 250 pounds and that's full of muscle. And I have a flat top with salt and pepper hair, looks like more in the snow, you know, on the rooftop. And I have a goatee, I got brown hair, brown eyes. And so that's how we start with the deafblind. And let me tell you the story. I grew up, I was born hard of hearing, 75 to 85% hearing loss. So I thought what everybody was talking about it is what I could hear and, Oh, okay, that's what it is. Well, I was not diagnosed until I was in second grade with my hearing loss. And so, um, it was very challenging to read lips and to compete in classroom. I had a hard time understanding and hearing all my teachera, so I would get frustrated and recess was my outlet. I mean, I enjoyed having recess and I really loved sport. And when I was in elementary and junior high, my whole goal in life, what to be a professional football player or baseball player. Well, in 1972, during the Olympic games, I saw all those flags. And I saw all those athletes and I saw Alexia, the big Russian strongman and a weightlifter. And I said, wow, it took five men to carry off the weightlifting bar. And I said that's what I want to be, I want to be one of the big guys. So I'm going through my life and I loved sports and I, my mom and dad, there in Bakersville, California, said, don't put all your eggs in one basket. You got to really try other things. So that's what I did. I've tried all sorts of sports, I tried music and I tried singing and I tried different sports and, one thing that kept coming back was football and baseball and lifting weights. Well, when I had a project, a freak accident, when I was 17 years old, my junior year of high school, I hit one of those sprinklers with my back of my helmet. And I went down to less than a three to five degree, I instantaneously, I went legally blind, like looking through a roll of paper towel, and now I'm like, Oh my God, wait, what happens now? I'm legally deaf. I'm legally blind. And what do I do with the rest of my life? So I was a little frustrated and, my parents kept encouraging me, so I went to a gym and I walked into Franklin Hills Barbell Club. And I said, who's the biggest and the baddest guy here? So I walked into the gym and they said that guy over there. So I went over there and I started working out with him. I said, my name is Cody Colchado, I'm going to lift whatever you can lift, and I'll do it. Now, you have to understand I'm a little snotty-nosed 17 year old. And this man, eventually became Mr. California in bodybuilding. So here he is, he's working out and I'm working out. And I had so much pain through my whole body for a whole week. I threw up almost every day through the workout. Well, the owner in the gym kind of like looked at me and he goes, you know, young man, come on over here. I'm the owner of the gym, Glenn Halfplet. Are you on drugs or something? Why are you so angry? Why are you so upset? And I said, sir, I'm legally deaf and I'm legally blind and I'm frustrated. I'm angry. Um, I don't know what to do with the rest of my life. You know, that's interesting. I have a niece that's blind and she belongs to the United States Association of Blind Athletes. Well, this was before the internet, okay. So we wrote a letter to you in Colorado Springs to the United States Association of blind athletes to inquire more about it. So in 1985, they wrote a letter back saying, yes you have the nationals and we have track and field and goal ball. And, powerlifting, I said, I told coach what is that? He goes that consists of three events, flying bench press and deadlifting. So there I am in the gym, he started teaching me about lifting the weights and starting with the bar. And I was really bad. I was so pathetic. It was like, oh my god, I couldn't balance myself. I couldn't squat right. I kept messing up. But you know, there's a big difference between quitting, bailing, and just don't do it no more. Well, my coach said, and you know, there's no quitting in this gym. You can fail and you can mess up, but you've got to keep trying the next day. Well, Doug, I have failed so many times and I know what failing is all about, but there is no quitting. You know what they say, quitters never win and winners never quit. So I went to my first nationals and guess what? I won it. And won that first national for the blind and I won numerous records, and I got numerous world championships. I've won 33 world championships for powerlifting, for the able-bodied and the disabled. I was the first American to win the World's Strongest Man in 2015 in the standing division. But everybody said, wait a minute, wait, you're blind and you're deaf and how did you win the World's Strongest Man? Well, there are two categories, there's a wheelchair division, and then theres a standing division. And what I love about the strongman guys is, well, when you go to one of the other competition for the Paralympics and the blind and well, you know, there are so many rules and there are so many restrictions. And when we went into strongman, and I always wanted to compete in strongman, but they always say, well, people with disabilities, well we don't know if we can do this for you. And it was just another barrier. So I continue with my power lifting and then we got a phone call and my workout partner said, Hey, they are having a national championship for disabled and strongman. And, you got two months to train for it. So we train for it. I was 52 years old after all my world championships, I would ready retire, Doug, and well, I found another sport and I won the nationals, qualified to go to a Hefiner Iceland, got to meet the world famous Magnis Ver Magnusson, and Innard and competed for team USA. And I was the first American to win the World's Strongest Man for the disabled. And it was an awesome experience. And my wife and I had a great, great time. We learned so many neat things. And one of the neat things about this World's Strongest Man in Iceland, it was in the middle of the one week long Viking festival. And there in Iceland there's 23 hours of daylight. Well, everybody had a hard time going to sleep. And I said, what the problem? I don't have a problem. I just turn off my hearing aid and then went to bed, but everybody else kept hearing all the music and all of the commotion. So it was a really neat experience. People of Iceland were awesome.  

[Doug]: Well, Cody that's, you know, that you just went through so many really interesting things. And I wanna, I want to take a step back and kind of walk through some of them some more. So to go back to high school there. So, or even before that, so you were, you were born legally deaf and grew up hard of hearing. And, but you hadn't experienced any eyesight loss prior to that injury, is that correct?  

[Cody]: That's correct. I had perfect 20/20 Vision, 180 degrees. I would, it would just beautiful eyesight.  

[Doug]: And then it was this, like you were describing this kind of like free accident on the field that, where your helmet hit a sprinkler. And it was that the impact that immediately caused that first vision loss.  

[Cody]: That's correct. And, um, we were doing, what's called the Oklahoma drill. And what that is when two football players are on their back and the coaches blow the whistle and you take on the lineman and get him out of the way and you tackled the running back. Well, it had been raining prior to that. And I was the one who was being the defensive man getting ready to tackle the running back. Was hitting weight, my weight, and all that weight landed on the sprinkler system and what we have in our eyes, in back of our eyes, we have what's called the cones and rods and there's crystals. Well, when I hit the sprinkler so hard that it's in an impulse where they stopped producing the crystals, which reflects the light image in your eye to your brain. And we went to, from there, we went to UCLA Medical Center, the Jules Stein Eye Institute, and we did a battery of tests for a whole week and they come back and the doctor asked my parents, you know, Mr. and Ms. Colchado, um, I have some bad news about your son. Um, do you guys have, uh, you're both working, right? And they go, yes. And we got the job. You're comfortable? Yes. Well take care of your son for the rest of his life. That's what the doctor told my parents. And then they found out through all the blood tests and all that battery tests that I have retinitis pigmentosa, Usher syndrome two do to the hearing loss. And they said, well, you're going to go totally blind when you're 50 years old, anyway. So, you know, 17 year old that's okay. You know, just deal with your tunnel vision and your blindness.  

[Doug]: So just to recap this, so again, you were, you were born with 20/20 vision, but hard of hearing, you had this injury that caused immediate significant sight loss, and then, after going to the doctor to get evaluated, it wasn't until then, post injury, as a teenager that you get diagnosed with RP and realize that in addition to the sight loss that the injury caused, you're actually predisposed to lose the rest of your vision over time. Is that correct?  

[Cody]: That's correct. That's correct.  

[Doug]: So what your...sorry, go ahead.  

[Cody]: You know, and when you know, and you get angry, and you get frustrated and you know, you blame God. Why me? Why am I going to go blind? I wanted to be a professional football player, baseball player. I wanted to go to the Olympics. Why are you picking on me, God? What did I do wrong? So I was cynical, I was angry, I was frustrated and I didn't know how to cope with life. And, uh, you know, I, my dad encouraged me to finish high school, go to college, you know, we'll work with it. Well, Doug I've been kicked out of college four times throughout my lifetime and, you know, and through a wonderful support system, my wife, we've been married for 30 short years. She's been awesome. She encouraged me to go back, learn the fundamentals. And through all this, I now have a bachelor's and a master's degree.  

[Doug]: Well, that's, that's amazing. And I certainly want to get to all of that in a moment, but, you know, again, you were talking about, you know, just connecting the dots here of some stuff you'd already talked about, but you were saying as a young man, getting this diagnoses, realizing that you're going to lose the rest of your vision, and obviously learning all of this at a really young age, you were angry. Can you talk about, a little bit more about how you, how that anger has kind of been channeled into your weightlifting and like the relationship between anger and being in a weight room and what that's like?  

[Cody]: Sure. Um, you know, when I went to the weight room in the gym, what is great about it is that, you know, you challenge yourself to lift weights and you bump into so many things. And so you have to, my coach and I started coming up with, he would write things on my palm and tell me where everything was at at the gym. And I started noticing where all the apparatuses were, all the tree stands and where all the dumbbells and barbells, and he said, you know, you're so good. And not only that you started lifting weight, he even offered me a job. So I was the assistant manager for the gym there for almost four years. And so it gave me that confidence to go in the weight room to lift weight. And it built up little by little, it built up my self esteem. It builds up, you know, they got what the, God gave you a built in, uh, endorphin, to make you feel good. And the only way you can get this endorphin is by working out and having fitness. So once I realized, wow, I can go to gym, I can stop feeling sorry for myself. And I started having confidence with my abilities. But it wasn't easy first. I mean, it was very frustrating. Um, people, you know, you can sense that somebody's looking at you, you can sense somebody's pointing at you or look at that poor guy over there, look at that, you know, um, that individual over there. And, um, it was hard for me at first because, and it was hard on my mom and dad and my dad, you know, when I first got the cane and my dad would say, oh my God, put that cane away you're embarrassing me. And it was really frustrating. And I know it's hard for my parents, to have a son that had a disability and deafblind. But he, you know, they encouraged me and Frank encouraged me. And Doug, you have to surround yourself with a good support system. And my coach and my parents and my wife, you know, that was a great support system and going into the gym, it's it, it was an obstacle because people will look at, uh, you know, get out of my way, you're, you're a weakling, well, I started getting a little angry and a little frustrating, and I had to earn the respect of other lifters. And when you start going to competition, you know, you're very nervous. You're like, gee, I only can bench 250 pounds. I only can squat 300, 400 pound. I only can deadlift 300 pounds. People are going to look at me, you know, I'm only 175 pounds and you get all those tough, tough doubts and those, uh, emotions. And when I went to my first competition, I still have my trophy. I got third place. And it was, it felt so good to win something. I finally got something that I've lost. And my next competition, three months later, my coach said, we're going to get a state championship. And I got fourth. I said, coach, we're going the wrong way. I went from third place to fourth place. But he goes, son, you don't understand, this is the state championship of California. You got fourth place. You know, and then that's when we got the letter about the United States Association of Blind Athletes, and we went to the nationals and I won that nationals. And, you know, it's so, powerlifting built my self esteem, built my character. If, you know, there's another phrase that I go by, adversity, builds character. But, you know, John Wooden, a famous UCLA basketball coach made that, that quote adversity builds character, but I added another line to it. No, it reveals it. It, you know, you're  going to have adversity throughout your life, whether you're an able-bodied person or a person with a disability, or even any disability, mentally, physically, emotionally, whatever it is, you're going to have adversity. You know, there's many, many people are out there right now, and they're thinking, gee, I can't even get out the front door. I'm scared. And you know what, take that first step out, get out there, tell them who you are. Be proud of who you are, you know, whether you're African American, whether you're Latino, whether you're Anglo or white person or Jewish or black, it doesn't matter. Be proud of who you are. Be proud that you're a disabled person, a person with a disability and pick up your chin and be happy, be strong. And you have to fight that. I had to fight that for many, many years. I would be very self conscious by what, as a disabled person and person that's deafblind, and a Latino.  

[Doug]: And, you know, just to kind of talk about part of what you were just mentioning there, you talking about, it was hard for your family initially to have a son who is, who had a disability. You know, I understand that you have two children of your own who you'd mentioned to me recently have disabilities. How do you think being someone with a disability yourself and having gone through what is, the challenge of having parents that struggle to understanding, accept that, how has that translated into you being a father of two children with disabilities?  

[Cody]: Um, I wanna say I have a better understanding. I'm hoping, and I know the struggle that they're going to have in their life. Beause I've dealt with that. I've done, gone through those barrier. So I, I try to encourage both of my kids and they're both different. Um, Tabitha, our daughter, she has...Jolee, do you want to jump in? This is my beautiful wife and she's gonna help me out.  

[Jolee]: My daughter has a seizure disorder. Um, when she was two, she, she fell and she hit the back of her head. Uh, actually a puppy, German shepherd puppy jumped on top of her. And, um, she got a contusion and that seemed to bring on seizures that lasted 40 minutes straight to start off with. Yeah. And, um, that since then she's continued to have seizures. Um, she's got she's on medication. Um, she also has a dysgraphia and she has learning disability. Um, my son, when he was born six years later, he was a surprise, he was born was something called Moebius syndrome. He has a, um, no facial expression. Um, his muscles are not, uh, sending, um, his nerves are not sending messages to his muscles so that he can smile or frown. And he has some learning disabilities as well. Um, you know, as being a, you know, when first I had to deal and accept Cody's disability, when we got married and I knew there was a possibility, and even we still know that he can go completely deaf and of course he's totally blind. So we knew that we would have to make some changes as life went on because, um, he would continue to lose sight some sight every time. And every time he did that, we went through the stages of loss, angry, get frustrated, and then to a certain time we would accept it. So when he went totally blind, it was like, okay, the cycle's already kind of over with. It doesn't stop when you have a child with a disability, when you're, when you have a child that is born and you know that they're going to have a disability, you go through those stages again, um, stages of loss. And, and it's just that, we need to see things we, we have, uh, in our mind's eye, we see things a certain way and those stages of loss, or when we realize the reality is not what we're seeing. And it's an ongoing process, uh, even as a, um, uh, based all their challenges. And we tried to adapt to everything that was going around. Um, we, now that all the kids are older, it's, it's like, um, things are calming down with all those emotions, but now as we're all aging a little bit, there are going to be other, there are other things that are starting to creep up and I can kind of, it's like, you're looking at the thunderstorm coming and you know it's there and you know you're going to have to deal with it. And, uh, you know, at that point I'm seeing it come in and I'm going to have to go through some of these stages again, and we're going to have to go through it. Because if I don't, if we don't support each other, then we become against each other and that doesn't help anything.  

[Doug]: Yeah. That's, that's really beautifully put. You know, Cody, as your wife was just talking about, you know, something that we've certainly talked about on this platform before is battling, is battling depression and loss. And you know, that was obviously something she was just talking about as far as, you know, your collective journey as husband and wife and your personal journey. Do you want to comment on that personally, as far as anything you'd like to add to that topic?  

[Cody]: When you first start out, you don't understand, and when you go get your college education and you take different courses in college and you begin to understand, oh, this is more normal and this is, this is the problem, the reason I'm going, went through that. And when you take sociology and psychology and anatomy and physiology, and you read more about it and people and going to college, I had to depend on, trying to not get off track. But I had to depend on a lot of individual to help me at the university and the university had a student with a disability office, but the technology wasn't like we have it now where we have a lot of text on, on books on audio descript, or we have a lot of things on our, on our smartphone and computer. There wasn't that many technology available to us other than a CCTV and a cassette recorder. So I depended on a whole lot of things, individuals, and I had to, uh, communicate with them and I was 35 years old and I would like, well, I can't, I can't communicate with you 17, 18, 19 year old, young adults, but they were very patient with me. And I had to learn to be more grateful. And I had to learn to be more patient and be more accepting of individuals because when you are an athlete, you set the tone, you set the page. You set all the the criteria and the bar. And I always had high goals for myself. And I set my goal at a hundred percent every time in everything I did. Well, sometimes there are other individuals out there and said, well, you know, we have to order the book and that takes two weeks. And then we got to get the cassette recorder and then we have to get different people to read the book. Well, hello. I got a term paper due tomorrow, you know, so it took different individuals and many different trials and errors to get what I needed to be successful in college or, and, but, it's very, challenging and it can be done, uh, going back to my disability and, when you learn about your growth, um, it was extremely frustrating and extremely, uh, I would very bitter at society. I would very, uh, frustrated. I try not to let that negative Nancy, so to speak, get into my, uh, train of thought, because you want to be a positive person, a positive individual. So it took a while to accept that, okay, I do have limitations and I just need to curb my frustration and limit that time in frustration. Um, what I do, I give myself when I would learn I lost my eyesight, I kept calling, Jolee, where's this? Jolee, find this. Jolee, where did I leave? And she goes, no, no, no, no, no, you got 15 minutes and you must look for it for yourself. So she made that challenge to me to go find what I misplaced to find where my books and my backpack. And she goes, you know, you're making it really hard for yourself. You know, sweetheart, you lose your wallet, your phone, your backpack, every time. Because when I came home from school, I used to throw everything all over the house. And she as a special ed teacher, she realized I have to teach him to be more independent and through trial and error, she helped me become more independent. I know where my wallet is. I know where my keys are. I know where my phone is. And, and, and so you, it's a give and take.. And I know parents are out there right now, or spouses, they're probably shaking their head. Oh yeah. I know what Mr. Cody is going through, because we're going through that. Sometimes you just got to give that person, it's okay to fall down. Uh it's okay that they bumped themselves and the door. It's okay to trip over a step. We have to get up. We have to find the things and we have to learn to be independent. And it's tough. Um, my parents wanted me to do everything for me. And that was very, that was their way of knowing how to, they wanted to do everything. With my children we've given that little leash so to speak. And no, you'll have to try it yourself. We could teach you, but you have to be independent and you have to learn. It's okay. And I know they're going to fall. And I know that my son's got to bang his head on something. And you just, you know, it's like, uh, like a cartoon and Mr. Magoo, you know, somethings gonna happen and you close your eyes. Well, that's the same thing with our kids. Because I experience it, And Jolee experienced it. Jolee, you want to?  

[Doug]: I'm going to just, before you get to that only because I wanna hear, I'm going to do a quick interpreter switch. Okay. Alrighty. Jamie, could you step just a little bit to your right there? Perfect. Great, great. We're good to go. Um, so yeah. Sorry, Jolee continuing.  

[Jolee]: I'm sorry. Um, one of the things that you mentioned was about the depression. Um, one of the things I remember is, um, when we were in California, he was, um, basically denying, uh, a lot of the things about his vision and he would, he felt like he was hitting his head up against a wall, started to go back to college. His frustration was, he was losing, he lost that independence. He had, he couldn't just drive anywhere anymore. Um, so this guy  would help take him to college there and he was learning to use the bus system and everything. Well, my dad had passed away. Um, and I asked him if we could move back home with my mother at that time as my dad and my mother were very close and I was very concerned. When we moved, and he said, yeah, let's go ahead and move. So we moved over here and that added to the frustration that he had. Um, we rarely talk about this, but he became so, um, angry at first and, and I, and we discussed it, you know, I made sure that he, it was something he wanted to do as well. Not, I didn't want to pull him somewhere. And, um, he became very depressed, um, because we, we don't live in the city and, um, it, it began to take over and I remember going to work and he would be in bed and I'd come home and sometimes he'd be in bed. And I said, no, I'm not raising, you know, my daughter myself. You are going to get up, you're going to do something. And it was difficult. It was very hard. Um, he, he, he went through a very, very dark time. It's, I'm not sure what exactly turned him around other than the fact that, you know, I had to, uh, make sure I didn't feed into that and try to pull him out. Um, he wanted to talk about taking his own life and I understood that, but I made sure he knew that he was part, I mean, we were together in this and we had a daughter to take care of and, you know, we were, we're living with my mom and it's like, that's not an option. Like, I don't even know why you think that's an option here. So, uh, I, I'm not exactly sure, like I said, what, what it was, but, um, I mean, you know, it, it was just, it was extremely difficult. I think it was like three or four months, or maybe longer that time.  

[Cody]: It was six months or more.  

[Jolee]: Yeah, it was a long period of time. I think, I think everyone goes through those times and you get some to the point where you realize, hey, something needs to change. And that's me, that's us, you know, I'm thinking.  

[Cody]: Um, one of the things, Doug, that, you know, I was going back to, uh, university of Texas Pan-American, one of my professors, and it was just like, okay, um, one of your assignments is to write a small brief story about yourself. So I, I said, wow, there's nothing to say about myself. And so I started writing a little, okay. So I like power lifting. Yeah. At one time I won the national championship. And I won a world championship in power lifting for the blind, and it didn't mean anything no more because it would very frustrating. I could tell I was losing more of my eyesight. And, and, um, when I finally, you know, the professor, when I got the paperwork, I'm really proud of the paperwork and my term paper. So I turned it in and a week later to professor pass it back and he read all the people, who's a paper and, and gave them really high marks. He goes, Mr. Colchado, meet me after class in my office. And I said, Oh, no, I'm a lot of trouble here. So I looked for my professor's office and sat down. And, he just said, you know, you wrote a beautiful story, but you had a lot of grammatical errors. And, you know, you had a lot of subject verb agreement and you've got a lot of, you misplaced commas and periods and quotations. And I'm looking at like, I'm sorry, sir. I don't know what you're talking about. You know? And, and you know, when he explained what I was doing, oh, okay, subject-verb agreement. Okay. I understand about the fanboy and, Oh, okay. Uh, so on all these grammar and we correct him, but what I appreciate, professor Derek Panam, he was helpful. And he understood because he was an athlete and I was so grateful for him and, and he just said, you know, I work out too and I'm going, Oh, okay. And I thought maybe a couple of dumbbells, but no. Um, he said, well, meet me in the faculty weight room when I'm like, uh, I'm only a student. That's okay, we'll get you in. So we walked out, we worked out, we met and, and, uh, professor Roberto Contrares and he was my teacher. And professor. And he started, I started teaching him everything I knew about lifting weight and he got stronger. And, he was teaching me everything about life and about family, and, what does it take to become a good college student and what did it to become a good individual. And we became great friends. And, um, uh, we went to a lot of competitions together and he drove of course. And then, and yes, I got all the accolades and I got all the atta boy, and you're amazing. You're inspirational. But a lot of it, also, a lot of people went up to Roberto Contrares and said, you know, that's amazing that you took him under your wing. And we kind of helped each other through it because he helped me through a lot through life and dealt through Jolee and getting my self esteem and my confidence and Mr. Roberto Contreras. And there's many other, other professors. I have to tell you about this one professor, I was try to do a fundraiser to go to Europe, to Holland, to a world championship for the blind. And this one professor, I walked in there and I said, you know, sir, I have a hundred dollar bill. If you can lie to being a blind person for one whole day, that hundred dollar bill is yours. If not, you're going to help with my fundraising. And he goes, okay, I'll take that challenge. And so I said, thank you, Dr. Gilpen. So he gets a phone call and he tells his wife, Oh, yes, I'll meet you over there. I'll I'll. Then I said, Oh, you better call your wife back. Remember, you took the challenge. You are blind now. And he goes, what? I thought we were starting tomorrow. I said, no, we're starting right now, Dr. Gilpen, you are now blind. So I had an extra cane and we walked through the university with, I blindfolded him, and he ran into the road bushes. He ran into shrubs. He ran into a bench and I said, Dr. Gilpin, where are you going? Goes, I'm going to the men's restroom. And he goes, no, sir, you're going into the women's restroom. Coach Cody, how do you know all this? I'm a blind individual. I have to learn everything. The landmark of the whole university. And he goes, what? We blind people who don't have people walking us around. We have to learn everything about this university. So he goes, and we finally get to the student union and his wife finally meets us there. And he is sweating bullets. And he's just like soaked with sweat. And he goes, okay, Mr. Colchado, how much money do we need to raise to go to, for you to get you to Europe? I said, well, we need $2,000. And he goes, well, I'll start getting emails. And the university helped me out and all is because I did a little bit of self advocacy. And, so we eventually turn the perception around having blind people and people with disabilities there at university. And it just takes one individual, one person at a time to do all that.  

[Doug]: You know, I want to get a little bit more into the specifics of the weightlifting and strongman competitions. You know, as, as a young man, I grew up watching a world's strongest man competitions on ESPN 2. And I remember, you know, looking up to Magnus Ver Magnuson and all those, weight, huge, massive, strongmen of that time. And just, you know what I thought, what I find so interesting about particularly the strongman competitions is you're not just lifting so much weight, but they're lifting such awkward things. Like that's like, they're not lifting like barbells and weights. They're lifting boulders and cars. Can you, can you walk us through a little bit of like what a strongman competition looks like and what kind of events you're partaking in?  

[Cody]: Oh yeah. I'm strongman. There's five different events and usually one of the events is always pulling a car with a rope. And the other event you're using your shoulders and usually doing Viking press or dumbell presses with different obstacles. Um, it might be a log, a wooden log. It might be a fire hydrant that you got to do shoulder presses with. You might be, you might be holding one of those heavy, heavy, Excalibur swords in front of you or a mariner Thor hammer. Another event is that you got to lift a boulder and usually the stones, they're called stones, thats the last event. And another event that we might be doing is you'd be walking with something on your shoulders and that's called a yoke. Well, you know, and another one is using, your lifting a back end or front end of a car. You're, deadlifting it. And, one of the, I love deadlifting and I have to share this story. I was at the national championship. And the deadlift is when you have the apparatus at your knee and you grab the bar or the apparatus and you stand straight up, and usually it goes, you have to be back straight, knees locke, and usually the weight ends up at your, at your top of your thigh. And, uh, so if you have long arms it's great. If you have short arms, well, you know, you'll be a good bencher. Well, one event we were deadlifting a car and they give you five minutes because the people with different, different disabilities, they give us an opportunity to feel the apparatus, like myself being blind and feel the whole car that we're going to lift and get yourself situated. And I got myself psyched up and I tried to budge this car and it wouldn't move. And I'm like, I went to my coach and my coach said, what's wrong, Cody? I said, uh, it's heavy. I can't move it. Cody, it's a car. It's supposed to be heavy. I said, okay, you know what? I've been drinking too many Gatorades. I'm really nervous. I need to go to the men's restroom. So I grabbed his elbow, we go to the men's restroom. I get in a stall and I go, I said, oh, dear Lord, give me the strength to do this. Oh, I don't even think I can do this. So I, I did my business. I washed my hand. I go back out there in the hallway and my coach said, are you ready? And I said, I think so. And he goes, what? And so, and a young lady come out and she goes, woohoo, alright! I lift the car six times. And I'm like, Oh no, a girl lift the car six times. So I'm like, okay, did you hear that? Yeah. You're going to let a girl beat you. No. So there I am. I'm getting all psyched up and I grab the handle and I go, Cody, don't stop until you get to the lockout. So I'm lifting the car and my knees are shaking. My body is shaking. I said, don't stop. So I stand up with it and the judge says, down, and now it's one. I said, oh, okay. I got one. And I kept going. Two, down. I kept going. Three, down. And I said, okay. I got it. I'm in the groove. And I kept lifting, I kept lifting. Well, the problem is I stopped breathing. And I was getting a little lightheaded. And I'm going, uh oh, I better stop. So I stopped and I caught my breath and the guys in the wheelchairs were coming up to me and tackling with my legs. And the other guys are hugging me and I'm trying to catch my hearing aids because they're falling out. And I go, well, how many did I do? And they all screamed 13. Well, how many did I need to do? One. Nobody could lift the car. So I did 13 reps and all I needed to do to win that event was just do one rep. Well, a year later, oh, now I won the competition. And a year later we're at another, we're at the same competition but the year later, and she goes, she, her name was April. And her husband is the meet director. And she goes, you know, we have to tell him, and we're having dinner after the whole competition. And he goes, we need to tell coach. And he goes, well, we need to tell coach Cody that it was me in the hallway, trying to tell him that, uh, I was the girl that lifted six, six times. And she goes, you know, nobody was able to lift the car. And I go, how come nobody could lift the car, and then later somebody, before I lifted? And April goes, it was me that told your coach, and my husband told me to go tell you that I lift the car six times. So I guess the moral of the story is that the joke was on me, but the last of the joke was on them because I won the championship and I get, you know, sometimes we put limitations on our ourselves and other people believe in you. So you have your, you know, once you start believing in yourself, you can lift anything and do anything. So that's one of the stories that I wanted share and, uh, it was an amazing feat. And, and it would pretty awesome feeling to know that I can lift a car up.  

[Doug]: Yeah, certainly, so I guess at the end of the day, she was just trying to fire you up right. To get you going.  

[Cody]: Exactly.  

[Doug]: Yeah. Apparently it works pretty well. I think you need her at all of your meets to, you know, to fire you up. But, you know, I'm curious, what, how can you tell me specifically how, like world's strongest disabled man competition works. Is it, you'd started to get to this, but like, tell me a bit more of like the, how many different, how many different people with disabilities are competing or who have different disabilities and kind of how it's, how the event is organized. And also the second part to that question is, you know, what's the vibe like there, as far as the competition versus supporting one another.  

[Cody]: Okay. Um, the different disabilities in the sitting division, of course, there's people that have spinal cord injuries, people that have cerebral palsy, there's people that, or, spina bifida, some of them have nerve damage in their, in their, legs or knees and or their back. So they're in the wheelchair division and there is no restriction. Once you, and you might have an amputation, both of your legs might be amputated, or one leg might be amputated, but those guys, they have a choice. Once thing make a decision that they're an amputee, with one leg, they have a choice to be in the standing division or being in the wheelchair. But once you make, you declare that, you have to stay in that division. You can't just switch after three events and say, oh, I'm going to be in a wheelchair to start with and then, I can beat these guys in the standing. No, you have to stay all five events in that division. And the standing division, once again, you're going to have an amputee. You're going to have a one arm amputee. We have a gentleman that served in the US Marine Corps and he had an improvised explosive device blow off his arm. And for many years he started, started doing weight lifting. And then he got into the strongman. And it's incredible what the standing division can lift these stones with just one arm. And how he does he gets down on one knee and he rolls up the stone on his leg, and he was able to grab it on his thigh and then lift it up to his chest and get it to his shoulder and throw it over his head. We had another individual who played in the National Football League, his name is Chad out of California, Fresno, California. And he played for the Oakland Raiders and for the, I believe it's the Washington Redskins or Seattle Seahawks. He's six foot five, he weighs 315 pounds. And Chad's brother saw me in a video lifting weights. And I like to encourage other people with disabilities that they can go and compete. Well, it his brother saw the video and he went to the national championship and one year we got into the apparatus and I was really fired up. And I was really doing really well. And one year I did the particular Viking press for, pointing, oh, 17 reps. And that was my first year. Well, the following year I did 31 reps. I'm going, wow. I doubled my reps. I'm really good. I'm doing fantastic. I think I'm in first place. And all of a sudden this gentleman named Chad, he does 51 reps. And I go what? There's an individual here that did 51 reps? And they go, yeah. So my daughter, Tabitha, was with me and Tabitha said, dad, this guy is huge. And I said, oh, Tabitha's just exaggerating. Well, when Chad came up and after the competition, and we did the competition and I noticed his voice was really high and I'm like, wow. I'm like, I must be listening wrong. I might be hearing wrong. Well, he's six foot five. And he goes, um, Mr. Cody, can I talk to you? And I said sure. And I was like, I stand up and I was talking to him and, you know, um, Cody, my name is Chad. And, um, and, uh, I have to tell you, um, you inspired me. And I said, well, God, Chad, you know, I didn't realize. And then, you know, I didn't realize that he was so tall. So I said, Chad, can I see how tall you are? So I put my arm on his chest and went all the way up to his shoulder and I just kept going up, kept going up and I'm going, holy cow, this man is massive. He's huge. So I said, Tabitha, give me a chair, a folding, uh, a chair that I could stand up. So I stood on top of the chair and I was finally looking eye to eye with Chad. And he goes, I have to give you a hug. And I said, sure. So when he gave me a hug he goes, um, Cody, I saw your video. I had one leg in the grave and I was not gonna make it. And I said, hey, Chad, you only have one leg. You have, the other leg is amputated, remember? And he goes, you know, that's funny, you know. So, you know, Chad and I are good friends and he became the World's Strongest Man. So he was the third American to win the World's Strongest Man. And, you know, it's really neat to see people with different disabilities and different meet directors and different sponsors coming out and supporting people with disabilities. You know, it's more readily available now. And it's more accepting now, you know, for the belonging and for the, for people who are blind and doing sports strong event, you know, they look at it like, oh, you guys are freaks. You guys are different. You know, that's not what a blind person is supposed to be. They're supposed to be frail, and thin, and so when you see an individual that's big and strong, it don't fit that image, that box that, that society wants to see. And, you know, we want to just be healthy. We want to live healthy. We want a healthy lifestyle. And that's why we do power lifting and strongman. Because to me, it gives the strength and the courage and I hit a lot of obstacles. So when you're strong and muscular, the obstacle don't hurt as bad.  

[Jolee]: Just, just to kind of finish up on that. When, when I'd been to a few of the complications, cause they were seasoned, I had to help him. The thing is that the people, the camaraderie there is very different from other complications. Everyone is cheering for each other because they know how much they've struggled in everyday life. And, just to see someone competing, just to be there is, is such an incredible feat for these athletes. Uh, just for them to continue to lift weights. There's so many obstacles, there's gentlemen with ataxia, with, um, it has, uh, you know, they never know what's going to, you know, what's in their future. So this is basically for the now. And so the athletes encourage each other and different countries. And it becomes more of a comradery that I haven't seen in any of the other types of competitions. You know,  

[Doug]: You, you've talked about, you know, you were talking, Cody, about the significance of being a strongman to yourself, of how it's, how it's been a place for you to channel, you know, initially your anger and frustration of, you know, your disability and the challenges that that created. And, also what it's meant to other people in the competition, the way you connected with Chad and how you, how you really helped inspire him to turn his life around and the connections that you all form at these events with each other. And you know, what Jolee was just talking about, of that comradery at the events. What do you think it means to other people when they hear the title World's Strongest Disabled Man? What kind of specifically, you know, adding that disabled part next to world's strongest, two kind of, like, terms that don't feel like people normally associate with each other. What do you, what do you think that means to other people when they hear that title?  

[Cody]: Well, it, it depends if the individual has a disability or if they have a family member that has a disability, or they know somebody. They think it's fantastic, they think it's awesome, you know. And then a person that don't know what, what it's like to have a disability or know a family member that has a disability, they think it's neat and it, you know, and then after a while they start realizing, wow, that is awesome. That is neat. You know what I'm saying? And then they go, I didn't even know, you know, I had an image. I saw you at like that book with the cover, you know, I saw you, I put you in a box right away. I didn't realize you were the World's Strongest Disabled Man. And so it changes their perception about us and about me. And, and it's hard. It's hard at first because, you know, when people see people with disabilies they pity you a lot or they don't show that empathy, now. Now it's much different in the 2010, I'm going to say in 2010, and now I think there's more acceptance of people with disabilities. People that win at World's Strongest Disabled Man. When you win the world championship, they say, yeah, you earned it. Yeah. I have a lot more respect for you. At first there were no, it was almost like, the Special Olympics. Well, we'll give a metal to every individual. Now they understand you have to earn that title. So yeah it's kind of ironic that you brought that question up. It's much different now than it was 10, 15, 20, 30 years ago, you know. It's trying to earn the people's respect. And that's all we're trying to do. I want you to respect me as much as I respect you. So, and, people, people are now more, they understand your struggles and they understand, they're, it, it takes people like you. And people like Helen Keller National Training Center, people like Camp Abilities, people like optimist Brown Use Association and, Seabeck and, different blind camps around the United States and deafblind camps and the deafblind projects, different organizations, just getting more and more people to be more aware of people with deafblind and blind individuals. So, and, they're all different.  

[Doug]: You know, Cody we're out of time for today. You're, certainly going to have to come back at some, some time. I know we didn't, we didn't get to a lot of things that I know are really interesting as well. But I also want to say that next time I'm in Texas, you're going to have to give me, you're going to have to give me a workout and show me, show me some new things.  

[Cody]: That'd be awesome. I'm here to pump you up. I'm wanting to pump and I'll be like big Jake. You'll be like big Jake and Jake, Jay Leno Show. I'll Arnold and I'm here to pump you up. No girly man on this show. No girly man.  

[Doug]: You got to take it easy on me though. I can't lift cars yet.  

[Cody]: It'd be an honor, and, you know, and we'll make the workout where people can, there, our audience and people on the internet, they can go get a water bottle and do a workout, a simple workout. And it'd be awesome. It'd be, it'd be a neat thing. I would do it.  

[Doug]: Okay, cool. You're giving me an idea to a, we'll have to film a workout video for you and put that up there for people. So maybe we'll, we'll get back to that. We'll talk about that, but thank you so much for joining us today and sharing your story. And, you know, certainly, you know, as someone who obviously connects with a lot of people in the deafblind community and someone also in myself who like really loves sports and, you know, really, stories of people pushing themselves to their physical limits, it was really a joy to hear your story and how those aspects of your life work together to create, you know, truly a very unique life that you've lived, and, you know, one that's really, really been a pleasure to chat with you about today.  

[Cody]: No, I thank you for helping me share my testimony and my story to everybody. And Jolee, would you like to thank?  

[Jolee]: Um, I just, yes, I appreciate you because, um, we didn't have people that we knew who were deafblind. We didn't know what, um, we were putting limitations that we shouldn't have, you know, and that's one of the things it's just opened people's eyes to, um, the fact that there's, the sky's the limit. Truly.  

[Doug]: Well, thank you Jolee for also joining us today and sharing that and thank you to all of you who tuned in today. We'll be back again next week as always with another episode of Feeling Through Live, same time, same place, and until then have a great weekend. Bye everyone. 

Feeling Through Live • Episode 23: Caption This...

 [Doug]: Welcome to Feeling Through Live episode 23, entitled Caption This. You might've heard that cheeky saying, but, as the comment beneath a lot of pictures online, but we're more referring to captioning and other elements of accessibility that we'll be talking about today, I have the distinct pleasure to be joined by Phil from Ai-Media, Phil. Hello, happy Friday.  

[Phil]: Hi. Nice to, uh, nice to be here and appreciate the opportunity Doug.  

[Doug]: Well. I'm, I'm really excited to have you here today and talk about, again, a lot of elements of accessibility, but you know, first and foremost captioning and what I'm really excited to talk to you about it is you're someone who I understand is been in the captioning game for, for about three decades now, seeing it go from I'm sure, quite a lot of changes over that time. But before we hop into all of that, I'd love to just know how, what got you into that field in the first place?  

[Phil]: Um, well, I've never heard it put quite that way, three decades. You're, you're making me feel pretty old here.  

[Doug]: You started when you were six years old, so.  

[Phil]: Yeah, exactly, exactly. Uh, so yeah, you know, I just happened to kind of be in the right place at the right time. Uh, I was in, I was in college. Um, I was working in the media center, uh, at our university and uh, some folks wanted to create Christian media for people who were deaf and hard of hearing. And I was working with them to set that up. Now when, when that first started, this is back in the eighties and the late eighties, uh, it was an interpreter inset in the corner of the screen. That was the kind of the standard method of accessibility. Um, and, and we began at that time again, late eighties, um, putting captions at it was really more, a matter of subtitles.  

[Phil]: That's kind of how it started was subtitles. Um, and then, uh, it quickly emerged into, what's known as line 21 closed captioning, uh, that that really kind of got it's its footing, uh, it's grounding in the late eighties. And, and, uh, you know, you started to see some programming on PBS, uh, public broadcasting that was captioned and so forth, uh, and, it began to, uh, kind of emerge that way and then continue to grow. So it was still kind of a specialty thing. It was incredibly expensive to do, uh, like, like a comparison of at that time it was probably $1,500 an hour or so, uh, to caption as opposed to now it's around a hundred dollars an hour, depending, you know, on, on different options and so forth. But, uh, it was extremely expensive, labor intensive and so forth, but that's kind of where it started and where I started.  

[Doug]: Great. And then, you know, I guess, um, you know, there's, there's a lot to talk about here, you know, given, given how much things have changed since then. Um, but can you talk about, you know, what are, what are the primary changes that have occurred over that time that you've been in that space?  

[Phil]: Sure. Well, you know, I, I think from an actual captioning standpoint, when, when you think of television and media, uh, it went from a few select programs being captioned to the Telecommunications Act, which, which basically requires all programming to have captioning on it. Uh, so, you know, I mean that really opened up, you know, a couple of shows to, you know, however many shows are on your cable network now, uh, that, that have captioning. So the actual market of television captions exploded. Um, but that really is only one area of captions that we have seen, you know, that, that kind of has been the, uh, if you will, the lead generator, but, but what we're seeing is, and I've shared with this, this with you, uh, when we kind of had a pre-conversation, but I, you know, captioning is really becoming, what I would say is a universal design concept. Uh, you know, you would, you would never build a building nowadays without an elevator, but elevators were not just to make it easier for everyone to get to multiple floors, elevators were designed for people using wheelchairs primarily.  But now you would never think of building a building without an elevator, same with curb cutouts in downtown. You know, I think that, uh, people pushing strollers and bicycles and even skateboarders would say, they love the fact that there are curb cutouts, but those became, those are standard again, right? They're universal design. So that downtowns and city streets are accessible to wheelchair users, scooter users, and so forth. So, you know, those are all things that have become universal design. I think captioning is very much the same way. Uh, I, I'm a walker. I go out and I walk and I, I'm not, I'm not creeping on people's houses, but I'll walk by and I'll see television sets on and people's homes. And you'll see the captioning on, a lot of folks keep the captioning on all the time. Uh, it helps in understanding it helps with reading skills as well as obviously general accessibility for caption users. So you're seeing all the television material captioned and used, that's bleeding over into the workplace. Uh, people are saying, uh, I have captions and accessibility at home. I want the same thing in my work environment, uh, my play environment and so forth. So you're just seeing captioning grow tremendously throughout the marketplace.  

[Doug]: So obviously you mean really painting this picture of, you know, it being something that was really quite rare, cost-prohibitive in a lot of ways. Um, and really not just really just not the same awareness around it when you started to now it being really ubiquitous with all types of content, and something that's really, um, used by a lot of different people for a lot of different reasons. Can you talk a little bit more about from, from your perspective, what, what were the key factors in really transforming people's awareness and understanding of captions? Because I'm sure it didn't just happen like this where one day it's, you know, people hardly know about it and think it's useless and the next day everyone's using it. Can you talk about some of the key things that played a role in really transforming people's awareness around it, to it being this thing that's everywhere and used by all different kinds of people for all different reasons?  

[Phil]: Right. Well, I think Doug, one of the major factors has been the ADA. Now I am not an ADA expert by any stretch. So I, you know, I don't want to come across that way. And, and if I say something wrong, I don't want people upset with me because I, I am a self-professed non-expert in that area. But, but I think that the, the overall, ADA, inclusion aspect and growth in the United States was a huge factor. I mean, telecommunications played a role in the ADA. I mean, there's a whole division on telecommunications and that's part of the reason why television, uh, became accessible. I mean, I wished the networks would have decided to do it on their own, but they really didn't. The government told them they had to. And so, you know, as I think as people with disabilities, uh, were able to experience new opportunities in the workplace, accessibility, mobile accessibility, and so forth, you know, the whole concept of inclusion, and accommodation became common terminology in the work environment. And I mean, captions are just one of those pieces, uh, when, when it comes to an accommodation,  

[Doug]: You know, and yeah, we've certainly had the opportunity to talk a decent amount about the ADA in this format and this, uh, on this platform. I am also not an expert, but I've certainly learned a lot over the last several months, particularly since we've recently celebrated the 30th anniversary of the ADA. And I love, you know, you're in this really interesting and unique position in that you've kind of, you've known this space since really kind of right around the start of the ADA through now kind of really spans the, the life of the ADA. And it's, I think it's, though something that we talked about when we did some special episodes around ADA 30, the 30th anniversary of the Americans with Disabilities Act, where, you know, certainly some of the discussion is like where we still have to go knowing that, you know, not everything has been accomplished. It is nice to know with captions as kind of a microcosm of an example, how much progress if you will has been made from say day one to day, however many days are in 30 years, is, is really encouraging to know. And I think that sometimes particularly people who are on the front lines of advocacy, from the disability community are often very much, probably in the space of seeing what, have to really dwell in the space of what hasn't happened yet or what needs to get better. But I think it's also a good moment to look back again, through the lens of captions and go like, wow, there's been some pretty significant jumps from, from day one to now. You know, again, I loved what you were starting to say about how the ADA, the ADA had played a large role in starting to shapepeople's, understandings and change awareness around all aspects of accessibility, captions included. You know, I love when we got to connect before you gave that analogy of that, I forgot what city it was and the conversation about curb cutouts with, I believe it was the mayor. I think that's such a great analogy to show, um, kind of that illuminates a lot. Can you, can you share that with everyone?  

[Phil]: Sure. That the story, the story went, there was a, an advocacy group who were, uh, petitioning a city mayor to develop curb cutouts in their downtown, and the mayor responded by stating I don't see anybody in wheelchairs, why do we need to make curb cutouts? And, and so, uh, that, that really, I have heard that story used in, in many opportunities when it, when it comes to, uh, an inclusion kind of aspect, I mean, it really becomes kind of a chicken or egg, or we're not going to see, uh, you know, inclusion if, if we're not, uh, providing the opportunity for people to be included. Um, and so I, I think that, um, captioning has kind of played a major role. I wanted to, um, elaborate on that because I think that one of the things that's important to note is, you know, people have gotten used to it on their televisions, right. So, and as I had mentioned to you there, uh, it was carried over into workplace, also carried over very heavily into the academic setting. Um, that's probably one of the areas where we have seen the greatest amount of growth, um, is, is within the academic arena for students who have wanted to go to, uh, educational institutions. And when we, when I first started in this, uh, captioning also known as, as CART it's kind of a, uh, a derivation of captioning, but, or, so it's, CART is communication access realtime translation used typically in a, in a one-on-one communication standpoint or in a larger room. And, what, what is kind of happened with that when we first started in this industry, because of the cost, cart was only provided to, I would say master's level students or above. Okay. It was kind of like, that was now how these folks ever got to the master's level. I don't know, uh, from a struggling standpoint, but the powers that be felt that it was, that was an appropriate time to invest into that group was when they were that when they were advanced level students. So we saw that, then we saw it go to the point where it was all undergraduate students had access to these services. And that is still where there is an extreme amount of services okay, being offered. Now we're seeing it in the high schools. Okay. We're seeing the benefit of text services for people, with hearing loss, having to communicate in a larger group and so forth. And, and we had seen the services now being used all the way down to about the fourth grade. Um, and, so the, that entire kind of group of people continues to expand on who can benefit. And we also talked about this and in our, prior phone conversation, but there's, I have found that there's, there's two groups of folks who utilize captions. There are the people who are appreciative and thankful, and there are the people who say, why did it take you so long? And, and many of our younger people, while they are appreciative, I believe that they truly are appreciative, it's just simply an expectation that things are going to be accessible, whereas population my age are, they remember when it wasn't accessible at all and are appreciative of all the opportunities that take place. Doesn't mean that they're content. I am not going to overgeneralize. I mean, I think that folks still want to see more inclusion and more opportunity. But, uh, and it's kind of interesting, those two groups of people, those who are like, wow, I remember when, and those who are going, I can't imagine when, you know, that kind of thing.  

[Doug]: And it's, you know, I think it's that, that expectation that younger generations have now having had, being able to grow up with it, being a lot more part of their lives because of the changes that have started with, or were really, amplified by something like the ADA and how that started to shape and mold perceptions in society. So, I mean, I think there is something, you know, what's really great about when you get to that next generation where it's expected, it becomes so embedded in the culture in a way where I'm sure it really helps it become that much more prevalent. And it kind like has this snowball effect, when people have, when people go from being like, man, it's great when we can have this thing to, oh yeah, we should always have this thing. It definitely helps ramp that up. So I'm sure that's, this kind of next generation that grew up with it, I'm sure it's really helped move it to the next level as far as prevalence.  

[Phil]: Absolutely. And so, you know, Doug, kind of, a quick side story. So I volunteer at our local high school as part of their business incubator program. So I get to work with high school students and, and, we develop business problems and solutions. Uh, it's an exciting opportunity. So I can remember when I first went into the high school and, I was like, hey, let's grab some paper and let's write this down. And they all like looked at me and, I quickly realized that they are a complete tablet high school. They have no books, they have no paper, they have no pens, everything is done on their iPads. Right. Uh, and, and so that was, that was the first light bulb that went off for me. And then as I talked with them, I quickly realized that the young people today, you know, they have an understanding of technology and the use of technology that I will never have simply because I, not because I I'm ignorant or I don't want to learn it, but they have just been brought up with it and we'll develop it and utilize it in a way that I never will.  

[Phil]: And, you know, I think the same thing is what you just said is that they're the generation of people who have grown with this level of accessibility will take it to a whole new level, over time and developing it. Uh, and that's, that's an exciting opportunity.  

[Doug]: On that note and you've kind of started to get to it, but what role has technology played in this? I'm sure, you know, not, it's not just, you know, public awareness and perception of captioning and other accessibility services that start to really change the tide, and bring down that, that hourly number from $1,500 an hour to like a hundred dollars an hour. How has technology played a role in really kind of accelerated all of this?  

[Phil]: Well, I think that, I think that you see it primarily in like, where people are able to access services. So, for example, when I first started in this industry and, we were developing, I guess it was closer to the year 2000 that we began to develop remote services. Everything was on site up until then. It was a especially trained court reporter stenographer who would go onsite, set up their computer, set up a laptop. The other person would read the computer screen and so forth. It was around the year 2000 that we began to provide remote services. Okay. And, I don't know if any of your viewers remember dial up internet connections, but that was where we started was telephone line dial up. And if you've got a good connection, then you could maybe do a little bit more work if you didn't get a good connection, it just, you were stuck with it. But then, soon after that wireless started and when wireless started that gave us a lot more opportunities to go on college campuses and develop services. Now it was, you know, it was spotty and depending on the campus, you know,I'm, from the Chicago area. We have a number of old universities here where they're heavy, concrete walls and so forth. So it was difficult sometimes to get a good signal. Um, but now fast forward 20 years, wireless internet is everywhere. And, I think like one of the coolest places that we've seen is in, we have worked with some medical students in Wisconsin and, within the medical arena, all hospitals have wireless, including like surgical suites and emergency rooms and there's wireless everywhere. So we have had some physicians who were studying medical students who were studying, and they were hard of hearing and they needed cart services. So on one side of the operating table, you had a nurse who wore an iPad on her chest. And on the other side of the operating table was the physician with hearing loss. And we were able to connect and listen to everything that was taking place in that surgical suite and able to transcribe it. So that doctor was able just to simply by moving his eyes up and down, was able to read everything that was taking place in the room at the time. Um, so, so that's kind of an extreme and pretty cool opportunity and use of captions. But again, technology is what has allowed that, you know, Ipads that are lightweight, internet which is prevalent ,and wireless internet prevalent, virtually everywhere, those kinds of technology advances have really made a difference for us.  

[Doug]: Wow. Well, yeah, certainly, you know, there's certain ways in which I, where my mind would go as to how technology has played a role, but certainly would have never guessed this anecdote you just shared about an iPad, that's, where the captions are going to, so that a surgeon can read it during surgery. I mean, that's certainly a great example of multiple technologies at play that's, I'm sure something that you probably never would have imagined at the start of your journey in this space. Um, you know, I want to go back for a moment to that anecdote that you shared about the mayor and the curb cutouts and, you know, what I, what really resonated with me just around accessibility is like, and just, you know, the disability community at large and really any marginalized community is, you know, this kind of thinking from like, say, you know, like a non marginalized community that like, it's like, I don't see them anywhere. Like I don't see it, so it must not exist when you have like, structures that are set up to not accommodate. And then, and then you don't see people in a space or using a service and just assume it's because no one wants it and not realizing it's because you're not setting up structures to accommodate those people in the first place. I mean, it's, it's perfect irony in this situation that you're describing and it's like, why would we take all this time and money and effort to make curb cutouts when I've never seen a wheelchair on the streets? Well, maybe it's because it's not very easy to get around because there are no curb cutouts. So I, you know, I think it's really such an, it really illuminates so much of why universal design and, you know, I've heard it said in other ways as well, but that's certainly an oft used term, universal design, and why being forward thinking and really aware of say in this case, accessibility is so important because for a lot of people in their day to day lives, they might, it might not be something that's an absolute necessity to them, and it might not be in their, in their range of vision on a moment to moment basis. But that doesn't mean that there aren't millions and millions of people that really rely on, or that it's really vital to their lives. And I think captioning is such a great example, because as you said, initially, you know, it was, it was really only used in very choice, specific situations. Um, it was something where in the educational space you'd have to get to the master's level for that to even be something that's possible. And now, not only is it more prevalent for, you know, some of the communities that one might assume need it more, but like in many ways there, you know, I know plenty of people who watch a lot of content with the captions on who aren't necessarily hard of hearing, but maybe they're watching a show. I know a lot of people who watch, like some of those BBC shows who are Americans who don't understand thick accent, like, thick London accents and are using captions to understand the content that they're watching. Maybe you need to, you know, have the TV on mute. Um, even though you can, even though you're, you know, hearing you need to have the TV on mute, but you still need to like, watch some sort of content, you're enjoying those captions. So to kind of, it's just such an amazing example of how assumptions are really dangerous or someone just operating from their own point of view is a really dangerous way to operate, particularly when you're in a position of power, in a decision making position. I think, you'd also shared with me that anecdote about, early on, I think earlier in your career, getting the, those government funds to do captioning for first Chicago news station, that where that ended up getting nixed. I think that's another great example if you could share that.  

[Phil]: Yeah. That kind of goes back to the origin of captioning and, and trying to build a need, we received, I was part of an organization that received a grant from the Department of Education, a sizeable grant to provide captioning services for local news. And we went into the city of Chicago, which is where we were based. And we went to the different news entities in Chicago, and none of them would buy into it. They were, they all said, you know, this is not going anywhere. Nobody wants this. We have no interest. And we actually ended up having to give those funds, return those funds to the Department of Education, because no one, no one saw the need at the time. Uh, and so that just really is kind of a, uh, show of how it grows. Um, kind of, another story that I think about when you talk about how people, you know, you say, we don't see anyone who is maybe deaf or hard of hearing. And so, we don't know that they need captions and so forth. There's a large population of people that are part of a group called the late deafened group. People who lose their hearing later in life, long after language has been acquired. And so, they may have very clear speech, and, and you would have no way of knowing that they are not able to hear you or be able to understand you. And we actually worked with an attorney, at a very large Fortune 100 company who had significant hearing loss but she did not want others to know about it. I mean, some of the people within the company knew about it. It wasn't like it was hidden as an employee. But she did not want her competitors, people that she had to communicate with. And as an attorney negotiate with, she felt that they would take advantage of that. So she used captioning services to communicate via the telephone and she built strategies into her language. So she would, she would pause. She would say, well, just a second. Let me think about that. And she would wait to ensure the fact that the captions had come through and were up to date and so forth. And, and then she wasn't missing anything. She didn't want to step over someone. And so, you know, you just never know of the situation and who is going to use them. I believe this statistic is one out of six would be considered a caption user. Uh, and that is before you take loss from sensory deprivation, meaning people who are aging and, and simply are not able to hear as well as they were at one time when you factor in that group, it drops to one out of four can be captioned users. So, you know, I think many of us have experienced time where, you know, we've talked with somebody who may be aging a bit, and they're not able to hear us or understand and so forth. That's like a even larger audience of users.  

[Doug]: This is actually, I'm just going to take a quick moment to do an interpreter switch. Alright, Jamie, good to go. Excellent. So continuing here, you don't want another, again, just to kind of bring back to this, the topic we were discussing around there be sometimes this lack of understanding of people in decision making positions of like, what is actually needed or what is necessary or vital. You know, I think that also, again to connect this to the conversations we're having about the ADA, and certainly some things we've discussed on this platform in the past is so much of the need for there being all different types of voices in those decision making positions. Because again, you can't have someone there, if all different types of voices are, are not represented, you're going to have communities that, and again, really large communities like, you know, the disability community at large, or any more specific community within there whose needs are completely not understood and therefore not accommodated. And I think something that certainly we've seen progress around, but it's something that I know certainly is, you know, one of the prevalent themes over the last number of months, has been for there to be more representation and more voices in these decision making positions. I'm wondering, you know, for me personally, it's been an interesting journey, being a part of, you know, certainly a part of the DeafBlind community, and the disability community with this platform, you know, for those who've tuned in, in the past, you might know my personal story of how Feeling Through all got started. It was very much inspired by an encounter that I had with the first DeafBlind person I ever met a number of years ago. And it led to the film Feeling Through which led to The Feeling Through Experience and this platform Feeling Through Live, born out of, you know, getting to really, through that journey, get to know obviously our ongoing partners in Helen Keller Services, the DeafBlind, a lot of people in the DeafBlind community, forge friendships, a lot of people in that community and learn a lot about the disability community through that. But I am someone who is non-disabled, as someone who is, it's still a learning process for me every day. And certainly I have a healthy regard for the, the much that I do not know, even though it's a space where I spend almost all day every day in, in some capacity. So I'm wondering, you know, with you, as someone who I think is in a, in a similar boat thematically, in the accessibility space, how do, how does that, how do you interact with that being someone who's kind of bridging two worlds in being in a space that's, you know, again, not as we've already described, not solely for captions, aren't only for people who are deaf or hard of hearing like you've well described, but that is kind of a lot of what it's born out of in a heavy amount of the user base as is accessibility. How do you kind of like say straddle those two worlds, so to speak?  

[Phil]: Yeah. You know, I'll tell you what I was thinking about Doug. I, I don't know if I should go down this road or not, but, but I will here. Um, so, my family was created through adoption. My, my daughter is Asian and we have had some excellent conversations over the years on culture and race. And she has said to me from time to time when we've had a discussion, she has just said, and this is going to seem, some people may find this harsh, but she's like, she'll say, dad, you're just not going to get it because you're the white guy. And, and you just, aren't gonna understand. And she goes, I know you try, and I know you care. And I know you're a good guy, but you're still the old white guy. And I always, you know, I always kind of bristle. I'm like, I can go with being the white guy, but do you have to throw in old on top of it? But you know, I think that applies here. And I think that, what I personally try to do and what AI-Media, the company I'm with, tries to do is we listen. And, and I think that that is the smartest thing that people can do is listen, at least listen first and then potentially act, okay. And figure out how to support other people. The word I like to use is empower, um, because I don't think it is my place to step in for a consumer and say something to a boss or say something to a professor or a teacher or a co coworker. But, we will level the playing field with a consumer and we will let them know exactly what's being said around them. And we might say, would you like us to comment about what you may be able to do with this? If we, if we hear a discriminatory type statement being made or an action being taken, we might ask, but we will always ask the consumer, how can we support you? How would you like us to support you? Some consumers say, you don't say a word ever. You just give me the captions and basically stay out of my life. Just give me the captions. Okay. That's fine. If that, if that's the role you would like us to play, that's great. Other people will say, help me understand this, or what's, you know, what exactly, what was the intonation that a person was using there? Where they being snippy or was that just the way they are, or, you know, they will ask us for further information. But I think that's the key is listen. And, and just, just as I, as the old white guy, okay, need support from, you know, don't assume I don't need anything. I may need support on things. So communicate with me. And what do you need to understand better to do your job better, to go further in this world, whatever it might be.  

[Doug]: Yeah. That was really, really beautifully put, and certainly can relate to a lot of what you're sharing there. You know, you kind of brought up, within that you brought up this kind of distinction between, you know, some people were like, when you were talking about, you know, some people are like, just give me the captions and that's it. Or people might have kind of a little bit more of a dialogue there. That makes me think of, you know, something that I know you shared with me before of like compliance versus accessibility. Can you talk about what that means in this space and talk a little bit more about that?  

[Phil]: Sure. Yeah. You know, we're, kind of facing that right now. It's a pretty big deal. So, you know, this isn't, this is a, I'm going to make a very generalist statement. Okay. But there, there are many times in the media where, you know,they're, not captioning news and world reports and those kinds of things, out of the goodness of their heart. And in many cases, much of the media is forced to caption and, in the United States, that's compliance. Okay. And so compliance really can be whatever is necessary to get it on the screen. And so the quality may not be there in some cases because, there's not, there's not huge detail around how accurate captions have to be and so forth. So in many cases from a compliance standpoint, you'll see inferior product. Now, that's, in the United States. For example, that's not the case in Australia, that's the home of our parent company. And there, there are huge fines if there are not accurate captions on the screen. So that's, there's, it's different in different parts of the world. I choose to focus more on the accessibility aspect. I think there's compliance and accessibility and accessibility is putting out that best product that you could put out is providing, you know, a service. You have interpreters as part of your, of your program here. You'd be, you'd be surprised at the number of educators that contact us and say, I have a, I have a student that's coming in with hearing loss. I need interpreters. Do you have interpreters? And we'll say, does the students sign? And they'll say, I don't know. And I'm like, well, that's, step one of accessibility is you need to find out what the need is. And then staff the need. They may not be a sign user, not everyone with hearing loss knows sign language. And, so we really try to focus on that accessibility aspect. It's more about the person and working to develop a solution that will support an individual as opposed to one size fits all.  

[Doug]: On that note of access accessibility, Alice Eaddy, from the NFADB, just commented about that distinction between captions and interpreters. And that a lot of times there's also this assumption made that, oh, we don't, we don't need interpreters because it's captioned. So we're good. And as Alice was pointing out and something that I've certainly learned, through my journey of accessibility is that there are people whose native language is ASL and that that's really, the accommodation for them is providing an interpreter because, you know, it'd be like someone else who's second language in that case, in their case, which might be the captions wouldn't be as proficient for them as having their native language on the screen, which is, which is ASL. So it's those kinds of understanding those, I don't even want to say nuances because at some point they won't be nuances when they're better understood, is really what about, to speak to the accessibility side of that conversation.  

[Phil]: Right. Yeah. I think that, you know, and I think that that's partially just education and helping people understand, you know, we don't think twice about it when it's a spoken language somebody's primary language may be Spanish or might be German, or it could be French or something to that effect. You don't, you don't think twice about it when it's that kind of spoken language. But I think it really is just the educational aspect or people to recognize that American Sign Language is a language and this could be someone's primary language, and we need to support them as such. Absolutely.  

[Doug]: Another question here from our viewers, Hillary, she notes, she said she's been excited to be able to easily add or edit captions on some of the online learning offering systems she uses. So she notes, some platforms are still changing, are challenging rather. And she asks, how can you imagine captioning evolving?  

[Phil]: Um, well, I think that it's going to continue to get better and get easier. I think that there are, there are going to be different levels of captioning. Um, you know, when, when you think about it, if you take a voice recognition software program and just take it off the shelf and put it into your computer, you probably could get around 90 to 92% accuracy just off the shelf. So when you think about it, 92% is pretty impressive from nothing to 92%. Okay. But the sad part of that is, is 92% is not real usable in an ongoing basis. I mean, the captions that people see on television should be between 97, 98% accurate. And we still see quite a few mistakes, right. And, and it can be challenging. So where automatic speech recognition tends to break down is around punctuation is around proper nouns. Those kind of things, which are really pretty critical. Okay. But it's getting better and it continues to get better. And so even as, as, as a leading captioning company, we're looking at ASR, automatic speech recognition and where that fits in our product line, it is something that is going to have to be utilized and be built on. And, so, you know, we're, we're looking at it to make things easier, the market, the market, I don't know if you know this or not, but the captioning market has with COVID has gone absolutely insane. People are captioning things that never captioned them before. And part of it is the online laws that have been established. Um, but, but also what we're finding is people were able to communicate better one-on-one and they were able to get along or be able to understand now with things being online and the internet, not always getting a good connection and you can't control somebody else's microphone that, uh, they have found the need to have captioning for online materials. And it, I just, our staff is, I mean, we have hundreds of uncovered jobs because we can't keep up with it. And there are all the companies are listing across the board trying to find coverage of secure people to provide this service and so forth. So we're just seeing kind of it just explode. So when you have that kind of problem, you're going to start looking at alternatives. People are going to be looking at how can we utilize these off the shelf products to make things accessible, but we're going to have to couple that with quality to make sure that it's good.  

[Doug]: Yeah. And, you know, I was going to ask you, you beat me to it, how the pandemic has really played a role in this. And as you've just noted there's been a lot more captioning happening. You know, I know from connecting with a lot of people during this time that it's actually created a little bit more of a level playing field, if you will. Being that, you know, with some of the accessibility features that are becoming synonymous with various video chatting platforms and other platforms that it, there are a lot of people who've told me, and I'm certainly, there's the other side of this too in which things are less accessible, but they're in certain ways there's been more accessibility for some people in various meetings and conversations than they had previously when something was in person. So that's kind of one of maybe the silver linings of what's happening right now, at least to some degree. Um, and again, a way in which technology is, is playing a really big role in that, you know, I know that, you know, on our side of things in trying to make things as accessible as possible, you know, today, for those of you, you know, for Feeling Through Live we simultaneously broadcast to Facebook and to YouTube. So for those joining us on Facebook, they'll see automatic captions being generated that Facebook introduced not too long ago. They are actually, again, myself having played around with a lot of automatic captioning programs, they're actually quite good, relatively speaking again, like you said, they, they can only be so accurate, particularly the punctuation aspect isn't necessarily spot on. But quite, quite usable. On YouTube you'll see, if you're watching on YouTube, you won't see any live captions.  

[Doug]: We add, I go back and add much more accurate captions to both platforms after the fact. But again, YouTube being, you know, behind the curve here, their requirements being something like meeting 10,000 subscribers, and it's still being rolled out slowly, even to those larger pages, which we're not at yet. Um, and really, you know, hopefully we're getting to a point where, the, what Facebook is doing is the norm for any, of any platform, particularly ones that are widely used. I know John who's joining us notes that many videos on Instagram and Snapchat have absolutely no captions or are subtitled, unless someone goes out of their way to post it as such. And he asks, how can we help to provide access in those spaces?  

[Phil]: Right. Um,that's, a great question. And, I could, I can go back and look it up. I, it just came out yesterday. One of those two providers, has announced that they will be providing, or that they are now providing online accessibility. So I can't remember if it was Instagram or Snapchat, but one of them just announced yesterday that they will be providing a similar service, like Facebook, like YouTube, like, you know, some of the, some of the other folks. Um, and so, you know, I mean, I think that, again, you're, you're seeing that, you know, they're looking at it probably more from a compliance standpoint. Okay. And, and that's, that's my opinion. Uh, I don't, I'm not, I have nothing factual to back that up, but, I think that they are looking a bit at a compliance standpoint. But like for example, Facebook, one of the things that Facebook has done is they have the basic compliance aspect, but our company, in fact, AI-Media has an interface with Facebook, so that if you want to have high level accurate captions, you can book directly with us. And so you can, you know, you can get the base level or you can get a higher quality level. And I think that's what you're going to see overall is that you're going to see there's this baseline, or maybe people who are just, you know, flipping through the videos and watching different things, just, you know, sitting in their living room, that level of accuracy doesn't have to be as high, but for people who want to actually watch a webcast, listen to a podcast, be a part of a live streaming event there, the quality is going to need to be higher. And people like Facebook have in fact built that capability into it. So you're going to see that.  

[Doug]: And, you know, to that point, you know, Ai-Media obviously does plenty of captioning work, but that's not all Ai-Media does. Can you, can you talk about some of the other elements of accessibility that Ai-Media provides?  

[Phil]: Sure, sure. So probably the two that come to mind in particular is audio description with which I'm sure you and, and your viewers are familiar with. Um, but, and, we provide two levels of audio description, an actual human who will narrate, we also have a synthetic voice, and what, where we have used that because we're a global company. So we're all over the place. Um, we have had to do audio description, so we've taken English speaking programs, but the audio description might be in French. Okay. So, so we have multiple languages that we can change it into synthetically. So, you know, we can have an English version and a French version, and we're working with a number of different Asian countries as well. So a Chinese version so forth. So that's kind of a, a little bit of a nuance when it comes to the audio description. The other program that we have, is a service called Scribbler that has been used in the, uh, the, the Asperger autism spectrum. And so one of the things that we've found is through one of our, uh, staff in England is a specialist in that area. And she designed a program that basically, uh, well, this is a rather simplistic view, but it strips out a lot of the, uh, kind of the adjectives and, and extra language that can be distracting to someone who may have a form of autism. So if you remember the phrase, just the facts, just give me the facts, uh, that that's kind of how the service operates. So we listen in an educational arena and then we strip out all of the extra language, and then we give captions, the captions tend to help people focus. So they're rather than maybe looking all around the room, they're able to focus specifically on the captions on the screen, and it's simple text, and they're able to, to access that simple text. So those are two different, as well as captions, and then, you know, changing captions into multiple languages. We're seeing that it's, I think that's kind of a cool thing. We'll do a conference in English, and now we're doing things remotely. Doug, but we'll, we'll do it in English, but it will be in 10 different languages simultaneously, going out to all different parts of the world. So pretty, pretty cool opportunities.  

[Doug]: It is really cool. And, you know, I, again, as someone who's always trying to learn more about accessibility, certainly very familiar with audio description, and we've used that ourselves, but it's interesting to hear some of the nuances of how it's being applied, how your company is applying it, and some of the ways in which technology is, is creating some, some new options there. Um, yeah. So, you know, with kind of the, the final kind of moments that we have here today, I'm, I'm wondering, I guess I just throw it to you. Is there anything, you know, that we haven't covered, that that's something that you'd like to note on your end?  

[Phil]: No, I think, I think that you have, have covered it quite well. I appreciate the opportunity. Um, I, I think that, you know, it's kind of, it's kind of ironic that, uh, a presentation on captioning is summed up in the word listening. Um, and, and I think that that is really, um, what people could take away is that, you know, we need to listen. We need to understand what the need is, um, and how we can meet that need for people with hearing loss. Um, you know, we're, just seeing an enormous growth and need, you know, we oftentimes have, have commented that if someone is utilizing a service in all their academic classes, most likely they could utilize this service in other walks of life, too. I mean, people are not simply hard of hearing or deaf in one environment. Uh, they're harder hearing and deaf through throughout life. So, uh, there, there is a and understanding that needs to take place, uh, in, in whatever, you know, kind of whatever path you cross, uh, it needs to be there. Yeah.  

[Doug]: That is a beautiful closing statement there, I would say. Can you tell people who are interested in learning more about Ai-Media, perhaps need your services, where they can find more information?  

[Phil]: Absolutely. We certainly are on the web, uh, and that is, uh, uh, a now, um, now I'm drawing a blank, even on our website, AI media dash, or dot tv, is the it's, it's ai-media.tv, is the website and I'm more than happy to answer questions, uh, be an educational resource. There's tons of information there as well. Uh, and, uh, we'd be happy to, uh, answer any questions.  

[Doug]: And I will add to that, that I suggest following Ai-Media on, on social media, on Facebook in particular, not only do you guys have a really large following there, but are constantly sharing a lot of very interesting content, you know, in and around the accessibility space. So, um, a lot of really interesting content that's shared there, I've certainly learned a lot, uh, about what you, you know, what, from what you've shared there. So I encourage viewers to follow your social media as well.  

[Phil]: Yeah. Thank you. I forget that. I, I'm not a huge, remember I'm the, I'm the old guy, right. So I'm not as into the social media side of things, but, Facebook, uh, is, has been a really strong opportunity for us to share a lot of really positive information.  

[Doug]: Yeah, well, absolutely. Well, again, Phil is really a pleasure having you on today, um, and, and looking forward to, uh, you know, connecting more with Ai-Media and learning more about what you guys do over time as well.  

[Phil]: Thank you very much. Appreciate the opportunity. Thanks. And thanks to the interpreters who make my words accessible. Thank you.  

[Doug]: And thank you to all of you who tuned in today. Um, one more reminder. I know some people asked us in the chat for those of you who, uh, maybe missed our last Feeling Through Experience and want to tune into one of those, The best way to do that is to go to feelingthrough.com, sign up for our mailing list. We are going to announce our next screening of that, our live stream, rather of that event probably within the next several days or week. So definitely sign up there. You'll get all the information you need, and also follow us on social media. If you're watching on YouTube, follow our Facebook page, facebook.com/feelingthrough, if you're watching on Facebook, subscribe to our YouTube page, where we're putting up lots of great content. So, and, uh, yeah, we'll, we'll see you next week, same time, same place for another episode of Feeling Through Live. Have a great weekend, everyone. Bye.  

[Phil]: Thank you. 

Feeling Through Live • Episode 22: Be My Eyes

 [Doug]: Welcome to episode 22 of Feeling Through Live. I'm joined here today by Will Butler from Be My Eyes. The title of this episode is appropriately named, Be My Eyes. And we'll, we've got a lot to talk about today, but you know, let's, let's talk about the elephant in the room here, or rather just the title on the screen. Why don't you tell everyone would Be My Eyes is.  

[Will]: Yeah. So, uh, thanks. Thanks for having me. It's it's good to be here. And, um, and, yeah, I'm really excited to share a little bit about what we do and talk about your movie, cause it's such an, such an excellent piece of work as well. So yeah, so Be My Eyes is, is a Danish, Danish invention. It was this app that, it was basically dreamed up by this, this Danish guy who has retinitis pigmentosa. So he's got a degenerative eye condition and about six, seven years ago around the time that video chat became pretty popular in mobile devices, he realized that he could actually make a video call to like, anybody and, and point the camera, and they could translate to describe whatever he was looking at or having trouble seeing. And so he thought to himself, this is really great, but what if I don't want to just call the same couple of friends and family all the time? You know, what if I could kind of do this at scale. And he realized, you know, every time I go out on the street, all these people are trying to help me, you know, cross the street or do things that I might not necessarily need help with. But when I do need help is when, when people aren't looking, when he's by himself trying to tell the difference between a can of tomatoes or a camp coconut milk, and you don't want to open it up and smell it to find out. So, Be My Eyes was born this idea that you could press a button and a random volunteer somewhere in the world, who was available would answer within a few seconds, look through your phone camera and describe whatever it is you were looking at. And then you could go on with your day. Uh, and that's what that's, what was, was created. Uh, when we launched the app five years ago, it was a very, kind of, it was a big unknown. We had no idea how many people were going to sign up what the response was going to be. Frankly, we were worried that more visually impaired people were going to sign up, uh, then volunteers and we would have this outsize demand and, and people would be mad because they weren't getting help, but kind of the opposite happened. Um, we had about 10,000 volunteers sign up in the first four hours and a thousand blind users. And so we developed this really great ratio about 20 to one volunteers to users. So that every time it user places, a Be My Eyes call kind of like Uber or Lyft, we ping about 20 people at a time. And whoever is most available will be the first person to answer and be able to be the eyes of the, the person who needs help looking at something. So that's, that's what it does. Yeah.  

[Doug]: And, you know, obviously, great, great description there, and I'll be the person on the outside of this being a little bit more of the fan boy of it saying, like, if you haven't used this app, you should download it immediately. It's, you know, I will, when we first connected, I told you, I was like, I was kind of nerding out a little bit because I was like, independently from meeting you, well before it, I had read about Be My Eyes downloaded and was like really excited about, you know, not just the functionality of it, but also just kind of the community that you've, you guys have really built around it. And we'll certainly get into that a little bit more. But I mean, just from a personal standpoint, what I was so impressed with was like, kind of what you were saying. There was this initial concern that, Oh, we're going to have so many people needing to use this and not enough volunteers to make it work, but it being so much the opposite that as someone who's a volunteer on it, I've hardly, I've been on it for like, well over a year, I've hardly ever gotten any notifications because there's just so many volunteers. And the few times I have, I have gotten a notification, I have like sprinted to my phone, tried to get it and like just missed out because another volunteer has gotten it, which first and foremost is so cool in and of itself that there's so many people that make it work so well. But on the other hand, I think it's so cool that like I've signed up for something to volunteer my time. Right. Quote, unquote, volunteer my time. And I'm like super bummed that I miss out on this volunteer opportunity and to create that kind of enthusiasm for people who are like, quote unquote volunteering their time is like, there's very few things that I feel like create that level of enthusiasm to like volunteer your time for,  

[Will]: Yeah. Well, there was a, I think what, where Be My Eyes slipped in is there was a gap between, um, the amount of people who really genuinely wanted to help and the opportunities to help. Like I remember when I was in college and I was kind of newly blind. I would, if I wanted to have course material accessible to me, it was like a process. It was like I had to either purchase, you know, a $700 flatbed scanner and expensive software and learn how to use the software and then learn how to, you know, scan it and convert it or go down, walk physically down to the disabled students office, find the group there that converts books into accessible formats have them literally cut the spine off of the book. Um, you know, and scan it through their software, returned it to me, put it onto a CD, um, that, and then I would take home and put into my computer sometimes just so that I could read like one chapter of a book. And, and in a world where like we as blind people are like 1% or one to 3% depending on how you look at it, of the population. And there's so many people who want to contribute to helping us. We really, we, we really shouldn't have to wait when it comes to overcoming an accessibility barrier, it should be pretty instant. Um, and so that's kind of what we're working on at Be My Eyes. Like we joke that we don't want to get to a point where we don't need to exist because the accessibility barriers aren't there, but for the ones that are, we want people to be able to overcome them pretty much instantaneously. And we have college students who will, you know, call 13 individual Be My Eyes volunteers in a row and have them each read one page of the chapter. And they're able to get the book, the chapter read the exact same amount of time that the sighted person would, as opposed to going through that process that I had to go through. Um, you know, 10 years ago, only eight or nine, nine or 10 years ago.  

[Doug]: They have so many things to say to that. But before I do just a couple of questions from people who are watching. Alice hello, Alice, one of our former guests and amazing, president of the DeafBlind division of the National Federation for the Blind asks, she asks, can you access the app with a braille display?  

[Will]: You know, we, we haven't like completely figured out support for the, um, I'd love to hear your feedback, Alice. It's one of the reasons why when Doug, Doug invited me on, I was really excited to join because we've done a really good job with connecting with the quote unquote blindness organizations. Um, but you know, as, as folks may or may not know, it's like deaf, the deafblind organizations and individuals tend to get short shrift on these sorts of things. Um, so I was excited to come on and sort of collect community feedback as well. Cause it's kind of, part of my job is to figure out, you know, what is the best way for us to make Be My Eyes work for people who are, are deaf, right? Like we, we have tons of deaf users who are using it with headphones in and, or some degree of amplification, obviously people with implants, like, you know, we have like a pretty significant deafblind community and definitely a pretty big, uh, hard of hearing a group of users. Because many of our users are older. Um, but when it comes to things like accessing the app completely non, visually and non auditorially, I think we could do better. And I think, um, I think, you know, people are always welcome to reach out to me on that front as well. My email address is will@BeMyEyes.com and, um, I'd love to hear from folks like Alice to see about like, who knows, I might be pleasantly surprised, you know, like we might have our developers in Denmark are really, really conscious about accessibility. So the app itself is a, is a hundred percent accessible. Uh, so it may be a pretty good, but I'm more concerned about like, what is the user experience for a braille display user? Um, and how do we go about nailing that? Cause I don't think we've run a ton of, um, user tests with braille display users.  

[Doug]: Yeah. It is like, again, it seems like a technology and again, we'll get more into technology a little bit, but like a technology where there's like a lot of room to keep kind of building it outward to accommodate a lot more people. Um, one more question too for right now is Diane Black. Hello, Diane, asks, how is the app promoted?  

[Will]: You know, it's really, it's really, uh, promoted by word of mouth. Um, well in social media, if you count that as word of mouth like organic social media, um, we were a small company. We, we were less than a dozen people for five years. Now I think it's 16 or 17. Um, and we run on, you know, kind of, we run a tight ship and uh, we have, uh, most of the team in Denmark, just a few people in the United States. Uh, and so we don't have big marketing budgets or anything like that, but luckily we have an idea that resonates with people. So our volunteers, we have more than 4 million volunteers now and our volunteers evangelize the app. They are constantly talking about it just in the way that Doug was telling people they have to download this app. We pop up on the front page of Reddit every, every couple of weeks or every couple of months. Um, we, we have social media posts unexpectedly go viral. Uh, every so often we had something kind of go crazy on Tik Tok last week, um, which got us, you know, a hundred thousand new users and, um, you know, promoting, promoting a service to people who are blind or low vision is hard. People who are blind or low vision tend to be isolated from the typical marketing channels or if not isolated, just integrated into the general population. And so we found that the way to promote it amongst visually impaired people is to promote it to everybody. Because if you think about it, we have, we have, um, 4 million sighted users and about a quarter million blind users. But statistically about a quarter million of those sighted users are going to experience a visual impairment at some point in their lives. So we have almost double blind users in our sighted, you know, if you could think about our sighted community and the fact that they will eventually need Be My Eyes. Um, and we have heard many, many times already about people saying, can I switch my account? I was a volunteer. I had a great experience. I helped some people and now I have a visual impairment and I'd like to switch my account to the other type of account.  

[Doug]: That's so interesting. You know, I think about a lot of times, you know, something and just connecting with a lot of people saying the deafblind community through Feeling Through, you know, I'd heard, you know, for people who maybe became deafblind later in life, and weren't say, born with Usher and maybe had had an earlier incidence of it, there is this kind of like feeling of psychologically, of being like, it was something that was very, very foreign until it was something that that person was personally experiencing. And it's so interesting to think of, you know, one of, kind of maybe the not as obvious benefits of a Be My Eyes is that it also kind of creates a direct connection and understanding of a community that many of the volunteers will at some point be directly a part of themselves and kind of creating, like, what I can only imagine is like a smoother transition into that. Had they not had any kind of direct connection with, the blind and low vision community prior to, to becoming part of that community themselves, I would imagine.  

[Will]: Yeah. I mean, there's a lot of ways to put it. I don't really believe. I think disability is a really useful concept as an identity thing. And I have a lot of pride in my disability, but I don't think it's very useful for our society as a whole, because it, because it alienates and it others. And I think like everybody has need for good design, accessible designed things, whether it's because you're blind or deaf or because you're holding a baby in one arm or the sun's in your eyes, or you have a limp, or, you know, you've sprained your ankle or your arthritis is kicking in. And it's like, are those people disabled? Sorta, you know. Um, and I think that I've heard a lot of different versions of this little hippy phrase, like a friend, Chris Downey, who is a blind architect who says everybody's got a disability, it's just that some people haven't found theirs yet. Um, I've had, I've heard folks with NFB say, the National Federation of the Blind say, um, everybody's blind. Everyone will be blind if they live long enough, which is a little more of a sinister thing, but it's true. I mean, like everybody experiences visual impairment, um, at some point in their life, the world health organization said that 2.2 billion people are experiencing some sort of visual impairment right now, which is like a staggering number. It's almost 30% the population. So obviously empathy is like really important. And it's important to understand that it's not us who can see and them who can not. It's, we are all in this very, we all have this very delicate gift of being able to interpret light with our, with our brain, through our eyes and it's, and we can't take it for granted. And, um, for the many, many people who don't, we need to make the world work for them. Um, so, so there's a lot of different empathy exercises out there that many of which sort of missed the mark and some of them, which sort of hit the mark, but it's tough. And you'll hear a lot of people saying like, Oh, I didn't totally know where you're at. Like when I take off my glasses, I'm blind. And it's like, there's just like, people are really, really desperate to feel connected to people with disabilities, but they're not given that many opportunities. So I'd like to think that Be My Eyes gives people an authentic opportunity. It's not exploitative, it's a win win for both parties. I'm truly a win win for both parties. Um, and, and doesn't, and doesn't dip too much into like empathy exercises that don't give the individual a ton of information.  

[Doug]: Yeah. And you know, kind of to what, kind of something that we touched on before and what made, what that kind of like brings up for me is, you know, one of the things that I think is really great about Be My Eyes and kind of the enthusiasm that's generated around it is that it goes beyond creating something that, like something that allows for more accessibility. I think it, it really does create community and like a mutuality of, of like a benefit, a benefit, right. Cause like I know, you know, in connecting with you before this, I know that there's a lot of people who are a volunteer who are perhaps, you know, to, to put it in kind of like a cliched way that are getting even more benefit from it than the, than the person they're volunteering for in the sense that I can only imagine this has been amplified during COVID, but obviously there's a lot of people who are isolated, increased loneliness. Um, and, something like this is a technology that not only allows to increase accessibility, but really just connection. I mean, I'm sure there's, you've probably gotten a number of stories like that throughout time, but I can only imagine more so over the last six months.  

[Will]: Absolutely. People are, people are incredibly eager right now to find a volunteer opportunity that, um, that resonates with them and makes them feel like they're, that they're being effective and at home or wherever they are. Um, and yeah, if anything, if anything our tasks that, that we need to figure out is how to provide more opportunities for all these wonderful volunteers who have signed up to do more. Um, I think there is an element to it, of people like that. There's no obligation. I think that we live in a time where you should be able to kind of make your own schedule and do things your own way. That's kind of expected at this point. And so I think, I think it's good that there's never, we never force any volunteer to do anything. Um, so we're going to try to maintain that and keep it casual and keep it like fun. Um, everyone knows it. As soon as you start being expected to do something regularly, it kind of loses its fun. Um, but yeah, I, I've been trying really hard to build community because 10 years ago, 12 years ago. And I asked a lot of my vision. I didn't know any people who are blind. Um, I had no reference point. I had no bookmark, nothing like no foothold for what visual impairment was all about. And I was listening to podcasts. I was searching the internet. Stuff wasn't out there. There were no blind YouTubers like there are today, there were no blind podcasts like there are today. It was a pretty obscure corners of the internet where you could find information about blindness and it wasn't stuff that was appealing to an 18 year old kid. So we're trying to engage with that as a, as a brand and as a company to try to put out multiple podcasts. We have community calls a couple of times a month where we have hundreds of blind people from around the world talking to each other on the line. Um, we have, uh, you know, we produce a lot of content that tries to bring people together as a community. And we're constantly thinking critically about how can we make this the biggest blind community in the world, really a community and not just like a nameless, faceless user base, you know?  

[Doug]: And not only are there a couple podcasts associated with Be My Eyes, but you are the host of said podcasts.  

[Will]: Yeah. Yeah. I don't know why I do this to myself. I'm so busy. Let's start another one.  

[Doug]: But I'm, you know, why don't you just let people know who are watching and interested what those are called and where they can find them.  

[Will]: Yeah. So you can go to bemyeyes.com/podcasts. And, um, there are two podcasts there. One is called the Be My Eyes podcast, and that is entirely interviews with blind and low vision people who, really, my only criteria is, are they blind or low vision? And are they passionate about what they do? That's basically it. Um, I just want to show as many different perspectives as possible on what it means to be blind. And we've, we've interviewed, you know, um, world travelers, PhD chemists, the president of the NFB folks from other organizations. Um, we're bringing on folks from the ACB we've got, uh, You know, just like real sort of like trying to have really meaty discussions about what it means to be blind in today's world and, and how you get by and all the different ways of getting by it. Cause there are so many different perspectives. So that's the Be My Eyes podcast. Then there's a podcast called 13 Letters, the accessibility podcast. It's one, three, L-E-T-T-E-R-S. And 13 letters is kind of a joke about the word accessibility and how sort of inaccessible the word accessibility is like a 13 letter word. Um, and so it's basically just all about inclusive design and, physical and digital accessibility. We interview a lot of folks from companies who are designing things to be more accessible to people with disabilities. And yeah, and I cohost that with, uh, accessibility engineer from Salesforce. And I'm happy to say that if you go to the website, bemyeyes.com/podcast, all of the episodes also have transcripts as well. Um, so they're all, like fully accessible. Um, and it's super important to us as well.  

[Doug]: What, you know, I guess, whatever you're able to share, what are, and you were kind of alluding to this, but what are, what's the future of Be My Eyes look like, obviously, you know, you're not just growing your user base, but you have these ways with, through the podcast that you're building community around it. Are there any like initiatives or new elements to it that you're like able to share now that are like things that are in the near future things you're working on?  

[Will]: Yeah. Um, so I think basically the big step we took in the last year or so was thinking beyond volunteers and, you know, the volunteer community is amazing and that's what keeps that's what makes the app run. Um, well actually, ultimately you need to get that. I don't think it's probably a package or something ultimately, what, what makes, um, what makes the app run is actually money, right? So the, the volunteers don't pay, the users don't pay and that's really important to us. We don't, we don't want anyone, anyone using the, benefiting from the app to pay. Um, but we, we needed to find a business model and we realized that actually companies had a real desire to connect with the blind and low vision community because they've been so hard to find and to serve historically. And so we went to Microsoft and we said, would you guys like to receive the Be My Eyes calls in your disability support center? Uh, directly through Be My Eyes. And they were like, yeah, absolutely. And so that was our first kind of partnership where we actually provide Microsoft customer support in the Be My Eyes app. We pretty quickly after that expanded to Google and then all these other companies, uh, including the whole umbrella of companies under the Proctor and Gamble company, um, you know, brands like Tide and Mr. Clean and all these other ones. And, um, and then this summer when COVID hit, we, we went to all the blindness organizations and said, would you like to provide customer support to your consumers? Uh, so we've got, I think, like going on 50 companies now who are in the Be My Eyes app. It's kind of like the, you remember the yellow pages, the phone book, you know, like, or like, uh, you know, it's like a listing, you know, the phone book for, for our blind and low vision users. And it's amazing, you can call and in like 30 seconds, you can be video connected to someone from a company who is an expert at whatever you need help with and they'll tell you how to fix it. So, so in the next, you know, upcoming, we're really looking to see how we can leverage the specialized part of the app and to giving people totally new experiences, improved access that they never had before, whether that's help with their pets or help with, uh, you know, voting or, um, you know, kind of teasing some things here. But like, uh, there's a lot of use cases that we'll see in the Be My Eyes app benefiting from having access to an expert, as opposed to just a volunteer pair of eyes.  

[Doug]: I love that. I love that. I'm going to take a quick pause for an interpreter switch. Yes. All right. All set. Great. So yeah, continuing here. Yeah. Those are really interesting ideas. And I think, um, you know, I think just anytime you have an app that has the numbers and the, and the enthusiasm as Be My Eyes does, I think that the sky's the limit. Um, so like, you know, I think all of that and whatever else you guys dream up, I think is probably fair game for you guys. There's the kind of the, it seems like the opportunities are limitless there.

[Will]: I hope so. So we, we, you know, we're, we are, having a founder who's blind, you know, we were pretty, um, we're pretty committed to our cause. And even though we're not a nonprofit, we're pretty committed to our, our purpose of providing this free support. And, and that is a, and not sort of taking the low hanging fruit of like advert, putting in bombarding people with advertising or charging people a subscription or all the kind of easy outs that most apps go for to survive. So as a result, it, it's a, it's a very, kind of like a critical challenge that we figure out how to fund Be My Eyes sustainably through a business model that works. Um, and I won't lie and say, you know, it's a challenge. Um, but we're kind of relying on the fact that we do have so much, or that, um, that, you know, good will prevail, we'll find a way to keep it going in one way or another. It's going to be really interesting to see how the, how the business model bears out.  

[Doug]: Well, as you continue to crack that code, please fill me in. Cause I'll be curious to know. I love, I mean, that's, I really feel like a kinship with Be My Eyes in that sense. And like, you know, obviously Feeling Through is not anywhere like on the like users level as it Be My Eyes, but I feel like there's a lot of things in which we're trying to navigate similar spaces around that. And certainly really admire and also we'll look for any advice you might have as you continue down that path there. But, uh, one...  

[Will]: I know like new generation, you like, the new climate is like ethics and like, doing good for the world are equally as important in people's buying decisions as price and all these other factors. So like, I think we're in a time where it's very reasonable to think that a purpose and profit driven company can do well. And, and the two are not mutually exclusive or at odds with one another. So I have great faith that that's the case.  

[Doug]: Yeah, wellI'm, going to join you in that faith there. So that makes two of us, but, you know, I'd love to, um, so we're both talking to each other from Los Angeles. We actually found out when we first connected that we're essentially neighbors, live a few minutes away from each other. You moved down here pretty recently, right? To Los Angeles.  

[Will]: Yeah. It was about a year ago.  

[Doug]: About a year ago. And can you tell me what, what brings you, what brought you to Los Angeles specifically?  

[Will]: I mean, I think, I think I feel, I think I feel a resonance with the energy in Los Angeles, I, I am pretty social and pretty, uh, I, I'm pretty enthusiastic about meeting new people and exploring different creative outlets and different ideas. And so there's a lot of motivation down here to create. Um, I love that. And even though I'm not sort of industry, like I, you know, entertainment industry, uh, I've always been a storyteller and a writer. And, um, you know, I was making movies on iMovie when I was 12 years old. Like I just, like, I like rendering a story.  

[Doug]: If this was by the way, if this was like, like The Tonight Show, I would like embarrass you by going, let's cue up one of those movies from when you were a 12-year-old. I wish we had the team to dig that up so we can embarrass you right now.  

[Will]: Uh, yeah, I mean, like, and, and also I have a ton of friends down here. So to me it was just like a lifestyle move. But also if I'm being honest, I think that ultimately, um, the only way we're going to change people's minds about the misconception of disability is by showing them really compelling stories that flip them. And, you know, if you tell a really good story on screen to people, to an unsuspecting viewer, you can flip them almost in one sitting, you can make them think totally differently about someone that they were stereotyping almost in one sitting, especially in the era of binge watch, right? Like when you can watch 12 episodes of something without leaving without even really pressing the next button, um, you can totally change someone's mind so that, uh, the next time they see a deafblind person in public, they don't react with a frown. And by looking away, they react with a smile and an interaction or a smile, and not even, they don't even need to help the person or talks to them just sending good energy their away. I mean, we can feel it, people with canes and stuff. When we walk down the street, we can feel when you're looking at us, we can feel when you fall silent, when we pass, you know? Um, and, and those are the little micro events in our lives that make our lives hard. It's actually not the lack of sight or the inability to do certain things. It's, it's the way we're treated. And I think that, I think that probably ultimately, whatever changes people's minds about, about, about those stereotypes is gonna come out of LA or is going to come out of at least, uh, the distribution machine that is based here in LA.  

[Doug]: Well, you're definitely speaking our language, the Feeling Through language, for sure. When you talk about the power of storytelling to change perceptions, I mean, that's certainly something that's been...  

[Will]: It's sounds corny, right? Like it is at this point, it almost sounds like not corny, but like obvious or like played, but, but if you really think about it, it's, it's, that's all, that's all we have really is like, we, our whole lives are stories that we've made up about ourselves. Sorry.  

[Doug]: No, I mean, you know, there is a little bit of corny and cliche to it, but it's definitely, I mean, it's a, it's definitely true. And it's something that, you know, I think is obvious to a lot of people. And I think there's a lot of people it's not necessarily obvious to, in the sense they don't necessarily think about or engage with entertainment like that on a regular basis, but it's still happening. Um, I mean, I think even just in the way that you just shared, you know, one of the, I mean, like personally what you were sharing and I'm sure a lot of people can relate to this as one of the real challenges for say someone who's blind and low vision is not necessarily even like a lack of eyesight, but more just the kind of microaggressions of like moving through the world on a moment to moment basis and having those kind of like quiet moments of someone kind of treating you differently or whatever that may be. I think that's probably obvious to a lot of people watching, but also completely something that a lot of people watching haven't thought about at all. And, and kind of the necessity of sharing that and, um, having that kind of, maybe someone hears that today in a way that they have heard someone else kind of say that before but it hadn't really registered. So in certain ways it's kind of helpful to like reiterate these things that seem like they're, they're fairly true for a lot of people, but not necessarily how people, people haven't necessarily ingested it in a way that really changes them in that visceral way.  

[Will]: Yeah. But you can't spoon feed it to people. That's the problem is that, like you can't, you can't empathy train someone's gut reaction to fall silent. When a blind person walks down the street, that's their, that's their like impulse and you can't just have a nice, you know, YouTube discussion where someone says, you really shouldn't do that and then have them not do that anymore. That's not going to work. What you need to have is someone kicked back on their couch and enjoy a story about someone who is like that and have their mind change in a really profound way. So that the next time they see someone like that on the street, their impulse is different. Their like their unconscious reaction is different. They can change their, I feel like a lot of empathy training is about changing people's like conscious reactions about like, okay, I know how to do this. Here's the steps that I take when I see this person, here's how to properly guide a blind person down the street. What I'm trying to change is like a lizard brain reaction to like, to people with disabilities and to make them people actually feel joy, feel pleasant, feel unthreatened ,feel not pitying when they see someone with a disability, because that is what actually breaks the negative feedback loop and creates real advancement.  

[Doug]: And you're absolutely right. I mean, I think what, at least what I noticed some of this empathy training to be that you described versus say the experience of getting engaged with a story, the difference, like you're saying is that, engaging kind of this conscious mind versus this deeper unconscious mind. And I think, you know, with storytelling, the, and, you know, particularly like watching like a film, film or TV, it's because rather than like, still being that separation where I'm over here and you're over there and I'm like learning more about that person over there, a story allows you and in a lot of ways forces you to climb inside of someone else's experience and really have like a much deeper, you know, approximate in a, in a more visceral way, what someone else's experiences like, from more of like the inside, rather than the outside looking over to someone else that's very separate. And I think that's where a lot of the power of storytelling lies to change these like deeper subconscious beliefs or reactions to things.  

[Will]: Everybody, everybody is. We're all very used to being bombarded with advertising. Um, most of us are pretty used to the school setting and what it's like to be lectured to. Um, we've all seen plenty of Ted Talks. So our ability to filter out, um, information, information that is being spoonfed to us and like take what we like and leave what we don't and in part our political beliefs on it and do this, and then mix it with a little bit of that and check this and create our own little weird dish is, is pretty, pretty well honed, but what we don't have, what we, what we don't have honed as well, is our reaction to a really well told story. Um, a really good story, frankly, can be dangerous, just as dangerous as it is powerful, you know, because it takes you, it grips you, it takes you for a ride and it can change your mind. Um, and you know, it's like, I'm not going to be able to feel I'm not gonna be able to go back to what I thought about deafblindness. You know, I've interacted with plenty of deafblind people in my life, but, but Feeling Through did change my mind about it in some subtle ways. And I'm not going to be able to go back to what I did before, what I thought about deafblindeness before I watched the movie, like it or not. And like, and I think what you show is really positive, but that's also why our filmmakers have a tremendous responsibility is because if they misportray whiteness or deafblindness or deafness or disability in general, they can do a ton of damage, like a ton of damage. And they can set back the entire population of people with disabilities hundreds of thousands of years, if they want to, you know, um, with just one terrible character or one, um, kind of thoughtless maneuver in a story.  

[Doug]: Yeah. I mean, I think I love it. They bring up responsibility, you know, that's something that's definitely really important to like what we, you know, did with Feeling Through and what we try to do with our platform. But, and I'm not, you know, certainly far from doing everything perfect. I'm definitely the first person to say that, but that, that responsibility, you have to do your best to be extremely conscientious of the message that you're putting out. And the potential impact that it has on people is absolutely imperative. And I'm someone who like, you know, maybe I'm a little bit more to the extreme of that as like a social impact filmmaker. Like that's very much interwoven into the whole reason why I would choose to tell a story in the first place. But with that said, I think like it applies to everything. You can, you could have like a complete slapstick comedy, but there still needs, there's still a responsibility in there. Right. And that doesn't even mean you can't poke fun at something, right? Like, you, one of the podcasts that I listened to, um, you had a blind comedian on there and obviously a lot of his humor is poking fun, but it's like, you're doing it in a, there's still like a clever kind of meta way to do that, where you can, you can be poking fun at yourself and empowering yourself, or you can be poking fun of yourself and kind of holding up erroneous myths that people have to kind of like laugh at it, but also have to examine it in a way. So there's, the responsibility is in everything. And so much of like, I'm maybe again, a little too far to one side of the spectrum, but there's so much that I see on TV, on YouTube, what have you, where I'm like, I watch it and I'm like just knowing how much time and energy it takes to make something, and I'm like, why did someone choose to make that? Like, why did someone choose to put all their time and energy into this thing that like, could be like that thing that you're saying that's like, could be like varying degrees of like harmful. But at the very least like, like a net zero gain at best where it's like, what is that really? And look, I'm not someone who says, not every piece of entertainment or thing we watch needs to like change the world or like, you know what I mean, make the world a better place, which is something that like, I love the ongoing joke in. Um, what's it called on HBO where they're in Silicon Valley. Silicon Valley, where the running joke is everyone in Silicon Valley is creating an app that's going to change the world. Right. And like, make the world a better place. I'm not saying everything needs to do that, but there still is a responsibility in everything and anything you put out, particularly for those who have a platform that, where it's going to reach tons of people. And that's something we think about a lot. I'm glad you are bringing it up because I think it's something that may be, there's a lot of people who maybe don't create content that haven't necessarily sat with that part of it or thought about it. But it's a really, really important thing for everyone to be aware of because it's not just for the content creators, but it's also the content receivers and being, having this awareness of what, you know, maybe getting a message from something and being like, I don't know if I, I don't necessarily know a lot about the deafblind community or the blind, low vision community, but there's something about that maybe feels a little off, like I'm going to kind of do my own research there because this thing, I don't really know why, but it's not sitting with me in the right way. And I want to look into this topic myself more so that I don't feel like I'm overly influenced by this thing I just saw or whatever that is.  

[Will]: Yeah. I'd like to think people with disabilities are often kind of like last in line when it comes to like social justice issues. Um, I think it's because disability brings up a lot of issues with around our mortality that scare people. And so it's a little easier to rally around, um, other identity, um, aspects of identity that are less about like your body falling apart or whatever. Um, and, and so, um, yeah, so, so I think like, as a result, other groups are a little further along and like, you wouldn't like, um, you wouldn't write a film with like a native American character and just be like, Oh, I'm just going to like a makeup, like everything about like the way he talks and the way he dresses and the way he looks and the stuff he says about being native American. I'm just kinda like weighing it most people these days, like somebody might do that, but most people would, would be like, Hmm, no, maybe I should read a book.  

[Doug]: Some people will definitely still do that though, for sure.  

[Will]: Unfortunately, but we've made a lot of progress somewhere and people will catch heat if they don't, if they do that, right. At least, you'll at least catch heat. There is, well, no one will bat an eyelash. If someone did that with a blind character, people, people think of a blind characters and deafblind characters like these mythic creatures and, and like, we're not mythic creatures. Like we're, we're like totally real people fighting for our survival and our existence, just like everybody else. And there's like, there's like 30 to, depending on how you slice it. There's like 30 to 50 million of us in the, in the United States alone, just, just trying to fit into this society. Um, so when you just like paint with a really broad brush and just like improvise, like a representation, you're screwing us over like, um, in the same way that you'd be screwing over, you know, any other group that you just decided you were going to kinda like, um, you were gonna just, you know, makeup, makeup of your own creative version of. So I don't know. I'm like I'm the last person in the world who wants to sit around and watching, you know, like only like, you know, no offense, but like only like documentaries about social good. I don't think you would want that either. Like you serve a role in a broader, you know, ecosystem. But you know, because we don't want just one note, you know, everything to be, but, but it's not about, it's not about whether the, whether the story is uplifting or not. You could make a, uh, socially responsible horror movie. Right? Like, and if you look at some of the stuff from like Parasite and get out on these things, like these are like thrillers or horrors or whatever, they are like, they're, they're not uplifting per se, but, but they're socially responsible and they have a social impact that is significant. So, you know, you go that route too, Doug.  

[Doug]: Certainly not, that's something that I would certainly consider. And I think what you're bringing up too, are those, those are examples, you know, aside from like genre, what the story is, those are creators who have something to say and are using various genre components to tell that thing. But it's like, I think it's like, what is at the basement of that? The bottom of that is someone who has something to say and something that's really important so that you can say it in any number of ways. Right. You can say it in this thing. That's very, very much this clearly like meant to be like this moving sentimental thing. You can say it in a way that's funny and absurd or in a way that's scary or whatever that is. But I think that's, I mean, I know that for me, I'm not drawn to, I don't really like, when people are like what's your favorite genre type of movie, I don't necessarily have one. I'm more just drawn to people who are creating something that has something to say. And have like spent the time to really think about it, in a way that makes it like a worthwhile thing to say, whatever that is really. I don't like, you know, I think there's as many, as many people in the world, there are like valid things to say, it's just people actually take the time to, to have it generated from that place. And certainly, you know, entertainment business is a business like anything else. So there's a lot of things that come from the other direction of like, okay, like, you know, for whatever algorithm or business model we have, we think this kind of thing is going to do really well box office wise, money wise. And then we'll just work our way backwards and just create something around that. And here you go. It's a business, like, of course that's gonna happen too, but, you know, I think what's, you know, though, we haven't necessarily seen it reflected in the numbers yet. What's great about what's happening right now is that there's at least, you know, in a lot of it is having like say Hollywood have its arm twisted a little bit in like Oscars So White and things of like really calling out the lack of representation inclusion, but what that at least creates is an environment where, you know, the industry at least feels like it has to do something and hopefully things will follow suit too. As recently as I think it was yesterday I don't know if you saw the Oscars starting in 2024, and again, I think there's a little lead up to it, There will be an inclusion, um, a requirement to be able to be nominated for best picture. Um, so you can imagine how that'll, um, for those who maybe aren't inclined to do that anyway, will really force the hand of people to, to have to be more inclusive. And disability is included in that, um, as well as, as, um, ethnicity, um, in some other categories. So, you know, these are, these are things that are fortunately more in the forefront of people's minds Now, even if it's taken, if it's just kind of like for political reasons to like not come off as, you know, the bad guy or what have you but some tangible change particularly recently, nonetheless. And support.  

[Will]: Absolutely. And, um, yeah, no, that's great. I, and I'm no, I'm not like purist about like, Oh, like only, uh, only a blind actor can play a blind role or only a blind writer can write a story about blindness, but just because, just because with the sheer amount of great stories about blindness out there, there should, there's not enough blind writers and actors yet to serve that the number of valid stories that should be told. Um, but if I were running a studio, I would sure as hell, make sure that anyone who is pitching me anything had done their due diligence, because if they're running a network or studio, I don't want it. I don't want to green light something that, that is going to, whether it's a horror movie or a, or a documentary, I don't want a green light something that is gonna, is gonna do damage to a group of people or get, get, you know, get me in trouble or whatever it might be.  

[Doug]: Is there, you know, are there any particular stories that, that you want to see or things that like specifically come to mind that like don't exist or that you haven't seen enough of that you'd like to see?  

[Will]: Well, it's really interesting because we were starting to get this amazing, um, steady stream of what would you call them? Like, I should have thought of a term in advance, but like, like otherness comedies, you know what I mean? Like, uh, you've got like, um, who is doing great? They've got like Ramy and Shrill. Um, you know, HBO has got, um, some great stuff. Like there's all these comedies that are kind of like, um, here's how my identity makes me feel othered and here's how I'm dealing with it. And they're very like, kind of driven by the writer director type who, you know, stars in it or something they're like, and this is like a whole genre. And, um, I think they're great. I watched them all. Um, I like take them as like a mold and, and like, I think that, I think there needs to be, you know, more of that, but that's going to get old, uh, pretty quickly and people are going to be like, Oh, it's another one of these like, here's how I'm different than everyone else, the world is bearing down on me comedies. Um, and, and I, and I don't want to sound, I don't want to sound callous, but it's like, we're going to ratchet through a lot of groups and some of them aren't going to nail it and they're going to become more and more watered down. And then suddenly it's going to be this thing of one person and like, Oh, we already did the, you already did the, uh, you know, the Muslim otherness comedy, like can't greenlight another one. Can't greenlight another Ramy, because we've already like, got our Ramy greenlight, another, you know, Aidy Bryant because we did Shrill and that's damaging too, because there's like this isn't about like doing a, doing a fill in the blank story. It's about, it's about making room for more human stories.  

[Doug]: Totally.  

[Will]: Um, so I worry a little bit about that. Um, and so we need people to be a little more creative when they're writing now to think, how do we make, how do we make really good stories with really diverse characters that aren't explicitly or implicitly doing that relatively now, formulaic thing of trying to make the viewer relate to that otherness.  

[Doug]: Well, and, you know, that gets to the point of like, you know what, I think a lot of, you know, inclusivity and diversity become very much like buzzwords that starts to like really lose meaning, um, when you're talking in anything, but if we're talking about in media, but like when you kind of, you know, work that down to the foundation of it, like what's really important. And an extension of what you're saying is getting to a point where these traditionally marginalized communities, whichever they may be, and we're focusing on disability right now. But obviously, it could be, we could be talking about various ethnicities and any marginalized group is getting to a point where first of all, having any representation, right, for groups that aren't represented at all. I mean, in our case Feeling Through is the first film to star a deafblind actor. A first. Like a literal first, right? The next step of that is to have more, but like, because there, I'll use the deafblind community as an example, because of Feeling Through. So Feeling Through's the first. So obviously the first is, that's very important to the whole ethos and kind of the, the buzz and or marketing and or coming into Feeling Through is also having that relationship to the fact that it's a first, then the, you know, the next one or other stories in that space fortunately, won't be the first, but it'll still be one of the only representations of the deafblind community. Right. And so there's still really this, like, there's so little context for most people because of it being a community that's so underrepresented that you're still very much in conversation with and aware of that complete lack of representation. And then if you walk that out far enough, the hope is you can have a deafblind character in any role, right. That like where it's not, it doesn't always need to be about so much about their deafblindness. Right. And you can kind of walk that out with anything. And the hope is, you know, like using Ramy as an example, which is a great show that, and obviously being really important that it's like the first representation of like a Muslim American family and kind of like all the ways in which, you know, storylines, which they go down in that, and then Ramy becomes a big enough star where Ramy, isn't just like the Muslim American dude in this thing, but he's like leading a movie or a TV show. That's not even about that really. And then hopefully like, right, paves the way for more, you know, Muslim Americans to not be in shows that are just about them being Muslim American. That's kind of like the hope there, right? It's kind of like, we're so not close to that in a lot of ways, but I think that's ultimately kind of the hope when you're really boiling down representation and inclusion.  

[Will]: America, capitalism, whatever you want to call it, Hollywood, like they're always going to try to put us in a box and you have to be wary of that, even if it's a nice cushy inclusive box. And, and, um, and so we just have to fight that, uh, and I'm not worried anymore about whether representation is coming, it's coming. I'm more worried about how it's going to be commodified and packaged. And I don't want us to be vacuum sealed in, um, in a, in a kind of a boring little corner of, of media that there's a concept called the disabled, the, uh, Georgina Clique wrote about, and others I think have written about it as well, public disabled, disabled arts ghetto. And it's like, uh, this is, uh, this is, you know, this is like mainstream art, and this is like disabled art. And I worry that we're going to create some version of that. Um, every time we do something like the Oscars makes a big thing about inclusive, you know, inclusivity or, um, Hulu starts greenlining, more woke shows. Um, it's a huge step forward. And I hope that, uh, it just means more integration and more blurring the lines of what is a socially responsible show and what is not, or what is good for people and what is not. But I, but I do worry at times too, that we're going to just sort of, uh, that it's just going to be commodified and co-opted by corporate interests to sell more, you know, uh, products or whatever, whatever, what have you, you know, cause you're already seeing that across, you know, woke advertising and all this stuff, and it's going to make us cynical about inclusion. We're going to become cynical about inclusion, and then we're going to backslide because we're going to be like, Oh, I'm not gonna, you know, I'm, I'm too savvy to, to be tricked by that.  

[Doug]: Well, when you're the studio head of the, the studio division of Be My Eyes, you're certainly going to lead the charge against that. But, um, but on that note, we are out of time for today. And normally this is, after a great conversation like this, this is where I would like, twist your arm to come back and join me again, which I still will, but you're joining me tomorrow, for The Feeling Through Experience, the panel portion of The Feeling Through Experience for all of you watching again, that will be tomorrow 4:00 PM Pacific time, 7:00 PM Eastern time, goes, you can go straight to our YouTube channel, youtube.com/feelingthrough. You'll see the event is already up there. You can set a reminder, tell all your friends, everyone you've ever met. Um, and, uh, yeah, we'll see you tomorrow. And, um, well, um, I'm excited to get to talk to you two days in a row. This is a treat for me.  

[Will]: Yeah. Yeah. I'm excited to watch the movie. It's going to be great.  

[Doug]: Well, right on.  

[Will]: Well, thanks so much, Doug. I really appreciate it.  

[Doug]: Thank you. And thanks for everyone tuning in and, for Feeling Through Live, we'll see you, uh, obviously next Friday, but also see all tomorrow for The Feeling Through Experience. Bye everyone.  

[Will]: Thanks Erin. Thanks Jamie. 

Feeling Through Live • Episode 21: "Photography Saved My Life...Literally"

DOUG ROLAND:  Welcome to episode 21 of Feeling Through Live.  I am joined here today by Zaakirah.  And we have a whole lot we are going to talk about today really.  Zaakirah before we hop into things, say a quick hello and let us know where you are tuning in from. 

ZAAKIRAH NAYYAR:  Yes.  My name is Zaakirah with a Z.  I live in the Chattanooga Tennessee area at the moment.  It is a beautiful day here near the mountains.

DOUG ROLAND:  Excellent.  I am coming from Los Angeles where it is about to be triple digits for the next few days.  I am jealous of your nice mountain weather right now. Again you are so many things in an awesome way.  You are a photographer, you are an author, you are a podcaster, you are a brand strategist and a cancer survivor.  Clearly you have obviously in your young life lived many lives and done many things.  I want to start at the beginning.  Obviously we have an interesting title for this episode.  I know you have shared this story before and it is something that kind of like is so interesting.  I never knew anything about this before talking to you today.  The title today is:  Photography Saved My Life…Literally.  There is no exaggeration here.  So can you start off by walking us through why today's title is called that?

ZAAKIRAH NAYYAR:  I guess I want to start off with thanking my mother.  It was my mother's intuition and visceral feeling that allowed me to still be here today.  It was a photograph that she took of me when I was 3 to 6 months old.  Typically most moms photograph their newborn babies.  But instead of seeing a red glow for red eye, instead she saw something white in my eyes.  She first saw it in natural light and then saw it again when she took a photo and printed the photo.  This is the day happened the print the photo at a convenience store.  When she saw it, she had to -- took it the more than one coworker and doctor to really ask:  Have you ever seen this before?  Is this normal?  It took my -- I think I had a 6 month newborn follow up.  That pediatrician said there is nothing wrong here.  You are worrying.  A new mom worrying.  My mom was not a new mom.  I have an older sibling.

She got a referral to a specialist who then was able to pick up on the fact that this is retinal blastoma, cancer of the eye.  If it is not detected or the surgery is not done now, it could lead to death.  And basically three months later it was a whirlwind of connecting to another specialist, who performed the surgery to remove the right eye.  I am actually only seeing you in one eye at this moment because it is a prosthetic eye.  Though later on I was introduced to a camera at age 5.  My mom gave me a camera.  Ironically you know how you give some children something and they take it and run with it and you don't have to teach them anything else.  It was almost like me with a camera at the age of 5.  It is full circle now that I have my first DSLR camera -- digital single lens reflection.  When I was in middle school and high school and college.  I was able to study photography.  I love to be able to capture the essence of humanity.

DOUG ROLAND:  Thank you for sharing all of that.  I want to walk through that bit by bit.  Again, you are 6 months and old and your mother’s taking a photograph of you.  Many mothers would do of their newborn child of wanting to photograph their development and in that photo your mom sees in your eyes rather than there being a red dot -- which we have all seen with flash plenty of times -- there was a white dot.  What I find so interesting about this, if I saw a white dot in someone's eyes in a photo I would think:  The camera did a weird thing.  I wouldn't even think twice about it.  In this case your mom did.  Do you know what -- was she familiar with that being a warning sign beforehand?  What prompted her to look into that more?

ZAAKIRAH NAYYAR:  This was before technology before cell phones and PhotoShop.  Something like that was not normal at all.  But before that she saw it in the sunlight when I was playing in the sun and the sun hit my pupils.  Wait a minute.  When it showed up and took the picture and saw the printed photo, it was hearing a reinforcement of this is not right.  I think first it happened with seeing it in natural sunlight looking at my eye first and then she was able to reiterate and say:  I have to do something about this.

DOUG ROLAND:  First off I have to hand it to your mom for being that perceptive.  Particularly mothers are perceptive to their young children.  Kudos to her.  I imagine that is something that is easy to go undetected by a lot of people.  So she sees it in the sunlight and in the photo, from there do you know if she went straight to a doctor or what were the next steps from there trying to figure out what was happening?

ZAAKIRAH NAYYAR:  Until it was time for the every 3 month check up, she was asking friends and family and co-workers and:  Have you ever seen this before?  Doing her own research.  She loves libraries and doing her own research.  Then by the time it was confirmed.  Pediatrician initially said there was nothing wrong.  When she got the referral to go to a specialist to get the confirmation, yes this is early stages of retinal blastoma cancer.  I feel like emotionally that began to kick in for her.  I am about to have a baby with not just two beautiful eyes but now one eye.  We have to go through surgery.  Now it is like almost giving fourth her all over again.  Now she has to relearn how to walk and talk and just navigate through unspoken traumas too.

DOUG ROLAND:  Well again, good moral of the story, if you have a gut feeling something is going on, to not stop at the first diagnosis there saying that oh yeah everything is fine.  Obviously she felt there was something to look into.  Good on her again for following through on that.  Then she gets this diagnosis.  This was obviously quite a while ago.  You were a baby at the time.  At the time of the diagnosis, how serious is a cancer like that?  How dangerous is that type of cancer?  It is pretty rare is that correct?

ZAAKIRAH NAYYAR:  Yes it is.

DOUG ROLAND:  I had never heard of it.  I imagine there are a lot of people that don't know about it.  At that point where you are diagnosed a number of years ago.  How serious is that?

ZAAKIRAH NAYYAR:  The survival rate is not high.  The typical age is 5 years old.  Most children did not make it beyond 5 years old.  Back then it was rare.  Now it is harder -- it is easier in a way to detect it early on because of technology.  Now the survival rate is 95%, which is great for technology.  But back then, it was very rare and it was difficult to also for my mom to find that community of anybody else who -- does anybody else have it or does anybody else know about this?  It definitely took a little while of continuing to research.  She researched the community to find a couple of other moms who had been through it.  And one of them was Joey Bergsma -- the grandmother of Joey Bergsma, who started a foundation to make sure it is important that pediatricians actually make it a requirement to check the eyes.  Because most pediatricians at that time were not doing that.  To scan the eye.  She fought through the legislature to make sure that the law was passed.  That pediatricians check the eyes.

DOUG ROLAND:  At the time you got diagnosed, it's not a good survival rate.  Fortunately that's changed with technology.  But at the time it is quite low.  Was your mom -- when the diagnosis came in, was your mom at that time aware of how severe of a diagnosis that was?

ZAAKIRAH NAYYAR:  Because of the doctors expressed that and I give kudo to my doctor for telling like it is.  To the doctor telling nothing the wrong to the opposite telling it like it is.  That is what is so interesting.  Put it all out there and gave my mom and dad time to reflect on it before the surgery.  But she was informed and also kudos to medical libraries as well to kind of understand it in layman's terms.  Sure you hear the name of the cancer and you hear the survival rate and the side effects.  But how do you really process that in a way that could easily be understood?

DOUG ROLAND:  Uh-huh.  Again, I would imagine that having found it so early probably helped your chances here.  To what I understand is that the removal of your eye was to keep it from spreading to other parts of your body?  In that sense being able to detect it and follow it so early helped your chances of it not spreading and becoming a more serious cancer.

ZAAKIRAH NAYYAR:  First the surgery of removing the eye.  Now technology has improved to where you don't necessarily remove the eye but the tumor.  For me the eye removed and I had a period of incubation to have radiation treatment on the eye to try to help reduce the chances of it coming back.  As a result, even though the surgery was successful and I was dubbed a miracle baby, even surgery is risky as well.  Aside from that, I have regular checkups.  When I was a young girl it was every 6 months.  When I got older it was annually.  I have regular checkups to make sure that it has not grown or spread.  It is possible because of the side effects of the radiation that the cancer can spread to other parts of the body.  Such as having secondary cancers.

DOUG ROLAND:  And again like you were saying, it was the radiation that caused the hearing loss.

ZAAKIRAH NAYYAR:  Yes.

DOUG ROLAND:  That was entirely from the radiation.  Nothing hereditary about that?

ZAAKIRAH NAYYAR:  Yes.  Not hereditary.  From the radiation.  It caused a mild hearing loss.  It is still declining to this day but thank goodness for technology and hearing aids.

DOUG ROLAND:  Obviously thinking from a mother’s perspective here.  And I want to touch on the miracle baby of that too. I’ll get to that in a moment.  Have you ever had a conversation with your mom about what it was like with such a young child to first find out about this cancer diagnosis?  And then kind go through the roller coaster that is the cancer diagnosis?  And then through the radiation, learn about the hearing loss.  Again you are still a baby at this time I imagine when the hearing loss comes in.  Have you ever had a conversation with your mom about what that experience is like of kind of like going from one moment having no warning signs of anything to another having gone through a significant surgery around cancer and hearing loss as a result of radiation?  What was her experience at that time?

ZAAKIRAH NAYYAR:  According to her mother the first time I ever asked about it, I was between 5 to 7 years old.  Because of the experiences of school.  By the time I get to school, when I was introduced to the fact that I am a girl who is blind in one eye.  I am a girl who looks like she has a lazy eye.  People asked me:  What is wrong with your eye?  I did not see anything wrong with it.  My mom did not see myself in that way.  First she did I asked her:  Was I born this way?  That was the first initial conversation.  Where she then showed me the photograph that helped to detect the cancer, the one where she first saw the white glow in the eye.  And second we wrote a book about it.  She talked about her perspective.  She wrote about it, we have an audio book about it.  Called:  Seeing Life Through a Different Lens: a Survivor's Memoir On Overcoming Adversity with Resiliance.  We are going in chronological order in the book from the womb up to age 5.  Once again the survival rate is up to age 5 most children didn't survive past 5.  We talked about that.  She had the first part of the book that we talk about that from the parental perspective if moms or dads who are listening want to read how she felt about how it is going on.

DOUG ROLAND:  We are going to get to your book in more detail.  You have it behind you.  If you want to hold that forward and show everyone.

ZAAKIRAH NAYYAR:  This is it looks like if you want to check it out.  I have it on my own website.  But Amazon is available and audio book is available too.  Seeing Life Through a Different Lens.  My mom's favorite color is purple.  That is why we chose that.  The designer chose a cloud based off of the reading -- it was a sunny day in this paragraph.

DOUG ROLAND:  Sure.  Artistic choice.  Again I find this such an amazing story.  Not, obviously fighting really low odds at the very start of your life -- obviously the kind of really miraculous way in which your cancer was detected in the first place, but also because not only was it quite literally again a camera that saved your life as a baby, but you have become a professional photographer yourself.  You obviously have a very, very unique relationship to cameras and photography.  But can you -- I know you were starting to go through the bullet points of that.  Can you walk us through how you came into photography.

ZAAKIRAH NAYYAR:  Yes.  After receiving my first camera, which was a Kodak Polaroid camera, that was age 5.  My mom and dad loved to take summer road trips.  That was my first time taking pictures of everything.  Then my next camera that was introduced to was the camera that you take to the convenience store.  Take a photograph, don't know if it is a good photograph or not until it is developed.  But ironically I have this one memory that's showing up at the top of my head right now.  My mom is from New York.  Sometimes took me back to where she grew up.  One day went on a tour of her favorite side of town.  There was a favorite TV show that I loved to watch.  She said this is where it was filmed.  We were moving very, very fast.  And I wanted a photograph of it.  All I did was bring the camera and took a picture.  She said how do you know you got it?  I know I did.  Ironically when it came out a week letter it was a very good photograph.  That was the second camera.  The third camera in middle school is when I got the opportunity to go out of the country to my first ever out of country trip.  A study abroad program for one week.  I got to be with other deaf students or they were hard of hearing or sign language enthusiasts.  That was any first time being around others in utilized the sign language that I did learn.  That's when I got another camera that has video capabilities.  At the end of that trip, everyone who did not know sign language, mastered how to sign their name.  That was fun.  And then after that is when I also learned about film.  And darkroom photography. So high school we had one course about that.  Before moving to the digital camera that you see out there today.  That was where I ended up realizing that I could literally make a difference with this camera.  My voice can be with this camera.  Even though it had been full circle all of my life, it wasn't until high school that I realized that I could actually make a living off of this.

DOUG ROLAND:  I am wondering, there are a lot of artists that we learn about, painters per say.  Sometimes -- my brother is going to kill me.  He is an art historian guy and artist himself.  The fact that I am not recalling this famous painter he is going to kill me.  There was one famous painter that I should know that his style historians say was very much informed by -- I don't know if he is nearsighted or farsighted with his eyesight that created his style that ended up being his signature.  Do you find being a photographer coming from a unique perspective having one eye does that come through from your photography?  From an artistic or technical standpoint?  Do you find ways that informed your approach as a photographer.

ZAAKIRAH NAYYAR:  Yes actually.  The first thing that comes to my mind when living in Washington, D.C. to study professional photography, I was with a family friend who was also a photographer.  One day we went out and about and did street photography.  And we took a few photos before lunch break and during lunch break I showed him some of my photos.  He made this comment that has stuck with me for years of saying:  You actually by default have the photographer's eye.  If you think about it, before smart phone photography, the way to see the photograph is looking in the view finder.  That requires you looking in with one eye only.  Most people are squinting to see the photograph.  But me I don't have to.  I see it with one eye.  That I think kind of did attribute to always seeing a photograph any way after school my eyes were trained in that way.  But by default I have the photographer's eye.

DOUG ROLAND:  I love that.  You know what’s so funny, even as someone, myself, as a filmmaker and certainly stared through the barrel of a lens plenty of times.  I never thought of it that way.  Again we are closing one eye to see what a picture will look like to get that dimension that will more be simulate a camera lens.  That is how you see the world.  Quite literally as a photographer, as a photographic lens.  That's so interesting.  I genuinely -- now that you say it it is quite obvious in a lot of ways.  But I never would have thought about it without you laying that out.  That is really interesting. I am really curious.  You mentioned before when you were talking about your story, it was hard to find people that had your experience or similar to your experience.  Obviously to relate that to the deafblind community something that I learned a lot through this platform of Feeling Through Live, talking to a lot of different people in the community, that obviously the deafblind community has quite a variance to it in the spectrum of manifestations of it.  Oftentimes I have heard that echo that there are certain manifestations people feel like they can't find someone that is like their, living their specific experience.  Can you talk a little bit more about what it's like growing up, on the one hand feeling that no one else is quite having the same experience as you were?  Is that a fair way to put it even?  I don't want to put words in your mouth.

ZAAKIRAH NAYYAR:  That is definitely a fair way to put it.  For the longest time I always felt like I am the only one.  I am multi-dimensional anyways.  As a woman and African-American and cancer survivor and the religious factor I practice the religion of Islam.  I technically am the only one.  But I always want to rewind and you mentioned Emily, who is watching.  And she's not only connected us, but also connected my mom to that community of other resources for me to have the ADA resources that I really needed in both my private schools, technical schools, charter schools and the whole bit.  Through Emily also is when I also got to meet other African-American females who had the same exact same cancer that I had.  May their souls rest in peace.  There are a couple that have already passed on.  It was so exciting to spend that time with them of wow, we have so much in common.  Wow I am not the only one.  Wow we went through the same exact thing.  And wow, my life has more purpose now because I am still standing and I feel like also they are my angels of I get to continue to live the life fully because they didn't get the opportunity to do so.  Once I did meet other African-American women and African-American men who had the same cancer that I had, it was really exciting.  But at the same time I am still the only one considering also that I would like to still have vision.  I have one vision in one eye.  Most of them are already completely blind.  Some are completely deaf.  For me I am hearing.  I can hear you, I can read your lips and I can understand you.  You know.  As a result it is also attributed to not only the confidence but also the having the accessibility of being able to still speak and write and podcast and the whole bit.

DOUG ROLAND:  And just from the opportunity that is we have had to connect so far and obviously learning more about you today as well, you seem like someone who is really resilient and really able to operate in kind of any setting I imagine.  Is there something particularly important about finding community that's specifically has a very similar shared experience?  Does that add another dimension that you can't really get in other places?

ZAAKIRAH NAYYAR:  Yes and no.  Because once again we are all the same.  Under all of the layers we are all the same.  But at the same time it's like marrying.  When you find your own half it is literally exciting and more relatable and more exhilarating.  I think that is also why it is important for me to find that sense of community for the moment where I do feel like I am comparing myself to those who are not similar to me.  I think about the fact that there are people who I can talk to and they understand what I am going through.  Because we literally are going through the exact same thing.

DOUG ROLAND:  Uh-huh.  I am going to take a quick pause for an interpreter shift here.  Alana, we are good to go?  Great.  Continuing here.  Kind of related to this, but I want to touch on this before we move into all of the awesome stuff that you are doing now.  Before I get into that, if you are watching we have a good bit left to our really interesting conversation.  If you are watching on Facebook share this episode it helps.  YouTube feel free to send a link to people.  We have plenty of left in this conversation.  If you have any questions throughout the rest of this, type in the chat box or comment as you are is great as well.  Continuing here, to borrow your words here -- I think they are apt ones.  You are a miracle baby.  Quite literally given the odds of what the cancer that you had was at that time.  And it is obviously something that you have also described that your mom told it how it is when you asked her questions as a young kid.  I am using quotation marks around "miracle kid." But how do you feel being this miracle baby beating the odds just to be here?  How do you feel this informed your life thus far?

ZAAKIRAH NAYYAR:  I want to say the first person who coined the term "miracle baby" was the doctor that performed the surgery.  He coined it first.  For me I didn't take it into full consideration or understand the full capacity of it until I started to speak on it in my own words.  Instead of being bullied by the fact that I have one eye or so called lazy eye or four eye -- because I wear protective glasses when I am out and about.  But in my own words I took it to my own to say I am a cancer survivor.  I survived more than you can imagine.  It wasn't until I started to speak up and advocate for myself I began to believe the word "miracle and survivor" and understand how powerful and full of resilience I do have and how much I live a life on purpose.  Because also not only did I get that from my mom, have fun celebrate your birthday all the time or travel to the place that is you want to go to, do the things that you want to do.  Because tomorrow is truly not promised.  Especially for my type of cancer.  Even though I am in remission now, I am in good health, anything can change at the very moment.

DOUG ROLAND:  Is that something -- you said you are going for somewhat regular checkups for that specifically.  Is that something that you think about a lot?  Or is it just so much part of your life that kind of you go about it and it is what it is?  What is your relationship to that at this point?

ZAAKIRAH NAYYAR:  It is a little bit of both.  I have actually had people ask me, how are you so laid back about all of this?  I’m like, well, I have been dealing with it for a very, very long time.  Two, I am very self-aware.  And three, whatever happens happens.  Yes I do take the precautions of going to a doctor regularly.  But then I also am confident in my purpose also to not try to let it dwell in my every single day.  But it does get hard sometimes of just wondering what if or just wondering when is the day will come and what happens if I do fully lose my hearing or fully lose my vision or anything else could happen.

DOUG ROLAND:  Do you find any connection between again your miracle baby origins and your faith?  Do those intertwine in any way for you.

ZAAKIRAH NAYYAR:  Yes actually.  Very much so.  My parents instilled in me at a very young age the power of prayer.  That is something that my mom wrote about in the book while they were waiting for me to get out of surgery the doctor led them to a prayer room to spend time in prayer and spend time in nature and also learn how to meditate.  Just understand that it is what it is.  I accept the things that you cannot change but have the strength and courage to speak up on the things that you can.

DOUG ROLAND:  Yeah.  Well said.  You've obviously seem like you don't take life for granted.  You are invested in a lot of different things.  I want to kind of talk about all of the things you are doing.  We started to talk about your book.  Why don't we go into that first.  Again, you are an author, podcaster, brand strategist, a photographer.  But talk about the author side.  How did that book -- again it is autobiographical.  Telling your personal story.  How did that book come about?

ZAAKIRAH NAYYAR:  Technically it was my mom's idea first.  She said that when I was younger I asked her:  When are you going to write my story?  Technically she was doing that.  She had her journal for 18 years of my life and documented as often as possible the day in the life of Z.  And then she did get the opportunity to start her own medical blog.  She did a blog from the medical perspective, which was great.  Doing much better than me.  Because I started blogging about my travels.  And then she got the opportunity to have that book published through got to send the manuscript off to a publisher.  Then sent it to me for my approval.  But as I was reading it, I felt like something was missing.  I said I think there is some way we can tweak this and change it.  And she was:  Have at it.  This is your story.  That is when it came about also.  I realized oh I shouldn't have done that.  Now I have to hear and talk about my story in the life that I am not used to.  It worked out that officially 2018, 2019, when my mom and I both agreed to disagree and sat down on what we wanted to share in the book and how we wanted it to be not only just for all cancer survivors -- whether you have retinal blastoma or RB or a different kind of cancer.  There are a lot of other childhood cancers.  September is Childhood Cancer Awareness Month.  So we wanted to kind of generalize the book to be more on the modern perspective, but also on the lines of books like Diary of Anne Frank and Chicken Soup For the Soul.  I had those when I grew up.  That is where we tweaked it a little bit and thankfully the Amazon reviews said so far:  I am not a cancer survivor but I needed this book.

DOUG ROLAND:  I love to hear that.  You made a mention about this before.  But in the process of looking back and writing about your experiences thus far, did you see things differently kind of looking back at them?  And how did that -- what was that experience like for you and what affect did it have to go back to the beginning of your life and really sit with these events in order to be able to relay them to other people?  What was that like, that experience?

ZAAKIRAH NAYYAR:  It was definitely hard.  But also healing.  I had to realize it was my therapy too.  My way to heal in order for me to heal before I can fully help someone else. Then with reflecting, I was able to realize that there's always been little bits and pieces that followed and stayed with me in a sense of always being optimistic, always being happy go lucky type of girl and always being creative.  I always loved to create.  Even though I love music, even though of course it is hard to pick up on understanding lyrics, I also love to just create and write and story tell.  I then was able to realize how, how much everything connected.  Dots were connected.  I loved being able to realize that when I reflected before the book was published.  How everything was a puzzle piece being connected.  Also because I was an only child growing up.  I am not the only sibling.  But I am the only child growing up.  I spent a lot of time by myself.

DOUG ROLAND:  I am going to hold one more second for another interpreter switch real quick here  I think Alana is going to adjust her lighting.  Let me -- great.  Are we good?  You are good to go still?  That's helpful.  Great.  I am going to switch back one second here.  All set.  Great, perfect.  More light.  Did the book come before the podcasting?  Or did those kind of happen simultaneously maybe?

ZAAKIRAH NAYYAR:  Kind of coincidentally it is a marketing strategy I learned as well.  If I knew I am going to get more people to understand my story and also for me to be practice talk about my story, the podcast came first and then the book came later.  The first season -- if you listen back to episode one of The Living Legacy podcast -- which now the theme is woman of purpose and stories of resilience.  I talk to other creative and business owners and women of faith.  But the first season started out with solo episodes talking about the cancer and hearing loss and talking about my religious feat as well.  I got to interview any dad and enter few my mom as well (faith) it started out as a marketing tactic to get more people aware of cancer and who I am aside from how they knew me as the photographer and brand strategist -- however they knew me.  It was my way to be able to tell my story before the book came out.  That helps to be more confident in speaking up about it.

DOUG ROLAND:  About that podcast, again I was telling you before we got started I have had the privilege to listen to a bunch of episodes you.  That is really great.  Where can people find that?

ZAAKIRAH NAYYAR:  The Living Legacy podcast is everywhere.  On I Heart Radio, Apple, Spotify,  Stitcher, Pandora.  There are a few place to listen without having to log in.  Tune in is an option too.  Anywhere you can Google search "Living Legacy Podcast" and you will be able to find it.

DOUG ROLAND:  Awesome.  It is really great.  You obviously really know what you are doing, not just as a host but technically it is great well put together.  I imagine you have been fighting some urges not to take over as host being on the other side of the coin getting interviewed.  Again you were talking about the focus now particularly -- obviously -- not obviously but obvious to me because I have listened to it.  You have shared a lot of your personal journey through that platform as well.  But a lot of your focus as of late is focusing on women of resilience and purpose.  And I am wondering what kind of moved you to really want to make it a platform specifically for that at this point?

ZAAKIRAH NAYYAR:  That is a good question.  I am trying to remember how it started.  I have always been a people person.  I always valued connection and relationships in that way.  It started out with finding ways to include the people that I know and love on the podcast and people loved that.  I think my first couple of guests were of course my dad then my first guest on episode 3 when I got to travel to Ghana west Africa, to interview a friend of my dad.  So we met and she become my auntie in Washington, D.C. while I was living out there, you know, new to student living, and the whole bit.  So after that I got to interview her.  My first few guests were people I know and love.  That became a theme as I continued my season and join more Facebook groups and connect with other amazing women who were just as creative as I was.  That kept the podcast going as well.  Those types of guests.  Like any other favorite talk show, people love to see those interactions.  I think that is how it continued, including the people that I know and love.  That know me.  And then we got to converse and have it -- have a recorder with us.  We have so many amazing conversations behind closed doors.  Have a recorder and publicly display it.  Affection in that way.

DOUG ROLAND:  It is knowing a lot of great interesting people, having great conversations and going like we should record this.  I feel like a other people would appreciate that.  Sounds like an element of that.

ZAAKIRAH NAYYAR:  Exactly.

DOUG ROLAND:  This is kind of connected to the theme of the women that you feature on your podcast.  But I am wondering, you had mentioned your intersectionality as a women who is of the disability community, who is African American, who is of Islamic faith, and as a woman.  Obviously a lot of what is happening right now very much exemplified through Black Lives Matter but obviously offshoots of that have been growing as far as Black disabled lives matter or hash tag disabled lives matter.  But variations of that.  You uniquely fall into a lot of those categories of those communities that are really starting to get more focused.  And get louder voices.  That have been kind of historically under represented and not have had some of the platforms that are growing right now.  What's your relationship to that been particularly over the last several months?

ZAAKIRAH NAYYAR:  I think there's a phrase -- it was a meme that showed up on the web.  Talked about Millennials in general.  I am a Millennial.  It showed this meme of how Millennials are basically numb to it all because it is so much and happening so often.  But it doesn't mean that we don't feel it or don't relate to it.  For me as a deafblind woman, I feel even more so for those who are deaf and they do get pulled over by the police and the police are ignorant in the sense if they don't know that someone is hard of hearing.  So if they don't know sign, they would assume it is a gang sign or if someone is not responding because they don't understand what they are saying or they don't speak, that they think that they are trying to disobey.  Moments like that connect more to me because just a matter of having that understanding, that awareness of okay, this person is just different not trying to break my rules in that way.  Also I think the options out there that you can have a card with you in your wallet when you take your wallet out to say "I am deaf and hard of hearing" I am not ignoring you.  And in my case I am speak up and say if they don't see my hearing aids when I turn to get my ID sorry I am hard of hearing.  I may have a hard time hearing you.  Please speak up.  I think that is the most important thing as well and being advocates for those who cannot speak up.  It is close to my heart.

DOUG ROLAND:  You make me think of a friend of mine a young Black man wanted to celebrate his birthday by doing a road trip across the country to see a lot of places.  All of the Black women in his life talked him out of that.  He is hard of hearing as well.  They said you are just kind of playing with fire there.  To speak to what you are saying, kind of that double layed danger if you are a person of color and also hard of hearing in a situation like that is an unfortunate reality but a reality nonetheless to be very aware of to know how that endangers you in a situation and how to do your best to counteract that.  I think that is something for me and a lot of people out there, it's been recently a very eye opening experience to learn about the prevalence of that.  For people like myself who don't have to deal -- who don't have that experience and don't deal with that on a moment to moment basis.  For me it was just something in dialoguing with him about that I found really impactful, that it's just a juxtaposition between such an innocent desire to celebrate a birthday by having a road trip and driving and seeing a lot of people and it being not safe to do something like that.  That resonated with me.  That is something that I personally would have the privilege to not think twice about it.

ZAAKIRAH NAYYAR:  For me the advice to give, not necessarily let it stop you but still be very aware.  I think for me also, it would interesting because my first out of country trip, I never wanted to be alone for that exact reason.  One interacting with people that don't understand.  If I don't understand them they think I am ignoring them.  But my suggestion is not let it stop you.  Utilize the resources from ADA, American Cancer Society, that tell you how to really interact with and what tools to keep with you.  Not to fully travel alone.  I never really did solo trips.  My only so called solo trip was South Africa.  That is the last place I went to before all of this went down.

DOUG ROLAND:  That is a good last place to go to.

ZAAKIRAH NAYYAR:  But it was fun and I felt safe.  It was a English speaking country.  I was never alone.  Now there is a power of Facebook group.  I could meet up.  Is anybody going to be on this side of town today?  I want to eat.  I don't have to be fully alone.  Turn that state in my mind no matter where I traveled to, I heavily trust the buddy system.  It was different because some may see it as being co-dependent in that way.  But at the same time I am very much independent.  As long as I can have even when I drive today in the U.S., I have my location on, if I was in an Uber, I will send my location to someone and also thank goodness for Uber.  I was driving with them for a little while.  That was fun.  I love driving.  My dad loves driving.  I got it from him.  There is a feature on there where I could say:  I am hard of hearing.  It was fun because they would -- most riders did not understand how hard of hearing I was.  By the time they get in the car and they hear me say hi to them, oh I thought they said you are deaf.  Deaf or hard of hearing.  I am the latter.

It was always a good experience of being able to have that feature of I am hard of hearing.  At least that gives people to understanding of saying are you hearing or do I need to sign or especially in the case I do eventually lose my vision, do you need braille?  When I do need it to speak and tell my story, things of that sort.  Great with technology in this time and age to have those features available.

DOUG ROLAND:  Yeah.  I noticed a couple of times when I got into Ubers I got that message.  It is great they do that.  To touch on the point you were just saying, you get in and hear someone and they say I thought you were deaf.  Not really understanding again the different manifestations of that.  Again I am sure that is something that you encounter in a dual way as someone who is hard of hearing and also sees through one eye, how often -- what is it like encountering new people and kind of you know continually -- I imagine there are a lot of people who don't really understand that like kind of think of it as a binary thing.  Either you see or you are blind.  Either you hear or you are deaf.  Obviously you are certainly on the spectrum in both of those categories.  Is that something that you have to keep explaining to people?  And if so, do you have a good spiel down for that?  Is it frustrating?

ZAAKIRAH NAYYAR:  It is still a challenge.  Especially in the online world if you put the words "deafblind" how are you able to see what you are typing or hear what the person is saying?  I do have to explain it in a sense of that I can still see you and still hear you.  Even when it was time for me to work -- I occasionally work part-time jobs -- when I was working my HR managers know and managers know.  When I interact with co-workers I tell them.  Most of the people want to talk soft especially when they gossip and not look at you and when their back is to you.  I want to understand what you are saying.  I wear hearing aids and I have to advocate for myself in that way.  It is not something easy.  Not necessarily something that I brag about, but I have become more comfortable with speaking confidently on.  I am sure that's something that when you have to do it over and over again it is something that you have to kind of get used to I would imagine.  So with the time left, I would love to touch on the brand strategist side of yourself.  I know that's something that has been a growing part of your life.  Can you tell us a little bit more about your work in that space?

ZAAKIRAH NAYYAR:  Yes.  Officially in 2018 I started a creative marketing agency called Phocus Media Group, focus with the “P-H.”  I started it because I wanted it to be more inclusive for other creatives and photographers to have the opportunity that I have had to photograph events and travels and celebrities.  But I realized as I started learning more about Facebook and Instagram, I realized that there are other small businesses who need to understand how to use it for their own business.  And that's when I was able to also take what I love of being creative -- not only photographing but loving things that are colorful and put all of that into one.  Of course I take my podcasting skills and do that because I learned how to do videography a little bit and I helped people learn to blog about it.  Creating marketing agency was full circle for me.  What I spend a lot of my time doing now in 2020 on the computer a lot, typing a lot, thank goodness for zoom that I have video and read their lips and don't have to mention hard of hearing if I don't have to.  To continue to work in that way.  That is fun.  A great way to interact.  I think that's what it is full circle that I do as a brand strategist.  I love to always work with women.  Because the defect thing about the pay wage gap between men and women.  I make sure that I work with women when I have my team members and whatnot.  And also in a sense of sometimes my clientele I love to work with women as well.  I understand as moms they are very busy.  That's what I do as a brand strategist and a business owner.

DOUG ROLAND:  Like you said, someone who is multi-talented as you are, it is a nice way to bring all of the skill sets together to use for one common goal.  I understand too -- I saw because we follow each other on social media -- I saw you are working in the A&R world as well?

ZAAKIRAH NAYYAR:  Yes.

DOUG ROLAND:  Can you tell me a little about that?

ZAAKIRAH NAYYAR:  Yeah.  That's been an incredible opportunity.  Going back to my first favorite songs were from sound track movies.  I was one of the kids that were in front of the TV.  Glued.  Not because I could hear it but because if I loved something I was glued to the TV.  I was always like that with music.  Music was playing in the room with my mom and on the road trip.  And thank goodness I have had the opportunity to attend music festivals.  I miss those.  Those were the best opportunities for deaf or hard of hearing.  You don't have to hear anybody talk, you hit literally feel the music through your chest.  Ironically because it is a huge part of my life and still blessed to hear music, I am able to support independent music artist to get their music out there.  If I hear a new artist -- this is before the days of Spotify -- if I listen to the album I can predict what their single will be before they release it.  I am 99% of the time right.  I like to be able to do that for music artists to get music out that there people like.  I love to choose the 90 types of music.  All genres really.  But I feel like that was the best era, at least for me.  If we can find artists that passionate about music as much as I am about photography, I feel like I have done my job as an A&R or artist and repertoire, basically the one that scouts or finds music talent for -- I want to say labels in this way, they are intentionally independent.  But more ways of exposure.

DOUG ROLAND:  I am really interested to see what other roles you add to your life here.  We are adding up those slashes on a daily basis here.  But again, it is something that you are obviously someone who is passionate about life and just comes out in a lot of different spaces.  But, yeah, it's been such a pleasure talking to you today.  We are going to have to connect again at some point in the future.  I am sure there is plenty left to discuss.  Thanks for sharing everything that you did today.  I learned a whole lot from our conversation today.  I hope people watching got a lot out of it as well.  One last time, grab that book and end with a little bit of -- why don't you plug that one more time and anything else that you want to direct people to.

ZAAKIRAH NAYYAR:  This book is Seeing Life Through a Different Lens.  You can find it on Amazon.  I also have website you can find my social media on my website.  You can also find my other services on my website.  And it's my first name and my middle name dot com.  zaakirahnayyar.com. That's where you can find everything and I love to read messages, especially when you love -- what part you love about the book or the podcast.  Because I am a creator.  These are all my babies.  I want to make sure that my babies are doing okay.  I love to receive those types of love notes.  That's great.

DOUG ROLAND:  Love it.  Thanks again for joining us today.  Thank you everyone who tuned in.  A reminder for those who want to check out The Feeling Through Experience we are doing another live stream of that September 12th, 4pm pacific time, 7:00pm eastern time.  It is free.  Just go to feelingthrough.com/register to sign up for the free e-ticket.  It’s going to be awesome.  We have great guest, I mean panelists joining us for that installment of The Feeling Through Experience.  If you know what it is and seen it before -- come join us.  If you are not sure what it is, go to feelingthrough.com where you can learn more about it.  And, yeah, we'll see you for Feeling Through Live next Friday same time same place.  Until then have a great weekend.  Bye.

Feeling Through Live • Episode 20: The Path to Prosperity is Paved with Perseverance

[Doug]: Welcome everybody to episode 20 of Feeling Through Live. I'm joined here today by Commissioner D'Arcangelo of the Massachusetts Commission for the Blind and something that's really exciting about today's episode is that not only are we celebrating our 20th episode, which is pretty exciting, but, today is the very day that is the two year anniversary of Commissioner, D'Arcangelo being commissioner of Massachusetts, Commission for the Blind. So really happy to celebrate that with you today, Commissioner.  

[David]: Yes. Thank you, Doug. I appreciate that. And thank you everyone for joining. It's great to be here. It's David D'Arcangelo, Commissioner of Mass Commission for the Blind and Doug, before you begin, let me just thank you for the work you're doing in our community, in the blindness community. And particularly for people with deafblindness, Feeling Through the movie is, it's a powerful movie. It's terrific and it's, I'm celebrating it. And I think everybody here, uh, if you're coming here, you've probably seen the movie and are impressed with the movie, just like I was. So thank you. Thank you for what you're doing to build a community here.  

[Doug]: Well, thank you Commissioner. I really appreciate that specifically coming from you. That means a whole great deal. So thank you for that. And for those of you who have joined us for past Feeling Through Experiences, you also might, you might recognize the Commissioner from our Woods Hole screening that we did a couple of, few weeks ago in a very spirited and great conversation that we had in that panel discussion there. So, you know, ever since then, I've been eager to have you on Feeling Through Live. So I'm glad we finally worked that out and, you know, today we're going to be talking about a bunch of different things, you know, but something that, something that really struck me when we, when we got to connect was, you had mentioned that kind of a personal life motto of yours is that "the path to prosperity is paved with perseverance." And certainly that in and of itself is something that really rings in the ear and really evokes a whole lot of thoughts and feelings around that. But I'd love for you in your own words to really tell us what that means to you and why that is something that really is like a driving force in your life on a day to day basis.  

[David]: Yeah. Thank you. Thank you for recognizing that. I truly do value that and I've used it personally for a number of years and it was during the threshold commencement speech I gave. Threshold as a program within Lesley University and what they do is they provide people with disabilities within a post secondary school college experience. So it's people who normally would not be going to college, but they get an opportunity to go to college at Lesley University at this program, the threshold program, and it's for people with disabilities. And it tends to be people with intellectual and developmental disabilities, but it's people of all disabilities and abilities that I don't even like to say disabilities. I'd just like to say varying levels of ability. And so anyways, I, they had asked me to give the commencement address for their graduating group. And so it was the first time I used it was during that commencement address. And I felt, many parents came up to me afterwards and some of the students and graduates came up to me afterwards and said, you know, that really resonated with me. I think he should, you should try to get that message out more. So I've been trying to do that. And I really believe that prosperity is something that everybody seeks. And although we have challenges in America right now with politically and socially and, the COVID and financial and so many different challenges we're facing right now, there's still tremendous opportunity. And really, I think everybody's trying to pursue their own American dream, or at least that's one of the things we try to get them to think of are our consumers at Massachusetts Commission for the Blind is to pursue that and really independence and self determination. Those are, those are important goals for everybody. And I think even more so for people with blindness or deafness or other, again, other types of disabilities, so prosperity is that, is that end goal. But sometimes it's, it's hard to see when you're in a certain area of challenge. So I really believe that it is a path and it's a journey and all of these things we do along that path pave the way for us. So again, the path to prosperity is paved by perseverance. You gotta hang in there. If it was easy, everybody would do it. And it would, you know, it would be simply done. You really have to go through adversity so many times, and it's easy to say and much tougher to do. And I know that from my own experiences, being legally blind and, you know, having parts of my life where I couldn't see at all, so persevere hang in there, things will get better and you, you too will get prosperity.  

[Doug]: And I want to get a little bit more to your personal life in a moment, but just again, on that, on that motto, what, you know, what you just explained so well that I love about it is first and foremost, I love that it really embraces, it embraces challenge in that it is through those challenges and, challenges and obstacles, that are really part of the equation that, that actually leads to prosperity. You can't have prosperity without that. It's almost something that, that is very much a part of, of thriving and being prosperous is heading straight into and really dealing with and almost embracing those challenges is what I kind of get from what you're saying. And the other thing that I think is so important, and I know this is certainly something that you can not only speak to, but I think your personal journey is really emblematic of is, a lot of times I've found as someone who certainly bridges two worlds of someone who very much knows what it's like not too, too long ago, to know very little about, the disability, any disability communities, but particularly deafblind, and low vision and blind to being someone who's obviously worked very daily in that space now for the last few years and something that I know that is often surprising, I think to people that know very little is they sometimes think of certain disability communities as like, well, I hope they can like, just get by, or I hope they can like, just get what they need to like live. And what I love about what you're saying is you're talking about prosperity. You're talking about, you know, those higher needs beyond the basic ones of survival, of really thriving, of really living a fruitful life that, that really is expansive. And I know that your personal journey is really emblematic of that as well, but that those are the two things that I really get from, from your personal motto there.  

[David]: Well, thank you. I really put thought into it and tried to capture that. So I'm honored that you would recognize that back to your first point a little bit. So there's an old song. I don't know if you've heard the singer Wilson Pickett, he's got a great tune. It's called "Don't Let That Green Grass Fool You." Right. And everybody wants to, in this age of social media and people are posting the best pics of them in the perfect situation. And then they're photoshopping and making everything look perfect. Nothing's perfect. The reality is nothing is perfect, right? So, so to be aspirational is the way you want to go, right? It's always, what can I do to improve my situation? What can I do to make things better for myself? And then if I can make things better for myself, I can then go to the point where I'm helping others, helping society, lending my talents to society, to make things better. And one of the things that drives me is nearly two thirds of all working age people with disabilities are not in the labor force. Think of that. People with disabilities, by the way, have the largest minority group somewhere between 12 and 20% of our entire population are people with disabilities. And two thirds of all working age, people with disabilities are not even in the labor force, forget about unemployment. If you're unemployed, at least you're in the labor force. 63% are not even in the labor force. That means they're, they're all set. I don't even want to work. And so that to me, that keeps me up at night and that really drives me because I really believed that working and having an occupation is noble on so many levels. It's, it's important for the person to feel dignity and self determination and be able to provide for themselves and independence and all of the things associated with work, but really the very identity of who you are. I would ask anybody who's listening in today, go to the supermarket and strike up a conversation with somebody or the library or wherever you happen to see somebody. And variablely if you ask them, oh, so what do you do? Nine times out of 10, the person will answer with what their occupation is. And if you don't have an occupation, or if you don't even want to be in the labor force, what are you identifying as? And so everybody has talent. What can we do to get at everybody's talent to leverage that for themselves and for society? So that again is part of the path to prosperity is paid by perseverance because you're prosperous when you are gainfully employed and earning your own money and able to save up for a vacation or, or, a new house or an iPad or whatever it is you you choose to do. Right. So, so that's a little part of it. And then to your second part, again, it's a journey and it's a path. And what we do every day at the Massachusetts Commission for the Blind is really try to on a case by case basis, find out what success is going to look and prosperity is going to look like for every person individually, because what may work well for one consumer or one of our, we call it clients, we call them consumers. What works well for one of our consumers may not necessarily work well for another consumer. And we have 26,000 consumers registered with us. And all that means is that we have 26,000 individual outlooks with 26,000 separate sets of vision. And so everybody's unique and everybody's different. And I think we need to, we remember that and we try to leverage the institutional knowledge. We have to, again, lead to that path to prosperity.  

[Doug]: Yeah, absolutely. And you know, to something that you were, you were just talking about, you know, I really actually, you know, before we kind of, I'd love to go actually a little bit into your personal story, but before we kinda go off on other topics, because I don't want to miss that because I know it's also kind of the birthing place for that personal motto. So like, if you will, could you take it, can you walk us through kind of the, I guess you could say the origin stories of that being your, your personal life and growing up and where that kind of like originates from.  

[David]: Sure. Yeah. I'll give you the, I'll give you the cliff notes version or am I dating you myself? I'll give you the Wikipedia version. So I was, I was born legally blind and the reason why they were able to know that I had legal blindness or a good chance of having it was my brother has legal blindness, same disease that I have. I have what's called juvenile X-linked retinoschisis wet. Long way to say that basically the macular of my retina, I was kind of born with like the, the macular is of like a 90 year old person. Like they really deteriorated there. There's not much there. So some of my earliest memories are going to the doctor and the doctor trying to persuade my parents, look, you should sign him up for services. You should get them into special school, teach him braille, like the whole thing. And my parents always trying to like encourage me to do that. And I was always very resistant because I didn't want to be treated differently and things like that. And so all along the way, I would periodically go back into the doctor and some of the best eye doctors in the world are here in Boston, at Mass Eye and Ear. And again, they would try to convince me and I would take some of the advice and I would, I would get some counseling from MCB and, and from my school and other places. But you know, still, always somewhat resistant to the point where then I was about 17, 18 years old. I went in and saw the new doctor that came in and he said, dad, if it hasn't happened by now, don't worry. It's not going to happen. Go out and live life to the fullest. So I took him at his word and I went out and really did live life to the fullest and started doing all kinds of activities that maybe I was hesitant to do before, like surfing and you know, riding my bike really fast and, and doing things that I probably shouldn't have been doing until one point I went out and I went skiing and I crashed and I detached my retina and went completely blind. And so as I was lying in the bed with no vision at all saying, well, what am I going to do now? Like, this is, this is terrible. This is bad. Like, what am I going to do? I can't see, like in it's really the type of suffering there is very serious and it's, it's almost hopeless. And so I was blessed to be able to receive some very innovative surgeries at the time, usually to do one of the surgeries would have been a big deal. They taught four of the surgeries together and did them all at once Sunday and basically pasted me back together. You know, I grew up my whole life, actually, this my right eye was my better eye, but I left. I wasn't. So they actually reattached my retina from my left eye. So now instead of seeing things out of my right, I was seeing things out of my left eye and I never had glasses before, but optics had advanced to the point where now I could be fitted with glasses, but now if I take off my glasses, I can't even see the camera or the screen or the light. So when I put my glasses on I'm right on that 20/200 determination level, so I'm not, a tweener, you know, the, the legally blind, I've just enough vision to be legally blind, but still appreciate being able to see. And I, and I have constant blood in my eye floaters, that's the wet portion of my disease. So, uh, oftentimes depending upon the day or the barometric pressure, I have different amounts of blood in my eye that can be difficult to see through. So sometimes I wear sunglasses just because of the sensitivity and light and things like that. Anyway, it's the reason why I go to that detail is to let you know that many people, like some of them even fully blind people. I remember them calling me like illegally blind, like, oh, you can see. And yes, I can't see. And I'm blessed to be able to see, but the challenges are real. I can't drive. And so that really provides a prerogative to me because I've known various sets of vision throughout my life and continue to know various sets of vision. So I really bring that to bear for our consumers, because as many consumers that are fully blind that are on our register, which is actually somewhat uncommon, only about 2 to 3000 of the people on our central register are completely 100% blind. There's this message. Any that are like me, that have, they're right on that 20/200 determination where they can see out of one eye or they can see colors, or they can, they have a limited field division or something like that. So it's actually a good teaching point to be able to let people know that not all people with blindness have the cane or the guide dog or can't see absolutely at all. Matter of fact, most people with blindness do have some usable vision. So that's important. I think for people to know that just because you're blind doesn't mean you can't see, and it certainly doesn't mean that you don't have vision because I think vision now goes beyond sight and a little bit of a play on words, but I think it's true there. I think that, yeah, that, uh, site is the actual physical occurrence of it. Right. But the vision is it's having the ability to be able to use that sight beyond what you just, what you see. So that's just a little bit about my own personal story and you don't want to hear more, but it's basically, uh, you know, my, then that led me to public service, where I went and served in the governor's office. I worked in the state Senate and, that I ran for office. I'm one of the only people with a disclosed disability to become a city counselor at large in my hometown. So I became an elected official. Then I ran for statewide office. So I'm one of the few people in Massachusetts, certainly to ever reach a statewide ballot as a person with a disability. So I tried to, I try to emulate for people with disabilities and people with blindness that, that you can do it. And I failed my first time running for city council. I failed, I didn't win, but I ran again and I won. I persevered. So I'm trying to take my own advice there, and learn from failure. Failure if you do it. I think if you do something with a plan and you're positive about it and you have goals and it's structured and you're, uh, and you're working within, you know, a rational, a rational basis that then if it doesn't work out, there are things you can learn from that to build on for the next time, or to take into another aspect of your life to try to, again, try to improve your condition. Because that's really what I'm all about is I'm trying to improve the human condition through public service, trying to lend whatever talent I have to the Massachusetts Commission for the Blind, so that we can serve our consumers best.  

[Doug]: You know, and just, because I want to get a little bit more into what you do at MCB and, and you know, how your also political life relates to issues of advocacy that I know are really important. And so some things that we also discussed in our last discussion, but yeah, just a question as far as, you know, that very compellingly told personal story that you shared with us. And I'm just wondering, you know, in relation to what you shared about, you know, some people hearing what your glasses prescription is and saying, oh, well you're not really blind. And then talking and opening up the topic of the spectrum of that community and how it's not a binary blind/sighted thing, but there's a real spectrum there. I'm wondering in your own personal journey where you've described the experience of, you know, first as, as a child, understanding the prospect of potentially being blind with, you know, what you were diagnosed with and your brother before you, then being told, oh, no, like you're good. Like don't worry about it. And then having that accident that led to blindness and having this kind of like back and forth, almost seesaw rather than either it being something that was just there from birth and that's how it was, or there being like one very specific moment where you went from sighted to being blind and low vision. I'm wondering if there, if there was something in that back and forth, particularly that really kind of molded in a more specific way your experience and how that plays out in as commissioner and what you do in your work. Is that a clear question there?  

[David]: Yeah. Yeah. I get, I get similar questions like that all the time and it's really, uh, I try to be a humble person. I mean, whatever talents I have, I believe, I'm a believer, so I believe it comes from a higher power and, uh, I'm blessed to be here too. So whatever, whatever talents I have, I feel like I'm just kind of working through those talents, uh, in another way. So there's a little metaphysical piece to it though, just to be honest. Uh, but I still face that seesaw. I could wake up tomorrow sneeze and lose my vision. I could walk out and get hit in the head and detached my retina lose my vision. And those won't be happy times if, and when that happens, but I at least like I know now and like, I'll have to deal with it and everything else. So I think it's always an acceptance. I think like it's never a finite thing. It's never a finalized thing. It's always a process. And so I try to conduct myself that way. Like to me, there's not much, well, it's my way or the highway or it's this, or it's that or bright lines or, you know, it's all about a dialogue. It's all about what can we do because many of these solutions that we're seeking are complex. If they were easy, they would just be done. And then, but they're not easy. We have, again, if we have 26,000 consumers, we have 26,000 separate people to try to help ameliorate blindness for right in our original statute, it was to ameliorate blindness to, you know, so whatever we can do to put programs and services and tools in place to be able to assist people to overcome whatever obstacles or challenges they're facing as a result of lack of vision, because it's a very visual world, the world, the earth, and none of the people who evolved, evolved on it have set up systems in place that are geared towards being able to see. And so the, our population, which is a distinct minority is, is constantly trying to overcome that and problem solve for that. So I just see so many opportunities for our consumers because they're natural problem solvers people with blindness and people with disabilities for that matter are natural problem solvers in terms of always trying to think of a way around and how can I make this work for me? And so those are, those are tremendous qualifications when it comes to things like getting employed or getting involved with organizations or whatever, whatever you want, you're trying to do. That's, those are very positive attributes that many people kind of struggle with, but people with disabilities it's innate to them. So I really view that as a competitive advantage. So, but trying to get somebody who's newly blinded or, or has a new disability, you can't go right to that because I don't know, they're, they're still dealing with acceptance. They're still dealing with the suffering and the trauma, uh, because there there's quite a bit of stigma involved and stigma is a two way street. Oftentimes people think of it as stigma as it's just this one thing. It's just like society and it's, but it's, this stigma is from both the person out and from the, the out the society into the person, it's both. And so I think you really need to work on both to be able to come to terms and get to a comfort level where you can then start working on solutions.  

[Doug]: And, you know, just like, you're describing like two scenarios that I imagine MCB deals with both in someone who's maybe newly blind and, or still in a space of kind of really just coming to that acceptance and being, working on maybe skills that are needed to, being on their road to prosperity versus someone who's really ready and is seeking employment really like ,really ready to enter, say the workforce or that field of prosperity there. I imagine that something MCB deals with like both sides of that coin is that, and can you talk a little bit more about how you kind of field both sides of that?  

[David]: We have tremendous institutional knowledge that we can bring to bear. We're one of the oldest, if not the oldest state governmental blindness agency in the country and our central registry is a first of its kind anywhere. Uh, one of my predecessors, one of the first commissioners is Helen Keller of Mass Commission for the Blind. So, uh, the institutional knowledge we possess at MCB and my staff, I give all the credit to my staff. We have such a tremendous team who are completely mission-driven people and the talents that they bring, on me really all the time. I mean, the stories that are in MCB is tremendous. So really though some of the first services that we bring to bear for people are there is that acceptance, that acceptance to blindness counseling. Uh, and so in Massachusetts, the way that it works is through Massachusetts general law. When you go see your eye doctor, your eye doctor makes the determination. If you're legally blind, if you meet that 20/200 visual acuity, if you do, they're mandated by the law to report that visual acuity to us. At that point, we reach out to the consumer and let them know that we are their state government they're to work for them. And we have programs and services to bring to bear again, to help ameliorate their blindness. And that often starts with the adjustment to blindness counseling and then other bedrock things that we know that work, services like orientation and mobility services and assistive technology services. And then further along if they're of working age vocational rehabilitation services, or if they're an SR consumer, social rehabilitation consumer, they tend to be 65 and older. It's more of a support group model where we can get them with peers and they can talk about things because oftentimes the majority of our, uh, of our cases of our consumers at MCB have aged into blindness. So they've gone 30, 40, 50 years or more of their life with no usable vision. They weren't legally blind, but now because of age related macular degeneration or diabetic retinopathy or glaucoma, they've now aged into blindness. So again, no two are alike, right? So, so working with the consumer, who is the average age of our consumers, about 81 now working with an 85 year old woman who had a driver's license and, you know, spent most of her life, very independent with good vision, but now she doesn't, she's gotten to a point in her life where she doesn't have it, that person's circumstance is much different than somebody who was born totally blind and is 20 years old right now. And we're trying to get them into college and into, into vocational outcomes and things like that. So it really is case by case, but the themes are the same. It's acceptance to blindness it's, it's getting these bedrock skills of moving around in the orientation of mobility and being able to use technology.  

[Doug]: I'm going to hold just for a moment while we do an interpreter switch.  

[David]: Great. Great.  

[Doug]: All right. We are up and going here. Excellent. So continuing. Yeah. And you know, I imagine that as you described, as some people who have maybe aged into blindness or are still coming to acceptance of it, that are maybe on the cusp, I imagine there's some people that might try, because you mentioned how legally certain, they need to be reported to your institution. I imagine there's some people that try to kind of like bat that off or kind of go like, oh no, that's not me. They've gotten something wrong. I imagine that's also something you have to deal with from time to time.  

[David]: Yeah. We're constantly dealing with that, particularly around people's independence, because if you've had a driver's license for 30 years, 40 years, whatever, and you know, that independence is, is now ingrained within you. And if you get declared legally blind, we have an obligation. We coordinate with the registry of motor vehicles and we send them the, uh, you know, saying, look, you need to, here's a consumer we know about now, if they have a license, you've got to, you've got to alert them that they shouldn't have that license now. So we have people who go and they appeal that. And they're like, no, no, I'm not likely to buy it. They'll go back to their doctor. Obviously we want to keep people safe. People who are legally blind and blind should not be driving an automobile. Sorry, I am. I'm the biggest proponent of independence out there, but sorry, if you're legally blind and blind, you shouldn't be driving. It's not safe for you. It's not safe from public. And that those are very difficult situations. And, and again, that's where our counselors come in to work with the person to say to them, look, we have travel passes. There's ways you can still remain independent and travel around the Commonwealth of Massachusetts. And there's other things we can do here. So it's not easy, but that's why we're there. And we're trying,  

[Doug]: You know, the, and there's certainly something about Massachusetts, isn't there, in that, with the history that MCB has with, you know, Perkins, shout out to Perkins, our friends there, it's, it just feels like there's such a rich history of supporting the blind and low vision community there. I, which I imagine could probably do a whole history lesson on some other time, but at least just identifying that, I find that so interesting that so much of the history of blind services in this country seems to, if not originat in Massachusetts, certainly cross through there at some point.  

[David]: I mean, we've got a shout out to a number of our partners, Helen Keller National Center, Helen Keller was one of our first commissioners, Carroll Center for the Blind in Massachusetts, Perkins School for the Blind, MABVI, which is the Massachusetts Association of Blind and Visually Impaired. They're actually the first, they beat us, by like a year. They're actually like the first blind, the oldest blindness agency in the, in the nation. That's why we say we're the first governmental blindness agency, but, uh, so MABVI and just so many other programs I could go on. And on our radio reading services that we have may make all it, uh, sight loss services down the Cape, Lowel Center up in Lowel, National Braille Press is based here. I mean, and just all the other relationships we have with many national organizations and international organizations over the years. And, uh, so many people like my deputy commissioner, I think he's got 40 something years at MCB. We just had a retirement of somebody 43 years. One of our orientation and mobility director just got an award last week. Uh, and she has, I think, 41 years of service. So we do have, uh, we're blessed with riches, intellectual riches and, uh, really again, that institutional knowledge that we bring to bear for all of our consumers and the blindness community  

[Doug]: And, Hillary, who's writing says from Facebook points out the New England Consortium on DeafBlindness is another/  

[David]: Yeah. Thank you for that. I don't want to leave anybody out. I'm sure I left a lot out.  

[Doug]: I'm sure there's a few others we're missing out, but, but certainly a long list there. You know, I want to get back to employment for a second. Obviously that's something that is extremely important to you.,  

[David]: VR 100 vocational rehabilitation celebrates a hundred years this year. Yeah.  

[Doug]: Certainly we can talk about that. And I know it's something that's also very important, um, to our ongoing partners in Helen Keller Services and the Helen Keller National Center. You know, and getting back to something that you said before about the importance of employment in the sense of, that sense of, you know, identity and prosperity, and really, you know, that personal sense of, of, uh, really having an impact on the world and, and carving your own place in it. You know, I think there's also a lot of things to connect this to your political history as well. And the advocacy topics that we've discussed in the past. Also employment leads to buying power leads to a whole lot of other ripple effects of how much representation and thought various community, various communities are given, both by the media and in politics and so on and so forth. So certainly, you know, it goes, it covers everything from that personal sense of identity all the way down to how a community is perceived and treated by society as a whole. So certainlyit's, very important. Nilam wrote to us a little while ago, writing to us from Facebook. Hi, Nilam, she writes in reference to what you're talking about a little while ago, the statistics of two thirds of the disability population not in the workforce is alarming. What do we need to change that? Is it only about available options and infrastructure, or is job readiness and education a big part of the problem? So how would you start to answer that?  

[David]: Yeah, I would say thank you for the question, first of all. And if I had the best answer, we wouldn't be here right now. Right. But, that's what I'm in constant pursuit of is that answer. And I don't think it's one answer. I think it's a series of answers. And let me start with it this way. Doug, first shout out to you, and to audio described, I'm giving Doug a thumbs up for what you're doing, because really through Feeling Through the movie, you had an actor that was somebody who was deafblind. So often in movies and TV, when there is a person with a disability represented, which they're totally underrepresented by the way, characters, those characters often are not played by a person with a disability. So that's kind of like a double whammy. And I think that's kind of like my inroads to the answer here is there's, there's a saying in the disability community, nothing about us without us. Well, so let's get us involved. And that means on every level. So taking part in whether it's entertainment, public service, you know, any ideas of entrepreneurship, you would have jobs educational and the whole gamut of society. We've got to get our people involved and by not participation, you're not involved. So that's why I'm so alarmed by the two thirds of working age, people with disabilities, not in the labor force, because they're not even involved, right. So let's get them involved and, and becoming employed as a process. It's not just any one thing. It starts with mentoring and then to interning and then interviewing, and then getting a job and then getting another job. Because just because you get one job who in their life has one job, no, you go from job to job, and then you get promoted and things like that. So I encourage people to think of things as a process. It's not any one thing, but it's a process. And that process means people getting the education and the experience and the training and becoming employed and the, and the whole thing to it. So again, it's back to, back to my axiom, the path to prosperity is paved by perseverance. It's a vote, a path persevering, because not all the experiences you have are going to have the best outcome or the desired outcome, but you got to hang in there and you gotta keep trying, you got to do the 99 nos before you get the one yes. And I just really think let's go back to that two thirds for a second in that two thirds of all working age people with disabilities, without it, without who out of the labor force, there's talent. And somewhere in there, there's, I don't know a cure for cancer or a better light bulb or some app or a beautiful poem or something, but there is talent there. And as a society, we need that talent and individually, we want the people to realize their talent. So that's what drives me every day is just trying to leverage that. And, but it can be tough, again, it's easier to say, but when you're newly blinded and you have no vision, it's tough to say, get down into the workforce, come on, let's get you a job. Like you're not ready for homework. You're not ready for that. Like you first get to become to acceptance and then teach you the skills. And then, so it's a process.  

[Doug]: Yeah. And, you know, so much great stuff you said in there just kind of get to get back to the representation component again, you know, something that I find. So interesting about that is like, I think it's, it's such a current issue, right? Like we're seeing a lot of people right now in our country rising up saying that they're not considered in the same way that other groups of people are. Certainly that topic, you know, is something that, that couldn't be more relevant right now. And I think a lot of times when you have any marginalized community, that is marginalized in a whole number of ways, whether resources, representation in government representation in media, you know, I think what you get is this disparity between how a community is represented to be as far as numbers and impact and what the reality of the situation is. And there being this huge gap in between the two. And I think, you know, something that we talk about a lot in Feeling Through is particularly...I'm going to actually just hold for one moment. I think, Erin, would it be okay if we switched back to you for, I think Jamie's getting a little choppy. Is that okay? Erin, are you, yeah. Okay, great. I'm going to just switch for a second here. So Erin, I got you back up here. Great. So the, one of the things during this time of COVID is also how much, how much it's tied up the internet lines here. So certainly we've all dealt with that.  

[David]: Yeah. Doug, we adapt.  

[Doug]: Exactly. Here we are adapting, on the fly. But something that we definitely talk about a lot in Feeling Through, you know, using the deafblind community is such a great example of that is it is a community where, you know, again, depending on what numbers you refer to it's, it's anywhere from a very large community to a huge community numbers wise. I mean, there are, there are, and I think in a way that few people who aren't directly connected to that community realize because there's zero representation of that community in media, you know, you never, certainly never see them in movies as we're a first, unfortunately in that regard, very rarely do you see covered, the community covered in any way in mainstream media, ironically, a little bit more during this time of COVID being that it's a community that relies on touch during a time where it touches prohibited. So there's a little bit more coverage than normal, but certainly pales in comparison to the actual size of the community and how many people are part of it. And I think what you get is someone like me, you know, as far as the going back, like nine years ago, the origin story of Feeling Through, and at the time being someone who's a 27 year old adult, who's meeting a deafblind person for the first time and really considering or thinking about that community in any way whatsoever for the very first time. A lot of people who aren't connected to Feeling Through who join us for The Feeling Through Experience and our eyes are open to this community that they've never considered, and they might be 30, 40, 50 years old and never thought about a community that has, you know, millions and millions and millions of people around the world, it just goes to show the importance of that representation because when you're not seen, you're not considered and when you're not considered, you're left out from an accessibility standpoint, from a consideration standpoint, as far as allocating resources and a whole host of things. So, you know, I want to like, how would you relate that to, and I know this is something that we had the pleasure of speaking about last time, but I want to talk about advocacy on that note for a moment and how important that is. Certainly we tie that to ADA 30 last time. I would love for you to speak on that.  

[David]: In this 24 hour news cycle that we're in, right with just constant bombardment of information, any, anywhere you look at technology racing so fast and the earth revolving at 22,000 miles an hour, there's so much going on. And it becomes very competitive to compete for that, uh, being able to be seen and being able to get traction, right? So you and I are, you know, I think we're trying our best to let the rest of our society in on like the best kept secret that there is real talent here. There is real stories to be told here, there are great people here who just so happened to have a disability or blindness or deafblindness. And the challenges that people disappear, these have to overcome to me are the impressive thing. And I think actually are worth more attention because we can learn from that. We, we all, as a society can learn from that. I mean, at the end of the day, all of these things we're talking about, right? Yes, they're difficult to solve for, and there's a lot of challenges, but when you really break it down, some of it becomes very simple, because think of it, we've created all this stuff, whether it's Facebook or video, or the internet or policies or laws or whatever, we created it. So if we want to change it, we can change it. We just need the political, will. We just need the, the will of the people to say, yes, that's important to us. Let's change it. Let's value this more. And I think that time is coming more and more for people with disabilities. The 30th anniversary of the Americans with Disabilities Act just goes to show that we're still only 30 years in here. The Smith Fess Act, which started the vocational rehabilitation, which is a hundred years old this year. So in the grand scheme of our society, we're still only decades in as comparison to some of the other issues that we discuss that are big in society that are just as important not to not to start ranking them. But, but again, yeah, and this is important because disability pervades every race, gender, creed, color society, income, strata country. It knows no boundaries. And it's our brothers and our sisters and our friends and our neighbors. And I just believe that the human condition is improved when everybody's involved. And when we're leveraging everybody's talents and to not leverage the talents of somewhere between 12 and 20% of the population or not leverage them fully, it's a disservice to the people in that group and society. And so I think we're, we're starting to get that out there more and more people are realizing that I'm doing my part, I think are trying my best to, to lead that effort. And, and when we can get people like you, who create movies that are interesting and popular and, and can bring attention to this. That's important, Doug. So again, I thank you for that. And we've got to do more, you know, look at Hollywood there's initiatives out there where we're trying to press the Academy to get more people more roles, number one more disabilities, portrayed and characters in these movies or videos or TV shows or whatever the case may be. But then also have them represented by people who have disabilities, so still work to do, but we keep trying.  

[Doug]: As we continue to push on those fronts as well, we're certainly gonna call you up to get your assistance on that. And, you know, you said it so beautifully in that how important that is. And I loved what you said about I'm paraphrasing here, but that we're all at our best as a society when we're leveraging everyone's talents and connecting that to the other thing that you said that was so beautifully put of, like, we created all this, so we can, we can also change it, or we can, we can create a different way or a better way. And I think that sometimes that gets lost so much too in that sometimes people kind of throw their hands up and almost be like, well, you know, yeah, it sucks. But like, what are you going to do? Or like, it seems like this insurmountable thing it's like, sometimes government becomes this monolith where it's like, oh, well, losing sight that it's actually people that make it up and the constituents are supposed to be the people like driving the policies. Then it's almost like, well, it's this huge thing that's so much bigger than me. And there's nothing we can do or media, we lose sight of the fact that it's individuals that make it up and go, well, it's just this huge thing. And like, yeah, it it'd be great, but there's nothing we can do. But there is something we can do.  

[David]: Absolutely. And think of this Alexander Graham Bell credited by many with having the first phone system, right. The bell system. And look, he had some very bad views on eugenics and things like that that are better terrible, but let's look at the good thing that he did too, which was essentially invent the telephone, which then led to the internet. Right. And so would we have the internet today, if it wasn't for that anyway, do you know why he created the telephone? His wife and mother were deaf, and he was seeking a way to be able to ameliorate their deafness. So you could argue that the internet today was spawn by trying to, uh, you know, provide an accommodation for people with disabilities. Now that might be a little bit of a stretch, but I guess the point is that clearly he was motivated by a disability to create something. And there's more of that out there. I just know it, but with two thirds not taking part that's, that's a problem and we've got to try to solve it and I'm trying to solve it. You're trying to solve it. The people here are trying to solve it. So we've got to try to do our best to influence people, to take part and to want to improve the human condition. Join us.  

[Doug]: Yeah. I love the analogy that you use, the anecdote there about the telephone, you know, I think something that I just realized signing on to Facebook today, as you know, we do our post day of to promote our conversation. There's an option to use alt text, for those who are unfamiliar, that's an ability to describe an image so that someone who's blind or low vision can hover over that image and get a readout of what that image looks like and what it's describing. And, you know, I put that in on Facebook. You can do it on Twitter. You can do it on Instagram, and something that I realized today that's new, I believe today, because I didn't notice it yesterday was that they've very much, they've used technology to very much better the technology behind the all text. So now that the default all texts, which used to just be like in an image of like a flyer where I have all this written information and that's a picture of you and a picture of me, used to just say like two people. And that was it. Now I had, it was able to read the image and have all essentially all of the information already there. And why does that happen? Well, because Facebook is pressured by people speaking out saying, hey, you need to do this. There's millions of people who rely on this. You need to make this better. And that doesn't happen if people don't speak up, that doesn't happen if that's not made known,  

[David]: But before Doug, there's a great business case for too. Dahlia Shaewitz and Michelle Yin had done a great paper on the spending power of people with disabilities and it's in the tens of billions of dollars a year. So if I'm, if I'm somebody selling a product or service, do I want to be able to pick up market share of 10 to 20% of the population? Of course I do. So the more I can address what that population is seeking, the better positioned I am to be able to get them as customers. So I think it makes a good business case as well.  

[Doug]: Absolutely. And I think that's something that, again, those are two things that very much drive society sometimes, unfortunately, more the business side of things than the, just the simple realization that like, hey, everyone deserves support to day,  

[David]: The right thing to do. Yeah. It's in a law by the way.  

[Doug]: And let's like, let's remove the humanity from, for a second. It's like, Hey, all you companies that are driven by profit, you're missing out on some really serious profit here. Like even if you're not inclined to, you know, quote unquote, do the right thing, at least do the right thing for your Q3 numbers. And, you know, there's this huge buying power here that's going unnoticed and are unserved. So certainly you make a really good point as far as that being a reality of, of the situation too. And that it's something that needs to be addressed. But, but again, I think, um, you know, there's technology really affords us things that we weren't able to do before and, really, really expedite and make it so much more efficient, bringing these various elements of accessibility and inclusion to a reality. And again, there's really, there's no reason it shouldn't be happening in so many spaces  

[David]: That can be a force multiplier for people with disabilities and really help level the playing field and a number of, uh, professional, personal, all types of different ways. So the accessibility is key. Absolutely.  

[Doug]: So knowing that, and you're going to, I'm already going to say this, but you're going to have to come back again soon. Because we got, we got a lot more to talk about and we probably have about seven minutes left, but knowing that we're kind of entering the final chapter here and again, for anyone watching, if you have any questions that you want to ask, any questions or comments, feel free. Um, the Commissioner's not shy. So feel free to ask whatever questions you have. I'm wondering how you'd like to use this, this, the remainder of this time, if there's anything that we haven't touched on yet that you really want to talk about in these last seven minutes or so.  

[David]: Yeah. I mean the big thing to me is, uh, trying to get people engaged and accepting of the services. We can only provide assistance if people are willing to receive the assistance. So I think it's trying to normalize the services, understanding that disability is a, is a natural part of the human condition. And again, somewhere between 12 and 20% of the, of the population are people with disabilities. But again, back to that stigma from the inside and outside, people don't want to necessarily be disabled, right. And they don't want to, would you want to see more? Would you want to see less? Well, most people are gonna pick more and that's okay. But if you, if, but if you can't see, let's take you through the tried and true methods that we've developed over the years to be of assistance. Your life's not over there's ways we can ameliorate there's things we can do.  

[David]: So getting that acceptance, then getting them to take the services. That's the biggest thing is being part of that community. That's why, when you ask me Doug, I was no doubt about it. I'll show up anytime, anywhere, because it is about building a community and about acceptance and about letting people know that it it's okay. It's part of, it's a natural part of the human condition and nobody's perfect. We're all trying here our best to bring the services and programs to bear for all of our consumers. So, uh, naturally we've got to focus on Massachusetts and, and our people, but certainly we want to help our colleagues across other States or other nations. I mean, whatever we can do to try to improve the human condition, we're going to try to do that and, uh, go to our website, mass.com/MCB. I just got to give my team shout outs, uh, particularly my executive team and, Carla Kath, our communications director who think might be out there right now, who does a terrific job, helping us communicate all these, uh, issues that we're talking about. And there's a lot of ways to participate. See us on social media, we're @massblind on Twitter or on Facebook, on LinkedIn, maybe you know of opportunities, maybe some people out there are hiring managers and, you know, have opportunities to employ some people, uh, we'd like to hear from you. So however you want to get in contact with us. We're on all the social media or on the, on the web. You can find us contact us. Uh, we want to collaborate. There's, there's no bad ideas. There's just, uh, ones that aren't implemented. Well, so let's talk about it. I'm all about the dialogue. There's no, there's no perfection. It's just all let's, uh, let's keep moving in the right direction. And again, it's a path, the path to prosperity is paved by perseverance, hang in there. Cause it's not easy. May seem easy when we're just talking about it, but sometimes it can be there's considerable suffering with blindness and with other disabilities, I recognize that having gone through it and still experiencing it, it's not always the bright sunshiny day, but I do try to stay positive and persevere and uh, just keep trying things will get better,  

[Doug]: Very well put and shout out to Carla, who is watching and just shared the website and the number, which I'm also sharing to our YouTube feed as well. But you know, Commissioner with one last, the final question that I have for you, is again, congratulations on your two year anniversary as commissioner. That's, you know, we're again really honored to be, have the opportunity to celebrate with you today on that, on this anniversary. And I'm wondering, first what, you know, kind of looking back at these two years so far, what it is that stands out the most to you, or maybe that's something that you're most proud of or if there's any specific moment or achievement or what have you that stands out the most. And then the other part of this question, and again, I'll give you a three minute time limit to answer both of these beause they're coming up at the end is, what are you looking forward to this next year and beyond? What are some of the main topics for you?  

[David]: Yeah, so my, my first reaction is, uh, becoming commissioner. Yeah. I had already been a consumer previously to this role. I was the director of the state's office on disability. So I had been in the space, uh, public policy wise and leadership wise. Uh, so my first thing was to not break it because there's so much good work going on. I don't want to go in and just interrupt that. I mean, you want to keep the good work going, but look for opportunities of ways that we can keep improving and keep modifying and always striving to be better. So, you know, recognizing that previous to me getting here, we were, we were still receiving, uh, our registrations via fax machine. So I've made an effort to try to modernize that we've now put that online and we have, you know, so we've really tried to modernize. I've really made that an effort of modernization and, and trying to be, uh, with technology as much as I can. Because I think that's going to benefit our consumers, our team, and really, uh, just keep moving it forward for everybody. So, uh, you know, modernization, uh, efficiencies as best we can and just keep building on the quality services. That's been the emphasis over the, over the two years that I've been commissioner and going forward, it's going to be to continue to do that. Uh, we were a recipient of one of the largest reallotment awards from our funders on the federal level rehabilitation services administration. So we're, uh, coming out with 25 separate projects related to vocational rehabilitation, uh, basically in improving employment outcomes for people with blindness and visual impairment. So those are gonna be coming out October is disability employment awareness month. So we're, we're really going to be making a big push for that. Because again, I, my bottom line is I want to get more people employed, more people into the labor force and then more of those people employed with quality jobs so that they can earn a living and, you know, be self-determined independent. That's my goal. So to continue to do that and, and do it during a pandemic is a bit of a challenge, but we're, we're meeting that. And again, it's all credit to our team at MCB. The great work that they do, uh, continues to impress me every day. So whatever I can do to support them is really that's. My goal is modernization and continue to, to have quality outcomes for people with blindness and visual impairments.  

[Doug]: On that note, thank you for that perfect kind of ending to an episode here. That was such a great way to go out.  

[David]: Thank you, Doug.

[Doug]: And thank you everybody for joining. I appreciate being here. And again, congratulations on your two year anniversary and certainly we'd love to have you back again soon. Thank you to everyone who tuned in today. If you haven't already please hit the subscribe button on our YouTube channel and follow us on Facebook and other social media. We're Feeling Through on all the things, very easy to find. And also if you're interested in checking out our next Feeling Rhrough Experience, go to feelingthrough.com/register, sign up for your free ticket there. And as always, we'll see you next week. Same time, same place for Feeling Through Live. Have a great weekend. Bye everyone. Thumbs up. 

Feeling Through Live • Episode 19: Building a Home for Entertainers with Disabilities

[Doug]: So welcome to episode 19 or Feeling Through Live. I have the distinct pleasure of being joined by Keely Cat-Wells today, who is a disability advocate and entrepreneur, certainly many other things that we will get into. And today, we're going to talk about a lot of things, but we're going to be talking about topics pertaining to the disability space in the entertainment space and the cross section of those, certainly something that's very near and dear to a Feeling through. So I'm really excited to talk about that today. So, you know, Keely, before we hop into things, why don't you give everyone a little intro of yourself?  

[Keely]: Sure. I thank you so much. And thank you for having me. So yes, I am Keely and I started off in the industry as a dancer and I was, that's what I wanted to do for the rest of my life. And I wanted to go to college and I got into a great college in the UK. And as I was training, I got sick halfway through my training. So I left and I got misdiagnosed. And then finally through that, and I'm sure many people have the same experience of trying to find the right diagnosis. So I finally got the correct diagnosis and after various operations, I became disabled at the age of 16. So a different experience starting my life as a non-disabled person and then becoming disabled. It was incredible to see how different the world looks when you are disabled. And I got to witness, how is the entertainment industry can be. So from that, I started working at a talent agency. I started representing kids and, you know, really not focusing on any specific, any specific kind of genre. So I then was acting as well at the time. And I went in for a role and I was, I booked it. I did really well. I went in for my fitting and then because of my disability, they said that it was too off-putting to the audience. And they didn't realize because I'm kind of like an undercover agent. I feel like, because I don't necessarily look disabled, I've got an invisible disability, but then, but then they saw the disability and they took back the role. So from that, I really saw the need and I was like, I'm sure this is happening to so many other people. And I should be the one that starts representing people with disabilities and, and really fight to break those stereotypes and, you know, really fight for the access and true equality that we all deserve. So that's kind of what kicked off the journey into this, into this whole new world.  

[Doug]: Yeah. Well, thank you for that beautiful introduction. Certainly, you make my job easy because you can, you just kind of beautifully laid all that out. And certainly there's so much to talk about there. But kind of for starters, you know, it might be very obvious to certain people watching, but to others, it might not be. Could you just explain, just simply the difference between a visible and an invisible disability?  

[Keely]: Yeah, of course. So, it's when you see someone in a wheelchair, you automatically are like, Oh, okay. So that person is probably disabled. You automatically accept in your head that it's okay for them to have that blue badge and for them to park in the disabled parking spot or for them to use the disabled bathroom. But when you have an invisible disability, it is a lot less obvious and you are more prone to judging someone for using that disabled bathroom or for using that, that space and invisible disability can be anything from, uh, like when I have an idea to me to, chronic illness, to being blind and, you know, it's, it's, although it's such a similar experience in the disability world that can also be very different.  

[Doug]: So something also that I love so much about your story and certainly, we're going to get into a lot of everything else, everything that you're doing right now, which is, which is a ton of different things, but I love, not only how personal this is to you, obviously as someone who is part of the disability community directly, but also someone who has from an entertainment standpoint really been on both sides of the coin, so to speak and knowing that, kind of what it was like to start off as a young person in the entertainment industry, who didn't have to think about disability at all to obviously, being on the other side of that, and then really opening your eyes to kind of everything that you saw that was wrong about that. And you started to go into that, but like, can you, you obviously gave that really specific anecdote, which I think beautifully illustrates a lot of the discrimination towards the disability community in entertainment, in the case that you booked a role, and with, with the production not knowing about your disability and then on set finding out about it and saying this isn't going to work. Do you, I guess I'd love to like move into the part of your life where, you know, you, obviously you go from being an actress in that situation, knowing that's not right for you and then moving into the agent, management world. Can we, can you tell us a little bit about how that chapter began and kind of where it's taking you?  

[Keely]: Yeah, absolutely. So even being, I was not knowledgeable about the other access needs, the other disabilities that I was surrounded by, I was still very new to the community. And when I started representing disabled artists, I started to see the trends in those stereotypes and in those roles that the clients were getting called in for. And I also saw the barriers that they see every day, nearly every time they got called into an audition, they would have to drag that wheelchair upstairs to just get into the door or they'd be on the set and they have to get changed in your storage room because the trailers are not accessible for them. So it was really seeing the world from such a broad perspective and from so many different disabled people's views. And you really come to the conclusion and you realize and accept that the world was just not made with us in mind. And it was kind of fascinating to see people and productions reaction when you try to educate them and try to give them the tools that they need to create an equal space and to create an accessible space. And it was the easiest of tasks to do.  

[Doug]: So I know that, so your first step for you is you were working for an agency, right. And that, and that, that kind of like revealed a lot of what you saw on that end of things, to now being on the agent side of things and revealing kind of a whole another layer of how the industry is not, made for, and does not accommodate, the disability community. Um, so can, can you tell us about your transition from that role into the next chapter of your life?  

[Keely]: Yeah, absolutely. So when I was representing talent that were non-disabled, when that wasn't really, in my mind, I saw a trend cause I was working for people at that point and they wanted me to represent people who was younger than I was. And that was the first kind of red light. I was like, oh, because of my age that they wanted me to represent people younger. So there's a stereotype already. And then as stuff happened to me and you kind of build up all, you see all of these stereotypes. So it really is my mission to break kind of intersectional stereotypes as well. Cause I think often when we think of disabled, and we think of disabled in the media, we think of someone who is white with a disability or someone with autism, you automatically think of a middle aged white guy with autism. You don't think of someone who is black, who is in a wheelchair who also has autism. So it's very interesting to, to kind of, you know, think about when you see the roles come through on breakdowns, who could really go to that role, even if it doesn't necessarily specify that they have to have a disability or they have to have, either be a certain way that you can really dive into that character and find all of these different people that could work for that. And from that, and from seeing my clients not have equal chances to get these roles or equal chances to do as well on set as they could have done because of the access and because of the stereotypes that I've faced, I really wanted to create something where it was built with us at the heart of it and something that would hopefully set a standard for employers and have them realize that this is a business opportunity.  

[Keely]: They can do it with integrity and take up the opportunity. It's a trillion dollar industry. So I really wanted to create something with us, built at the heart of it that is fully accessible for people with disabilities. And this thing to me, I see this as a film studio. So we are currently looking and we are actively, at the moment we're finding land in the UK to build infrastructure that is fully accessible and that will enable production to open so many more doors. And also for disabled filmmakers behind the screen, which is equally as important, if not more important that we have disability led productions, with people at the helm, you know, the production doesn't necessarily have to be about what someone with a disability, but it is authentically led by someone who has a different voice to what has been going on in the industry. So it will give them the tools that they need, the access that they require and everything to be able to create, create something with true authenticity and, and from a new perspective.  

[Doug]: So Keely, there's so much great stuff in there, and I want to walk through a couple chapters of it, but I will say that what Keely's introducing is her amazing, fully accessible, the first fully accessible movie studio that we're certainly going to get into a lot more shortly, but I can say that having seen the pitch deck for it and the designs for it, it's absolutely stunning. In addition to it being this groundbreaking project, which I really want to spend a lot of time talking about, but before we go there, you know, you brought up, there was so many interesting things that stem off of what you were just talking about, but just going back to something, at the beginning of what you were just talking about, you know, in addition to like some of the discrimination really that, that you you've been identifying as far as the entertainment industry and, and the disability community, that's just really one manifestation of it too, because I love in your own personal journey, you've also just experienced like ageism in what you were describing about how you were being treated as an agent there. That just because you were younger, there was like a, a naivete or the inability to kind of like work with adults or things like that. So I just think it's really interesting that, you know, again, it's that it's, it's emblematic of kind of a larger change that needs to happen, which is really just seeing people as people and not, you know, as their age, as their disability, as their race, or what have you. And I think that just in your own personal journey with a couple of things that you've experienced yourself really is emblematic of that.  

[Keely]: Yeah, absolutely. And yeah, I think the media is so powerful and if you paint people certain ways people are gonna believe that. And although I think it is so important to recognize where we come from, recognize our culture and our community and recognize that we are disabled. You know, I don't want you to not see the disability. You don't not see the wheelchair, you know, see it, accept it, you know, understand it and learn how differently we live and how vast and wonderful that culture is. And, but don't fall into those traps that the media has painted for us in the past. You know, when we think of stereotypes in the media, you know, you think of captain hook and the Hunchback of Notradame and the Joker and these characters that do not reflect people with disabilities, yet people seem to see those as what people with disabilities actually are like, who is a very, very interesting concept.  

[Doug]: You know, and, and I think, um, I'm curious from your vantage point, just, I'm going to ask you the simple question and kind of, kind of piggybacking off of what you're just saying, but, why is it important to have inclusivity in media and, you know, particularly through the lens of the disability space, which I think is, you know, when we're talking about marginalized communities on screen, statistically speaking, that's really the most marginalized and really the least seen. And when there are roles, when there are characters who are disabled, it's rare that there are disabled actors playing those characters. So why, why is it important to have that representation and to also have that participation, um, from the, from the disability community?  

[Keely]: Oh, it's so incredibly important. I have this amazing client called Diana Elizabeth Jordan, and she has a quote. She says that disability is not a technical skill that you can learn. It's a lived in experience. And I think if that doesn't put into perspective to a producer show runner that, you know, that it's, that you can't have an able-bodied, non-disabled person playing a disabled role, then I don't know what it's, you know, it truly is a lived in experience and it's not right that people get awards for playing disabled characters. And I think that also stems back to when you're watching a movie and a disabled character gets a trophy for going to school or gets an award for getting out of bed. It's not awarding their achievements. It's not treating them as an individual. It's treating them as their disability. And that is also I think, what that stems from. And you kind of get this crossover of discrimination and stereotyping. And I think the more authentically that these roles can be played and the more disabled actors have the chance to input their lives into these roles, the true, or that will be on the true are these stories will be.  

[Doug]: And it's, you know, it's interesting that you bring up the, you know, the example of the disability community often, uh, this trope of, of a disabled character only being there to inspire others like that, that would be their sole function. And that there'd be nothing else to, to what is actually a multidimensional person other than to just be there to inspire others. It's and it's interesting just on your point of like, why it's so important for that inclusivity and representation. I imagine that a lot of times I'm curious what your thoughts are on this, but a lot of times someone might fall into that, that trap or that trope of, of seeing someone who's disabled as only there to inspire from a lack of knowledge of the diverse capabilities of people in every facet of the disability community and these kinds of erroneous assumptions, coming in with these erroneous assumptions, like, well, of course, someone who's thus in such couldn't do this thing or that thing. And then just in seeing that being like, wow, that's amazing. And again, having, making those erroneous assumptions because of not knowing anyone who's disabled, not seeing accurate representation of anyone who's disabled. So even if you personally, maybe don't know anyone in your personal circle who's disabled, or has a specific disability that you don't know much about, if you see that represented accurately in media, you at least start to create some sort of better informed understanding of who someone like that is and their capabilities and the diversity of, of that rather than making these completely unsubstantiated and erroneous assumptions that lead to like, you know, someone being inspired by someone who was disabled, just like you said, getting out and getting out of bed.  

[Keely]: Yeah. We must familiarize audiences with the true essence of people with disabilities. And that story is, and that they are more than just here to inspire a world of people that, you know, the world was not made for us so they can celebrate the tiny things that it's. So, um, it's just not true. I think a way that we conquer that is that you have people with disabilities in your writer's room. You have people with disabilities as your producer, you have someone with a disability as your show runner, you hire CEOs who are disabled. It starts at the top, it starts at the bottom it's, you have people with disabilities in all of these roles, not just, oh, we're going to tick a box and we're going to have someone with a disability in our film so we can get press on that person. And it makes us look like we're good people, it's the wrong way to think about it. And it really has to start from, from hiring people with disabilities to play a role in every essence of your production, of your admin, of, you know, agencies, managers, casting, directors, to really have true authenticity. And also have, I think I said it earlier to have intersectional representation. So you have the LGBTQ community that you are disabled. You have the black communities disable, you have black disabled writers, black disabled producers. And then only then I think, can we truly start to have real authenticity and a truly diverse role in the media?  

[Doug]: Yeah. That's, that's really beautifully put, and like, you know, again, you're saying it, it goes beyond just like having one character in one show who's disabled. That's not certainly not enough. And certainly that moved toward the creation element of it. The people, like you said, that people in the writers room, the people behind the camera, that that's certainly something that, where there hasn't been much headway made there yet. And that's definitely the next step in the evolution of, of really bettering practices in the entertainment industry around this. And you know, somebody else you touched on there and, and Hillary writes on Facebook, she says, ableism is such an important conversation. And you know, I was reminded of something that when we connected earlier, Keeley, you had mentioned in some, I forgot the exact context of our conversation when you mentioned that you can still be ableist when you're disabled. And obviously this is, this is an ongoing learning process for you as someone who is really taking on a project, which again, I promise we'll talk about in great detail in your, in your fully accessible studio, that in order to be fully accessible, you really need to have a mastery of understanding of every element of accessibility. But can you talk a little bit about just really quickly what ableism is for someone who's maybe coming to that term for the first time and just that topic of how you can be ablest and disabled?  

[Keely]: Yeah, absolutely. So it is the discrimination towards someone's disability. Um, and I think there's active ableism and there's casual ableism. And then there's just passive ableism from a lack of knowledge. And I've found because I came into the disability community in the beginning when I was 16, and I have not had any, um, interactions with the community before I've found myself being ableist, because just a lack of knowledge, a lack of awareness. And I had no idea about the different types of access. I think when people think of access, they think, oh, access, okay, we just need a ramp. There are so many different forms of access and there are so many different, different disabilities, and it's difficult to be knowledgeable on every single disability, but just being open, listening, learning, educating ourselves, and really understanding and accepting the person and their needs and their requirements and their views. This is something they live in, we live in every day. And if you say that you don't believe us, or if you say that, um, you know, what we're saying is not what they're going to do or it's, it makes it very difficult for the disabled community to actually have a voice. And I think that's what ableism is. It's making the disabled community that feel like a burden or just not listening to us at all and not accepting that we are equal, that our voices are just as valid as your voices and that our culture matters just as much as yours. And we are different. We adapt, we have learned to adapt in many, many different ways. Um, so yeah I got a bit off subject, but yeah, ableism, I think it's just the discrimination of people with disabilities.  

[Doug]: Yeah. And, you know, it's interesting because, you know, certainly I, and what you were just talking about, I think of, you know, the recent 30th anniversary of the Americans with Disabilities Act and a lot of the discussion we had during that time around advocacy. Um, and I think, you know, a large part of advocacy and the power behind advocacy is I connect that to, to media representation. You know, we look at, you know, our last election and moving into a, you know, an election upcoming. And we obviously are very clear how powerful, you know, the media and social media and all forms of media are in, in really driving these big decisions and, and things that lead to law that lead to, you know, creating the environment that we have. And a lot of that, really the power of that is usually in media representation. So just in what you were saying, it's like another connection to like, well, why is this important? Well, when you have a community that is still needing to advocate for basic rights and access in a lot of elements of a world, and that voice that, those needs and that voice needs to be amplified through all different forms of media, whether it's obviously just representation, being able to see people from that community in a much more nuanced and multidimensional way, or having a platform, in the news, in, in all different spaces to be able to directly address these issues.  

[Keely]: Yeah, absolutely. And it's interesting you bring up local and, you know, the ADA is such an amazing feat. It's incredible what it stands for our community. And I couldn't imagine the world without it. I couldn't imagine my personal world without it. Um, but there's still so much work to be done. It was, I think a couple of days ago I am not proficient in law or I don't even try to be, there's no point in going into that world, but I did see and read something about, um, it's called 14C and it basically allows people with disabilities to be paid a dollar or less per hour, so much under minimum wage. And that law is still in place that was put in place in the 19, in 1938. Um, and it was never abolished. It's still, it's still an active policy and companies take advantage of that and they get people with disabilities to work for such small pay, and whether they do that, so people with disabilities can keep that, um, keep that benefits, which is a whole other subject, but it's another subject that I think the media should touch on, or they should be, um, it should be information about that. There should be a stories about that because it's something that needs to, needs to stop. I think, yeah, it's, it's crazy. It's pretty crazy. Um, yeah.  

[Doug]: I want to, I want to touch on something in that, but first I'm going to just take a quick pause for an interpreter switch. And okay, Jamie, all good to go? Great. So continuing here and again, thank you to everyone who stuck with us. I know today the internet is a little wonky, and I've heard from all, I've seen in the comments that the audio is clean. So hopefully you're just able to treat this as a, more of a podcast today. Um, we'll be able to upload a cleaner version later, but thank you for sticking with us here. And again, if you have any questions for the second half of this conversation, please feel free to type them in chatbox. We'd love to hear from you and any other comments you might have. But continuing this, you know, um, I was actually just having, you know, on, that, that law that you set up and how it's leading to the disability community being underpaid.  

[Doug]: I had an interesting conversation with, uh, with a disability advocate yesterday, about how, who's working on a lot of projects that are require a good amount of resources to make them fully accessible. And it's interesting that, you know, as things stand right now, and again, all more for the need for advocacy around this, is that it's a community that is underpaid and, and very underemployed, uh, relative to, to other communities. And, is also a community where a lot of accessibility right now, it's still very costly. So there's this real irony in, in a community that like really gets the short end of the stick financially in a lot of different realms and also has lives where things are constructed in a way where accessibility tends to be so expensive, whether that's someone's personal accessibility needs or accessibility out in the world. And we're really talking about that, that irony. Um, but you know what, I'd love to use that as a, as a turning point in this conversation to talk about the future. You know, we've talked, we've certainly identified some, some issues in the present and the past, but what I'm really excited to talk about in the second part of this conversation is the very bright future ahead that certainly you are helping pioneer. Um, so we mentioned Zetta Studios before, but I want you to kind of give us another kind of introduction into that, and don't be shy here because I know this is your, your project. And sometimes we can be a little modest about it, but I will say as a complete outsider to this and someone who came to this recently, something that, well, we won't be able to show you the drawings and the renderings of this facility, but I just to fill in that dimension before Keely tells you more about it, it is an absolutely stunning facility that Keely and her and her team are working on constructing. And it is just, I mean, just think of basically the coolest arts facilities you've seen and, and any communities around that. And it's, it's just kind of the best version and amalgamation, you know, of kind of the, the coolest, you know, modern theaters and, and public spaces, kind of all in one. So Keely, I'm doing a really bad job of describing it. I'm just so enthusiastic about what it is. Why don't you do a better job and tell everyone a little bit more about it.  

[Keely]: Oh, thank you so much. Um, so, you know, we are in the early stages of creating the world's first, fully accessible, film and TV studio. And I would like to say it has been compared to before as the Silicon Valley of entertainment. What I really want to do is create the most incredible structure that will house the most revolutionary technology, as well as the most innovative productions and high-end productions. It will be for everyone, but it's really made with us at the heart of it, which has not been done before. Um, it will include access. It will include physical access, sensory access, communication, access, cognitive access, every access ideal that you can think of. We are working towards, you know, centering it around that to make it incredibly accessible, you know, and specialized filming equipment and everything that you can think of to make a production as accessible as it could ever be. Um, and it's interesting. I had someone say, you know, but it's not built yet. Why are you talking about it? I'm talking about it because even the idea, if someone says that is a really good idea, I want to do that. Please do it. I want people to do this, build infrastructure, build buildings and studios, and build buildings with accessible and universal design in mind. You know, if you do this idea and you managed to get it built before me, fine, I'm happy with that. Um, but we are at a very exciting stage, and I cannot wait to, to cut the ribbon, and be able to open this facility and really open up some opportunities and, and be able to have a new system and hopefully create and set a standard for employers and, you know, not just able to offer the most basic needs, but really offer ideals and go beyond compliance.  

[Doug]: And there's again so much in there and I want to touch on that last part, certainly, but before we do that, I'd love to, like, you'd kind of introduced this a little bit, but I'd love to go a little bit more into what this was born out of because you just, you just acknowledged, like it's not made yet. And it's a big idea, but I'd love for you to just articulate a little bit more about, like, why take on something like this? Like what, what you, you're obviously already doing great work in someone who is a real advocate for the community and someone who's a manager who represents actors with disabilities and fighting to get a lot of people in the entertainment industry who are disabled more opportunities. Why, why this studio?  

[Keely]: Yeah, you know, this is always, to have my own film and TV studio was always a dream. I thought maybe this is my five year goal. Maybe it's my 10 year goal, but the more and more I came across barriers for me and for people with disabilities in the entertainment industry and in the world on a whole, I was like, why not just do it now? Let's just do it. Let's create it. You know, I don't, what gives me the right? What gives me the, what gives me the, you know, the history, the education, how, why me, why should I create this? And how can I? I believe if you put your mind to something and you have the access, then you can do it. And I think this is such, this is my lifelong mission for sure is create this fully accessible film studio that will put a dent in the world.  

[Keely]: I hope. And I really started this because the barriers that I saw with things that can be so easily overcome. The adaptations that can be made are so simple. And I also got very frustrated that disability kept being looked at as a charity, a charitable cause. My disability, I should work for free, or, um, I should only be a nonprofit. I shouldn't be for profit. So I wanted to create something that would be this project that would be for profit in every way that will give back to communities, obviously, but it will be with disabilities at the heart of it to really break the stigma that disability could only be seen as a charitable organization, because we are profitable. We want to create businesses. We want to be, um, you know, we, there's a whole array of talent, which does not just need to be there. As someone that can be an inspiration or as something that can be a charity to donate to. So that really, that really kicked it off as well. And just, you know, if, if you can get your star on set a vegan, gluten free, sugar free dairy free donut, then why can't we have the access that we have, you know? So that was a big mix of reasons why I wanted to create such a big, such a big structure and organization. And I was just saying, I'm just going to do it. You know, I'm just going to do it and I'm going to make it happen. Um, so I've been very lucky. I'm working with some incredible people and I think you don't have to be good at everything. You know, I'm dyslexic as well. I can't spell, terrible at reading, but you can put yourself with a community of people and pull together the right talent to really build something and do what you want to do. So that's kind of, what's, what's creating this structure.  

[Doug]: I will point out that clearly you have been in Hollywood for awhile, if you're able to rattle off a specialty order like you did with the vegan, gluten free, keto, what have you order. So clearly, clearly you've been around the block, in Hollywood. But you know, it's like, I love everything you just said about that and something that I, you know, when you first told me about it, what I loved, you said that you needed to do something so big that no one could ignore it.  

[Keely]: Exactly.  

[Doug]: I love that. What I love about that so much is that, you know, in the context of the conversation we were having earlier, where, you know, particularly the disability community at large is fighting for just, in a lot of ways, really basic needs and a lot, and a lot of things of basic accommodations. Um, and, and having just really just having even some representation in some cases, if you, even before we talk about equitable. But to, to like kind of hop a few steps forward and not be kind of asking for breadcrumbs, so to speak, but really be kind of taking the whole like cake on here with something like this. I love just in and of itself creating something this big and this special for the community really creates its own kind of spotlight on it. Its own attention in a much needed way in a community that doesn't often have big notable, and, and really kind of like pioneering projects like this.  

[Keely]: Yeah. I certainly think there has been some amazing things that have come out and they have inspired me so much, like the Media Access Awards and Respectability and then what you're doing and, you know, and there's been incredible things. And I think seeing the power that they have had, if we can have a home where all of these organizations can also have an office and come together and unite what an amazing thing that would be to be able to create that. And I think as a community, we do have such a strong sense of, you know, being able to unite and create things together and to be able to bring the non-disabled community into that, that surely that's going to unite so many people. And I think it will spark many different projects. I think it will inspire people to create things that they haven't thought about creating before and because they will have the access to do it. And because it will have been made so simple for them, they don't have to put in any other thought, all the accesses already there laid out for them, made easy. They have no excuse not to include us. So I really believe that, and I believe that this community can do so many things.  

[Doug]: You know, you'd mentioned this before and it's something that comes up a lot, you know, on Feeling Through Live. When we're talking to people about accessibility and, you know, often as far as what that looks like out in the physical world, I often hear, you know, accessibility is more than wheelchair access. So there's certain accessibility. Sometimes I'd say there's a big cross section of what I'm about to say and visible disabilities, like someone in a wheelchair that people who aren't that familiar with the disability space might be aware of in the public, like again, like a ramp for wheelchair access, what are some of the accessibility accommodations, and I'd love for you to go into more detail about this for people who maybe have never come across this, what are some of the accessibility considerations that your studio is going to have that some people might not have thought about before or be familiar with?  

[Keely]: Yeah, so, you know, things like tactile markings, things like, um, even the writing on things. So comic sans is one of the most easiest, fonts for people with dyslexia or in the neuro-diverse community to read. So, you know, writing would be in that we will have accessible trailers because that is one of the stories that really does stick in my head when we had a client getting changed in a storage room and we will have a warehouse full of costumes that are made for people with disabilities. I think the access to, um, to costumes and to clothing for people with disabilities is another whole arena of problematic things in this world. Like I found out that there are more clothing stores for dogs then there are specifically for people with disabilities. So, you know, again, it's, that type of that type of access, will be, will be crucial.  

[Doug]: You know, you know, I love pointing these things out. I certainly learn something new, every one of these episodes. And I didn't know about comic sans and, and it being a very friendly font in that way. So that's something that I can certainly take away from what you just said, but I think it's, it's, you know, in identifying some of those things, that there are a lot of things that people don't think about very often, certainly, you know, something that was really new to me. The last part of that topic you were talking about, about costumes for people with disabilities. I saw, I don't remember where I saw, but I think it was on Facebook, an article posted about a company that was making Halloween costumes for people with disabilities. And it might be something that fits over a wheelchair as one example or something that can be as simple as again, you know, a costume that accommodates someone that's something that can be easily forgotten about, when, when someone's not really thinking of all the different categories of, of how the world isn't set up for accessibility.  

[Doug]: So I really love like hearing the details about what, what this, what your studio is going to be and how it's going to address those things. Cause I think there's a lot to learn for everyone, in listening about some of these things that we don't often hear about, or so I really love like hearing the details about what, what this, what your studio is going to be and how it's going to address those things that we don’t often hear about accessibility.

[Keely]: Yeah, yeah, and there's still so much for me to learn. You know, I know the key things I want in there such as the sensory access, the communication access, the cogniitive, all of those different access points. But it is going to be so important at these early stages while we're in this design stage to bring on as many people with as many different disabilities as possible to give us their feedback and tell us what would make their experience on set or in a studio be the best it can be. Because there's not that type of information you can find online, there's not the type of information our architects will know because it's so individual. And it's so specific to each person. And yeah, just so individual. So it's definitely a learning curve for me as well. I want to bring this up before I forget.

[Doug]: I want to bring this up before I forget. Um, but I guess what, what stage are you at right now? And if there's. If there's people watching and coming to this who are like interested in, is there a way that people can like help this become a reality?

[Keely]: At the moment we're kind of in a waiting stage. So we're just waiting to hear back from a certain place in the UK to hear if that's going to be our location or not. So right now it's very much just, I hate waiting, I hate not doing anything but it is very much a waiting stage. So not much at the moment just continuing to support and if you do have any very specific individual accessibility needs that we may not have thought about let us know because we really are in that key design phase as well so implementing as many of those as possible is crucial.

[Doug]: To flash forward here to when, when this is constructed and you've just cut the ribbon on this. I want you to just like step inside this near future scenario here for a moment. I guess the first part of this question is what are you hoping that various people from the disability community who, who move through this space for the first time to and experience it? What are, what are you kind of like hoping is, is, um, their reaction or, or feelings around it?  

[Keely]: I'm really hoping that, um, mainstream productions and large corporations and large companies hire a dramatic amount of people with disabilities more than they've ever hired before. And I'm hoping that people with disabilities also, come and film here and create their own projects. And it enables them to do things in a more effective and, you know, faster and a more, in a much easier way than it has been before. And they don't have to budget for things that should have already be provided, but it's not provided. Um, but we will provide them so they can just get on with what it takes for them to really do the best job that they can possibly do. Um, and I think that goes back to when my talent that I represent have to go into an audition, but they've already spent so much of their energy just trying to get through the door that they can't do an equal as good auditioned as anyone else, because they've already wasted so much energy just trying to get every the door. So that definitely stems back to that.  

[Doug]: And, and the other side of that, I'm curious, like obviously in, in the, in the description of the studio, and obviously it's the key thing that you did harp on when describing it is that it's the first fully accessible movie studio, but what are you hoping for, and obviously it's beyond a studio because there's a whole community around it, that you, you started to go into, but, you know, again, to kind of paint the picture for people, imagine just, a really just stunning studio space with a stunning, huge open courtyard area that people can spend time in, in front of a beautiful stage, a live stage for live performances, and then a whole, really a whole community around that with various shops and, and a lot of public space for people to really, um, not just enjoy whatever the studio is making, but for the general public to be able to enjoy that space. So I guess I'm, in that part of the, on that part of the topic there, what are you hoping for, for people who aren't part of the disability community, but are coming to this space for the first time? What are you hoping for that, that their experience will be?  

[Keely]: I'm hoping that they see that what the disability community brings and having that access, how much that can elevate a project. And I'm hoping that they also see and realize that like, oh, that's such a simple adaptation. I should do that. And when I'm not at the studio, when I'm somewhere else or, um, and they, I'm also hoping that it shows them that having disabled people working in higher positions, I hope that shows them that we, the stereotypes that have been painted in the media that are used to seeing I used to being around is very different to real life. And I'm hoping it inspires them and it enables them to think of new stories and, you know, just gives them a new, a new perspective on the disability community. But they will also have, you know, more idyllic, um, filming facilities as well. It was still being, you know, amazing to, it would just be amazing to have that interconnected community, um, and a true crossover of non-disabled artists and disabled artists all coming together to create something beautiful.  

[Doug]: Yeah. I love, I love that aspect of it so much cause certainly, you know, something that's been integral to, to Feeling Through, Feeling Through Live, The Feeling Through Experience, and particularly when we were doing it in person, The Feeling Through Experience before COVID was really creating this space that wasn't just fully accessible for, for moviegoers of any level of vision and or hearing loss to participate in it as well, and be fully accommodating that way, but also for it to be a space that brought together communities that might not normally have a shared experience together and that beyond having a shared experience together, like sitting side by side, connecting directly with each other, shaking each other's hands, giving each other hugs, really creates that immediate visceral connection that really, I think is the thing that changes people in a deeper set way and in a visceral way. And, and, um, that's, I love that so much about what you're creating here is not only does that do that in media and entertainment, but it also creates a public space in a public community to bring diverse groups of people together that might not normally have a space to come together in that way.  

[Keely]: Yeah, absolutely. And I think it really drills in that, you know, people with disabilities, they don't need special treatment. We don't need special treatment. We don't need to be treated differently. We just want equal and true quality. And what that really is and what that really looks like.  

[Doug]: Well, I, I think an important question is, when this is finished and open, are you gonna invite me? And can I come?  

[Keely]: Of course, very welcome.  

[Doug]: Good, excuse, I haven't, I mean, we're all, I think a lot of people are itching to travel again. I'll certainly, would love a good reason to go over to the UK. I've been confined to Los Angeles for quite a while now. I wouldn't mind venturing somewhere else when that is deemed a appropriate time to do so.  

[Keely]: Yes, absolutely.  

[Doug]: I'm wondering, as I'm speaking to the talent manager side, you, and you know, obviously as a talent manager who represents actors with disabilities, you know, something that's obviously near and dear to the Feeling Through community is at the center of that, in a lot of ways is the deafblind community. And obviously Feeling Through was the first film that starred a deafblind actor, and certainly since we've made that film and obviously have plans to do more work and make a feature film version of it as well, you know, we've been asked over time, you know, by people in the deafblind community of like, oh you know, is it something that I can be in? Or like, if I'm interested in acting like, what do I do? I'm like, I'd love to throw that question to you. If like, if there's someone, a person who is deafblind who maybe sees Feeling Through and sees that there's a deafblind actor, and is like, I want to do that too. Like what, what would you suggest they should do?  

[Keely]: Yeah, absolutely. So you can always email us with any information that you have and if you've done acting before, send us through your resume and your show reel, but if you haven't, then we are very open to helping people get to the point where representation is right for them. And I also want to make people aware that often people with disabilities question that if coming to us is going to be the right thing for them because they don't want to get stereotyped and they don't want to just be asked to play disabled roles. But I want them to know that our company focuses on placing people with disabilities in roles that does not specify they need a disability. We are wanting to break stereotypes. And that is our true mission and our true goal. And everyone who works at C Talent either as from, if there is a minority or has a disability and feels the exact same, same ways, it's all authentically driven. So yeah, if anyone is wanting to go and pursue that career, then we are open to developing that with them.  

[Doug]: And certainly, you know, back to what you were saying a little while ago, but, you know, we're, you know, something that's something that we're on our side investigating as something that we're going to get into in the future or help, but really there needs to be a lot more of as an infrastructure to help, to, to really support actors with disabilities and to have more opportunities in front of, and behind the camera. Um, certainly they're not as it stands right now that many acting classes that someone who's deafblind can just walk into and have the accommodations they might need around it. And, um, certainly that's something that we hope to be able to address in the not too distant future. And hopefully there, there are a lot more people who are taking that, those kinds of considerations in as well. Um, but before we close things out here with just some final thoughts, I'm just curious of how this pandemic, and I know this is like kind of a big question to throw to you for like a final question, so feel free to, you know, not need to go into every detail about it, cause I know it's affected every aspect of your life, but how, how has this pandemic affected, you know, the work that you're doing or, or kind of your outlook on the world?  

[Keely]: Yeah, it's definitely given me the confidence the time and the boost that I've needed to really kind of kick things off for the studio, but it's also made me see the world as a world that is, it's not people with disabilities who are disabled. It's the world that is disabled around us, that stops people with disabilities, really doing what, you know, what they can do and what we want to do. Um, and I think COVID has also opened a lot of people's minds into the type of life a lot of people disabilities live. Um, and I think in the entertainment industry, there's still a lot of things that we've got to work towards. And since the virus, a lot of people have thought that people with disabilities should not go back to work and should not be on set at the moment. And we've got to break that stereotype too, because that's not true. Um, you know, we can get back to work. A lot of us can, a lot of us are at risk, but a lot of us can get back to work. And, um, and also that corporate companies, I think they've realized how easy it is to adapt, to having people work from home, say people with disabilities who prefer to work from home now they can. So it's the perfect time for these large companies to open the doors for people with disabilities to work at companies. Um, so I definitely would say that as a, as a closing message.  

[Doug]: Well, that's a beautiful closing message. And thank you so much for joining us today. We certainly would love to have you back, uh, with certainly updates about the studio. Um, and certainly plenty of other things to talk about, but wishing you the best of luck with that venture. I'm certain it's only a matter of time. I hope it's sooner rather than later. Um, but really, really admire what it is you're doing, certainly inspired by the enormity of what you're taking on and, and accomplishing. Um, and yeah, looking forward to the, to the bright future, you're going to help create through your endeavors.  

[Keely]: Thank you. And same to you. Um, so much respect and just admiration for you're doing really appreciate it.  

[Doug]: Thank you. And thank you to all of us who joined us today. We know this, wasn't the cleanest livestream we've done visually. I hope the audio worked for you. We're going to upload a cleaner version in a little bit, so you can come back to it if you'd like, but, uh, we'll be back next week as always with another episode of Feeling Through Live same time, same place, and until then have a great weekend, uh, see them. Bye everyone. 

Feeling Through Live • Episode 18: DeafBlind Love Story

 [Doug]: Welcome to episode 18 of Feeling Through Live. Today, we're talking about a deafblind love story, and I'm joined by the couple Divya and Jeremy who are engaged. There are a couple who is deafblind, and we're going to be talking today about their love story and not only the details of it, but also why it's important for other people to hear about a deafblind love story. So before we jump into things, I'd love for my guests today to just quickly introduce themselves. So starting with Divya, who again, if you were, if all of you were on last night, you would have saw, saw her on The Feeling Through Experience live stream, but Divya, can you briefly introduce yourself to everyone who's tuning in?  

[Divya]: Hello there everyone. My name is Divya Goel and I'm from Florida and I have a special type of usher syndrome called H A R S 3. And also I am the vice president of DBCA, which stands for the DeafBlind Citizens in Action. And we are a social action committee.  

[Doug]: And, Jeremy, can you briefly introduce yourself to everyone?  

[Jeremy]: Hello everyone. My name is Jeremy and I am from South Florida. I also have Usher syndrome type one D and I primarily use tactile communication, but I can see some, so I am also a member of DBCA as well. Thank you.  

[Doug]: Great. Well, thanks for those introductions. And again, we're going to get into your love story very soon, but before we do that, I'd love to hear from each one of you, just a little bit more backstory, a little bit more about your lives prior to meeting each other. So Divya, I'd love to start with you. If you could just tell everyone, give everyone a little bit more information and context about what your life was like before you met Jeremy.  

[Divya]: This is Divya. Before I met Jerem, well, let me start with, I originally grew up in Canada. I was born and raised there with my entire family is hearing. We moved to the US specifically to Florida to start a new life. Many years later, I started getting more involved with deafblind individuals. I started learning more from leaders that were out there, and I learned more about deafblindness and I was really interested in leading in reaching my goals. So I got more involved. I went to more events specifically here in Florida with those events. And then eventually I met Jeremy. But before I met Jeremy. You know, I didn't know anything about him. I was socializing with other people who were deafblind . You know, I focused on my life specifically school in college and was continuing with that until I eventually met Jeremy.  

[Doug]: And, can you tell me a little bit about what your primary cultural influences were growing up?  

[Divya]: This is Divya. I am from a traditional Indian family and have traditional Indian heritage, and I have a strong connection with Indian culture. It's a part of, I do feel so much different now that I've had the American experience. But I do have that strong relationship. You know, it is, it is different. You know, Indian culture is much different in that they have, let's say an arranged marriage, whereas American culture, you can marry whoever you want. So those are some of the difference, cultural differences between Indian culture and American culture.  

[Doug]: Was an arranged marriage ever anything that was talked about for you? Or is that something that you ever encountered personally?  

[Divya]: Divya is nodding, yes. It's difficult to accept that because for me, I was nervous. You don't know who the individual is, you don't know them well. Um, and you don't know what's going to happen. You know, you don't know their personality, their background, all the ins and outs about them. So for me, it was, I was a little bit less comfortable with, I was nervous, especially for communication because communication for me is a top priority. It is critical. I need to make sure that person understands me and I understand them because, you know, for instance, my hearing family I'm used to them, but, and we have communication sorted out. But for someone new, it's difficult, it's difficult to make sure we have that communication, which can present barriers. So communication obviously is the key and is very important in my life. It's the key to happiness as well. You know, you, can't just sort of cook communication aside and deal with being unhappy because you can't talk about it. It could lead to even depression. Those are not healthy things. And those are not good things to necessarily have in your life. If let's say this person is the same as me and really understands where I'm coming from and I can understand them. And we had clear communication and knowing that I am deafblind and all the other ins and outs, you know, that would be something that's very good and that's something I wanted. I wanted happiness and I wanted to be able to clearly communicate with my partner. You know, I don't want to have to worry about what's going on. I can't communicate. Can I believe this person, can we have clear communication? That's not something I wanted for my life. I wanted to make sure I have an understanding with that individual. I wanted to have success in my future, and I just decided that wasn't for me. And that all happened before I met Jeremy. And for me, I wasn't ready for me. I wasn't ready to go ahead with that.  

[Doug]: Yeah, no, thanks for sharing that. You know, it's interesting. Um, there's a new show on Netflix called Indian Matchmaker that I've actually watched very recently. So it's interesting when you mentioned arranged marriages. I literally just recently checked out this show for the first time, like the other night. So it was just interesting timing for that topic to come up. But, I'd love to move over to Jeremy for a moment, but before I do that, for those of you who are just tuning in, today, we're talking about a deafblind love story. Um, and not only the details of it, but why it's important to share a deafblind love story with other people and for other people to know about a deafblind story. So part of that is getting as many people to tune in today as possible. We're still really early on the episode. So if you're watching on Facebook, please hit the share button so That other people can join us today. And if you're watching on YouTube, feel free to share that link with anyone you think might find this interesting today. So, great. Continuing on here. Jeremy I'd love, if you could tell everyone a little bit more about what your life was like before meeting Divya.  

[Jeremy]: And this is Jeremy. Before, you know, I know I was very young. I was still like a team. Um, I didn't know about various issues. I didn't know about the deafblind community. It wasn't until later that I did, it was really after graduation.  

[Jeremy]: And I was dealing with the feeling of isolation. I was frustrated that I couldn't find a job and you know, this is all back. Like 10 years ago, I was still a student as a student at Conklin Center for DeafBlind and that's in Daytona Daytona beach, Florida. So I was there trying to learn to be independent from the blind program. And the supervisor of the program asked if I was interested in going to Helen Keller Awareness Festival, and just socializing with other deafblind individuals. And it was something that I thought about and decided that I was actually interested in it. So I went to Orlando and when I got there, I went into a restaurant and it was like a big conference room almost. And I had never really seen that before in my life. It was my first time. And I was able to actually look around and see people communicating tactilely, really see lots of deafblind people communicating with each other. And I mean, at the time I was very quiet and shy. I didn't have a lot of experience with that. I didn't know about that blindness. So I actually was there that I was introduced to Divya. You know, I introduced myself. I was like, my name is Jeremy Best. And did he actually sat down with me? She was very excited. Um, she was happy to talk with me cause I think she knew that I didn't know what to do in that setting. So she was happy to talk to me and tell me what to do, you know? And she, we talked about like our oldest friends in our lives and growing up, and it was like a great connection.  

[Jeremy]: And really the takeaway from that was how did your sort of upon herself to help introduce me to other deafblind individuals? Because Divya was more familiar with that. She had already been to Helen Keller National Center and not something that I was thinking about myself. I thought about it for like two years. And I was like, you know what, maybe I go, maybe I won't. So two years later I ended up going, it was like November of 2014. And I went, I became a student of Helen Keller, but I was still quiet at the time and I was shy and I didn't really have the deafblind identity yet. You know, I was meeting all these people who are deafblind . I was getting training. I was there for nine months. And finally, once I left, I knew what it meant. I had that deafblind identity. And I really had like an increased independence. I knew more about tactile communication and braille and deafblind social socialization. And it was great. And later on, we had the YASP, which is the Young Adults Summer Program, which is supposed to Helen Keller National Center. And I was brought on as a mentor. I got to work with Divya again, she was facilitating this. Then again later, like two years after that, you know, in little increments here and there, we started communicating, we're text messaging with each other, and I'm starting to think that I actually liked Divya. And then I think later on in 2017, I went to Universal Studios with Divya in Orlando. We were together, you know, my niece was with us. She was guiding us and we were just taking in the sights and I was joking with Divya. We were having a grand old time laughing with each other. We were very independent. It was a great day. And to this day, I consider that to be our first date. You know, later that night we went out to a restaurant, we chatted, we were joking again. I was trying my best to make Divya laugh. And I had given her a gift, which I thought was pretty nice. You know? And then later, a year after that, we went to the Transition Institute for Young Adults who are DeafBlind, and their families are welcome to go in as well. And that was hosted in Tennessee.  

[Jeremy]: And I was a mentor. I was involved in different activities with the teens and the approach parents. And I got to talk about how I learned about what it means to be deafblind, to encourage the participants, to seek that identity of themselves and see what it means for them. So thinking about work, all sorts of things, then three days later, we met, you know, Divya's second mom, Emily. And we had a video that was talking about her retirement. There was like 150 people watching that and I got to see the whole program. You know, there were interpreters there as well as SSPs and volunteers. And I was surprised, you know, of course I was a little nervous. I took that time actually to get down on one knee and proposed to Divya and Divya was shocked. You know, I think everyone was shocked. Like there's tears are all around. It was very emotional. And I really asked if she wants to marry me. And she said, yes. So we hugged each other and we celebrated and it was very exciting. Then a week later I actually flew out to Divya and that was the first time I became a member of DeafBlind Citizens in Action. That was the first time I was the member. So I did do that then a year or two later brought us to today where we are dealing with COVID, which is very concerning. Cause we don't get to see each other as often. Um, but I am hoping to be able to move to Orlando from South Florida sometime in the future. And I hope that once we do, we get to spend more time together and be happier. So that's my hope for the future. Thank you.  

[Doug]: Yeah, that, that was terrific. And certainly a lot to talk about in there. So I'd like to go back a little bit, and just talk a little bit more about some of, some of the things that you mentioned. So Divya, I'd love to go back to, you know, Jeremy talked about how he was relatively new to the deafblind community when you two met each other and that you kind of helped him, um, kind of helped introduce him to the deafblind community in a way. Can you, can you talk a little bit more about that from your perspective?  

[Divya]: Jeremy had never met another deafblind person. He went to hearing school growing up in South Florida. I thought he was the only deafblind person cause he never met anybody else like him because everyone else around him was either deaf or hearing. So he had a lot that he was holding back Because of that, because of it, His vision loss and his hearing loss, he was really holding so much in, when he became a student at the Conklin Center, he learned a lot of new things, The idea of what it meant to be deafblind it's it has a culture, there's an experience similar to other cultures and other experiences. When I first met Jeremy, he was extremely quiet. He didn't understand what was going on with his vision and his vision had tunnels. He didn't have much forever vision. He didn't really understand interpreters and how they were signing. And that is one of the reasons I helped him. I wanted him to feel comfortable around him to feel welcomed as if he was at home. I asked him if he needed any sort of help or support because he had no sort of advocacy skills at that time. No one's supporting him. And you know, for him, communication was tough. I know he prefers English sign language. I most interpreters use ASL and Jeremy was struggling to understand them. And I would, you know, tell interpreters and sort of translate for Jeremy to make sure that he understood because he didn't understand their ASL.  

[Divya]: That was different for him. You know, he was, and it was interesting that he was able to understand me, but not able to understand others. I shared with Jeremy my experiences in being deafblind . You know, I explained to him what my vision is, all that sort of information and that deafblind people can do things in every day life. You know, that I said, I've been to New York and I encouraged in Jeremy, you should go to New York, too. It would benefit you. It would benefit your life. It would make it so much better that, you know, for me, there was a drastic change in for you. There could be addressed exchange. And I have seen that change in Jeremy. He used to hold things in. He used to be very shy and almost isolated. And after meeting me and my encouragement, his life has dramatically changed. I can see it. It is amazing. He is so talkative. So animated. He has a lot to say, he's got lots of thoughts. He's extremely creative. He loves to engage in conversation, be independent. And that is so different than the person he was before. I'm for me, I feel like I sort of encouraged that change in his life, and for the better, you know? And I wonder, did I help do that? Did, did God somehow inspire me to meet Jeremy to help him? Is that, you know, some sort of divine intervention here and I'm very happy for Jeremy and happy for the big changes that have happened in his life. He now, you know, with his family and friends, he even, they even see this change in him. They're used to, you know, this, this is just a different Jeremy than before.  

[Doug]: I love to hear that. You know, we, we often hear in, in relationships, people refer to their partner is their better half. But certainly, you know, what we hope for in a relationship is that each person helps the other person grow. And it certainly sounds like you've had that effect on each other, which is, which is really amazing. So, I want to go, Jeremy took us through the story of him proposing. I'd love to hear about that event from your perspective, Divya. Can you walk us through what that was like for you? Was it something that was completely unexpected in that moment? Can you tell us a little bit more about that moment from, for you?  

[Divya]: This is Divya. I did know, before he did the actual proposal, I knew it was going to happen. He, before it happened, we've been traveling a little bit and he just kept saying about, Hey, what do you think about maybe getting engaged? What's your plan? And I just kinda suspected something was coming. He also talked about it to my best friend as well. Um, and they had been in communication over it. So I knew something was sorta coming cause he had encouraged my friends to come to this event. So I knew something was in the works, but I also was surprised when it did happen. You know, I had the idea that he was going to propose while we were at the Institute, but I wasn't sure on the other side of that, I was very happy.  

[Divya]: You know, again, just going back to it, wasn't something I expected. I wasn't sure, you know, is it too soon? Is it, you know, all those sorts of things it has was something I considered, but really how he did it, you know, and showing people that we could see that we were both very happy and I knew that we were going to have a happy future together. And so that's why I said yes to the engagement that's, you know, how it actually happened was, you know, obviously in a very special place and, you know, it's, you want something to be romantic when you envision it before it actually happens. You know, lots of other places are special and beautiful and you know, there's proposals, but having it happen there, the way it did in my home, you know, as we're there supporting the young people and the teens and I had been going to that site since 2005, I had been working as a mentor, lecturing, and then around 2010 rather is when I started lecturing. So having all that time and all that history there, it really felt like home to me, it really felt like that was my family. So I was really happy that the proposal actually happened there the way it did.  

[Doug]: So Divya. I know that when we first connected to actually talk about, the event that we did last night with The Feeling Through Experience, when I was getting to know you more, one of the things that you brought up was that you really wanted a platform to talk about your love story between you and Jeremy, that you thought it was really important for other people to hear about a deafblind love story. Can you go into a little bit more detail about why, why that's important to have a platform to talk about that topic?  

[Divya]: This is Divya. It's really important to show the world and show them that people with disabilities can do everything except for us, we can't see, or we can't hear, or other individuals that perhaps have physical and physical disabilities or challenges. Everyone has their own sort of way about going and doing things. People with dual disabilities, we have our own goals. We have a life that we want to live our own motivation and our own way of getting there. It's important for young people for the younger generation, as they later grow up and become teens, and then eventually adults, or whatever time that the deemed appropriate for them, either their twenties or thirties, they might be feeling nervous. Like, how do I go back there? How do I date someone that's deafblind or has a physical disability? How do I do it? It can make someone nervous. I noticed, You know, they might, those young people, they might have other siblings that are more carefree and don't worry about that. But people with disabilities, you know, we have a different experience, a different experience, what it means to actually date and what that looks like. Usually when you're trying to, you know, dating someone that's deafblind, and when you're candid or rather your candid, hey, I want to date you. I'm deafblind. You sometimes you have to educate others around you and others might have a negative perspective at times that you can't do that. You're deafblind. You can't, there's a whole host of things that you can't do. You can't have children. So there's a lot of negative perspectives and opinions out there, which you need to push aside and you need to be positive. We need to learn and have experiences and grow. Say you're dating someone and it doesn't really work out.  

[Divya]: That's fine. Look for somebody else, look for that right person. You need to follow your heart. You'll find that person when it's the right time, when, when it's the right time in your life and the two of us or the two of you rather, will build that relationship. So it's really important that the younger generations have that and see that and have role models for it. Also, I've noticed lots of people out there in the world. Don't, you know, there's not a whole lot of love stories that include people with disabilities. There have been slow changes where there's love stories that include individuals with disabilities, but I really haven't seen many that include deaf people or deafblind people, well or individuals in wheelchairs, perhaps two people that are both blind, whose hearing blind individuals. You don't really see their stories being told as openly out there in the world. When you read books or you go to the movies, you know, you don't see that out there. And we need to educate people that people with disabilities have a love story too, and that can impact and touch people's hearts out there in the world and start a change, a change that can eventually make things better in the future to have more equality on what a typical person versus a person with disabilities has in their story and have a unity of life between all people and equality. That's basically what everyone wants is to have equal access and equality every day of their life that people can achieve and do whatever they want.  

[Doug]: You know, Divya. I was nodding profusely throughout that entire, what you were just saying because it was, it all was so beautifully put. And I hope really rings true for everyone who's gonna, who's watching this live are gonna come to this later. Um, certainly, I think you really just encapsulated a lot of what the Feeling Through platform is. Um, you know, the hope being that certainly it's important to talk about elements of, deafblindness and deafblind culture, because it's not something talked about very much, but more than that, it's a space for people from that community to talk about a lot of other things that don't have to do with deafblindness that are universal. That everyone experiences, like love like a love story and the importance for other people who are maybe unfamiliar with the deafblind community to be able to see people within the community as fully formed multifaceted people, just like anyone else who go through life experiences, just like anyone else, and experience these important aspects of life, just like anyone else. So you really captured that beautifully. I'd love to ask Jeremy as well, just on that topic of why it's important for people to hear about a deafblind love story. Uh, do you have anything else that you'd like to add to that?  

[Jeremy]: Sure. This is Jeremy. I really want people to be aware of not only deafblindness, but people with disabilities. I want them to know that, you know, they can have friendships and meaningful friendships that they can have their family support and understand that they're in charge of making their own situations and pursuing their own happiness, that they can live independently. That love can make things happy for them. And it's a real blessing and that those partners can live together, that it is possible, and how people can learn about individuals with disabilities and how they live. And it happens with couples and, you know, you see people coupling up all around. I myself have seen a lot of deafblind individuals marrying each other and others with disabilities, and they live great lives. They're very happy. They're very fulfilled. And I think it's important for people to see that because it'll help them when they come to those own decisions on their own and that their families can support them and all loved ones can. And how it doesn't have to just be about the couples. It could be everybody that comes together because of this love.  

[Doug]: I have a question that I'm going to ask both of you, but I'd like to start with Divya. Divya, was it important for you to find a partner who was deafblind? Was that an important part of partnership to you?  

[Divya]: Yes. With different disabilities. And let me Give you an example here. Individuals with disabilities can be successful and can have good relationships. For me, it was important. I needed someone to understand who we are, where I'm coming from. And for me, you know, identifying as a person that has a disability and I needed to figure out how this person would fit in my life, what my future would look like, you know, setting my goals and having those in place, having patients honestly, is another characteristic, having faith. And finding the right time in my life would lead me to great successful things as compared to rushing them and not having the time and be right in my life. So it was different for me. I wanted to find a person I don't with other individuals. Let me just say, I always thought there was this sort of wall between us until I met Jeremy. With Jeremy, he was the right person for me before him, you know, things were not that great. And with Jeremy, I had, I took it extremely slow. I wanted to know what Jeremy's goals for the future, where I needed to know more about his background. I wanted to really make sure he was the right person for me or not. And clearly he was, you know, it started out initially with Jeremy initiating with a little bit of flirting, which eventually, you know, I resisted, I, I put up a wall there. Um, but he did it slowly. And for me, it was important,  

[Divya]: You know, to have that respect. And I think that's important for people with disabilities to feel respected, to feel that their cultures and their traditions are valued And, and really to have that respect for everyone and their families and traditions that everything is, everyone is valued. But for me, with Jeremy, It was different than it was with other people. We were happy. We are happy together. And right now it's the right time for people with disabilities out there to start opening up, to talk to their family members all throughout the world, no matter your cultural beliefs, your traditional beliefs, individuals with disabilities need to get out there and tell what their desires are. Talk about what they're looking for in a partner or a person they want to be with so that their family members can understand and help them find the person perhaps that they're looking for. People with disabilities want to be happy in their lives as well. And family is also a part of that. It's important for everyone to have unity, communication, and really just being open and supportive of everyone as well as to educate each other. And once you have those traits, you will feel like you're gone from being a stressed out, frustrated person, which isn't a happy life, which is chaotic. And I don't want that sort of life, but once you can get that sort of place where the time is, right, you'll feel better and educating others will help you open up even further to share with your family as what your desires are for the future and your goals  

[Doug]: And Jeremy, was it important for you to find a partner who is deafblind?  

[Jeremy]: Sure. This is Jeremy. I think it was important for me. No, I think it was important for my life. Um, I'd have to give it some more thought, but I do think it was yes.  

[Doug]: Also Jeremy, you know, Divya had mentioned earlier that she grew up with, with Hindu culture, traditional Indian culture. And I know Jeremy, you mentioned before that you're Jewish. I'm not sure how much you identify as that culturally. We didn't get into that yet, but I'm wondering if, there's ever been any, if that's ever been challenging in any way to navigate the cultural differences between you?  

[Jeremy]: This is Jeremy. No, no, no, no problems there. You know, we understand the situation as it is. Um, I'm not, you know, the strictest Jewish, I am like the reform Jewish tradition. So I mean, I'm open to whatever traditions come. When Divya and I get married, you know, we both have that mutual respect. I am mindful of honoring her traditions and her family celebrations. And she's the same with me. Yeah. And there's all sorts of different beliefs out there and different celebrations that we will be celebrating together. And I think that you can do so respectfully.  

[Doug]: And Divya, to kind of, um, throw that similar question back to you, did you feel any sort of need or, or responsibility to marry someone who was traditionally Indian, of Indian culture like yourself, or was that not something that was necessary for you?  

[Divya]: This is Divya. Cultures and values are important, but if it's those cultures and values are not the right person or not at the right time in your life, it's, it's maybe not going to work out. It won't be the right fit. And for me, there are many people that it wasn't the right fit with that maybe had those attributes. You know, maybe it's part of the fact that I've been, you know, in Canada or the UK, and now you ask there's all, you know, it's all affected me. And most important for me though, I have to say, is happiness following what God has given me. And, you know, I've asked God to please bring that right person into my life. And he answered that for me, you know, through a lot of soul searching on my own part. I really had to figure out is this person, the right person for me or not? And so, yes, although I have traditional family values and those are important to me, things have happened that have shorted shifted, uh, shifted my path, which has then led me to Jeremy.  

[Doug]: So, I understand, Jeremy question for you. I understand that you and Divya are currently living in different places. Can you talk a little bit more about that?  

[Jeremy]: Yes. Right now we are living separately. We're doing the long distance and you know, my hope is sometime in the future to get a job, you know, it's been a challenge I've been looking for quite some time, but I am looking to relocate to the Orlando area. So this way I can go there, you know, and hopefully continue my life with Divya, get married, um, and we can live together. And I hope that happens someday. You know, I am very spiritual and I think it's going to work out.  

[Doug]: And, and where are you currently living now?  

[Jeremy]: I'm actually also in Florida. I'm more South Florida in the Fort Lauderdale area. Um, so it is like a drivable distance to where Divya is, um, like four hours or so, but that's kind of where I'm at.  

[Doug]: And Divya. What's it been like for you to navigate a long distance relationship?  

[Divya]: This is Divya. Long distance can be a pretty much of a challenge. We don't get to see each other in person often. I would say we see each other as sometimes every four to six months, depending, you know, we'll see each other during Christmas break during summer break, honestly, you know, maybe another time in between there, but we go long periods of times without seeing each other. And it is different. Yeah. But when we're together, I miss Jeremy when we're not together, I do dearly miss him. I love being with him. We, you know, we love being together and making plans for the future, but we have this distance thing and that's the situation we're in. We talk all the time through FaceTime, through texts. We communicate with each other obviously every day. And that really helps keep us connected to each other. My spirit is with Jeremy, as I know that his spirit is really with me. So even though we're physically distant, our spirits are with each other. And we're just waiting it out. You know, we've been doing the long distance thing now for four years and I remain optimistic that hopefully one day Jeremy's going to, Jeremy's going to be able to move here and we'll be able to start our lives together and have probably ever after.  

[Doug]: And Jeremy you'd mentioned that you're currently looking for a job in that area. Is there a particular kind of job or a particular field that you'd like to work in?  

[Jeremy]: And this is Jeremy. Primarily like my first job. I mean, I'm looking for two different opportunities, really. Like I'm currently looking in the food services industry, you know, I'm looking at like restaurants and hotels. I'm also looking something, you know, with technology currently I'm working with, I Can Connect the ICC. I'm a trainer for that program. I have been for the past two years and you know, it's a good, flexible schedule. I can go around working with deafblind individuals, how they can use technology for communication purposes. That's one job that I have, but I was hoping to add a second job in, you know, in services or with technology.  

[Doug]: Divya, a question for you. I know before you had mentioned that people need to see more representation of, you know, deafblind couples and deafblind couples in love. I'm wondering, have you ever personally experienced any discrimination, particularly around your relationship with Jeremy? Is have you ever experienced anything around that?  

[Divya]: This is Divya. Not really, not what I would call discrimination about our relationship. There have been people let's say we're at the airport or different authorities or the TSA, the airport, you know, they did, they use spoken language and I try to communicate that we can hear you. We can't see you, you know, and they just go a mile a minute, you know, so we've experienced that sort of communication and being able to rather, that sort of discrimination, being able to communicate in our environment, and not being able to access our environment. So that's what we've mostly experienced discrimination. You know, it's important to know what the environmental information is. And then I share that with Jeremy. You know, obviously I can't ignore Jeremy. I want him to be in the know, what's going on in the environment around us. Um, but most of the time, you know, the two of us have a very positive relationship and, and others do as well. There's no sorts of, uh, discrimination that we've really experienced as a result of our relationship of being together.  

[Doug]: Jeremy, I'm wondering, in addition to, you know, you and Divya being far apart from each other, has COVID compounded any challenges for you? Has, have there been any additional challenges during this period of time where coronavirus has been around?  

[Divya]: This is Divya. This is Divya signing. So during Coronavirus, that has been a big obstacle. It's caused me to be even more isolated as well as for Jeremy to be more isolated. We're both home, we're both lonely, we pretty much are in the house. We'd go out very occasionally, maybe just for a walk, but it is quite lonely, quite isolating. We used to FaceTime, you know, often and text often. And rather that's all we can do right now. We can't visit each other in person. So all we have is texting and FaceTime. You know, we need to be safe for both of us, need to be safe. And that is why we maintain this distance. Jeremy is a tactile communicator, um, or close signer and with coronavirus, you know, and this whole social distancing thing, you can't do that. And I can't go to see him the way I like to, and I can't maintain a social distance because he wouldn't be able to access me for communication. And Jeremy again, using tactile sign language, you know, that that's a challenge. So thinking about what would happen if we were actually in fact close to each other, you know, what if one of us was to be home sick as a result of that. And we just decided that our priority to each other is our safety.  

[Divya]: We are hoping that Jeremy looks for a job and which is difficult to really find in the economy right now. We're hoping that once he's able to move, we'll see what the next steps are. Then for us, we'll make plans to be where, you know, to be close together. Because right now, really the concern, especially with traveling, if I was at him or he was to visit me, you know, the, the touch that you would each have, like taking an Uber or a Lyft, getting onto the bus, you have to touch things in your environment. And neither one of us wants to get sick. So we're going to see how things unfold here, you know, or being in Orlando, and where he is in South Florida. And wait until perhaps things are more safe and then we will be able to get together again.  

[Doug]: So with the last couple minutes we have here, Jeremy, I'm wondering, are there any closing thoughts you'd like to share?  

[Jeremy]: This is Jeremy. Sure. I mean, COVID has been a challenge, you know, not just for us, but for a deafblind community overall. It's really not easy. Um, it's really hard to socialize distantly. Um, I am hoping to move. I am hoping for that, you know, personal growth of owning a home and getting transportation done. I am looking at like how I'm going to navigate the world, using masks and gloves, figuring out how I can go food, shopping, getting what I need, simple things like that. You know, I think I'm going to need to figure it all out without the same assistance that I've been used to. And it's going to be a challenge for sure, but I'm planning for it now, you know, I'm already looking online.  

[Jeremy]: I'm able to bring food to me via online services that are delivering it to me. So there's options out there that needs to be explored. And I wish we were in a situation where I could visit Divya or she could visit me. Um, but given the danger that's involved, it's just not feasible. And I feel like we're going to really have to wait for COVID to go away. And then from there, hopefully we'll have a lifelong of living together with Divya and we'll take it from there.  

[Doug]: Well, certainly I'm hoping that you too can be come together And be in the same place as soon as possible. But I want to thank you both for joining me today and talking about your love story. Not only was it really interesting to hear, but I think it's, as you both mentioned a really valuable thing for other people to hear about. So thank you to all of you who tuned in today. As always, we'll be back with another episode of Feeling Through Live next week, same time, same place. And, for those of you who have been enjoying this, please share it with friends and family so we can help build this community even larger. And for those of you who haven't seen The Feeling Through Experience yet, or want to tune into a future one, feel free to go to a feelingthrough.com, sign up for our mailing list, where we'll announce the next opportunity to see it. All right. Thanks again, everyone, for tuning in. Thank you, Divya and Jeremy, and we'll see you all next week. Bye everyone. 

Feeling Through Live • Episode 17: DeafBlind Pastor Talks Faith and Embracing DeafBlindness

[Doug]: Welcome to episode 17 of Feeling Through Live. I am very ecstatic to be joined today by Dr. Francis J Casale. He is a man who's lived many lives, including being a pastor. So today we're going to talk about a whole host of things, but before we hop into things, um, Dr. Francis I'd love, if you could just give a quick introduction, to, to everyone who's watching.  

[Dr. Francis]: Hello there, I'm very excited to be here. Thank Jesus for that. So just to introduce myself, I grew up in a Catholic Italian family. My grandparents and my parents moved here to America. They went through Ellis Island here in New York, where they immigrated and then I was born here in the US.  

[Doug]: Well that's um, that, let's get into that and open that up a little bit more. So let's go back. You said you were born to an Italian Catholic family. So what, I guess, as a child, what role did, Catholicism and religion play in your life?  

[Dr. Francis]: This is Dr. Francis. Growing up in a Catholic household. I was around priests a lot. I was an alter boy. Around the age of 10 is where I started that for seven years. And I worked with priests and we went to different churches for services. I also worked with the Bishop as well as the Cardinal I worked with Father Harlan in New Orleans providing a week's worth of services there. And I really enjoyed it so very much. It really allowed me to further become connected with Christ and with our Lord.  

[Doug]: So again, I wanna, I wanna just take a little bit more of a step back, cause I know that there's been quite a journey, um, from you as a, as a small boy to you now as a pastor. Um, and I know that, before we kind of get into that, I'd love to just talk, on the, on the side of things about, you are a man who is deafblind, and I'm wondering if you could explain a little bit about your journey through that lens and how you came to know that you were deafblind or how, you know, if it was something that progressed over time or if it was something from when you were a child. Can you explain that a little bit more?  

[Dr. Francis]: This is Dr. Francis. Sure. I'd be happy to share that with you. I was born deaf, which my parents didn't know at the time that I was deaf until I was the age of two. I was a typical baby. I would play, but my parents noticed I wouldn't respond if they called me. So they took me to the doctor and they realized I was deaf. And I, at that time was heading, do you speech? They reached out to a speech therapist at school in California and figured out how to teach me how to speak. And that started when I was age of three, I also went to the American School for the Deaf and that's the first deaf school founded in our country. It's in Connecticut, in West Hartford.  

[Dr. Francis]: So when I was around peers, I had 14 other students, 12 to 14 other students in my class. And many of them had deaf parents and they were signing like hands up in the air going lightning speed. And I was just in awe of that. I was frustrated. We would play a game, let's say together, even just simple, something with a ball. And as I got older, I would miss things when we were playing games with my peers. And it was frustrating later on when I was 16 years old, I did learn to drive a car car would veer a little bit. And my instructor said to me, I think you should go check to see an eye doctor. And I said, I can see just fine. And they said, no, they recommend that I go to see the eye doctor. And at that time is when I found out that I had Usher syndrome at the age of 16, the doctor explained to me what that meant. It would mean a tunneling of my vision. And I didn't realize I didn't have great peripheral vision. I also would experience night blindness. And my mom asked the doctor, how did this happen? And they said it was something genetic, something within the family. And that was a challenge to hear many years later, my wife and I, we have two children who are now grown one daughter. She is an interpreter. She is hearing. And she would hear, you know, our conversation and tell me everything that's going on. You know, why I had such my challenges that she would hear out in the community in 2012, when there was further discussion regarding my vision, you know, I was afraid I was upset. And when I was talking with my mom about it, you know, really that experience changed my life. And that is because of Jesus.  

[Dr. Francis]: You know, I got my theology degree. I have my family, I have two wonderful children. And in talking with my mom, my mom really divulged a lot more information that when she was pregnant with me in 1947, my mom went to visit, visit my father's side of the family. And someone in that family had rubella. And although they visited, they tried to stay away. And my mom who felt bad for her, tried to help her out. She gave her a little bit of cream, to this family member and my mom thinks she perhaps contracted rubella. And that's why I was born deaf and later lost my vision.  

[Doug]: I see. So going back again, I want to, I don't want to speed too quickly through your childhood. Um, because I know from when we were able to connect the other day, I know that you shared with me that though you were born into an Italian Catholic family and were an alter boy when you were younger and certainly, Catholicism played a large role in your life. I know that at that time, um, you were somewhat, I don't know if skeptical is necessarily the right word, but you, you didn't necessarily have the relationship to God and your faith now that you did then. Can you talk about how things were, prior to really coming into that relationship when you were younger and not quite there yet? Can you talk a little bit more about that?  

[Dr. Francis]: This is Dr. Francis. So again, growing up in a Catholic household, I used to watch the priests as they gave their sermons. I looked at what they did on the alter. They really studied it. And I looked at my mom. My mom would often pray for me. You know, I thought maybe, perhaps I want to become a priest myself. I would learn how to become a priest. And I saw how my mom would interact with different other parishioners and their relationships with God. And for me, you know, I was young. I went to Gallaudet and that time I decided that, and I didn't want to be Catholic. I was going to be an atheist. I did not want to be, have anything to do with religion. I was going to be an atheist and a friend of mine in the 1970s in California, explain to me about Jesus Christ and how he saves people and how he heals people. And I was having some difficulty at the time, obviously as with my vision loss. And, and I was thinking that Jesus Christ, you know, I needed a stronger relationship with God. And the vehicle to that was through Jesus Christ. You know, Jesus Christ is essentially the high priest. You know, Judaism, Judaism has their high priest. Jesus Christ is our high priest. And so at that point, I accepted Jesus Christ on July 4th of 1974. And it just resounded through my life. I felt such joy in reading the Bible and really studying it.  

[Dr. Francis]: And I learned a lot about religion and not just about religion, but really Christianity. And it really impacted in a change within me. I was struggling, but I was proud and God really helped to save me from my pride. And over time I gradually improved. I focused on self-improvement as much as I could. And that is how I came to be where I am.  

[Doug]: So before we continue, just to reminder for those who are watching, if you have any questions throughout this episode, please feel free to type it in the chat box. We'll certainly get to it. And if you'd like to share this, if you're on Facebook, please hit the share button. If you're watching on YouTube, feel free to share the link with anyone who you think might be interested. Um, and so continuing here, so you mentioned kind of the, the moment that things shifted for you around your relationship to, um, God and Christianity. But prior to that, you said you were atheist or kind of identifying as atheist for some period of time. Can you talk about what, what shifted from being a young boy who was an alter boy in an Italian Catholic family to at some point in your young adulthood, identifying as atheist for a period of time.  

[Dr. Francis]: This is Dr. Francis. Yes. I've seen lots of changes in myself over my lifetime. I always thought that, you know, I wanted to be able to see again, I was frustrated. I was exhibiting challenges. I would get bumps and scrapes and bruises. I would typically seeing at night I was jealous of others. And, you know, Christianity taught me to not be jealous of other people.  

[Dr. Francis]: And when I met my wife, we went to a Christian college in Dallas, Texas called Christian for the Nation Institute. And this place is a famous place for recovering and, and the interpreter. is just going to clarify. And for this place is famous. They have a world renowned program, they have interpreters there, and I was extremely motivated. Lots of people gathered and prayed for the healing of my eyes. And I was just proud at the time. I was still fighting. I was losing more vision and I was just struggling to hold onto my vision. I was saying, I can still do things with my sight. And even though I broke my wrist, I broke several of the things that my body had had injuries. And I changed because after, so graduating from this Institute, I went to the Helen Keller National Center and people said, Oh, you're deafblind. And you're a preacher. And I could just see something, God had a different plan for me. God had a plan and a reason for me being deafblind. And I had resisted that plan until 2001. When I joined the Church of God in Palomar, Colorado. And I was the pastor at a retreat and I was the only deaf person there with an interpreter. And I prayed one evening, I begged the Lord. I begged him for healing, please, Lord heal me and John, at that point, read John chapter nine in the Bible. Verses, several verses. And it said it, asking, the blind man asked Jesus for healing. And it, and it's, was he blind because of his sins? Is that the reason that he was blind? And Jesus said, no, it is not.  

[Dr. Francis]: That is all in God's plan. And I realized, God sent me, you know, God sent me for this purpose. And it really impacted me the story that I had read in John. And it was, it made my life. I knew God had a plan designed for me. And I gave up my pride. I gave up what I wanted and I gave it all to the Lord. And I just sobbed. I just felt this enormous change within me. It just opened so many doors. I've, you know, been a part of TV programs. I've done missionary work, I've preached, I've expanded the community. I help them three churches and seeing all these and witness all these things happen. I know you have to think of the board for that. I have to thank the Holy spirit for helping me to understand their plan and going into Helen Keller National Center in 2012. I learned so very much there. Wow.  

[Doug]: Well, there's, there's so much in what you just shared. And I certainly, I have a couple specific questions about all, some, a lot of the wonderful things you just shared. But before I mentioned that, I want to say that one of my later questions was going to be, are you, do you know of other deafblind pastors. But I will say that William Eipper, just, um, who's watching on Facebook right now, just messaged that he is a deafblind pastor as well. Um, so I guess that at least partially answers a question that I was going to ask you later, but, but William who's also a deafblind pastor, says hi. Um, and so hello, William, thank you. Thank you for watching today. Um, but to go back to some, to go back to some of what you were just talking about, Dr. Francis, um, and there's so much really beautifully told what, what you were just talking about, but I know that you were talking about the topic of still kind of battling the fact that you were losing your sight and kind of not wanting to, still wanting to find a way to, uh, get your sight back. Um, and then obviously this shift, particularly around the verses that you shared from the Bible that really had that profound effect on you, where you, you much more deeply embraced your deafblindness. But before that moment, before that happened, could you tell us a little bit more about some of the resistance you had initially to accepting yourself as a person who is deafblind?  

[Dr. Francis]: This is Dr. Francis. Really for me, it was pride. I thought I can do it. I can beat this. I can still drive a car. I could do all of these things. I can take pictures and photography and all these things that I love to do. And even though I struggled, I wanted to keep doing it. You know, I love the game of baseball and football and I would try to participate and people will be like, you can't do that. There's something wrong with your vision. You can't do it. And I would say, you know, I'd say, no, I can. And I'd stand up there and I'd watch, you know, when I was playing baseball and I'd watch that pitch come in and I'd try to catch it and it would go past me. And then I'd go looking for the ball that was, you know, on the ground behind me. And someone would run up right next to me and say, the ball's right there. And then I'd pick up the ball, I'd throw it on it. And other people would say, yep, better you just, you know, be a bench warmer. And I wanted to play. And it was a fight. It was a constant fight as I grew up. And finally, you know, I gave into our Lord and what his plans for my life were, you know, in, in going to the doctor. And, and when, as a child and finding out about losing my vision, I realized I needed to be careful. And although I wanted to keep doing what I was doing, but really I had to take care of my life. And in spite of all these things that were going on.  

[Doug]: So, I'm going to actually go to a question, from one of our viewers and, and certainly, you know, I think this question pertains to the topic you were just discussing as far as once you've, once you really embraced God and, and really, really let that kind of, once that shift happened for you, how it's really served you in your life. But the question comes from Nilam. Hello, thank you for joining us again. She, Nilam is a, a great friend of the Feeling Through community. And she asks, how do you keep faith if you've walked down the children's hospital ward way too many times? How do you find a purpose in God when you've held your child's hand multiple times, not knowing if they will survive?  

[Dr. Francis]: This is Dr. Francis. It all just comes down to faith, even though you can't see it, you know it's there. You have to continue. There's this, this line, this threshold that you are, and you just need to keep your eyes forward and you won't fall. You won't fall through. You will stay sturdy. And so you need to pay attention and grow through the Holy spirit, through your connection with that and maintain that face. So you don't fall away from the Lord. During my time, you know, growing up as a Catholic, you know, the priest would come to my house often and we didn't really have this sort of relationship. I didn't have a relationship with God yet. He, the priest actually came for one of my birthday parties and he gave me a gift and, and then left. And after I had eye surgery specifically for cataracts, the priest didn't come and he's, he promised he was going to come to visit me. And he said, Oh, I'm sorry. You know, maybe we can play cards or something. Sometimes it didn't really seem to be a whole lot of discussion. And I struggled with that. But now as I approach others, friends and family, I enjoy talking with others. I enjoy talking about my faith and talking to them about Christ.  

[Doug]: So, um, one more, actually, just one more question, about, going back to when you were still trying to hold on to, or regain your eyesight. Um, I know you had mentioned when we'd spoken before about some, some experimental procedures that you did in Russia at this time prior to really accepting yourself as, as a deafblind man. Can you tell me a little bit more about that experience?  

[Dr. Francis]: So it was in 1977, my mom found out through an article in the newspaper that Russia had some treatments that would help to be able to improve people with retinitis, pigmentosa, pigmentosa, which is what I had. So we had reached out and made preparations and actually went to Russia. And I was expecting with this, my eyes would be healed. My vision would be healed, but the doctor said, so with the retinitis pigmentosa on the retina, it would be a process to heal it. And we went back several times. In fact, 11 times over the course of six years, we went every six months to Russia. My parents spent bucket loads of money for this, and I saw almost no improvement. Well, we continued to go. At the Christ College, that my wife and I were there, at the Institute, we prayed together and really faith is the key. And I decided to no longer go to Russia. And I changed my life. I accepted, accepted who I am as a deafblind person, that God had a purpose for me, God had a plan and that was through the church. I could see all the things that were happening and that God loves all people, even deaf, blind people. And it was good to know that God had a purpose for me, but that pride, that sense of will. It was difficult to give up, which is why I went to Russia.  

[Dr. Francis]: You know, looking at FDA trials here in the U S they don't succeed. And part of that is because God has a plan.  

[Doug]: I'm wondering, you know, it was quite a, quite a while ago that you did those procedures that like, as you described, didn't end up, excuse me, that didn't end up, uh, gaining, gaining your eyesight back. Do you know what ever happened with those procedures? Is that something that they still do? Were they found just generally to not be effective? Do you know anything about where those procedures stand today?  

[Dr. Francis]: This is Dr. Francis. I don't know. I don't know if those procedures continued or are no longer. I'm not sure.  

[Doug]: So moving forward here to when, I want to go now jump back forward to, um, you know, after you really embraced, um, God, and also your identity as, as a man who is deafblind. Um, I understand that you, you've traveled the world, your faith has taken you around the world. Can you tell me about some of your travels, associated with your missionary work? Can you tell me more about that?  

[Dr. Francis]: This is Dr. Francis. After graduating from Christ College I did my first missionary work in Japan, in Korea, and I was there for in total a month. My wife interpreted for me, she is familiar with Japanese sign language. Her name is Kimie, she was Japanese. And so we traveled all over and people were like, you are deaf, deafblind person? You can do that? You can do this? I've also been to Honduras for missionary work. I've been there four times and there I helped people and taught them, provided counseling, helped provide training, as, as well as two deaf people there, because they are behind in their education. They're just with their system. I've also been to the Philippines.  

[Dr. Francis]: I've been there twice. The first time I helped to found a church. Second time during my second visit, there was a big conference with over 200 people in attendance. And those 200 people were from different countries all over the world. And I did several, preach several sermons there, and people were sobbing during my sermons. And I said, you know, why are you crying? Gosh, you are deafblind? I cannot believe it. You can do anything. You are fantastic. And so inspirational. There were deafblind people there too that were also very inspired by my servants. Back in the seventies or eighties, it was, I'd like to share with you. I really had a lot of thought about going to this Christian College. And a pastor from Missouri came to my church and was doing a sermon. And he was doing a liturgy at the church, and it was part of their deaf program. And he was encouraging deaf people, too. He had a free list, list of resources that he was giving out to people for worship to try and have people become more part of the community. And I was one of those applicants that he gave information to. And when we met, he said, wait a second, you're deafblind? You can't be a pastor. And I was furious. I couldn't believe he said that to me. I was proud of who I was.  

[Interpreter]: He's frozen, I have no feed right now. I have no feed.  

[Doug]: Oh, sorry. Can we hold one moment? Sorry.  

[Interpreter]: This is the interpreter going in and out on my video feed.  

[Doug]: Kamila do you have a better feed right now?  

[Interpreter]: I do.  

[Doug]: Can you pick up?  

[Interpreter]: I can just keep going or do you want to stop him?  

[Doug]: Oh, no, we can. Yeah, we'll hold for a second and then kind of pick up from where we are. Is that, does that work?  

[Interpreter]: Okay.  

[Doug]: Okay, great. So yeah, just continue with, with Kamila voicing. And, um, if we can just tell Dr. Francis to kind of just back up a little bit in the story. So actually hold one moment. We actually lost Liz. So the, the room got all reoriented here. So I'm going to need to just take a moment. This here, folks, is good old live broadcasting here. Um, as you can see, the, uh, the room is predicated on, uh, the, uh, zoom room orientation. And if someone drops out, the room kind of gets all a little bit wonky. So if you just bear with us here, uh, we're going to get this resorted in just a moment. It looks like a modern art piece for the time being, until we get things re situated here. So just give us a, just give us a few moments. This is kind of the beauty of live broadcasts here. You get to see all our mistakes as well. So, uh, this keeps us on our toes. Of course. Uh, just give us a couple more moments here. We'll be set. All right. Getting back here. Look at this, ready. So I'm going to be resituated in just a moment, here we go. One at a time. It's a little bit of a slow process, but we'll get there in a moment. Feel free to make fun of me in the comments. That's totally okay. Look, see, look, I'm back. We're gonna, we're gonna get our, we're gonna get our other folks back here in a moment. Just give us just a couple moments here. Alrighty.  

[Doug]: Here we go. Look. It's slowly but surely it's becoming a, not so much a modern art display here, but something that resembles what we were doing before. There have been a lot of storms on the East coast. I know. So reception has been a little bit tricky at times. All right. So we have you back up Ilissa, and just, in just a moment, we'll have Dr. Francis back with us here. Hold one moment. Thank you for waiting and bearing with us here. I'm sure this is very interesting to watch, perhaps it is. I don't know. Sometimes the bloopers are one of the most fun parts here, but we're about 30 seconds away from being looking normal again. So bear with us here in the meantime. Uh, this is a good, good opportunity to remind you that feel free to ask any questions you might have. Uh, I know Dr. Francis has been talking about some very interesting stuff, which might spark some questions you have. So feel free to, uh, to join in with any questions. And we're just, just moments away here from being back into a normal orientation. How does this look? How are we doing here? I think we're looking good again. All right. Hello everyone. Welcome back. So, Dr. Francis, sorry for that. We had a little bit of a technical difficulty, but we are back and ready to continue. Continue your story. So if you recall where you were in your story, I'd love for you to pick up from there.  

[Dr. Francis]: This is Dr. Francis. I was saying that, um, you know, that preacher had told me that I wasn't able to become a minister myself, which extremely angered me. You know, I had my faith, I was humble. I had been a counselor. I was an intelligent man. I had learned a lot and I wasn't going to give up. I had been through a lot of different challenges through my life, and I had walked down through my faith. So that was really, that had been the key to my success.  

[Doug]: So I know that, um, you know, it's interesting that you share that. I know in a lot of the conversations that we've had on Feeling Through Lives, certainly an ongoing topic is, um, the capability of the deafblind community meeting a lot of false assumptions that some people make outside of the community. Um, certainly, you, you have not, you are not only able, very capable of being a deafblind pastor, but have been one for quite some time now. But have you met resistance like that from other people as well throughout your journey as a pastor who is deafblind?  

[Dr. Francis]: This is Dr. Francis. Yes. Yes, absolutely.  

[Doug]: Certainly there certainly there are a lot of people, like, again, you're talking about a lot of people who might say that you're not suited for or capable of being a pastor because you're deafblind, but with that false assumption aside, can you speak to some of maybe the unique advantages or the unique gifts that you provide as a deafblind pastor, specifically being a deafblind pastor? Does that actually allow for certain things that say a pastor who isn't deafblind wouldn't be able to necessarily do in the way that you can?  

[Dr. Francis]: So are you asking in terms of how, my influence on others? Like how I help people? Well, I do educate people about my life as a deafblind individual, and the frustrations that I have had and the challenges that I think in that way, possibly, you know, people who have maybe a similar struggle or had a similar challenge, um, you know, I'm showing them that you can be successful and you can get through those moments in life. Um, but I, I have hosted, uh, workshops as well to teach those very things, how to persevere.  

[Doug]: What about for, um, is there any of your congregation that is, where ASL is their primary language? Is that, do you have members of your congregation where that's the case?  

[Dr. Francis]: Yes, really have three separate congregations. There's one that is hearing who they use, utilize spoken English for communication. One that is deaf and deafblind. And for that we utilize ASL American sign language, and we also have interpreters for those. So really, um, you know, I try to use what it is that people that need for themselves. I try to meet them where their needs are, and I like to lead by example as well. So when I'm there and I'm praying, I have an interpreter there on stage with me and there's music and, you know, everything's going on. And I walk around with that interpreter. So the interpreter utilizes tactile sign language with and engages the audience. So that's how I, and that's how I preach. And I read it really depend on that tactical feedback. I do, you know, I do turn and I make sure that I am facing the different areas of the congregation so that everyone has access to me. And if, say a congregant were to come up to me and want to talk to me, um, the interpreter lets me know, and we go turn by turn and we communicate tactically via tactile ASL. Sometimes, for an appointment I may be in my office. And in that way we would either communicate tactfully as well, or I would have an interpreter if someone wanted to speak privately and we'll do a one-to-one communication. And if they want it to be private and they didn't want to interpret, or then we would just speak directly with each other using tactal ASL. But there are people who are intimidated by that sense of touch. They're not comfortable with the tactical aspect.  

[Dr. Francis]: Yeah. I try to sorta just ease them into that, make them a little more comfortable chat, try to build that rapport. But unfortunately, because of the pandemic currently, the church has been closed. So we've been meeting on Facebook and on YouTube, and I've been utilizing my wife here as an interpreter, and there are individuals, um, on screen, on video as well, use a tap feature. They'll tap my leg to give me some cues. Okay. And that's how we set up that kind of situation. I did a mission in Iowa for a TV program, Silent Blessing. I was able to see pretty well at that time. This was in 2005. So that's actually when they would use that leg tapping as well as tactile signals on my back to give me cues as to where to go to guide me through the environment. I would track along the perimeter of different landmarks in the room as well, because I was starting to lose my vision at that time. And I really felt that it was important, important to really show people through that example, you know, how I was able to overcome.  

[Doug]: Speaking of TV shows, I know that part of your life's journey has taken you to being an actor. Can you, can you tell people a little bit more about that?  

[Dr. Francis]: Yeah. This is Dr. Francis. Well, I began the acting in high school. I was in a music group, a talent, dance group. And then when I went to Gallaudet University, I actually minored in art and drama and I just loved drama. So over the five years of my time there I was in 10 different productions. I was working, like, the lighting aspect, um, won awards. I worked in design and then I went to California and I continued on with that. I did a production there and it was quite impressing. It was really amazing.  

[Dr. Francis]: And then over the years, as I began to lose my vision, I was less and less and less involved with theater. I was also, though, in Silent Blessing. It was for parents of deaf children. It was an organization for parents of deaf children who, to teach them about Christ. And I actually play the role of an Italian chef who was quite boisterous and, you know, would tell stories. And that was the, uh, there were two videos actually. So that was one of two. And that was a TV program on TBN. And it was Dr. Wonders workmanship. And that was on daytime television. It was a small show, but then it became worldwide, but we wanted to promote it more for deaf people. And it was a half hour program and it talked, it taught about character, about respecting and, you know, being truthful and, you know, having that relationship to the Bible. It really connected back to the scripture. And it really taught respect for parents. And so I would be sitting there having a conversation and a girl would tap on my foot under the table. The camera was on me, but then under the table I would get those signals. So I'd be signing. And then when I got that touch signal, I would then gesture to that individual. So I would, I would face that individual and I was able to engage in that way. So I knew, um, when was appropriate turn-taking I was given those tactical cues and I really felt like I was, you know, acting for our Lord Jesus.  

[Doug]: Well, you know you kind of just answered my next question. Cause I was going to ask if your, uh, your life as an actor served you in your, in your life as a pastor, but it sounds like there's a very direct overlap in some instances.  

[Dr. Francis]: Yes. Yes.  

[Doug]: I'm wondering just with, we have about eight or so minutes left. Um, and, and certainly Dr. Francis, if there's anything in particular you want to make sure that we discuss before the conclusion of this episode, please do let me know. Um, but I, I was wondering if you could talk about, if you consider yourself religious or spiritual or both, and kind of what your personal definition is of, of religion versus spirituality.  

[Dr. Francis]: This is Dr. Francis. Well, religion is really rituals. You know, gatherings, it's something organized. So it really requires, you know, it's God meeting your needs and having that faith that he has given to you. He's given you that freewill and that's through Jesus Christ. So the spirit has come down on you in religion. There are things that we need to do to earn, to, to actually be considered religious, however, spirituality, you know, that's a relationship you have with God. That's something that's been given to you and Jesus laid on the cross and died for us. So religion actually follows the laws of the church, but the actual love and, and the blessing that's given to us, that's there. And the spirituality there are at times, you know, conflicts between religions, you know, not all religions agree, but your spiritual being is more of who you are. That's something internal, that's, that's the spirit inside of you, that's in your mind and it's God's love. And that power is there for us. And it's really a blessing as well.  

[Doug]: We had talked earlier about your journey from growing up, uh, with religion, your own kind of personal wavering of faith, and then coming into really giving into your faith and, and really cultivating that strong relationship to God and your faith. Um, so now, you know, I, as a man, who's been a pastor for many years, certainly been someone of faith for many years, how would you describe your deafblindness now through the lens of where you're sitting at this very moment?  

[Dr. Francis]: That's a really difficult question, but, you know, I feel that my deafblindness was really a gift that was given to me by God, because through my experience, you know, I'm able to, the life and the world, we all have to live together. So that's really my gift. I'm not just, you know, someone who sits around and feels pity. You know, I want to teach the world. I want to educate them about, you know, what it's like, you know, in my faith, it doesn't matter if you're Catholic. If you're Jewish, if you're sighted or deaf or blind, regardless of your culture or language, you know, it doesn't matter what culture you come from. You can do, you are capable to be a part of the world and to influence others. You know, a lot of people look down and think that deaf or deafblind individuals are not able to do things. And they feel that it's something that needs to be fixed, but there are deafblind individuals who do things better than people who aren't. So we really can learn from them as an example,  

[Doug]: Certainly a beautiful message that you shared and articulated in a really beautiful way. Um, William Eipper, EIPPER. I hope I'm pronouncing that right. Who, uh, who I mentioned earlier, who is a pastor who is deafblind, who's watching as well. He asks, what is your favorite Bible verse?  

[Dr. Francis]: My favorite Bible verse is Romans chapter 10, verse 17. And it really, it talks, it talks about listening to the heart. Faith is in the heart and you get the word of God. Everyone can have faith, and that's through the heart. That is where the spirit is. So if you're looking for God, you only need to look within and the spirit will be there. The spirit is in everything. Maybe we can't see it, but it's there and it will guide us. And that's my favorite verse, Romans chapter 10, verse 17.  

[Doug]: Well, that's, that's a beautiful way to wrap up. Today's episode is we're coming to, to time before we go. Um, I'd like to mention to all of you watching, if you enjoyed this conversation, um, please let other people know about Feeling Through Live. We do this, live stream every Friday at 11:00 AM Pacific time, 2:00 PM Eastern time. Um, we'll be back again with amazing guests in the future. You can also check out all our old episodes. You can go to our YouTube channel, youtube.com/feelingthrough. We have all of our old episodes. There are previous episodes there. Um, and if you haven't already please subscribe. And also if you click the little bell, the notification bell next to the subscribe button, you can also get notified when we go live so that you can tune in for all of these. And if you're watching on Facebook, we, we'll continue to post information about future episodes there, facebook.com/feelingthrough, we also have the, the previous episodes up on our Facebook page as well.  

[Doug]: And a reminder, um, if you haven't already, or if you want to join us again, because each experience is completely different, we'll be doing The Feeling Through Experience live stream on August 13th. Uh, and that will be, you'll be able to sign up for your free ticket at YouTube. Oh, it looks like we might've lost our interpreter. Oh, here we are. Okay. Froze for a second. Are you back with us Ilissa? Great. Um, we, I know that the East coast has been dealing with a lot of, uh, storms and, and such. So if it's getting, we, we fortunately didn't get too choppy until the very end here, but, um, but yeah, we, please, for your free ticket to The Feeling Through Experience, just go to a feelingthrough.com/register, and really that's a really a, one of a kind event. We'll have hundreds of people from throughout the country and around the world, join us for that, for this three part event, that includes the first film, starring a deafblind actor, a supporting documentary and a panel discussion and Q&A with some amazing guests there. So I highly encourage you to sign up for that. Again, feelingthrough.com/register. And finally, I would like to thank you, Dr. Francis for joining us today. Really such an amazing journey you've had and your ability to share it. I'm sure is really resonated with a lot of people watching. So thank you so much for joining us today. I think we just got a little, Oh, she froze again. Yeah. Okay. There we go. Ilissa, could you just let Dr., okay. It looks like we're perhaps getting just at the end of this, we're getting very a spotty, but in that case, I'm going to, I'm going to sign off here. Uh, thank you for watching. Thank you, Dr. Francis, and we'll see you next week. Uh, Friday, same time, same place.  

[Dr. Francis]: And Dr. Francis is saying, thank you so much. Bless you all love you all. God bless you. Bye everyone.