Feeling Through Live • Episode 16: 5-Star Service for Guests with Disabilties

 

[Doug]: Welcome to episode 16 of Feeling Through Live. I am joined today by Peter Slatin, who is a writer for forbes.com, a business owner that he's going to tell us all about what his company does in just a moment. And Peter, I'm so happy to have you here today.  

[Peter]: Well, I'm very happy to be here and I'm a little jealous. I, I love LA. So, uh, here, I'm in New York, I'm one of those rare New Yorkers who loves LA.  

[Doug]: Peter. I told you, you know, when, when travel is something that we're doing again, you have an open invitation to come visit me. I'm actually waiting for that. So with that said, you know, why don't we start off? Why don't you, why don't you tell everyone what the Slatin Group is and what you do?  

[Peter]: Okay. Thank you, Doug. The Slatin group is a company I started about five or six years ago. Um, based on my experience, my long experiences as a journalist and writer and traveler, uh, as a blind person, traveling around the country and here in New York City and having had many very uncomfortable experiences in a service environment where someone in customer service, uh, really didn't know what to do with the blind guy. How do you handle this person? How do we make him comfortable? Are how do I get away from him as fast as possible? So I don't have to deal with it. Um, so I concluded that there needed to be some training and education brought forth into this space, um, to help people who are working in service or in other environments, but are suddenly confronted with, or interacting with someone with a disability, not just a blind, or visually impaired person, but someone, whether they have a physical disability wheelchair use or they're deaf or hard of hearing, or they are neurodiverse, um, to kind of change the dynamic in that, so that people feel comfortable on both sides of the equation so that people with disabilities can get equivalent service to what everyone else gets to what non-disabled people expect.  

[Peter]: Um, and you know, I, so that's what we do. And we go to we've most of our business has been in hotels. I'm sure most of you remember there used to be this thing called a hotel, um, kind of rare these days come back, but we also work with, um, attractions with, uh, businesses. Uh, we, you know, we actually, it's a diverse supply. I created an e-learning program, uh, that has the same lessons as my in person workshops. And, uh, we distribute that. So it can be a run across a platform, um, an entire company, a, an entire, uh, management platform. What have you. So for example, that's in use at the Sacramento County airport authority. Uh, I developed that with a, who's an expert in instructional design and really amazing, man, we made an amazing products. We also distribute that through the American Hotel and Lodging Educational Institute. So it's been adopted by a number of management companies to manage, uh, say 60, 70, 80 hotels. Uh, and so we're really happy with that. And, uh, what else can I tell you?  

[Doug]: So I was, there's, there's a ton to talk about in there, you know, particularly given the current context of, you know, like you said, how much the hospitality business as a whole has been affected by coronavirus, and what's been happening over the last number of months, but also through the lens of the recent 30th anniversary of the ADA. And I know you're, you're certainly an expert in that. So why don't we, you know, I'd love to just kind of start to go into some of the elements of that and, you know, something that I've become a lot more familiar with over this last month, where we've had the opportunity to, to talk a lot about the ADA with a number of different people. Um, you know, as we've just celebrated the 30th anniversary on the 26th of this month, I know that like a really integral aspect of the ADA is, um, the advocacy element and for people, you know, kind of the advocacy component of the consent and having people really having there be a legislation that supports people speaking up and pointing out when there is a lack of accessibility that, you know, again needs to adhere to the guidelines of the ADA.  

[Doug]: So I guess the question from that is, I guess, from, you know, when you got started in with your business, like how many, how many other businesses did you know about that were working in that space, or really like specifically in, in that, in the lane that you find yourself in?  

[Peter]: That's a great question. And frankly, uh, I knew of only one at that time and that businesses it's a nonprofit, uh, and they focus, they have focused more on, um, airports, airplanes, you know, airline travel and they do some work with, uh, an track as well. Um, they're based in Chicago called Open Doors Organization. They do a good job. Um, and, uh, you know, as I said, they're not in profit. I decided to become a for profit, um, for the simple reason that people with disabilities, Hey, for whatever they receive and in the hospitality environment. And I think it's really critical to the transition that the ADA is helping to, uh, to promote, uh, to a world where we're all really equal in the world that we stop thinking of disability in charitable terms and in philanthropic terms. And, uh, and what I like to call, you know, uh, no offense to little old blue haired ladies, but little old blue haired lady terms from, you know, the 20th century, um, with volunteers and, you know, all that's important and there's still a great need for it. But I think this is part of a transition that says, we need to think about the business, uh, and the enterprise power of people with disabilities.  

[Doug]: I, and I love that because, you know, again, that, that way, once you point that out, I think the great equalizer when you're talking at least about, um, you know, particularly larger scale organizations accommodating is like the bottom line, right. And like the financial return on it. So even if you're not per se, someone who cares so much about making things equal for other people, which would be nice thing to be implicit, right. There is, there is a lot of money to be made accommodating the disability community. Is that correct?  

[Peter]: That is correct. Then, you know, it's, um, that's the, this is a challenging point and it's been a challenge since I began this business and it's really changed a lot in those years. Um, and you'll pardon, you know, I am on the upper West side of New York on upper Broadway and they're not coming to get me, but they, you know, there's a hospital nearby. And, uh, so you'll hear some sirens. Um, sorry about that.  

[Doug]: We don't mind, we don't mind sound effects. That's totally fine. Hope they're not coming to get it. They could be closing in. You better hurry up, Peter, before they do get you.  

[Peter]: So let me talk fast. So here's the challenge. Um, it's a chicken and egg thing. Meaning I would go to hotels and say, you know, I, you know, you need this kind of training because you'll need, you're going to be seeing more and more people with disabilities come to your facility. Um, and they'd say, Oh no, we never see anyone with a disability. And people don't come in. I'd have to say, well that's because they're not used to the world is not yet accustomed to receiving people with disabilities. The ADA, now it's 30 years old. Now there are facilities that are open and available to wheelchair users and all kinds of people with all kinds of disabilities, but it wasn't a mandate before no one had to do anything. Um, and if you were born with a disability, you got a memos, but please stay at home and don't bother us and, or let us put you in this institution or that institution.  

[Peter]: So there was no, there's the tension between how many people are you serving? How many people can you serve? And if you don't make it easier welcoming, um, uh, fewer people will come. And if you make it welcoming, well, certainly what, um, what, uh, disability advocates like to call the ADA generation, um, which would be people like you, Doug, and are people born on or around or asked shortly before after, and certainly after 1990 in the signing of the ADA have a completely different world view of what disability is because they are born into a world where, and into a country where it's actually a right, um, delivered through the force of, uh, uh, of legislation that legislature talk much. It's it's there. You can't deny it, whereas before it just didn't exist. So a quick example, uh, the first hotel I trained at was in your neck of the woods, it was the Hyatt Regency LA Jolla. Uh, also officially known as the toaster was designed by Michael Graves. Um, and I, I remembered interviewing the staff and I asked the general manager, well, how many people with disabilities do you see in your hotel? And he said, you only get one or two a week. I mean, a year he said, we only get one or two a week, a year. When I say, that's what he said. We only get a couple of years later on with the manager and other managers not present. I asked the staff, how many people with disabilities do you get? And they said, Oh, we get a couple every week. You know, and this was a difference in the top line and the bottom line of a frontline workers. So, you know, the frontline saw who was coming in and the managers were, you know, often behind closed doors and it did not see, but you know, that as, you know, just only continue to increase. Right. So, so yeah, there's just more, more people coming into the world, taking advantage of what the ADA has enabled and empowered. And I'm still fighting old battles, people who are clinging to, or not clinging to what stuck with, uh, you know, a previous worldview, a prior worldview, um, when, uh, there weren't people with disabilities out and about and visible, right.  

[Doug]: You know, again, without feeling the need to, uh, go into too much detail or share any proprietary information. Can you talk about what some of the topics are that you address when you're, when you're consulting and training the staff of various hotels or other tourism companies? Like what, what are some of the key kind of topics that you cover?  

[Peter]: I go about itin a few, you know, I have a spiel. I'm not going to give you the spiel, you edit it's. Um, but it's basically, you know, first I make sure people know more about what disability is and the community. I talk about history of disability. I talk about the ADA, but I also talk about what, what makes us this important right now. And, you know, we have, as, you know, continue to mention the ADA, but when it was first passed in 1990, it was really directed at physical barriers, physical accessibility make doors wide enough for wheelchairs to pass through. Let's create ramps. Um, you know, and that's really what people associate with accessibility, ramps, wider doors wheelchairs. But of course it means a whole bunch of things. So we have physical barriers then, you know, by the mid to late nineties, we started to have a digital world, um, that didn't really exist, uh, for the mainstream in 1990. And so digital accessibility became a thing that is actually only now really becoming understood by businesses, that if they don't make their websites accessible, then someone who uses a screen reader like me, someone who's print disabled. And in other words, you can have a severe dyslexia or ADHD, or just other reading challenges. Um, if you use a screen reader, um, you can get around that, but if a website isn't screen reader friendly, then I'm not going to understand what's happening and I'm not going to be able to deal with it. So there have been in, uh, really in the last few years, mounting thousands of lawsuits against companies with companies, government entities, uh, educational institutions, um, retailers, et cetera, with, um, with or website design and an accessible website design. So that's the second prong of what I call the three legged stool of accessibility.  

[Peter]: You've got your environmental slash physical accessibility. You've got your digital accessibility. Well, if you don't have the third lag, you have basically nothing. You need social accessibility. And that we can't legislate. I go to the Supreme court and say, you know, Doug was rude. He didn't know how to speak to me, or he grabbed my arms are pulling me along. Instead of me letting me, instead of letting me be guided by him properly to where I needed to go, or he started leaning on my wheelchair and patting me on the head, or he screamed at me with my, with my hearing aid, um, all kinds of dumb behavior, uh, that can't be legislated, but can be trained. Um, and, and, uh, a viewpoint can be reframed. Um, so to me, social accessibility is really the key. And as I say again to my hotel clients, you can have you run a five star hotel and you have beautiful, um, accessible rooms, which is basically, uh, an oxymoron in the hotel industry. And if we can get into that or you have a fabulous website, but someone comes in and the staff mistreats them and ignores them, or somehow just says stupid things and, or can do something hazardous or dangerous because of their unfamiliarity with disability and their ignorance of really what are the best ways to work with someone then that's what that patron will remember. You know, so for example, I trained recently, my last hotel client was, um, the Pierre Hotel here in New York, a five star hotel. And I really felt so great work at a hotel like that historic five star property, where they really wanted to be brought up to date, and they have hundreds of employees because of their banquet facilities. And it was, it was a wonderful opportunity for me to go to a hotel with that kind of reputation and work there. And yet I also worked at hotels like the W South Beach, you know, or, um, where the uber hip and well healed and, you know, they want to know too it's, but I find it as the forward looking clients that they want to get ahead and wants to lead in the space. And that's true.  

[Doug]: You're referring to these, these forward looking clients, but like, I guess generally speaking, how often do you see, or in your estimation, is it, um, a hotel or, or another business really earnestly wanting to provide better accommodations versus seemingly going into it more from like a quote unquote box checking perspective? Like how often do you find one or the other.  

[Peter]: That's, you know, sadly, um, unfortunately it's still the latter. Um, there are really two basic reasons I get hired the first is forward-looking clients learn about my services and say, yes, that, that, that's what we want to be that defines our approach service to everybody. Um, the other clients are the clients who get sued and then decide with the horses back in the barn. Um, and nothing makes me happier than someone calls me before they've been sued.  

[Doug]: That's forward thinking for sure.  

[Peter]: Yeah. But, but, and I will say that really in the, um, six months, uh, six to nine months prior to the arrival of a novel coronavirus attitudes were changing. And I was very excited about this year and on the verge of some very good contracts and, you know, stuff happens. Right.  

[Doug]: So I definitely want to get into that in a moment of, obviously we can't talk about this category of life without talking about how it's been directly affected by coronavirus, but before that, um, I'm just, I'm also curious, you know, obviously having had the opportunity to train, you know, a lot of managers and other staff at a lot of different, um, hotels and tourism companies, do you find certain, um, misconceptions, um, common? Do you find like, are there like certain ones that come up a lot or certain ones that stand out that you, that you encounter a lot during these trainings?  

[Peter]: Sure. Um, the biggest one and, you know, this is it's understandable, but, and a lot of these are understandable, you know, and you can approach it either, uh, with an attitude of, I don't care how understandable it is. You, you gotta know what I need right away. You got into it to me that that's not going to help anybody. Um, uh, the biggest obstacle after fear, let's say that fear is really fear of the unknown. Um, that's, that's the biggest obstacle, uh, but there's also the, the idea that, okay, this person wants to be independent, so I better not help them. Um, and I had someone say to me, when I asked for a certain service, he said, uh, basically I want it to be guided to a gym. And I wanted help getting set up on the equipment, because guess what a workout machines have all touch screens now. And there's no way for a blind person to know where to stop or start how to turn it up or down, uh, you know, anything. Um, but he and the manager said, well, we were told you, you people like to be independent, independent. And I said, yes, we like to be independent. Um, until we can't, you know, and the truth is everyone needs assistance. Right. You know, you, you learn to create podcasts, not entirely by yourself. I imagine, uh, you've had help. Um, we, you know, we all need help from someone at some point and disability is a place where assistance is needed and desired. Um, but forcing someone to accept assistance. And that's the flip side of people who step back and don't and say, Oh, you need to be independent. The flip side is that is the presumption that you need help. Uh, and so for example, people often tell me where I'm going. When I know where I'm going. They assume I don't know where I'm going, or that there's a curb coming up, and that's why I have a cane or a dog, you know? Um, they try to be very helpful when it's not necessary. Um, and then if you say, thank you on fine, they feel affronted. So it's a very cautious, um, intricate dance.  

[Doug]: You said that, it sounds like for those who might be coming to this topic from a very like uneducated or lack of experience standpoint, that there there's the, that runs the risk of vacillating between these two wildly kind of, um, sides of the coin is if like on the one hand it's like maybe not thinking to help at all. And then when kind of broaching the subject of how to be like how to be of assistance in the appropriate way, maybe overcompensating by like quote, helping too much, right. When it's not needed, or then being told, well, you know, like hearing this hearing the notion of being independent, they go like, well, then I won't help at all without really having the understanding to find that middle ground. So if you will, and then, you know, yeah, please go ahead.  

[Peter]: You know, the thing is, disability is just like everybody else, everybody experiences their disability in a unique and personal way, and that's not trite. I mean, yes, we all have that issue in common, but we all, you know, for example, uh, you know, wheelchair users or people who are deaf or hard of hearing, um, you know, no one, uh, the, the number of people, the percentage of people who are profoundly deaf and actually hear nothing at all. And the number of people who are quadriplegics and can only move their mouths or their eyelids. Um, that's very tiny, uh, and same with blindness. Um, people who have no optic nerve never have, and I've never seen anything relatively small. So, and the way I experienced my eye condition or conditions actually is different than someone else with a similar conditions. The rate of regression changes, um, from person to person. So you have to make allowance for these personal, um, like could have idiosyncrasies if you want, but, uh, but also understand, okay, there is this blanket condition of vision impairment, uh, and certain things apply across the board and certain things don't.  

[Peter]: So the more you're aware, um, the better off everybody is. And as the world, you know, it is a, as I mentioned earlier, generational thing, and, you know, in a few generations, a lot of these stereotypes and misconceptions, they won't ever vanish entirely, but they will certainly have subsided to some degree, but just as we're seeing now with Black Lives Matter and, uh, racial tensions, racial, um, injustice, uh, there's, there's always people who will claim too old and terrible notions of what, what, the way they think things should be. Um, and that's true for disability. Uh, just like, just like it is with, with other, uh, other awful social injustices erased.  

[Doug]: That makes me think a little bit of something else you were mentioning at the top of this part of the discussion, but you mentioned that the, um, something that comes up a lot is this fear among people that you're training. Can you open that up a little bit more and kind of speak to that  

[Peter]: With pleasure? Um, because you know, the, uh, it's funny, uh, several years ago, really about six years ago to explain what's going on. When people meet people with disabilities, people who are unfamiliar with disability, what happens, what happens is I collect the contagion response, uh, in other words, Oh, here comes somebody in a wheelchair or who has a, uh, some kind of visible, um, developmental or cognitive challenge or a white cane, whatever. I don't, I don't want to catch whatever it is that they've got. That's the contagion response. And now that there's COVID-19, and we know that contagion can kill, right. And actually the contagion response has a legitimate, um, foundation in the history of medicine when diseases like polio or, uh, meningitis or, uh, measles, no, which caused terrible disabilities. Um, and there are those in the disability community who would say, Peter, you just use the word terrible, and that's able ism, and I can get back to that, but it caused disability and people are afraid of them. And, um, and so any disability that triggers that biological, emotional, evolutionary response that says, keep me away from that. Um, and of course that comes right up against something else, which is, you know, survivor's guilt or, you know, feeling, uh, fortunate to not have X, Y or Z condition, and then feeling guilty that you feel fortunate and it's a whole slew of things. And until people learn to recognize it and process it, and, you know, like recognizing your own unconscious bias, um, it will persist. There's no weight it,  

[Doug]: Um, I'd love to follow up with a question about actually like the contagion mindset. You said there for a moment though, I'm just gonna hold for an interpreter switch.  

[Peter]: Sure. And I'm going to take a sip of water. All right. It's perfect time.  

[Doug]: Okay. So switch you over here. Give me one moment, Patrick. Real set. Excellent. Okay. So continuing here, that's, you know, I find that so fascinating and I guess I've never really thought about it in that way. And I'm just like, wondering to clarify, when you speak of this kind of like contagion response, do you like literally mean that I see in some people maybe consciously and a lot of people perhaps subconsciously that there's really this feeling that they might catch, literally catch a disability from someone in that way.  

[Peter]: It's almost universally subconscious it's, you know, um, and I'd say the, you know, because, and as I said, it's, it really is rooted in, in reality. And what used to be that you could catch disability and now, uh, COVID is something you can get, we are seeing it, people get disabled by COVID-19, you know, that we just heard about the lung transplant. And if not being able to breathe is a isn't a disability. You tell them what it is, you know? Um, so, uh, you know, there's a flip side to it though. Um, and this at the sort of the other end of the spectrum from fear it's, um, amazement and, uh, uh, some kind of some, sometimes a fetishization of a disability, it's the, uh, you know, and I can best I'll tell a story. Quick story is, you know, someone came up to me as I was waiting for the Crosstown bus actually on 96th street, Doug, on, uh, between, uh, just, just, uh, East of Madison Avenue.  

[Peter]: And, uh, this woman came up to me and said, I'm amazed by what you do. I can never do what you do. It's so inspirational. And I said, well, first I beg to differ with you because I'm sure if you were in this situation, you would learn to cope and you'd be able to do it. And there's people in the disability community talk about inspiration porn, you know, um, which, uh, my favorite example of inspiration porn is when you, if you go to say a, a fundraising dinner for any condition, and there's always some kind of a video showing a hapless, um, person with a disability, usually, uh, a young child who's trickling music in the background and a sobbing parent. Um, and yet this person somehow managed to, you know, climb Mount Everest or whatever. There's something to me just getting up out of bed for everybody. We all have to get up, get up out of bed, work to feed our families and ourselves to take care of ourselves. That's inspiration. And so if you say I'm inspiring, I appreciate the thought, but it's also not helpful. It's um, as just another, it's another, it's a burden, because what if I don't feel like me inspirational today? I certainly don't wake up every day and say, I'm going to go inspire some people.  

[Doug]: Absolutely. You know, and that's something certainly, you know, obviously speaking from like the media storytelling side of things, that's certainly a dangerous trope to fall into, um, as a storyteller. Um, and, and, you know, in, you know, uh, including, you know, the disability community, your storytelling, um, is that trope of falling into, you know, the disabled character being there, just like their function being to inspire others and, and kind of hold me that. And that's certainly something that, um, certainly it is often problematic in storytelling as well as obviously your day to day real life experiences.  

[Peter]: Yep. And, you know, we've seen a little bit of a shift toward debt in that recently, you know, there's a, of course always discussion of do blind, should all blind parts be played by blind actors. Um, I think that's a really interesting question because isn't that what acting is of you not blind, you learn to be blind and or you learn how blind people behave and, and, you know, however know there are lots of blind actors and dancers and, you know, uh, artists and why not give them a chance, you know, um, why not let them do it because they're ready to go. Um, but it's a worthwhile question. And now, but now I think there are more roles of, uh, people with disability where the casting or not the casting, the, the writing and directing is more reality based and more, um, aware than it used to be.  

[Doug]: Yeah. You know, that certainly is a whole topic in and of itself. But just to that point that you're talking about of like, well, isn't that what acting is to like take on someone else's experience. And it certainly is. Um, but I think, you know, it's one of those things just like you're talking about as far as like, you know, there being plenty of, you know, not in your example, blind actors out there, and to play that part in some seemingly at, standing here from this, in this moment, inconceivable world, in which every person of any, you know, disability or race or gender or sexual orientation all had the same kind of opportunities as everyone else then perhaps in that world. Sure. You know, that absolutely because everyone has so many opportunities, opportunities are so abundant that it's, it doesn't feel like it's taking something away from someone, but in, in a world where that's so disproportionate, um, in the, in the sense that some of these, some of the numbers that have certainly surfaced again during this talk around ADA, and again, I'm not going to get this a hundred percent. Right. But something to the extent of, you know, I think, you know, anywhere between 20 to 25% of the population, um, you know, it has a disability of some sort, whether visible or not visible that there, I think it's something like only like 3% of characters are portrayed in media, in mainstream, like TV and film. And it's like a small percentage of those are, are played by disabled actors. So obviously you can see the disparity there, but yet it's an interesting topic. And certainly one that's super relevant to the practices of the industry.  

[Peter]: I'm going to give a little plug to, um, someone I know who just started, um, recently, and she just won a great award from the National Federation of the Blind. A woman met an actor named a blind actor named Marilee talking to, uh, recently opened the Access Acting Academy. I think it's secure in New York City. Um, she won a $25,000 award from the National Federation of the Blind for, uh, for being great, I guess, for just doing something really positive for blind people. And, um, so, and her goal is to train blind actors who are blind to want to act. Um, I'd like to shift a little bit, um, to, uh, back to the pandemic and, and contagion and, and, you know, one reason I have contagion response is so relevant today is as I mentioned, the pandemic and one of the things the pandemic has done, and there was a lot of discussion about this in the community early on, um, is, and I've written about this a couple of times on Forbes.com. Uh, basically it's shown the world what life can be like for a person with a disability. We, disability has always involved a lot of isolation and it's not as much as it used to be. But, um, certainly I think in the world of the deaf and hard of hearing, it's, it's endemic. Also in the world of the blind. Um, but these, every everybody who has a disability experiences, it because in the certain way you can be separated from others. Uh, you can't hear what people are talking about. You are separated from that conversation. He can't tell where people are going, um, without assistance, then you're separated from them that way. And if you can get there, because there are barriers and obstacles, that's also a separation. Um, so isolation has been key and now suddenly people have found themselves isolating in a way they never expected to do staying home for long periods, depending on others to bring them their food, to, uh, take care of them. They're depending on technology for assistance. Um, they are, uh, just getting used to not interacting at the drop of a hat when they, when they wanted to. And I think, and also to, to really being afraid of catching some something and, and other people stay away from that.  

[Doug]: Peter, just again, you know, I encourage any of you watching to read, um, you know, Peter's articles on forbes.com and we'll make sure, you know, we let people, well, what is the, I mean, I can share a link later, but what is the best way for people to, to find those articles?  

[Peter]: Um, I, I have a page on forbes.com, uh, search my name and Forbes. Um, and it'll be there, you know, and I can also send you a link to that page. So you just searched through the articles. Now, what's funny about that page is years ago, I, in my previous life, I wrote about commercial real estate and architecture. I was a journalist for many years and that's what I wrote about. And so I had a column on Forbes, uh, in, in Forbes, the magazine and on the news on the website, writing about real estate investment trusts and, you know, big, big real estate types. And, uh, I think a lot of that is harder to access. I think I published my hate mail from a certain orange cartoon character now in Washington, when I wrote something that he didn't like, he sent me some hate mail and kept it as a proud badge of honor and in the really cheap frame. So, uh, yeah.  

[Doug]: No, sorry to cut you off there, but I'm there too, to that point, there's actually something I'd love to discuss about design before I referenced that just on your last point about how COVID has made other people, um, have to kind of learn some of the things that the disability community often experiences. I'd love to just read a quick passage from your article, uh, from late April entitled disability will be part of the new normal, and you write that by forcing people all over the U S to shelter in place. This virus is introducing America to how so many people with disabilities live their lives before the passage of the ADA. And so many who still do people with vision, hearing mobility and cognitive challenges to functionality have found themselves living out their days inside walls, that they were forbidden, unable or expected, never to leave stretching back into history, to encounter the disabled out and about was to fear contagion, which I think is just a nice little section there that kind of, uh, in, in, in your words, and one of your articles speaks to several of the topics we've been discussing here.  

[Doug]: And again, I urge all of that. I think so. I mean, at least your name's on it, but again, I encourage all of you to, to read Peter's articles. They're not just informative and interesting, but also certainly not short on a real, um, perspective point of view, and, and certainly not short on, on a wry sense of humor often too, which, which I appreciate. Um, but to your, to what you were just talking about, and again, to, to reference another one of your articles, the trouble with accessibility, um, you know, you ask, uh, you know, during this discussion of like, you know, universal design or, or accessible design or human centered design, as you know, our various terms, you know, of, of, in which people are starting to think about how to be more successful, you pose the question, um, isn't designed for everybody. This is quote isn't designed for everybody isn't designed, supposed to be accessible. Isn't designed by definition human center. Yet these labels all highlight something that has been missing design that allows all to participate, to use, to feel welcomed and empowered under any circumstances, however, circumscribed and I, I feel like that's such an interesting thing to open up for a moment. And first, can you kind of just explain what, like this concept of universal design or these other words are and how it relates to the sentiment that you share in the passage? I just read?  

[Peter]: Well, that's a big ask. So why not, you know, universal design, which is, I'd prefer to say accessible design, just, but I prefer just to say design really. Um, but we're not there yet, but basically it means design. That is by definition for everybody, everyone can participate in it, take, take advantage of its positives and experience its negatives in similar ways. Um, everyone can enter and leave. Everyone can, um, enjoy the different levels. Uh, everyone can hear in a space, even if it's crowded, um, uh, everyone who wants to hear everyone can, you know, and not everyone wants to hear. And that's a beautiful aspect of deaf culture. Um, but everyone who wants to can, uh, everyone in the wheelchair can maneuver through a space. A blind person can somehow determine there's wayfinding, that's set into the floor that helps, or, or elsewhere that will guide you to where you want to go. That it's intuitive in that sense. Um, and not just design to look nice, but actually function, um, in a positive and accepting way. And, you know, I don't particularly like the word inclusive if you've read my articles, but I'd love inclusive  

[Doug]: To quote you just once more, um, on that. Um, I'm only gonna, by the way, I'm only gonna speak in quotes from Peter Slatin from now on. Um, but in your article, the Trouble with Inclusion, um, you write, and I love this, but you write, Groucho Marx got it right when he said he did not want to belong to any club that would have him as a member. I feel much the same way about the inclusion mantra that is being parroted from corporate offices to nonprofit, profit stalwarts, and piggy backing on the diversity whale like a pilot fish, which I love is such a strong to start an article about that. Um, but yeah, if you'd like to continue on that note of what you meant.  

[Peter]: My basic point about inclusion, and I kept hearing this word inclusion, and I kept thinking, well, included by whom. And of course, to be included means at some point you were excluded. Someone's inviting me to this dance to this game and I'm here already and who are you to invite me? And, um, and I understand why it has to be that way now, but if you're going to include me, then get out of the way and don't continue to act like the host who has invited me. I don't think I said this in the article. It was just, okay, if you invited me, then let me, and then remember we're all here equally. Not that you're the host and the same. I think there's this diversity is the same thing.  

[Peter]: What's diverse from home. I mean, we all know, but that's the challenge. And it's just a know, there's finally now a push to really take that, that, that phrase, that thinking and say, it's not about just populating a company with, um, some good-looking, uh, people in various races, et cetera. It's understanding that there's that this is the society, and you're not marketing back to our earlier discussion to just one kind of person. And that brings in just for fun. Cause we'd, haven't had enough to talk about that brings in ages of, you know, and the concept of, uh, old age in this country being a place you put people away, and because you don't have to live with them anymore, they're a bother. And that's how we were schooled and raised to think of old people. And there is a, you know, and I've been speaking about this more recently, there is a big Venn diagram with the big chunk in it about the confluence of older age and disability and same things about isolation and learning technology and independence and dependence, and, um, accepting your place, you know, age gracefully, you know, whatever, uh, don't get pissed off. All of those things apply in, um, ageism. And, uh, so it's just, just a part of the whole fabric that's, that's changing and getting woven in new ways and that older people can work and can add value, you know, um, age of retirement, no longer the age of retirement, especially in an economy that's dominated by multibillionaires keeping most of the money for themselves, you know, and people have to work. It used to be that, you know, a feminism was given a boost by, uh, the facts of single income households becoming, uh, less, um, less sustainable in the seventies and eighties. And so on. These had to be dual income households. Well now, uh, retirement age is no longer something we can rely on and turn to and say, okay, I'm 65. Now I'm going to stop. Pensions have been rated by corporates and our, you know, if we had a pension at all.  

[Peter]: And so it's just things are, are different. And, um, so we have to learn to think of, uh, all of these things in new ways, um, whether we want to or not. I think that's what makes it a really exciting time, despite the really difficult challenges we are living through in this, um, multi crisis time of a way, um, uh, pandemic and, um, a government that's hostile to, uh, to democracy, frankly, and the rule of law and, um, and, uh, an economic disaster and, um, and a sustainability let's just throw in another one just for fun.  

[Doug]: But other than that, things are great.  

[Peter]: laughs  

[Doug]: But it's just to talk about the pandemic for a moment here. Cause, um, you know, some people have asked this and with the kind of we have about eight or so minutes left in the conversation. I'd love to address this. Um, I'll just read, there have been a couple of questions about this, but from the Lighthouse Guild. Lighthouse Guild, thanks for joining us today, they ask and I think it was in relation to our earlier part of the conversation specifically about, um, you, the work you do in the hospitality field, um, how COVID is impacted that especially when COVID guidelines for safety were not designed for people with vision loss to follow.  

[Peter]: I'm sorry to hear. You're kind of fading, again.  

[Doug]: Um, Lighthouse, the Lighthouse Guild asks, um, how has COVID impacted your work, especially when COVID guidelines for safety. We're not designed for people with vision loss to follow.  

[Peter]: Very good question. Hello, light has killed. I love you. Um, and uh, I don't know who they're, but would have told me, um, so it, well, first of all, it's impacted my business, but the simple reason that, um, no, one's really, uh, looking for training on basic service right now. Everyone wants to train about this question COVID-19 um, uh, and how do you, how do we prepare to admit once we open up again and really start accepting, uh, guests, how do we prepare for that? And that is something that people are asking, starting to ask, well, they've been asking, but something they can expect to learn from us at Slatin group. You know, this, there are some real basic things. Um, you know, one of the things that happens is, uh, has to do with entrances and exits, um, in properties that people are now really trying to limit the numbers number of, uh, of entry points to buildings, whether they're hotels or office buildings or restaurants or whatever facilities, because that's the only way you can control the flow of people. Um, and so you have to make sure that when you're creating your, your, your very small group of entry points, that they all have to be accessible because people have to be aware of how to get there in an emergency and how to exit, um, it's really critical. Um, so you have to control distancing. Um, you know, this tends to be a matter of personal preference, uh, but there are all, of course there are people who will say, you know, I want to be guided from point A to point B, I'm blind. I need to be guided, but I need to stay six feet behind you. Um, and you have to just keep talking to tell me where to go, that'll help. Um, but you know, this all plays into one of the basic facts of, of experiencing hospitality from someone who presumes, they know how to help someone, one of the worst things that people do, whether pre COVID and post COVID.  

[Peter]: Um, but it's much less post COVID, but it still happens is payable. Just grab me and say, you need to go over there. That here's the chair. And I start pulling me in one direction or other and not just me, of course, but, um, I've been grabbed and pulled from every part of my body and it still goes on. So of course you don't want anyone to do that and you want to make sure your staff knows to not touch someone do not do not do not. Um, and, uh, you know, the, um, I think it also speaks to how, you know, for example, sign language interpretation, and, and also, um, face coverings, the mask mask hysteria need to wear a mask. If we're speaking to a deaf person, um, deaf people, some, I'm not going to say a percentage because I don't know it, but, and actually I think everybody, to some extent, we all rely on lip reading to some degree, and of course, deaf people who are, who have learned to do it, um, enforced to learn to do it, rely on it more. So how do you reveal your face, uh, in that instance and can you, and the answer is yes, you can, you have to stand back, um, and you, but you want to make sure you're standing under, you know, you're in lighting, lighting is not behind you, but in front of you showing you, um, you can also, you know, one of the great techniques now is already is, um, if there's difficulty communicating by talking, there's no interpreter and it's loud, et cetera, et cetera. You know, I always tell people, pull out your phone and write a text and show it to the person. Well, now you can send the text to the person or, you know, we can display that from, you know, from farther away somehow. So, um, there are coping mechanisms, um, but it's still a work in progress. And, you know, I did see, for example, I saw, uh, a law firm that specializes in, uh, it represents companies that are being sued over accessibility issues.  

[Peter]: They held a, a webinar, um, I don't know, a month or two ago, a month and a half or so ago about servicing the hotel industry, um, during COVID 19. And it was really important. Now we all know about, you know, lines, you know, saying, um, you know, lines on the floor tape on the floor to say, must stay behind this line. And, you know, you gotta make sure that you're gonna put tape on the floor, say in front of a checkout desk, um, so that people know where to stay, you know, how to stay park, gotta make sure that tape is nice thick tape. That not just a little thing that might feel like a scrap of paper, your brush with your toe, it has to be discernible. Um, and yesterday I went into a local restaurant and I went to order food and a local restaurant that had just opened up. And, you know, as I approached the door, I didn't know how they had set it up so that I could order. And I didn't think I would be allowed inside. And sure enough, when I, my chest hit, uh, you know, a, a rope at chest height that just feels like it's, there don't come beyond here. That was nice and clear. Um, it wasn't like a stiff rope that like caught me in drop me, but had a little bit of give. So it didn't fall down or wasn't really surprised. Um, so it just, you there's common sense. And then there are real guidelines, but it's really health and safety and cleaning, cleaning, cleaning, and masks, masks, masks. Um, and of course, and then there, there are other people with disabilities with reading disabilities, for example, for whom masks are hazardous or dangerous. And, um, that is something you have to be aware of. So if you chatted someone to put their mask on and they can't and wearing a mask is, is not possible for them, um, then you have to be aware of that and allow permit that it's not hard and it's hard and fast when people can safely wear masks, though.  

[Doug]: Well, you know, thank you for sharing all that and everything else we talked about today. I'd certainly love to keep chatting with you, but we're at time for today. So you'll have to come back and talk to me again sometime, I guess. Um, but yeah, thanks.  

[Peter]: Let's go Mets.  

[Doug]: Sorry?  

[Peter]: I said let's go Mets.  

[Doug]: Let's go Mets? I'm a Yankees fan. So I don't know. I don't know if this is going to work now.  

[Peter]: Went back?  

[Doug]: Well, no, thank you, Peter so much for joining us today. Why don't you just remind people, um, again, if they want to reach you, um, at the Slatin Group or, or read any of your articles where the best way for people to do that?  

[Peter]: I appreciate that. Um, Doug, uh, slate and group is slate and group.com. That's S L A T I N, group like group.com. Um, I'm at peter@slatingroup.com. Uh, my phone, if you want, Doug has it, but it's (917) 584-6094. Uh, my articles are under, uh, on forbes.com under my name, Peter Slatin. Um, and I there's a page there and you can access, uh, mostly articles or all of the articles I've written. Uh, since I began writing about disability, probably you can request some of the older pieces on, on real estate, but I'd love to hear from you. I'd love to help your organization. If you have one, uh, learn about not just training people in service, but if you need help adjusting your employees, helping your employees include other employees, welcomed employees with disabilities. Uh, I think that's key. You need help with, um, design accessible design and accessible digital design. I don't do either of those things, but I am happy to refer you to people. And I don't refer people for a kickback. I refer people. I always give you a choice and it's up to you to choose somebody. So I don't like to be like the tour drive tour guide who says, yes, this is the best in town. And I get 20% of whatever your bill is, you know, here. So I'm happy to refer you to help you out in any of those instances.  

[Doug]: Great. Well, thank you so much again, Peter, and thank you. All of you joining us, uh, as always we'll be back next week, same time, same place where the new episode of Feeling Through Live at 2:00 PM Eastern time, 11:00 AM Pacific time, and until then have a great weekend and a great week. Thanks so much. Bye.  

[Peter]: Keep Feeling Through, Doug.  

[Doug]: You as well, Peter. All right. Take care everyone. Bye. 

Feeling Through Live • Episode 15: How the ADA Paved the Way for DeafBlind Marathoner

>> DOUG:  Welcome to Episode 15 of Feeling Through Live.  I'm very excited to be talking with Brian Switzer today from Perkins School for the Blind.  He's a marathoner, he's lived a very interesting and diverse life.  So, you know, Brian there's so much to talk about today.  Obviously the 30th anniversary of the ADA is in a couple of days.  Certainly I want to touch on that.  But I'd love to hop right into your life.  Let's go all of the way back.  Let's start at the very beginning of little baby Brian.  You take us back. But I'd love to hear kind of about your early childhood to kind of orient everyone to you.  You have had such an interesting journey from then until now.  I know that's like ‑‑ I didn't even ask you how you're doing yet.  I'm just asking you to tell ‑‑ why don't we start there.  Let's start there actually, Brian.  I love to ask guests:  How have you been feeling through the last several months, your experience? 

>> BRIAN:  It's going really well.  My wife and I are pretty fortunate to be doing ‑‑ staying healthy and doing quite well through the coronavirus and everything going on in to world.  We are doing great.

>> DOUG:  I'm glad to hear that.  It's certainly a challenging time for lots of people.  But I'm glad to hear in cases where people are doing well.  It's a time for people, it's been a useful time to learn new things or kind of address certain things that may be they didn't normally have time to get to.  But I'm glad to hear you're doing well.  Let's hop ‑‑ let's hop right into it.  Can we ‑‑ let's go back, can you take me through the earliest years of your life here.  There's a lot to spring off to that to get to.  But let's go all the way back there.

>> BRIAN:  Definitely.  As you probably already know I have deaf‑blindness.  Severe hearing loss and I normally make out a little light visually.  That's because of genetic condition called Usher's syndrome.  You are born with it, obviously.  I was first diagnosed with hearing loss at the age of 2.  They noticed I was not speaking at the normal rate.  It took me a while to actually begin speaking.  So my parents started me on the path of learning Sign Language as my primary language.  And so I started off at a school for the Deaf a a child.  I went to the Boston School for the Deaf that is unfortunately no longer in existence.  After that I moved to the Learning Center.  After that I transitioned into a public school with an intervener. So I was diagnosed with hearing loss at age 2.  Then the vision piece was diagnosed really young for someone with Usher's syndrome.  I was diagnosed with vision loss at the age of 4.  That's because I had difficulty reading the blackboard.  Back in the day, I don't know if people remember before whiteboards there was a thing called blackboards.  You had color chalk and the contrast was really difficult for me to make out.  The teacher noticed if I was entering a room, if the lights would be too bright, I would suddenly be blinded by the light.  And I was awed for a second.  It's unusual for a child to stop moving. At the school for the Deaf they were really familiar with Usher syndrome.  So I went to see the specialist to make sure my eyes were okay. Unfortunately, I ended up being diagnosed with vision loss, Usher syndrome affects your hearing but also effects your retinas.  There's no cure or anything for Usher's syndrome.  A progression of vision loss, it starts on the outside and then over the years you form tunnel vision and eventually that tunnel vision closes up.  Sometimes people are fortunate and live their entire lives with some form of vision.  That's lucky for them. My vision started closing up and I started losing my central vision at the age of 24.  I had to learn how to adapt after that.

>> DOUG:  Just to go back to that moment, your parents learned about the hearing loss at the age of 2.  Then at the age of 4 is when the Usher's syndrome diagnosis was made.  Just from as much as you can speak for your parents, how do you articulate their experience knowing that obviously first that to the learning of your hearing loss and then finding out you were going to lose your vision.  Have you had discussions with them or have a good finger on the pulse of what their experience was like a that time.

>> BRIAN:  Yeah, we have had a lot of dinner discussions about what it was like when I was a child.  One thing my parents found was having reached out to people in the Deaf community, they were able to kind of figure out I could lead a fairly normally life.  They had a priest named Father Murphy.  He had significant hearing loss and was living a normal life.  He told my parents to hold me to high expectations and what I could do with a normal life. In my parents' view they would have kept me in bubble wrap if they had had their way.  But I was a kind of strong headed child and kind of wanted to do my own thing.  So, actually when I was age 4, I even told a teacher I knew how to swim and I didn't.  I learned how to swim by jumping into the deep end of the pool and I had to teach myself how to swim.  That's the kind of stuff my parents had to put up with when I was a child.

>> DOUG:  I love this.  As we get further into this conversation, we will see that little anecdote you have about lying you could swim and jumping into the pool and figuring it out.  Is a larger metaphor for how you lived your life and at least the prior conversation I had with you.  I love that.  You couldn't come up with a better mini story to kind of embody like a ‑‑ one of the major themes of your life. I love that idea too.  The fact that there are parents obviously like any parent wants to have the best for their kid and want that kid safe and taken care of.  If and certainly of any parents of a young child anything that seems like it could pose a "extra threat" to their child is a touchy thing.  You didn't really give them a chance to pin you down there.  You were just who you were as a child kind of they had to roll with the punches it sounds like.

>> BRIAN:  [nodding head] 

Yeah, exactly. 

>> DOUG:  Do you have any siblings?

>> BRIAN:  We have three brothers many if that helped a lot.  We were always getting in trouble together.  We did a lot of things that you know normal siblings would do.  My parents always expected them to include me in everything.  If they were going roller skating with friends my parents expect them to bring me along.  I was always expected to be fully included in my family.  They never treated me different.  It achieved a lot of how my brothers grew up.  They would be the first to help someone with disability they see on the street.  Being familiar with the Deaf and Blind community, they know how to assess people in a way the average hearing, sighted person wouldn't know how to help someone.  They are obviously all hearing and sighted. 

>> DOUG:  You have three brothers that are hearing and sighted and you have Usher's syndrome, you're Deaf and Blind.  What are any of the odds of any of your siblings to have Usher's syndrome?

>> BRIAN:  It's 1 in 4 chance and I happen to be the 1 in 4.

>> DOUG:  You literary hit that percentage right on the dot there, the Switzer family.

You said from a young age your parents encouraged all of you to partake in all of the activities together.  It sounds like your brothers treated you like any of their other brothers.  Did you ever find at any point growing up is that your brothers felt like more protective of you?  Or felt there was a need to be?  Or was that not really part of your dynamic with your brothers.

>> BRIAN:  They definitely would have helped me out in any way that they could.  I never felt I needed protection.  Most of my classmates treated me pretty well.  I don't think anyone ever treated me any different.  They knew I knew Sign Language.  So that was a tool I was able to use in my favor.  Because I had friends that are were interested in learning Sign Language.  It's a fascinating language that they were not familiar with obviously.  So, I never felt unsafe or anything.  I always had a good group of friends who watched out for me.

>> DOUG:  I imagine the 4 year old that is going the lie to their teacher that they can swim and jump in the deep end.  It doesn't sound like they need other people to look out for them.

>> BRIAN:  [chuckling].  Obviously.

>> DOUG:  Does your family all know how to sign.

>> BRIAN:  The majority of my family knows how to sign.  My parents and brother.  Some of my cousins.  My younger cousin learned how to sign in college.  He knows a bit now.  I went to a thing may be 5 years ago with my older brother DJ, I was really impressed he was able to sign back and forth with a person that was Deaf and it blew me away.  He never really uses it and something from when we were kids kicked in and he was able to sign away.

>> DOUG:  You talked about initially going to the Boston School for the Deaf then you transitioned to the public-school system.  What was the main reason for that transition there?

>> BRIAN:  The Boston school ended up closing so that's why we transferred to the learning center.  My parents were the one of the main advocates for opening the learning center.  To they had other locations but they ended up opening one near us for the specific   reason to move the kids from the Boston school to the learning center.  They were great advocates at the moment. Then the academics in the school that I went to weren't challenging me enough.  My parents really wanted me to attend public school so I would be challenged more academically and can compete with my peers.  I know we did really well in school.  Obviously even now I'm completing a second masters.  So I really enjoy school and it comes easily to me. So my parents just wanted to give me a little bit more of a challenge and be more integrated with my peers.

>> DOUG:  So you mentioned that like it sounded like you had like a pretty good childhood in the sense when you're mentioning like your peers treating you quite well.  But did you find any distinction between your peers in the Boston school for the deaf then when you went to public school.  Did you find any different dynamics between the other kids in your class?

>> BRIAN:  Yeah, one key difference I found it really difficult when I first transferred to public school because everyone was speaking at the same time.  When you're in a group of people that are Deaf only one person is signing at the time and everyone is focused on the one person, probably because it's so visual.  When I went to public school all the sudden there was 10 or 15 people speaking at once.  That was really challenging.  I also found it different in culture.  People who are Deaf tend to sit together a lot more than the general public.  So, the other big change over all though at the end of the day people are people.  You know, at a school for the Deaf or public school you have really intelligent people, really nice people, really kind people.  You get to know all sorts of life.

>> DOUG:  Yeah, did you find just as far as the dynamic goes, did you find that like your friends and peers in public schools started the learn when you were like in a group with them talking to like talk more one at a time or not all at the same time?  Did they make certain adjustments in that sense?

>> BRIAN:  Yeah, a lot of my peers were really good at speaking at me, making sure I read their lips.  At the time I was able to read lips.  Obviously where my vision is now, I wouldn't be able to read lips anymore.  But at the time they made sure they got my attention, tap me on the shoulder and speak directly at me.  So they adjusted in order to accommodate me.  Which was wonderful.

>> DOUG:  So, you know a really important part from I remember from our conversation before when you were at the public school at this point, you are obviously having ‑‑ you have good relationships with your peers and you're doing well at school.  But can you tell us what an intervener is and how the intervener played a role in your experience.

>> BRIAN:  At a Deaf school you have an intervener that works one‑on‑one with the deaf and Blind.  So when I transferred to the public school it was a difficulty to hear and she was hired as an interpreter.  She would sit next to the teacher and interpret into Sign Language and what the teacher was saying.  In addition to that role of accommodating for my hearing loss, she would also make sure I had accommodations in place so for instance I mentioned earlier that I couldn't read a Blackboard, so she made sure my classroom for the following year had a whiteboard in it.  It was pretty unpopular at the time.  Now I think every classroom in it has a whiteboard or smart board in there.

She would do he other things too.  She would make sure   I was able to use erasable pens in a math class rather than a pencil.  She made sure that the paper grid lines were bold and big and easier for me to see.  She made sure the lighting was appropriate for my vision loss.  She made sure that I had access to wide print.  So I took a few exams and they were usually in large print.  So it's easier for me to read and see. She did a lot of things on that nature.  It was kind of you know double duty between making sure that my hearing loss needs were met and my vision loss needs were met.

>> DOUG:  So what was the intervener's name?

>> BRIAN:  Debbie Winkler.

>> DOUG:  So it's the same intervener with you day in and day out correct?

>> BRIAN:  Yes, she was the only one, with me day in and day out.  We actually worked together from the time I was in first grade all of the way until the end of college.  We worked together on a daily basis for 15 years straight.  Which is pretty unbelievable.  I don't know very many people that work with people for that long and that intermittently.

>> DOUG:  Unbelievable.  That's interesting relationship there.  Let me get is this straight.  You have an intervener who is someone that is both helping facilitate various things that need to happen in class and sometimes advocating for certain things, like a whiteboard instead of a blackboard to make sure things are suitable for you.  And really kind of like just helping in all different accounts to help facilitate a successful educational experience for you on a day‑to‑day basis. And again, Debbie your intervener is the same intervener with you every day, every school day with you for 16 years, correct?

>> BRIAN:  Yes, in a lot of ways I saw her more than my parents.  Just being you're in school all day.  By the time you get home you might be home by yourself for a few hours.  Then your parents get home from work.  Then it's night time and you're going to bed.  In a lot of ways I saw her more than my own family.

>> DOUG:  That's really interesting.  I'm sure you form quite a bond with someone you spend that much time with.

>> BRIAN:  Yeah, definitely.  Yeah, it really is difficult to explain to some people that kind of relationship.  In English we don't really have a word for it.  She is not really a friend, not really a coworker.  It's difficult to explain what kind of relationship we had.

>> DOUG:  I love that you’re saying, thinking there's not even a word for it.  So interesting.  Maybe Brian you will be the one that comes up with a new appropriate term for that what that very unique relationship is.

>> BRIAN:  [chuckling].

>> DOUG:  Again, I'm really fascinated by this.  I don't think there's many people in their daily lives who can, again, because you said there's no word for it, I don't think there's a lot of people that have someone in their lives in that capacity.  It's someone you see in many ways more than your parents and brothers.  I grew up with a fraternal twin brother Al.  If you are watching now, shout out to Al.  Even having a twin brother that I shared a room with, perhaps I didn’t seen him as much as your intervener you spend a lot of time with.  She's with you in every class throughout the school day or every class, is that how it works?

>> BRIAN:  Yes, she would attend all of the classes with me from the beginning of school day to the end.  One of the things she really hated when I was in college I took a multivariable calculous class.  I love mathematics and she did not.  So I tortured her by take act all he have on these ridiculous classes.

>> DOUG:  I love that.  It speaks to the dynamic.  On to the one hand her job the is to facilitate.  On the other hand you spend so much time together, and she's also human that has her likes and dislikes and she was like "oh my God, these advanced math classes, what am I supposed to do here?"

[chuckling].  I can imagine I don't have the capacity for math that you do.  I would struggle as well.  Is she better at math as result of being your intervener for so many years.

>> BRIAN:  I don't think she would say that.  Mathematics, it's a lot of problem solving and having the problem in front of you.  One of the interesting things about interpreters that often times they cannot even following the conversation.  They are interpreting so fast.  A shout out to the interpreters that are interpreting this.  They are interpreting so fast they don't know exactly what they are interpreting.  Their brains have to quickly switch between one language and another.  And interpretation is not the same thing as word‑by‑word translation.  In a lot of ways you have to get good at explaining what is going on.  You have to be able to take a sentence in English and make it so it makes sense in Sign Language.  It's a really difficult job.  And then to do it at the speed someone is talking.  And that's really difficult.

>> DOUG:  That's really well put.  Maybe it's the New Yorker in me, I can sometimes get into the habit of talking quite fast.  So I definitely been more cognizant about when there's an interpreter involved to try to not be as New York in my speed in which I speak.

[chuckling].

But, Nilam who is watching, she's one of the board members for NFADB.  The National Family Association for the DeafBlind.  In this chat here she's writing:  Having a great Deaf Blind intervener who is not scared to represent and advocate for your child is a huge help for a Deaf‑Blind student and even their parents.  And Nilam has a child that is Deaf‑Blind.  And she says sometimes we have interveners that are fearing that their own job security.  Is that something you ever experienced or heard of yourself?

>> BRIAN:  Yeah, can you repeat the question.

>> DOUG:  Yeah, the second part of what she wrote:  Sometimes we have interveners that fear to represent and speak up for the child fearing their own job security.

>> BRIAN:  Definitely.  In Debbie's particular case she never felt afraid to speak up for me.  My parents knew her from ‑‑ we started the teacher at the Boston School for the Deaf.  We were familiar with her before we started working together, when she was hired on as my intervener.  So my parents never felt like she would never stand up for me me if anything happens.  But I've definitely heard of cases where interveners and interpreters in had the classroom who would decide not to stand up for the child if they are being bullied and bullied by a teacher.  And that's a really scary scenario to be in.  I heard of children who are Deaf be moved into other schools on account of that.  Because the parents no longer felt like the school had the child in mind.

And that's really depressing.  Luckily there's a lot of great, wonderful schools out there like Burton school for the Blind that always do the best thing for the child.

>> DOUG:  Yeah, again, it sounds like in all things, you can have someone who is really well suited and does a great job.  And sometimes people don't in any field.  And sounds like given at least imagining the length of time you spend with your intervener Debbie, that she was a good match.

>> BRIAN:  Yeah, definitely.

>> DOUG:  So I'm going to hold for one minute here, we are going on do a interpreter switch.

Alyssa, good to go.  Excellent.

So if you like what you're seeing hit the share button on Facebook.  If you are watching on You Tube paste the links to someone that thinks this is valuable here.  If I've learned a lot about have interveners what they are and can the relationship they have.  I guess you wouldn't say student.  The intervener and what is the other side of that?  Would you say?  Because you're ‑‑ you are not their student but they are your ‑‑ I again, I guess we are figuring out the right.  There's not really great words for such a unique relationship.

>> BRIAN:  [nodding head]

>> DOUG:  Such an interesting vain of conversation there.

>> BRIAN:  I guess student.

>> DOUG:  Yeah, I guess student, right.

So continuing on here.  So again your intervener Debbie is with you throughout college.  And you were talking some of the intense math classes.  What did you major in this college.  What was that?

>> BRIAN:  So we have a double major in economics and Philadelphia with a minor in German.  I started out as a math, biology double major and slowly transitioned towards economics and philosophy.  I had to take a few courses in German in order to fulfill my language requirement.  Continued on with it and got a minor.  My intervener Debbie recommended I learn German it's one of the easier languages to learn if you have a hearing loss because all of the letters are pronounced.  It's very easy to follow.  Although a lot of sounds are really harsh.  They have a harsh CH sound they use.  It's probably the ugliest language out there.  Nobody would deny that.  But it's really a wonderful way to meet other people and travel around and I studied abroad in Germany and loved it.  So it's been a great tool for me.

>> DOUG:  That's so interesting that I didn't know that before you said that.  That German is like very hearing loss friendly language, because it's so, everything is pronounced so acutely.  So I guess like again, it's not the prettiest language per se but one of the positives of that is it's easier to hear.

>> BRIAN:  Yes, definitely.

>> DOUG:  Interesting, it sounds like you took all of the easy majors in college, economics and can philosophy and German and math and biology.  Really coasting along there.

>> BRIAN:  Yeah, I really enjoy learning.  Obviously that's how I became a teacher.  I really enjoy learning new things and challenging my brain to learn new things.  And so I'm really fascinated.  One thing I love is languages.  Because I started off at the School for the Deaf that everything was in Sign Language then public school where everything is in English.  There's so many misconceptions between the Deaf community and the broader public.  So that really got me to thinking about how languages change our perception of other people.  And so, I really enjoy learning languages, because it's a way to connect with other people.

>> DOUG:  Yeah, you know, I think also like I'm curious about the teaching part that you just mentioned.  The being a teacher.  There's obviously been a couple of incarnations of you as a teacher.  Can we talk right after college what you were teaching?

>> BRIAN:  Definitely, right after college I got a job as a para professional then in the evening I would teach high school math.  I taught remedial math.  So getting a student up to where they should be given their grade level.  After that, I went to a different school system and taught high school math full time.  I really enjoyed its.  Unfortunately as my vision got worse and worse it got harder and harder to teach high school math.  As you can imagine a lot of students still use pencil and paper to write out problems and erase things and move numbers around.  That got really difficult to read.  It became impossible the grade students homework. I ended up leaving that job because of the challenges I faced.  Other challenges as well, just from trying to manage the classroom. So I end up leaving there.  I started at the Carol center for the Blind.  A rehab program for adults with vision loss.  They started teaching me all of the skills I really needed   things like Braille, using the long cane.  They taught me how to use a Braille display.  They taught me how you JAWed the text to speech software program. If I had known those things prior to each my jobs a high school math teacher, I could have probably saved the job and continued teaching as a Blind teacher. But because I had left I ended up transitioning to typing assistive technology.  That's what I teach now at Burton school for the Blind.  Teaching assist I have technology.  What that means is teaching a lot of the technologies that help enable people with disabilities to access the same technologies as everyone else. So for example, I mentioned JAWS, text to speech program that allows me to use the computer it reads allowed everything on the screen.  Braille display translates into Braille so you can use your fingers. Then the simpler magnification programs things that allow you to zoom in and zoom out.  There's letter contrast programs.  For example, if you open up a Microsoft Word document, you get the really bright white light, black lettering.  For a lot of people with certain visual impairments, the bright white light is too much on their eyes, it starts the hurt their eyes.  They actually prefer a black background with white or yellow letters.  It's a lots gentler on the eyes. So I teach assistive technology for the career launch program at Perkins and the assistive technology and a lot of software problems that assistive technology interact with.  As I mentioned my software we teach Google Docs, Google Sheets and so on.

>> DOUG:  To go back as a high school teacher for a moment, so you mentioned that as your vision loss increased, it posed some additional challenges and was kind of time to move to a different pace and ultimately become a teacher at Perkins.  You also mentioned some dynamics in the classroom were a little bit challenging.  Can you expand upon that a little bit.

>> BRIAN:  Yeah, definitely.  From a mobility perspective, as your vision deteriorates it becomes really hard to travel around and feel safe to travel around.  Because you trip over things.  So learning orientation mobility really helped.  As far as in the classroom, if you miss certain things, certain behaviors those things tend to escalate.  A student misbehaves slightly they notice that you didn't notice it and they start to escalate the behavior a bit.  As a classroom teacher some teachers say they have eyes in had the back of their head.  They say that because they are constantly watching the class and making sure people are a behaving and that the classroom is running smoothly.

>> DOUG:  Do you find as best as you can speak the your experience that your students a the that high school treated you any different than they would any of their other teachers?

>> BRIAN:  For the most part no.  They were wonderful students.  I taught AP calculous, AP certificate and algebra 2 class.  A lot of them were very well rounded students who did really well in school and were focused and can so I never felt like they treated me differently.

>> DOUG:  So, now back to Perkins where you are currently a teacher.  Can you tell us a little more about Perkins?  I have heard about Perkins for quite a long time.  It's definitely a well known institution.  But I didn't really know a lot about the specifics until talking with you.  Maybe you can share a little bit more about Perkins?

>> BRIAN:  Yeah, Perkins School for the Blind is the oldest school for the Blind in the U.S. 

It dates back to the 1800s.  It also has a really rich tradition in Deaf‑Blind culture.  If Perkins is known for educating the first Deaf‑Blind person in the world.  Laura Bridgman came to Perkins.  She was Deaf‑Blind, she lived in New Hampshire.  She really broke the soil for everyone else in that she proved that a Deaf‑Blind person could be educated prior to Laura Bridgman nobody thaws someone that was Deaf‑Blind could be educated.  She herself taught any Sullivan how to sign.  They were close friends.  And later on any Sullivan went on to teach Helen Keller.  If all three of them were students at one point at Perkins School for the Blind.  Any Sullivan and Helen Keller one of the most famous Deaf Blind people out there she attended Perkins Deaf school for the Blind.

>> DOUG:  That's quite a history.  Especially when you talk about the distinguishable names that come up in Deaf‑Blind history.  That's certainly a strong connection to Perkins, that's really interesting.

So, let's talk about marathons of which you have run your fair share.  Can you just talk about first off you're just like how you got started as a runner?  And how long that's been part of your life?

>> BRIAN:  Yes running has been a part of my life for a long time.  When I was younger I started off playing tee ball that was the first sports my parents got   in into.  I couldn't see the ball.  They put me way in the out field and they hoped the ball would never could come to me.  And then I couldn't find it.  I hated it.

>> DOUG:  Do you have flash backs to little league that was moderately scarring?  But keep going.

>> BRIAN:  Yeah, it was definitely challenging so luckily my parents let me quit that.  I ended up playing soccer and basketball.  It was a little easier because the ball was bigger than that regular baseball.  It was easier to follow.  Basketball became really challenging given the speed the ball traveled at it was hard to follow the ball.  And then in junior high it got too challenging.  Mainly it was too difficult to follow the ball and figure out the lines in the graph.  The contrast is not great having white or yellow lines and green grass. After that I ended up joining the cross country team.  That was wonderful.  Because when you're running you don't really have to follow a ball or anything.  Often times there are a lot of other people had in the race with you.  So you followed them.  You don't even have to follow the path or anything. I found that to be really easy.  Unfortunately, so I ran cross country through high school and kind of ran on my own through college.  Unfortunately after college my vision got to the point where I really couldn't run any more.  That was really difficult.  I used running as a stress reliever.  It is so helpful to have that dopamine kick after a run, where you're in a great mood because you pushed your body and you just ran 5 miles.  So that is a big challenge to have that kind of stress reliever in my life as I was going Blind. So I took a few years off then a friend reached out to me and asked me if I wanted to run a half marathon.  And I was like ‑‑ you know, I don't know how to run any more. And he was like well we will figure it out.  I can guide you using a piece of rope.  I was like that's a great idea.  Let's try it. We were running to support two girls with Usher's syndrome.  They wanted to good see France before going Blind.  So we were raising money for the two girls.  And I would have gone to the ends of the earth for.  I told them let's do it.  We ended up running the United Airlines half marathon and New York City.

>> DOUG:  Was that one of your first marathons?

>> BRIAN:  That was my first half marathon.  Then my friend Marco said let's do something a little bit harder, let's try to do a full marathon and see if we can do it.  I said sure. And so Perkins reached out to me and asked if I wanted to run the marathon in Alaska called the Equinox Marathon.  It's largely considered the fifth hardest marathon in the world.  Mainly the altitude climbs and the weather.  If the temperature can vary greatly.  So he ‑‑ so we decided to do it together.  The full marathon.  It was my first time doing a marathon.  I was a little crazy to do that marathon as your first one.  The ‑‑ there were a lot of challenges.  For one thing you start off going uphill.  You climb up over ester dome which is really tall and really steep   you run up it, you run down the back of it.  You circle back and run down it.  As you're ascending up, it started snowing because obviously you're at a higher altitude.  One of the things that I hadn't prepared for is the fact that I wouldn't be able to use my hearing aids because obviously with the wet weather they can damage the electronics and hearing aid. So, I end up having to take them off during the race.  So we kind of had to figure out how to communicate non‑verbally so that he could still guide me. The other challenge we really weren't prepared for is the fact that some of the trails were one person wide.  I had gotten really used to running beside him with the rope.  And the nice thing about that, you can keep the rope nice and tight and there's a lot of tension and you can kind of feel where he is.  Unfortunately when you're going one by one, and I had to be directly behind him, wed we had to make the rope longer   so that tension and tactile feedback to know where he is related to you and knowing where you're going was not really there. We also played a lot of games during the race.  So are for one thing we were joking he would tell me to lift my legs for rocks or duck under things that were not really there.  It was definitely a fun experience.

>> DOUG:  So much that was so great.  But knowing after running a half marathon it's not let's run a marathon, it's let's run the fifth hardest marathon in the world.  Which is indicative to the 4 year old that lies to the teacher that he knows how to swim and he jumps in and figures I the out. I love that.  But again, that speaks to again it's in that 4 year old that you talked about. But again, why you have been so successful in so many things, just that really innate sense of wanting to kind of jump into life and not being afraid to jump in head first and figure it out ASL you go.  You're obviously a smart person, that really helps.  But that's so well embodied in your story as a 4 year old and how you approach running. So it's really interesting to hear, are I guess I didn't even think about the fact that like someone who obviously wanted to be athletic and participate in athletics that for practical reasons running was a really great one.  Given the fact that certain challenges you described about following a ball or following the pace of something, that running was something that was practical and had a lot of practical elements and allowed you to then again a heavy degree of being able to just rely on yourself.  And then as your vision declined, finding a crafty way to be able to run along side someone with a rope.  And using that tactic and again not quite to the degree of intimacy as a intervener per se, but certainly you want to have a pretty good relationship with and feel like whoever you are running along side is fairly well matched with you right?

>> BRIAN:  [nodding head] 

Yeah, there's a will the of trust there with the guide.  Because at the end of the day their job is to make sure you're safe.  Especially when you're climbing a mountain there's jagged rocks and trees and a very dangerous place to be running.  So there's really a lot of trust in that guide.  And even in a street race you can trip over a curb.  I got guided into a poll once that was before we got to the race.  Trying to shake that off and recover and continue running required a lot of trust in that guide not to make that mistake again.

>> DOUG:  Totally, so much of sport is a mental warfare when you're really pushing yourself.  Another challenge to   put into that, in your case, is to really have this implicit trust in someone.  When that is like even by accident broken a little bit, I'm sure when you're running and you're trying to run a good pace and you're really throwing yourself into the race, you want to feel you're well‑supported and you are not about to step into a pothole or run into a poll.  So I can see that can be a challenge or extra hurdle to overcome even if that's accidentally violated at some point.  That's interesting.

We have a question from one of how viewers.  Claire asked do you use haptics?  That's useful in running.

>> BRIAN:  Can you repeat that please.

>> DOUG:  Brian, do you use haptics, especially when you're running? 

>> BRIAN:  So I don't use haptics when running.  My wife and I use Sign Language on some occasions.  When after a long day I want to take my hearing aids off we will tactile sign back is and forth.  And then we see and during our wedding ceremony we were signing back is and forth between the two of us.  I don't think anyone else realized we were communicating the whole time, through the whole ceremony.  We knew.  And it added to the experience of a web wedding ceremony to be able to communicate back and forth while the ceremony was going on.

My guide and I use often times if it's raining or snowing we use kind of tactile signing not so formal.  We use a lot of tactile signals to make sure we are together and we are going in the right direction.

>> DOUG:  I love that tactile Sign Language is already a really intimate form of communication obviously any communication that relies on touch is a very intimate form of communication.  But to have that intimacy underlined by the fact it's happening at a wedding ceremony between two people about to get married is like ‑‑ there's something really poignant about that to me.  It's already so intimate and then to have it happen in such an intimate moment is like a really beautiful, beautiful way to be able to communicate.  A lot of times people I feel like are maybe sighted and hearing don't think about other forms of communication, and maybe think of it may be even subconsciously may have a feeling of having it be a lesser form of communication.  Something someone has to resort to because they cannot do XY and Z.  Sometimes miss the beautiful benefits of it being distinctly it's on own form of communication and the beauty it provides that other forms of communication can't.  You highlighted one specific instance where it's beautifully it's own form of communication that you can't simulate in other forms of communication.

>> BRIAN:  Yes, it made the ceremony a lot more intimate.  We were able to chat back and forth and talk about how we were feeling about each other in this the moment.

It made the ceremony that much better.

>> DOUG:  I love that.  For the last portion of our conversation, I'd love to move into kind of tying some of the stuff we were talking about with ADA 30.  The 30th anniversary of the Americans with Disability Act.  The 30th anniversary itself is in 2 days from now, on the 26th.  Before we get to that, I want to remind people watching again we have another live stream of The Feeling Through Experience this up coming Monday at 1:00 p.m.  Eastern time, 10:00 p.m. Pacific time.  Some asked in the chat, if you are already signed up in the mailing list you are good to go and we will send how information.  If you have not go to feelingthrough.com/register.  We will send you info out through there.  I encourage you to partake if you have not before.  It's a special unique experience.  If you have, you know each one is different and we would love to have you back.  Please also spread the word about that.  You can share feelingthrough.com/register with people, you can share what we’ve been posting on social media about it.  And Brian will be joining us again.  And I'm sure you would love to hear from him some more is and hear from him at 1:00 p.m. as well. So Brian, again, you know can you talk to the importance of the ADA and how it's personally served your journey?

>> BRIAN:  Definitely, I was born in the same month and year that the ADA was signed into law.  The ADA really protected my rights as a person with disabilities to be able to do things.  So for instance, when I was in school, nobody could say that wasn't allowed in the classroom with my peers.  Obviously academically I would fit to be there.  So it allowed me to learn and grow along side my peers.  And the ADA protects my ability to work.  To have accommodations on the job.  As well as my ‑‑ I have a guide dog that I travel around with.  And the ADA said my guide dog is allowed to go into any public place that I'm allowed to go.  So the two of us we are really thankful for the ADA and all that it's done.  George W bush that ultimately signed the ADA into law, he himself actually was the beneficiary of a service dog.  And you know he wouldn't have been able to have that service dog if it weren't for the ADA protecting his rights.

>> DOUG:  When is your birthday by the way?

>> BRIAN:  July 1990.

>> DOUG:  What did I in July.

>> BRIAN:  July 8th.

>> DOUG:  Well happy belated.  We are celebrating ADA 30 and we are also celebrating Brian 30.

So it's double 30 celebration there.

[chuckling].

So that's so well put, in having the opportunity to speak with you today and getting to talk through a lot if on your life as someone who again is that four year old just jumping into the pool and you brought that kind of spirit to many aspects of your life.  Someone who is obviously an extremely talented person and not afraid to throw yourself into life.  You are well suited to be successful in so many environments.  But it sounds like the provisions ADA laid out just allowed for a better landscape for you to use all your talents in.  Is that a fair way to put it?  Had.

>> BRIAN:  Definitely, the ADA allowed me to be fully included in school, fully included in work, to be around my peers.  And ultimately what that has allowed me to do is live a life that I couldn't imagine pre‑ADA.

Currently, I own my own house.  I'm married, I take care of my guide dog.  And I have this happy little life that I couldn't imagine without the ADA.

>> DOUG:  I love that.  That's certainly a great way to be celebrating the 30th anniversary.

So yeah, with the last minute or so, here, I wonder is there anything you would like to say today?

>> BRIAN:  Definitely, I'm still currently running and training.  And we ‑‑ I am training for a run on Cape Cod coming up in September.  I'm hoping to do a mini triathlon sometime soon.  I talked to my guides, they are all on board.

So I'm excited for what the future brings.

>> DOUG:  Would that be your first triathlon?

>> BRIAN:  Yeah, it will be my first triathlon.  The most difficult westbound the swimming portion because I can't wear my hearing aid.  I'm not 100% sure how that feet will go.  But we always find a way.  The secret sauce to life I found is figuring out how to make things work for you.  One of the things my intervener taught me when I was young, you could do anything, you just have to figure out how to make it work for you.

>> DOUG:  Those are perfect are words the wrap up this episode with.  I'd say we will have to have you back sooner but I'll have the pleasure of speaking to you Monday.  You certainly have to let me know when that triathlon happens I want to talk to you again after that.  I'm going to want a full update on how that goes, that sounds really exciting.

Yeah, Brian thank you again so much for joining me today.  You're really a awesome guy like all around and so many interesting things to share.  I really appreciate you coming on here today.

>> BRIAN:  Thank you.

>> DOUG:  By extension, thank you to Perkins who you are also representing today for joining us.  Certainly thank you as all to Helen Keller Services our partner in this.  And to our interpreters and our captioner.  Thank you to all of you tuning in.  Again, to sound like a broken are record but it's an important part of the record to play again.  Tune in Monday, 10:00 am Pacific time and 1:00 pm Eastern time.  It's a free event we have over 3,000 people join us on the last live streams from 35+ states and 10+ countries around the world.  All of which are extremely enthused.  It's so great to have you all join us because the chat box lights up with the questions and things you have.  Go to feelingtrhough.com/register.  And you can find various things on social media.  And share with anyone that might find it valuable.  It's free for everyone and we want as many team to join as possible.  Thank you every, have a great weekend and see you all on Monday!  Bye.

[all waving] 

Feeling Through Live • Episode 14: ADA30 - How Far We've Come & Where We Need to Go

 

[Doug]: Welcome to episode 14 of Feeling Through Live. Today we're talking with Ryan Odland and the primary topic of conversation is going to be ADA 30. And, you know, how far we've come and where we still need to go. The reason we're spending a lot of time talking about ADA 30 this month, because ADA 30 stands for the 30th anniversary of the Americans with Disabilities Act, which, turns 30 on, I believe it's July 25th, um, is the 30th anniversary of that act. And we'll be talking about more about what it is, why it's important, um, how it functions, um, the improvements that still need to be made. Um, and, we're very fortunate to be joined by Ryan Odland from the Helen Keller National Center, uh, who knows a ton about all this. And certainly has a lot to say, so hello, Ryan, thank you for joining us again today.  

[Ryan]: Hello, this is Ryan. I'm happy to join and, uh, to talk about the ADA this afternoon.  

[Doug]: Well, Ryan, you know, one of the things that's really cool here. We're, we're on episode 14 of Feeling Through Live, getting this started, this was born out of really needing to find a way to continue to connect, during COVID. And what's really cool is Ryan, you are our very first guest on episode one. So it's, we'd said back then that we needed to have you back. So it's so cool to have you back here on episode 14.  

[Ryan]: Yes.  

[Doug]: So, you know, I guess before there's plenty to talk about as far as ADA is concerned, but just to kind of talk about something else first, you know, the very first topic of conversation, something that's obviously still very relevant is COVID, coronavirus something that, certainly has been ramping up lately and being that the very first episode was, was about how COVID was affecting the deaf blind community, I kind of want to just check in with you a number of weeks later for an update on that. Um, if you have anything kind of new to share on that, in that category, since we first spoke, you know, about 14 weeks ago.  

[Ryan]: Sure. This is Ryan speaking. There's actually been a lot of changes in these 14 weeks, you know, two and a half months really. Um, you know, we're learning as we go and trying to figure out the best way to keep ourselves safe and, and manage this situation with the pandemic. Um, and for deaf blind individuals really we've been trying to sort of just get our basic needs met and try and find the best approach to that, you know, just are basically needs for a living. And I'm finding even that love and connection and communication with people, um, how, how to shop, um, how to continue working in this new world that we're in and to really just, you know, make sure that we stay healthy and there, it does present a lot of challenges. Um, but we are, you know, keeping busy, finding different resources that are available for accessibility. Um, finding different, um, individuals are able to assist us in our homes and also managing, uh, profitable businesses. Um, just getting every day needs met, like grocery shopping or, you know, continuing to, live our lives and how we approach that, how we do that in the day to day, um, is very different than what it looked like before.  

[Doug]: And, you know, when we first spoke about it, a number of weeks ago, COVID was a lot newer then. We were just starting to lock things down. Um, there were still a lot, there were obviously, there's still a lot of questions, but there were even more questions then as to how this was going to play out how much it was going to spread. Um, certainly we're still learning that, but, um, but we're a little farther along now. And I know, you know, obviously in the deaf blind community, specifically a community that often relies largely on touch. Um, there were a lot of concerns specifically around not being able to get the essential services, like a service support provider or a tactile interpreter that are really needed for a lot of the community to function on a regular basis. Has how has that evolved since we first spoke 14 weeks ago, has, has had some of those opened up again in like, you know, safest ways they can do it. Are they still largely not, um, functioning? What changes there have been specifically around the services for the deaf blind community since we first spoke about coven 14 weeks ago?  

[Ryan]: Well, really, to be honest with you, Doug, the situation is pretty much the same as it was those 14 weeks ago. Um, you know, there are some one-to-one services that have been implemented now. Um, but there are many services that, you know, are still doing are happening remotely. And, you know, the reason being that the States are still sort of in this process of reopening and some of the vendors and businesses are not yet caught up to speed, you know, as far as their safety plans, they're not necessarily in place with a definitive COVID safety plan. So, you know, it anymore, not everyone agrees on, you know, the wearing of masks and using those that PPE, that personal protective equipment, um, the support services, or, you know, that's still a challenge. And it's really all, you know, just basically because of this health concern, um, support service support providers, SSPs are not comfortable, uh, because of COVID and interpreters are not comfortable to meet one-to-one with deaf blind individuals. So it's something that, you know, we are hopeful and motivated that we'll continue to, to change, but not everyone's on the same page. So to speak at this point, there are a lot of deaf blind individuals who are in isolation and that's a struggle. That's a real struggle right now, uh, due to COVID.  

[Doug]: And something I would say is, you know, if there's anyone watching this broadcast, who, who knows anyone who feels particularly isolated in the deaf blind community right now, and maybe doesn't know about Feeling Through, please direct them to that. One of the, one of the primary things we're trying to do during this time is to help keep that community going, and, and, and provide some opportunity for people to still connect albeit, virtually. And certainly that's one of the many reasons we make this as accessible as possible, so that so that everyone can join in. And I also want to note that, Allison Burrows from HKNC has just, um, corrected me here. The ADA was signed on July 26, not 25th. So thank you, Allison, for catching that. And she also notes that two HKNC staff members represented the center at the signing on the South lawn of the white house, which is a very cool piece of history there for Helen Keller National Center. So, so a nice, extra shout out to HKNC today for being a part of that monumental, uh, day there on July 26th, 1990. So thank you Allison for that. Um, so just one more primary question that I have Ryan, um, about COVID before we move into ADA 30 is like you just mentioned, unfortunately, not a ton has changed, um, as far as what's able to be provided how to kind of better things right now. Do you know of, or have any thoughts around any plans for how that can be bettered? Is there a solution or are we still kind of in a waiting game seeing how this all plays out?  

[Ryan]: No, I think there are a lot of different approaches, um, you know, for individuals who are deaf blind and, and services that could change, but maybe it's focusing more on family or people in the home, uh, for that support myself. You know, I am an advocacy trainer and I use tactile sign language for communication, uh, for an individual who lives with a roommate who may be willing to facilitate that communication via tactile sign language. Um, then it is possible for me to work with those individuals remotely, if they have that support in their homes and they can continue to learn. Um, but it's definitely, you know, it's a collaborative effort that we all need to really work on together and utilize the resources that we have. Um, but really I think he is the having that, um, knowhow and, uh, ability to advocate for yourself because in a situation like we're under right now with a pandemic, you know, we really have to get creatives and those individuals who are more comfortable with advocacy, you know, maybe it would be able to, um, facilitate that a little better for themselves. So, but we are, you know, developing a plan of service. Um, that's another approach, but really, I think he is just figuring out how to support each other because this is just such a huge impact on everybody. And it changes day to day, week to week. And our perspectives are, you know, understanding how an individual who is deaf blind and what their perspective might be and what their needs might be is important.  

[Doug]: You know, Ryan, you mentioned, uh, a very important topic to today's discussion about ADA 30, which is people advocating for themselves, which is certainly a very important aspect of ADA, of the ADA, which we'll get into shortly. Um, and certainly something that we've has proven to be more and more important in what's happening right now in the world. Um, so as we shift into ADA 30 now, um, just for all of you watching, if you're watching on Facebook, please hit the share button, it allows more people to join us, learn about ADA, ADA 30, why it's important, what it is. Um, if you're watching on YouTube, please feel free to share that link with anyone you think might want to join us. We still got plenty to talk about today, plenty of time for people to be joining in. So, uh, please, please do so. So moving on here, Ryan, you know, I think it's still, let's just start simply with, um, you know, there are obviously a lot of people on who, who are familiar with the ADA, but I'm sure there's some people joining us today who aren't. So why don't we just start off with just, um, if you could just explain, you know, what the ADA is?  

[Ryan]: Sure. The ADA was passed in 1990 and it is the Americans with Disabilities Act. And the intention of the ADA was really to provide equal rights and equal access to services. And really it's been rooted in a hundred years of many different issues and problems that have arisen over time, but it was formally written into law in 1990. So if you are interested in the history, um, you can look that up, but I think right now we're going to focus a little bit more on the law itself. And there are five different areas that it covers the first being employment, which was a huge part of the law actually. And it protects, uh, individuals who, um, are capable of worthy working, um, with the emphasis on, um, limiting, uh, discrimination, especially during the interview process, if an individual is capable and meets the qualifications for a particular job as an applicant, um, they maybe if they were to use braille, for example, um, it really would focus on the process of the inter uh, interview, which possibly could, uh, add an interpreter as an accommodation, which would be, um, upheld by the ADA. Other individuals may need to incorporate a listing device such as an FM system to be able to, um, go on through that interview and the ADA, um, really institutes reasonable, reasonable accommodations for people in the workplace, as far as accessibility and making sure that they have the exact accommodations that they need set up, so that they are able to perform their job duties. So it's not a mandated requirement. That is one thing I want to make clear. It's just that it's the responsibility of the hiring entity to be aware of and to make those reasonable accommodations for those individuals who need them. So that is, that is the first area.  

[Doug]: Ryan, can I, can I just hold for one second there before we move? Because just a question about that first area, because you touched on something that I think is really important. And I know I just learned this recently and I just want to talk about it a little bit more, but you said it's not, it's not like a requirement, but that it's also like making reasonable adjustments. Can you talk a little bit more about what you mean by that and how that functions? Because I think for me prior to learning about this this month, I assume that there were like very concrete guidelines that people had to adhere to and that there was maybe some authority that was enforcing these and now I've learned that it doesn't quite function like that. So can you, can you explain that a little bit more? Cause I think it's really interesting.  

[Ryan]: Sure. No problem. Let me expand on that a little bit. And it is actually reasonable accommodations. That's the formal language that's used within the law. And what that really means is it's focusing how to, um, really meet individuals needs in order for them to perform their job duties. So it's really accommodating that individual within the workplace, in order for them to be able to do their daily job functions. It is not something that is required if it does not pertain to the job duties, if you want to add that additional support, that would really be up to the employer, but in order to meet the responsibilities for the job and the position that they were hired for, that's really what it, what it means. And that's really, uh, an important piece of the law. The second part focuses on state and local governments and pro program services because prior to the ADA, those accommodations were not required to be provided a communication access for programs wasn't necessarily met and those accessibility needs were not necessarily met. So there are other, um, accessibility considerations other than just communication, uh, as it pertains to program services. So for an example, an architect who's designing a building, uh, they have universal design and they all follow that standard. So for example, architects, uh, they would have to include a ramp curves, a certain distance requirements, sidewalks. There are a lot of different examples of what needs to be included in that universal design and stamp building standards that are required as far as accommodations. And that goes for all this construction, public accommodations would be for example, in a restaurant or a hairstylist, a grocery store, uh, different areas like that.  

[Ryan]: And those also require accessibility. So for example, um, if you were in a store like Walgreen's a pharmacy, um, the labeling needs to be clear and descriptive, that would just be one example. Another might be in a restaurant, a menu and accommodation to a menu would be that it would include braille or that that menu would be available at least, um, in an airport. Um, the safety procedures, uh, would need to be available readily available, um, in these different ways, just so that they would have that access public transportation, for example, uh, buses, subways, trains, those all need to be fully accessible for individuals with different disabilities and how that might pertain to something like a bus or a train. Uh, for example, driver announcements, typically they're spoken and spoken English, uh, arrivals and destinations. So an accommodation would be having that, um, that captioning up above and signage that's, you know, visible to other passengers who might not be able to access that auditorily. Any information on schedules would need to be readily available in different modes as well, like on the internet, for example. So in the 1990s, deaf individuals used TT wise teletype writers for communications. And that was in lieu of using a phone for vocal calls. But as that use sort of diminished over time, because of course the ADA was established and there was, uh, you know, that requirement for accessibility and communications, various services have added other accommodations for the deaf and deaf blind and their telecommunications. And that's really guided, um, via the law. And that's really been the focus. Yeah. So the ADA is a little, possibly a little outdated, but it is still valid and there are other additional legislations to support as well. Um, so in 2008 there was the addition of additional accommodations, which meant because of the law in 1990. And it was a little vague. It wasn't completely clear. And there had been various, um, court cases and legal battles going back and forth, um, trying to really figure out exactly what the language meant. Congress did pass in 2008 and amendment and as it pertains to language. So since that time, uh, we've been able to preserve the ADA and really build upon it.  

[Doug]: So that's a great place to just hold for one moment. We're going to do an interpreter switch. All right. We're all set. Great. So continuing, um, so Ryan, you know, I think it's a good time to go to a couple questions that we have from viewers. Bethany Davis asks is having the digital displays on buses and trains enough for deaf blind people. Is there a better way for public transportation to communicate destinations and routes to deaf blind people?  

[Ryan]: This is Ryan signing. Wow. What a fantastic question. And to be honest, the answer is both. Yes and no. For some people, some individuals they can access that depends on what their vision is. There may be some situations where it does and they are able to access it, access it, but some not, there are some tools that are out there we have that are being monetized and we're coming up with new ideas, but they're not quite perfect. So when we encounter an issue and when a deaf blind person encounters that sort of issue on a bus or a train transit system, you know, the transit system sends out those alerts via the phone text. That is one way they can get information. So that resolves that barrier that they might encounter with display by getting those texts, but could also be delayed. So let's say you need some specific information for an accommodation, but you're on the bus, let's say, or you're physically on the train. How do deaf blind people know that they need to get off of a specific stuff that they'd like to get off that, and that requires more communication. We need to still develop that telecommunication to be able to communicate with the driver, for the driver to inform the deaf blind person, the rider, when to get off currently they use communication cards, specifically communication cards, which has a piece of paper that is laminated that the person may write themselves, or they might have a communication book, or even a note pad we'll use that to communicate with the driver. So the driver can inform them when it's their stuff, but that would put a lot of responsibility on the driver. So the ADA does support that the driver must inform the deaf blind person to be able to assist them so they can get to their destination where they need to go, but it requires more training and more collaboration, um, you know, with companies and with businesses to figure out how to develop the technology, to really improve the access.  

[Doug]: Yeah. And, you know, Ryan, that brings up a really another important point that we kind of mentioned already, but haven't really opened up, but like the ways in which technology play into this on the one hand, um, technologies and the advancement of technology can provide new elements of accessibility that are really exciting and really valuable. On the other hand, I kind of what you were mentioning before that the ADA kind of needs to constantly be updated to, to meet new technologies and continue to address those. Um, can you talk a little bit more about, the interplay of technology and the ADA?  

[Ryan]: This is Ryan. Wow. Technology has a huge impact on our lives as compared to 30 years ago. Wow. You know, computers were just in their baby stages. 30 years ago, internet was in its infancy. People depend on TV for information. Now you can just swipe your device, your iPad, or your tablet or whatever device, your phone even, and just get all the information at the Palm of your hands. People use braille displays, you know, before they were these huge ginormous things. Now they are, you know, they weren't rather than the past, they would have almost like a typewriter, right. And you had this a typewriter where you had to put the paper and I come across, but now there are these sleep little devices that you can carry. It are portable. So there's been a lot of change and that has impacted the lives of deaf blind people dramatically. And there's a lot of pros to that. There's an increase in accessibility. There's an increased information, different kinds of information. In general, our world has more access to information than in the ass and more resources for that. At the same time as the ADA is antiquated, the language doesn't quite fit modern needs and the modern uses of information. And the results of that is we've had to set up new legislation, new amendments to further uphold ADA, and that's going to happen again as modern times change and technology changes our needs, our perspectives, how we get information, communication is going to change, and we will need legislation to more legislation to continue to support the ADA.  

[Doug]: You know, to just talk about the way that advocacy and accessibility meet when we're talking about in terms of Feeling Through specifically, you know, for those of you who are watching this live stream right now on Facebook, you'll see that there are live captions. Um, for those of you who are watching on YouTube, there are not live captions. And just to speak about that and where advocacy plays into this, Facebook, um, particularly during the COVID was getting a lot of pressure around being more accessible and making it more accessible. And even in the time that we've been doing these broadcasts, um, they've started having very, very accurate, I will applaud them for this very accurate live captioning that they do automatically, that they provide, um, as a, you know, free service for any public page that's going live. And certainly it helps us greatly providing accessibility. We were working with a live capture each episode prior to that, and it was challenging to do that from a cost perspective. Every time we still, that captioning service is great. And we still work with them a lot during our Feeling Through Experience live streams. But in order to have the, that, you know, a lot of people pressured Facebook to have to provide those live captions on these live videos to make it more accessible. And you know, YouTube, and I'm calling YouTube out here. I don't know if we have a large enough following to do anything about this yet, but YouTube has the capability of doing that, but they're rolling it out a lot slower than Facebook. They, they're only providing it to channels that have 10,000 subscribers or more. We're not quite there yet, but reminder, if you haven't subscribed to our YouTube channel, please do, it'll help us get there quicker. But they're only making it available to pages with 10,000 or more subscribers. And even still they're rolling it out slowly. So that's something certainly that, um, you know, just from a very micro, like lens of looking through Feeling Through eyes here, you know, that's something that certainly bothers me and I've reached out to YouTube about that. Um, didn't hear anything back, but that's something that I'm hoping changes. It feels like such an easy thing to fix, um, in a world where that's such a basic technology that we have something that Facebook is demonstrating very clearly and something that certainly Google, Google and YouTube have the capability of doing, you know, it's obviously easy for me to say, I'm not working on the tech side of those companies, but on the other hand, it's very clear that that's something they could be providing. So I hope that's something that changes soon. You know, that's a place where I'm trying to advocate at least to some degree. Haven't made enough noise yet to enact something. But an example, Ryan, to what you were talking about, about it being important for people to speak up because it really takes that advocacy and that pressure from individuals to create these changes. I know very well because they made a public address, Facebook, that it was because so many people spoke up that they started adding some more accessibility features. So, very much to your point, Ryan.  

[Ryan]: This is Ryan. Captioning is one of the largest areas that people that are definitely needed. So for instance, deaf blind people can have the ability to customize captioning is also important. So being able to customize the color, the background, the font color, enlarge the print, so on and so forth, make it bold that would allow deaf blind people to access the cap sheet easier. But most places do not provide that customization in TV. It's becoming more mainstream, there's more options available, but not yet on the internet. That is a challenge and not only Facebook, but in the workplace people encounter when they're doing telework, these challenges. So individuals that are working from home, people that are working virtually joining cop meetings, virtually these are considerations that need to be made and how to make these modifications and accommodations for people that need captioning and to improve accessibility, you know, modifying the background, changing the lighting so on and so forth. The someone's internet speed, all impacts someone's ability to do telework, you know, locally by speed is not that great. It is a challenge for me and that's a challenge to accessibility. So those are issues we're facing today. I have seen improvements, but improvements also take time. We need to continue to advocate once we encounter these issues.  

[Doug]: You know, Ryan, I definitely hear you about that internet connectivity. Certainly that's something that's vital to these live streams. And, I have had more than my fair share of phone calls and technician visits since we've been doing these live streams to make sure that they are as clear as possible. And fortunately it's worked, but again, a great example. And actually just to speak to that about, this is a good little micro example, that again, something that I've learned about Spectrum, who is my service for internet provider, who I've spoken with about 40 times on the phone over the last couple months, and also had several technicians come out. And I think this is so related to what we're talking about as far as advocacy and how ADA, the ADA functions were. The last technician that came out to me said the whole way...So when they, when the internet got overloaded at the beginning of, um, uh, quarantine and a lot of areas that weren't used to having this, that amount of traffic were getting overloaded, they put down a lot of new lines, but the only way to know if there's glitches in the lines is if people file complaints, otherwise they're not able to pinpoint where the glitches are. So the whole system is actually reliant on people speaking up and saying when they have a problem, otherwise they don't know which part of the line to address, which is I think, um, thematically is exactly related to what we're talking about. As far as the system of enforcing the ADA and accessibility does not work if people don't speak up. It does not work if someone doesn't go to a business and say, Hey, this is how you are not being compliant to the ADA. You need to adhere to that. And then still doesn't work if that business goes like, we don't care. And that person doesn't follow through on that. So it is, it's so important. And it's something that certainly, you know, can't, um, talk about this right now without mentioning black lives matter. Um, certainly black lives matter and that movement has gained so much power because how many individual people are speaking up and doing something to create this collective movement. So that's certainly something that resonates across the board right now. Um, I'm going to go to another question here, and again, a reminder to all of you watching, you still have a good, a good amount of time left in this episode. If you have any, if you're sitting there with any questions at all, please feel free to type those in the chat box and we'll get to them. Um, this question comes from Christopher Lawrence. Hello, Christopher, thank you for joining us. Um, and he's asks, he says, I assume that mask wearing has made it difficult for the deaf community to read lips and understand facial expressions. When speaking to mask to people, can you speak to this and has it made your personal or your community's life more challenging?  

[Ryan]: This is Ryan speaking. Considering the ADA, you know, with this emphasis on is interpreting as an accommodation or effective communication, mask squaring has made it much more difficult because it the face. It's a barrier to communication and social distancing. And again, that social distancing requires six feet of separation that has also made it harder for deaf blind people to get the information they need to get that access to services. Many deaf people rely on touch for access, and you can't use touch anymore because of social distancing, mask wearing really limits access in getting the information you need. So it limits restricts the face. What sort of, um, facial expressions are happening on the face are important to sign language. And without that access there's miscommunication and misunderstanding, being able to use haptics via touch to get that information either on your shoulder, on your back or whatever, that visual information of what's happening around you, including environmental information really helps. You know, and part of that is facial expressions, but now that's even less, that information is not as out there because deaf blind people have to use social distancing. So we have to teach individuals out there, how to use the support we need such as haptics for communication, so on and so forth, but it is restricted now wearing gloves as a source, as a way of protection is another challenge. Interpreters and service providers art at is not willing to support because of fear. And the fear is around the coronavirus. It's limiting the, our deaf blind people's ability to get the services and for the people providing the services too. So it's really become very sticky where the ADA is here because there's a law that requires the services to be provided. But at the same time, there's this health, health restrictions and considerations. So where do those two align with each other? You know, there, where is the common ground in the middle where it's okay to do something, given both the law and the current form of buyer's situation. So it's tough. It's murky waters.  

[Doug]: I'm going to go to another question here from Judith almond. She asks Ryan, can you talk about water, more recent, big victories for the ADA?  

[Ryan]: And this is Ryan. There several really there's many, but I'll give you a few examples. I will mention to you, the first are various apps and programs that you would use maybe on your phone to order food. Let's say you want to order Domino's pizza, or perhaps you might even want to use Instacart for delivery food service. Those are two apps that previously were not accessible and via complaints and back and forth, it was resolved. Media reports that they had to redesign their programs to be more accessible with braille displays. So that's one pro that's one positive thing, outcome for deaf blind people is now we can rely on getting food through our, you know, apps to deliver to our home. Just like everybody else does. We are healthy just like everybody else. So another example of the ADA law is that it has reduced the amount of discrimination in employment services. More and more people can gain employment. And that's good. We are still behind the times. There's still a high percentage of hypersensitive unemployment rates for people with disabilities, but the numbers have gotten better. We need to consider how to improve, improve the employment environment for people with disabilities. And especially for deaf blind people, how can they get a job and successfully do that job? Like making it more accessible in the past. That's why people were considered unemployable that can't work. They can't hold a job. We should just stay home, take home with their family that will take care of them. Now, however, with the law and the laws protection of their rights, it is commonplace. Now that deaf blind people can work, they might need some sort of advocacy or some sort of support. And the law provides that support or does whoever still need to be in education, conversation and dialogue identifies problems and solutions because, you know, it comes down to money. A lot of times some resources can be afforded some cannot, but it's really, you want to have people supporting and advocating for each other rather than let's say bloody heads. So really focusing on advocacy to find the solutions to satisfy everyone in a given situation to make sure everyone's needs are met, is important.  

[Doug]: Very well put, Ryan. And, you know, with the, um, the final about, you know, nine or so minutes we have here, something that I think might be interesting to touch on if you'd like to share Ryan, I know that, you know, when we were speaking earlier this week, you, you had a personal story about, um, I believe, but when you were back in grad school, that was kind of like an anecdote around, um, this, this notion of like advocating for and pushing on a topic to, to effect change. Is that something you'd like to share?  

[Ryan]: This is Ryan. Sure. One example how times have changed is in education today in education. There's an extra emphasis on internships and practicum and using internships and practicum to really get your hands in there, really to get that hands on experience. And now today with more services provided through vocational rehab, there's more people out there in the workforce, and there is a lot of debate and stuff, but there's a lot of situations where that hands on experiences and for students who want to be interns there's issues that do come up such as issues for transportation out to get from point a to point B in a given area. In my local area to get to where I need to work. There was no reasonable accommodation because at that time it was just going to take two, three, four hours just for me to get to this site that I needed to be at. And there was another site that was a little bit better. Um, there was some back and forth. There was some issues that came about during this, uh, during my internship also there's issues with accessibility in the classroom. So when I was done with my descriptions that I had to complete my duties, I had to either my internship for graduate school, I then needed to teach. And there was a very large struggle around that because I didn't the reasonable accommodations in place. And so some of those accommodations were around communications. So there were a lot of frustrations that came about a lot of issues because the program didn't really have the options I needed more made the modifications. So I wanted to be able to do one on one teaching as opposed to classroom too. And it was very frustrating. You know, people are like, Oh, you know, all this frustration, all these headaches, all of that. And that's a modification is to make it accessible. There needs to be guidelines for the school program or rather the educational program that needs to consider accessibility and what that looks like on an individual basis, rather than just saying, everyone has to follow a walls, a through Z coming up with these guidelines. And so that for me, was extremely frustrated and caused a lot of, yes, just these modifications, just these changes that need to happen, can improve everyone's experience. And luckily I had the skills and knowledge to be able to advocate, you know, I wasn't a straight a student. I wasn't necessarily the best student in the class, but I had to speak up and get the internship I needed. And I, you know, I don't want to look foolish during this internship. So I needed to speak up. And I did that through advocating through discussions to figure out what would work. And if we couldn't come up with a social, the first time we go out to plan B as well as I would go up a chain of command. And, you know, I went to the civil rights office even as far up to try and resolve these issues. And there's pros and cons to that, you know, in making resolution to these issues. But the ADA protects this type of work and it's applicable in these types of challenges with barriers. So I had to go back to the program and really work with them even further to get what I needed, to be able to finish my requirements for my graduate degree. And it was a combination really of both the ADA and me advocating that really helped me to get through this challenging time. It's a, it's really a two way street. It wasn't just the ADA alone. It was both the ADA and myself advocating for the change that I needed in my book.  

[Doug]: So we have, um, one more question here and from Nilam. Hello. Thank you for joining us again. She's from the NFADB, the national federation...national family association for the deaf blind. Um, you can check them out. They're a great organization. Um, and she asks, is there any research on income disparity between deaf, the deaf blind population and the general population, um, and within the deaf blind population as well?  

[Ryan]: I just to clarify the question is about, um, the disparity in income, correct. So I just want to clarify the question. This is mine and considering the accessibility issues and the barriers for people that are deaf blind, as well as maintaining their independence, you know, how to become successful at work, using technology and various tools and knowledge and knowledge of the ADA deaf blind community and deaf blind individuals might feel that others out there don't understand what their needs are. They may feel more limited when in fact, mentally they're not limited in capabilities, but others might perceive them to be that way. So they need to advocate and educate and speak up expressing their thoughts and their concerns, explain what they can do compared to the past where there was focusing on limitation. Now we're focused more on the individual strengths and by focusing on the individual strengths, that changed our perspective and it changes other people's perspective on those individuals with disabilities is there's a, you know, the cultural competency and fitting with those around them. So it's very important to learn advocacy because that really helps individuals in the community and working with other people to identify solutions. You know, the, the law is powerful, but it also is about us empowering ourselves and working to identify the solutions and coming up to figure out how to change these barriers and make it ultimately a positive situation. So that's really the big picture. Deaf blind people really need to learn about that. And the deaf blind community knows about that, but needs to inform other people who might, and that way we can all work together to make change. And that's a really important consideration.  

[Doug]: Well, thank you for that, Ryan, and thank you for all of you joining us today. Um, we will be back next week, same time, same place. Um, and again, just a couple reminders. Um, if you are watching on Facebook, uh, please make sure you're liking our Facebook page and also subscribing to our YouTube page and vice versa for our YouTube subscribers, please. Also, in addition to subscribing to our channel, please like our Facebook page and in our other or other social medias that you might use more our Twitter or Instagram, or @feelingthrough on all the things or youtube.com/feelingthrough. Um, and it's really a great way to stay in touch with all of the screening announcements. We have new episodes and a lot of other really exciting stuff we're going to be talking about soon. And in fact, um, and even better way to stay up to date on everything is if you go to feelingthrough.com and you sign up for our mailing list. We actually just announced our next, uh, the next chance to see The Feeling Through Experience live stream, um, which will be on Tuesday as part of the Indy Shorts Film Festival. We'll be doing the whole Feeling Through Experience there. Um, so you can find out more information by following our social media and signing up for our mailing list. Um, and we have a lot of other really exciting announcements that we'll be making soon. Um, and again, if you enjoy this and you, you know, friends or family or colleagues that you think might find this interesting or benefit from it, please do share it with other people as well. And lastly, in celebration of ADA 30, we have some really cool, special ADA, 30 Feeling Through gear in our store at feelingthrough.com/store. So check that out. We also have a bunch of other stuff in there that's really cool, some really great designs. And, as always a portion of the proceeds goes directly to Helen Keller Services and the rest helps fund future Feeling Through Experiences and endeavors. So thank you all. I hope you have a wonderful weekend and we will see you next week. Bye everyone. 

Feeling Through Live • Episode 13: From Meeting to Exceeding: Raising the Bar on Accessibility

 [Doug]: Welcome to episode 13 of Feeling Through Live. We're joined today by Walei Sabry, who is joining us from the New York. He's works for the New York city Mayor's Office for People with Disabilities, and he'll fill you in on everything that he does. But first off, before we start with anything, Walei, with your great, suggestion here, I'd love to start off with a description. Can you, can you describe yourselves for those watching?  

[Walei]: Absolutely. Thank you for having me, Doug, and I'm happy to be here. Um, and an image description is just something that we do, uh, we're doing more of in the disability community. And I encourage folks to do that, whether it's on social media or if you're in a conference meeting or virtual meeting, or if you're on video. So, uh, I am a middle Eastern man in my mid thirties. I'm actually about to turn 35 next week. I have, uh, olive skin, uh, brown eyes, and I'm currently rocking a, um, pandemic hair. Uh, I haven't had a haircut in a while. I have long dark curly hair, which I've sort of, uh, flattened by wearing a hat. Uh, so I got a little bit of hat hair today, uh, and I'm wearing a buttoned down long sleeve shirt that is, um, uh, light blue, gray, and white, uh, checkers. And behind me, you could see my, uh, TV, uh, unit with like my smart TV. And I'm not sure if you could see, but I have also all these very cool, uh, sculptures, uh, and, uh, that I had like a venom from Marvel and Goliath from gargoyles.  

[Doug]: That is, that was an amazing description. And I think you also are about to start a new trend, which is called a pandemic hair. So when we see that in the next GQ of like the new hot thing, we were going to know who to credit it to. So make sure all of those watching me curious, you know, who, who deserves the credit on that one. And, uh, Doug here, Doug speaking, I am a white male in my mid thirties. I'm 36. Uh, so close to Walei and, um, I am wearing a light blue checked, button up shirt and, uh, got, got short hair. Um, not as, not as a pandemic chia as Walei, um, and a little, but a little bit of like pandemic Scruff on my face. So that's kind of where I, where I show my pandemic-ness. Great. Well, you know, to start, you know, I, we have a lot to talk about today. Certainly want to talk about your personal journey, which is really interesting. I want to talk about ADA 30 and everything accessibility, but I'd love to start off, you know, I, haven't actually asked this question in a while, but I want to know, um, how are you, how have you been feeling through these last few months in this distinctly different time?  

[Walei]: Um, you know, I have a lot of the same problems that everyone else has obviously. Uh, there's the added barriers, barriers of accessibility. Um, I, um, thankfully I'm working, uh, so I'm able to maintain my life here in New York city. I live in a story of Queens and, you know, been trying to practice social distancing as much as possible. Um, and you know, I, I go out to get groceries whenever needed and, you know, that has been empowering, but also a little bit difficult because, you know, um, obviously I, uh, why should I didn't say it? I identify as a blind person. Uh, I use a mobility cane and, uh, I've been known to use all sorts of colors of canes, my favorite being, uh, electric blue, but I've also known to rock black and green. So when I go out, um, unfortunately when people see a blind person, they just forget about social distancing measures and it's happened to me, uh, quite a few times where just a random stranger will just go ahead and grab me without even asking or prompting me or asking for consent or anything like that. So that's some of the barriers, but, uh, you know, otherwise I have been able to stay safe, stay healthy, um, go out and get the supplies that I need. I know other people in the blind community have not felt as safe and have relied on, uh, others. Uh, and I, you know, I also do have some friends here in the community that have helped me and, uh, you know, gotten me either supplies or groceries or, you know, have, um, went out with me for walks and parks and things like that.  

[Doug]: I'd love just to go back to the topic of, you know, people, some other people, you know, kind of forgetting about social distancing and just like grabbing her arm without consent and things like that, you know, certainly throughout, throughout the process of The Feeling Through Experience and taking this around, um, you know, much of which has been connecting the deafblind community and other related communities with, you know, other communities that maybe are coming to the deafblind community or blind community for the first time. And something that, a question that I definitely get asked often from people who are kind of new to this space is how to help. And, like the whole question, like again, quotation marks of help, right? Cause there's sometimes this assumption that it's needed when it's not. So, you know, what would you, speaking to someone who's watching who maybe is new to all these topics, and has this question of like, quote unquote, how do I help, right. What would you say to that person? Like, who's curious of, maybe it's like, I don't know if I should interject or not, or I, you know, who's just completely new to it and doesn't really know how to navigate that situation. What would you say?  

[Walei]: That's a good question and you happen to talk to somebody who conducts disability awareness trainings all the time. Uh, and that's definitely one of the topics that we handle. Um, you know, the, the two main rules are, you know, um, uh, or a few rules, right? We respect people's personal space first. Uh, if you think you want to help, or if you think someone needs help ask, um, and, uh, if they do say that they want be your help, don't assume that, you know, what they need, um, ask them how they can best help you. And, uh, you know, this happens to me all the time where, you know, I for, and I'll talk to my experience as a blind person. Um, you know, folks will walk up to me all the time and, you know, sometimes I just, I know what I'm doing, but, you know, because I'm a blind person and I'm doing it in a way that is visually, it looks different, uh, from what other people are used to, they think I'm struggling or they think I need help just because I'm holding a cane.  

[Walei]: Right. Um, and folks will approach me and say, you know, excuse me, do you need help? Um, and a lot of the times I'll say no, because I know what I'm doing. And, uh, unfortunately, um, folks have trouble believing that. And usually the next question after that is, are you sure? Um, and, you know, uh, so definitely don't do that. And, uh, also definitely don't, um, don't follow the person and then yell things at them as they're, you know, trying to traverse and navigate the environment. I've had folks yell at me, things like those are stairs as I'm halfway already up the stairs, or that's a garbage bin after I've already dropped some garbage into it. And, you know, those are funny stories, but sometimes, uh, you know, it's taken me a good amount of concentration to get to where I'm going or do what I'm doing. Um, and so having somebody like be a backseat driver can be distracting and, you know, it does happen sometimes where it'll distract me enough, where I will walk into something and then they go see, you do need my help. You know, not even, not even realizing that it's really them that have, you know, created the situation. It becomes like a self fulfilling prophecy. Um, but you know, if somebody does need your help and they let you know that, um, you're, you should also just be respectful to ask for consent before touching them or any of their belongings, as well as, you know, ask them how you can best help let them be the leader in that conversation. So they can hold to their autonomy and independence as much as they could with folks who are blind. You know, they might ask you for a verbal directions where, you know, you only use your words and, um, then there's the practice of human guide where they can hold onto your elbow, uh, to, uh, physically, you know, navigate.  

[Doug]: Yeah, that was, that was an amazing answer. And, you know, reminds me of a couple of things. Uh, you know, one is, and I've shared this story maybe once before for those who have tuned in, in the past. But, um, everything Feeling Through is inspired by an encounter I had with, um, the first man who was deafblind that I'd ever met about nine years ago in New York City. And in reconnecting with him and talking with him, one of the things that he shared with me, um, a year or two ago was that, um, he's very adventurous. He loves to just explore and be out in the world all the time. Um, and he says that at least once a week, when he's out in the world, he'll just be all, you know, exploring, doing whatever errands he has to do, whatever it is. And someone else will see him assume that there's something wrong and actually go and get a police officer. And you'll have to like talk down a police officer on a weekly basis just because someone else without checking in with him in any way, assumed not only that he needed help, but that he was in some sort of distress that needed the intervention of a police officer. And it's just such an amazing, like extreme example of like what you were just talking about. And I think there's this thing, you know, certainly something that I've learned in a much more nuanced way, but I think something that anyone can really quickly, um, start to understand is like, and this goes for anyone who's, anyone is having a distinctly different experience in life than yourself. So to carry your own perceptions and place them onto that other person, rather than really trying to connect with and understand where that person's coming from in their own words can be a really, uh, tricky and bad situation and not a great way to operate. So, you know, so well exemplified.  

[Walei]: If I can add to that, you know, I think one more rule is don't blow the situation out of proportion just to demonstrate what you just said. You know, you know, don't also, don't single out a disabled person in public. A lot of people will do that, uh, and just call attention to them, to everyone around. And, uh, that's not, you know, being singled out in public is just being in public as a disabled person can be difficult enough because I, you know, I might not be able to see, but I could feel people staring at me a lot of time. Um, but in terms of blowing this situation out of proportion, um, I also, you know, I've experienced things such as, you know, I was once looking for the Outback Steakhouse in 23rd street and, uh, I stopped two strangers, I was almost there, right. It's just like a couple of doors down. And I asked them, you know, I was trying to ask them, you know, where, you know, how far down is it? And before I could even, you know, get an answer from these people, I hear somebody like running towards us from behind. And this lady just yells like, wait, wait, I'm a nurse, you know? And I'm like, oh, there must be an emergency. So I step aside and guess what it turns out, I'm the emergency. And she's like, here's my arm. And, and so, you know, it's just the, it could be a, yeah, it could be definitely off-putting and, and, um, having to sort of talk people down all the time. So, absolutely. Yeah.  

[Doug]: Well, you know, I'd love to, I'd love to just, before we move forward, I'd love to go back, let's go back, let's go back to your childhood. And I know, you were born in Egypt. Can you kind of tell us a little bit about growing up there and when you came to the United States?  

[Walei]: Absolutely. So, um, I was born in Egypt and when I was about nine years old, um, my family moved here to New York, New York City in the United States. Um, and, uh, you know, that was my first transition in life. I was, um, you know, Egyptian and I had, um, I was, and I know how to speak English, but, you know, I, it didn't take me very long to sort of pick up the American accent, uh, cause I was young here and definitely went through, um, the transition of assimilating the culture and learning how to act, uh, socially and communicate the way that people do here, which was different from us that, you know, I also, you know, I didn't, I didn't necessarily grow up, grow up with the same education that folks here did or the same freedoms and rights such as freedom of speech or freedom of choice and things like that. So even as an adult today, you know, I have trouble speaking up for myself because, you know, at an early age out, I wasn't really, you know, encouraged to have that freedom of speech or whatever. Um, and, uh, that was sort of my first transition. And, um, I was diagnosed, uh, with retinitis pigmentosa, at age four and that's a progressive eye condition. So I grew up with relatively, you know, usable sight. Uh, I had tunnel vision, which, uh, was able to, you know, read and see faces and colors and things like that. And at the age of 19 is sort of when my site crossed over from, you know, being able to see and have low vision to blind. Um, and, I had to sort of relearn how to do everything. You know, I wasn't necessarily prepared because my parents were immigrants and they didn't know about early intervention services or anything like that.  

[Walei]: Um, so I didn't really get any sort of rehabilitation or mobility training or anything like that until I was like 15 or 16. Um, and so as an adult, I had to sort of relearn how to be a person from scratch, you know, how to do everything as a blind person. Um, and, uh, so, you know, I've, I've sort of did that transition from being relatively sighted and, and building a whole life around being sighted, to becoming a blind person and, you know, building a whole life around being a blind person and, and a former sighted person, I suppose. Um, so yeah,  

[Doug]: I love this, you know, you, you obviously so much of your, your childhood and adolescence is this transition. Like you're talking about transitioning from one country to another, and the culture shift there, transitioning from someone who is sighted to someone who is blind. Can you, can you talk a little bit more about that transition from when you started to like, personally identify as blind and kind of how, what that transition was like as a, as a young man from having kind of identified in one way up until that point. And now what that process of like is like a moving into identifying in another fashion.  

[Walei]: Sure, yeah, I mean, there's definitely, um, a lot of things to go through and experience and, uh, it's not like a, you know, I had some trainings and then I became blind and I was like, okay, I know what to do now. You know, uh, there's definitely a psychological toll that it takes and, um, learning how to get around and, and how to read, how to get dressed, how to, you know, make food and, um, how to solve all these little problems that, you know, make up the day. Right. Um, and, um, to be honest, I wasn't exposed to a lot of blind folks, uh, when I was younger. And when I was, you know, I had this sort of internalized ableism. So, you know, people who had less sight than me, I sort of viewed myself as better than them. Um, and sort of thought to myself and never really said out loud, but like sort of thankful that I wasn't as blind as those people.  

[Walei]: And I remember helping, you know, I was in blind camp and helping other people who are blind because I had more vision at the time and be feeling good about myself and being like, I'm glad I'm not that person. Um, and, um, you know, it wasn't really, until I started meeting other blind people and other disabled as well, who are comfortable in their own skin who were proud to be disabled, um, that I started to shift from that mentality. Um, you know, as well as, you know, I had a lot of internalized ableism about myself and what I could do and, you know, up until the age of 23, I was relying on people to just help me out with even the simplest things like going to a doctor's appointment that was only two or three blocks away. Um, and, you know, relying on people to just take, take me out and give me social experiences, because I wasn't confident in my own travel skills and travel training. And so, uh, when I was 23, I started, you know, I just made a constant conscious, conscious effort for meeting other blind folks that were independent, that I could do it too. And I started kinda teaching myself how to, um, you know, based on the skills that I had learned from previous orientation and mobility classes that, um, you know, to take little trips that I started taking the bus, maybe one or two stops away and, uh, you know, eventually longer and then started taking the train a few stops and back and, you know, short little trips and, uh, you know, whether it was just to go downtown to buy, you know, a watch or something like that, it was like a sort of rewarding experience in itself to just do something by yourself, after such a long period of, um, being conditioned, you know, by everyone around me, by society, by media, that you should wait for others to help you.  

[Walei]: Um, and you know, not to put anyone down as well, you know, there's very levels of independence and I support everyone, you know, who, wherever where they're at. So, and I'm not saying that if somebody needs help, that that's a bad thing, but for me, it was an empowering to be able to, they go out and do things by myself and on my own. And I used to, um, got my, yeah, I started getting my degree in disability studies in 2010. Um, and that really changed my world view. I got to meet so many people with disabilities, whether they had cerebral palsy or spinal cord injuries, people who are deaf people on the autism spectrum, um, and just started to get, um, exposed to all these folks that I had never met before. And all these communities that were not I'm ashamed of who they were and were much more comfortable in their bodies and, you know, were loud and proud about their identities. Uh, and yeah, I started to sort of shift from somebody who, you know, had these ablest tendencies and, you know, to someone who is now proud to be disabled and proud to say the word blind, you know, and I'm happy to meet other blind folks, whether, you know, they have the same skills and independence as me or not. Uh, and sometimes I've been able to help folks that were not as far along in the journey as I am by teaching them from my experience and, uh, telling them my stories and encourage them, encouraging them to be more independent. Um, and, uh, so, you know, now I'm at a place where I work in city government and I actually get to advocate for our community within that government and, and, you know, make sure that as much as I can, right. Um, that I am representing the needs of the community and, you know, nudging folks, um, who need to be nudged, but also educating folks who are otherwise not exposed to our community and the disability rights movement and, and all of that.  

[Walei]: Um, so it, and we've had, you know, the disability pride parade for the last five years and I've attended all, all of them. Um, and it's, you know, it's usually my favorite day of the year because, you know, we get a large number of people with disabilities and allies and, you know, march throughout the streets and, uh, just make our presence, you know, known and felt and heard. Um, and you know, this year we're, we're doing a disability unite festival that will be virtual and it'll also be accessible. So that's a little bit about me.  

[Doug]: I love that, how you kind of just walked through, um, you know, this transition from identifying as sighted to moving into and the different stages of starting to identify as blind. Um, and this idea of, or this, you know, this concept of internalized ableism, um, you know, I guess first off, could you, for people watching, who might not know this term, can you, can you just define what ableism is? And then in conjunction with that, you know, you had mentioned that even as you were starting to identify, like, identify as blind, there was still this kind of hierarchical element early on for you of feeling like, well, I do have some vision and this person doesn't so like, phew, like, thankfully I have the vision I have, and I wouldn't want to be this person. Is that something that you think like, you know, is fairly pervasive, in, in various disability communities? Or is that something that is, is a pretty relatable experience for a lot of people? So again, the first part of that is if you could define ableism first for those who might be coming to the term for the first time.  

[Walei]: Absolutely. Um, yeah, ableism is sort of a term akin to racism, but it comes, you know, when it comes to disability. Um, and, uh, you know, so it's having prejudice against people with disabilities. Uh, the only, I think big difference, I think enables them is it could be very subtle. Um, you know, people aren't outwardly hateful towards people with disabilities, generally speaking. Um, but it, it, it, it presents itself in the forms of micro aggressions, you know, in that people, uh, will sort of assume a role of authority and I'll meet a lot of able-bodied folks or sighted folks, um, who will tell me what to do and insist that, you know, it's just on things like helping me write or insist on, like, in this situation where I'm walking by myself and somebody grabs me, I'll say, no, thank you, please. Uh, I don't need your help. And they think that they're doing me a favor. And so they're like, they insist on it. Like I'm trying to be courteous to them and trying to be polite at my own expense, but really, I just want to be left alone and I want to be respected. Right. But they don't realize that, um, they think that they're just helping, um, it could also come from a place of just low expectations, you know, where I go somewhere and, um, you know, trying to get services and they ask me, so where's your helper, you know, because they don't think that I can get there on my own. Right. Where's your caretaker, um, or, or even like, you know, when I tell folks I take the subway and they just react in this way, like shocked way, like you take the subway really all by yourself?  

[Walei]: You know, or, you know, so it's, it's a sort of, there's so many varying degrees of ableism, uh, even, you know, when we, um, put people with disabilities on a pedestal for doing ordinary things, you know, you'll see a, an article about, let's say, um, the boy with autism who went to prom, uh, that's apparently news, you know, um, and you wouldn't read necessarily write a story about, you know, a boy or a girl, or, you know, a person, uh, who is not disabled going to prom because it's a regular experience. But for some reason, if it's a person with a disability, then it becomes this sort of inspirational sensationalized, you know, um, uh, news story, uh, which really, you know, shows like our lowest expectations of the, of the disability community to speak to your other question about hierarchy. I do definitely think that it still exists. Um, but I wouldn't say it's like, you know, something that all people with disabilities experience, depending on how connected you are with the community and how deep your understanding of disability rights is, and, um, how much you're exposed to folks. Um, the hierarchy starts to sort of collapse. Um, but there's definitely a lot of folks, you know, who are not necessarily there, they're on the outskirts of the community, right. They might miss maybe in the example of myself, right. Have low vision, but not, you know, be somewhat exposed to people with disabilities every once in a while or other blind people let's say, or people who have less efficient than them, uh, but not be exposed enough to kind of have that, um, respect or empathy and, and sort of inwardly, you know, judge or inwardly kind of think to themselves, like, like I said before, like, I'm glad I'm not that person.  

[Walei]: Right. Um, so that, you know, that hierarchy does exist and it, it is a form of internalized ableism. Um, and you know, I think even outside the community, I think I do meet a lot of folks who are thankful that they're not disabled and they make me, they make it known when they meet me. Right. Um, you know, they'll sort of use meet myself as a, um, as a way of sort of, you know, subtly being like, um, you know, meeting you like makes me so thankful that, you know, I'm healthy and able body and I don't have to deal with all this crap. Right. Um, maybe after like five minutes of interacting with me, uh, and they think that they might be saying something nice, but they're not, they're saying like, thank God. I'm not you. And they're like, they're not even necessarily keeping it to themselves. They're actually just saying it to my face. Um, so yeah, there's definitely a hierarchy that exists, but like I said, it really depends on how deep your connection is to the disability community and how many people you're actually exposed to. Um, and that, you know, one more sort of example is I will meet a lot of folks who are very interested in what kind of treatments I've had or, or if I've heard of the bionic eye or Lee, um, have I tried laser surgery or what about STEM cells? You know, and so I'll meet folks in there. This is their very sort of first opening questions. Um, and they, you know, once again, they think that they mean, well, um, uh, but you know, when, when the first question I get from folks is often, have you tried fixing yourself? You know, it doesn't necessarily make me feel great, or it's not really a great starting point for us, um, as, as a conversation, because now I sort of feel like you don't necessarily respect me as a person, right. And, and you have this, um, this desire to know normalize me. Uh, and that's, uh, unfortunately, you know, another form of ableism is trying to make people with disabilities, look as normal as possible, and like asking folks who are blind, like to put away their canes so that they are not, you know, very visibly disabled or, um, you know, and things like that. So it was a, it was a lot, I think,  

[Doug]: No, that's amazing. And there's so much to, so much to go into there. I just want to take a quick moment to do an interpreter, switch Hold for that for just a moment. Alright. We're all set. Good to go. Great. All right. So continuing here. Yes. You know, Walei, so many, so much great stuff in there. And I think just to touch on a couple things real quick, I loved, I loved one of the kind of key distinctions that you mentioned in ableism is that very often there's a real subtlety to it. Um, that it's not this overt, like someone yelling at someone like you're less than me because you're disabled, like, or, you know, someone like really outwardly exhibiting it often, it's this really unconscious bias for someone who doesn't even have any conception that they're even being able to list or doing something that's offensive. In fact, there's this real irony kind of to this, what you were describing around the trope of the disabled person here to inspire everyone, that being their function, this real irony of oftentimes people, when they're exhibiting like very clear ableism, think they're doing the very opposite and think they're doing this great thing where they're like doing this great thing by putting someone who's disabled on a pedestal, when in fact, in effect that person is really just highlighting that person for their disability and not seeing them as a, as a person. Um, so there's like both the subtlety that you were describing and also the irony of someone being able to just, and very, to they're very opposite of that, thinking that they're actually doing something really great and helpful, um, and you know, so much more in there that was really well put. Um, I'd certainly love, you know, with the time we have left to move a little bit more into what you do want a daily basis, how it relates to ADA 30, just right before we move into that reminder to all of you watching right now, if you haven't already sign up for our free live stream of The Feeling Through Experience on July 16th, that will be in honor of the 30th anniversary of the ADA, Americans with Disabilities Act. A very important piece of legislation, which we're about to discuss. Um, you can do so at feelingthrough.com/register.  

[Doug]: And if you have already signed up, please share that information with anyone and everyone. We want to make it as big of a celebration as possible. And during these times where we're so separate, there's something really, really cool, like our last live stream of bringing so many thousands of people together in one virtual viewing, experiencing having that chat box light up with people from all over the country and all over the world, you know, sharing their thoughts and connecting. So please do share that. And again, for the second half, and for the rest of this conversation, if you're watching on Facebook and you haven't already please hit that share button, share it with other people so they can tune in for the second half of this, we're going to be talking about some really important stuff around accessibility. If you're on YouTube, feel free to share that link with other people as we continue the discussion. So, let's talk about ADA 30, can you explain what that is to people who aren't familiar?  

[Walei]: Absolutely. Um, so the Americans with Disabilities Act was passed in 1990. Um, and so it's been around for 30 years. There's actually signed on July 26 of 1990 by, uh, George H. Bush Bush. Um, and, uh, it was instrumental in, in many different ways. First it gave a lit legal definition of what a disability is. Um, and so now we had actually a way to distinguish and, uh, be able to claim a disability, and distinguish ourselves from folks who might be quote, faking disabilities, I suppose. Um, and so removed a lot of that ambiguity. It also protected people with disabilities from discrimination, uh, whether it's in employment or in private businesses, right. And getting services. Um, that was a thing where, you know, if you were disabled, you could show up somewhere and they could say, well, we don't really serve your kind, um, and to tell you to go away.  

[Walei]: Um, and, it also, you know, has different titles, title two and title three are the ones I'm going to highlight, but title two pertains to state and local government. So, um, governments need to make their services, um, and communications accessible to people with disabilities and title three, uh, is the same thing, but it's places of public accommodations, you know, meaning businesses, uh, you know, and, any place that provides services for folks. Uh, and these are important, because they, you know, they give people with disabilities, sort of the right to, um, you know, demand, accessible services. Um, and, they also have, you know, the concepts of reasonable accommodation and undue hardships. And so it gives us a way to measure whether the modifications for accessibility are feasible or not. Right. So you are asking a big corporation or a big department store, like, like, um, I don't know, like, let's say to add elevators, in their department stores, that's considered a reasonable accommodation. Um, on the, the other hand, if it's a small sort of mom and pops, um, and, I'm asking them to get an elevator, could be a financial burden that would put them out of business that could be considered right. And undue hardship. So it's important to kind of be aware of those, um, and know about them because, you know, they can help you in your advocacy and help you understand why some places are accessible and why some places aren't. Um, the other thing about the ADA and, um, you know, that could be a suppose better is that is, it is a complaint based law. So there's no deadlines for anyone to make their businesses or services accessible. Mmm Mmm. Instead it is a complaint based law. So folks, you know, have to submit their complaints with the Department of Justice or their local entities.  

[Walei]: Right. And that's how, um, a lot of the advocacy has been done over the last 30 years. So the existing accessibility that we have today is because of a lot of hard work, blood, sweat, and tears of advocates, you know, either protesting or calling businesses out publicly or taking them to court. Um, and so we've, we've made a lot of progress, right? We've went from, um, society, any that, you know, rarely ever had ramps and elevators and accessible signage like braille, um, to, you know, having that stuff a lot more available a lot more around, I'm not saying it's everywhere. Yeah. Um, uh, but we've come a long way. Um, and you know, now we're in a place where, you know, I, as a blind person can actually watch a main stream, um, a streaming service such as Netflix, Hulu, or Amazon prime, and actually have audio description. That's not something I could even fathom six or seven years ago. I didn't even think that was possible. And that, that has become possible because of all of the advocacy from the disability community, uh, alongside the, uh, the ADA. So it's the 30th year of the 30th anniversary of it being passed. And, uh, there's been a lot of celebrations. Um, and as we know, it's, uh, it's a virtual age now, uh, we're not, do you know, we're not doing anything in person anymore. So a lot of organizations are doing their celebrations virtually, um, at the Mayor's Office for People with Disabilities, we've put together a calendar of a lot of these events. Most of them are New York City based, but you don't have to be in New York to attend. And they, you know, include, um, events that we are organized ourselves, the New York city mayor's office for people with disabilities, as long as along with other city agencies, community partners, service providers, and so on and so forth.  

[Walei]: And the events run the gamut of, you know, uh, disability rights and disability studies discussions. Uh, I've been conducting digital accessibility workshops on how to make your websites, social media documents, uh, and so on and so forth accessible. Um, we've, there's some accessible film screenings, uh, such as Feeling Through, ReelAbilities is having a few film screenings as well. There's verbal, uh, virtual verbal description tours that, uh, museums are having such as the Guggenheim and the Metropolitan and the Whitney Museum. Uh, we have actually a virtual barn tour on the calendar, uh, of a horse barn from Gallop NYC. And that's going to be audio described and it's tomorrow it's on our calendar as well. Um, so, uh, we have a lot going on in this calendar currently, you actually, in including, you know, today's events, we have 36 events happening in the next, you know, um, well for the rest of the month, right. It's, it's the month of July. Um, and we keep updating it and, you know, taking out the events that have already happened to make it more, uh, or easier to, to browse and, uh, sift through, we have filters built into it as well. So you can look for specific types of events, whether they're kid-friendly or audio described or dance or art or advocacy related events. Um, so there's a lot going on and, you know, we encourage you guys to visit our, uh, ADA 30 website and find out, uh, about these, uh, these events and participate. So, um, if you would like to the website, you can sort of go to, to learn about ADA 30 and get to the calendar is nyc.gov/ada30, ADA 30. So nyc.gov/ada30.  

[Doug]: Okay. Right. And there's a lot of really, really cool events on there, some of which you described. Um, so please do check that, that out, in addition to of course, tuning into the Feeling Through event that's part of that, that we're really truly honored to be a part of the, uh, Mayor's Office for People with Disabilities celebration.  

[Walei]: And that is going to be audio described, correct?  

[Doug]: That is, yes. We have an audio descriptive option for that. Um, and to the point of audio description, because, you know, as, as a filmmaker, um, it wasn't until making Feeling Through that I really got to know all of the elements of accessibility in a way, um, that I really wasn't aware of before. Um, can you, can you just, just describe to people that were coming to this for the first time, what audio description is?  

[Walei]: Yeah. Um, I like to, you know, lead with it's the audio book version of your video. Um, so an audio description is adding, um, a voice track that describes the visual elements of whatever it is, you know, video content, right. It could be a film, it could be a TV series, or it could be a YouTube video. So just adding a voice track that explains what's happening. Right. And so it could, um, read any text on the screen such as credits or the title. Right. Um, it will introduce the scene. Right. So, um, and in, you know, in a conference room, uh, with a round table, um, a bunch of superheroes sit, sit around the table with Barry wearing various costumes that are colorful, Superman addresses them, or, you know, something like that. Right. So it's, it's very akin to an audio book listening to an audio book. And a lot of my friends actually, who are sighted, end up using audio description to listen to, uh, let's say like Stranger Things while they're doing dishes and not looking at the screen. And so it's supposed to provide that same experience, right? Obviously we're not seeing all of these, the visual nuances, but we're still able to get a full and meaningful story and able to follow the plot and really get to know characters when we hear audio description. And, uh, we do it all without seeing anything.  

[Doug]: And, you know, we connected about this earlier in the week, but, you know, again, from the filmmaker's standpoint, um, prior I'd been part of, kind of in a sense, subconsciously part of this like culture, where it was a little bit like thinking of accessibility can be a little bit of a headache or an added challenge onto what's already a really like complicated process of making a film. And it wasn't really, again, until Feeling Through that, I really am, um, embraced it and really hit it head on and embraced it. And something that, you know, Feeling Through specifically is such a visual film. There's, there's very little dialogue that in a case like that, um, audio description is so important, um, for a lot of people to experience it. And it was the first, it was my first personal foray into audio description, and collaborating with a couple people cause I wanted to get some other people's perspectives of how they were viewing the film, to create the script, if you will, for the audio description and then as we're recording the voiceover for it. Um, and it was something that previously might've seemed like, just this extra, like arduous tasks that I had to do. I thought it was really fun creating it and a really great, kind of new way of approaching the story and how to translate it into another mode, to make it not just accessible, but also just, you know, it being this really interesting from a creative standpoint, approaching it in a distinctly different way than I ever had in the past was a really fruitful and, and interesting, um, endeavor.  

[Walei]: Yeah. Um, yeah, it is in itself an art form and it could be done, you know, in a way where it's super engaging and fun and it could be done in a way where it's informative. Um, and it could be done in a way where it's no boring or actually actually lacks details that are important to the plot. Um, so, you know, it's about telling a story in it and translating that, um, that experience into an audio experience. Um, so I completely agree, and I recommend for folks who haven't ever listened to audio description, you know, look up stuff on YouTube with the word audio description, or if you're watching any Netflix original shows, they all have audio description. You can just change the language, the audio, from English to English, AD or English audio description. And it just might be an interesting and fun experience that, uh, to check it out,  

[Doug]: I'm going to just hold one moment for another interpreter switch. So hang tight. All set. Great. Okay. So continuing, yeah, that's a great suggestion while I, and I think, um, you know, I think, I think people were probably a lot more primed to that experience now, given as you were mentioning the popularity of audio books and, and just how great it can be to, like, I know as a lot and someone who lives in Los Angeles, I spent so much time in my car that I love all things audio related. Cause there's so much time in a car listening to, you know, a podcast or music or a book on tape or audio book that, that could maybe be another thing to try out for someone who maybe wants to catch up or maybe revisit something that a show that they really love, um, and maybe experiencing the new way. So that's a great, a really, really great suggestion there. So I'm going to actually, I, we have a question from Judith. She asks, what progress do you see for disabled people being more accepted and having greater opportunities as part of a larger diversity trend?  

[Walei]: That's a great question. I think, um, you know, there's definitely some progress there and, you know, the, the whole initiative of diversity has typically always, um, you know, excluded people with disabilities and, you know, we have a lot of these diversity conversations and they center around race or, um, gender, or, you know, LGBTQ rights and trans rights and stuff like that. Um, and rarely do we ever hear about disability in the, in those conversations. And I think we're, we're definitely starting to hear more and more as, you know, as people with disabilities advocate and sort of insert themselves into those conversations and let people know that they're completely forgetting about us. So I am sort of, uh, seeing more of that happening and even more mainstream, um, you know, more representation in the mainstream with, you know, some recent characters in media have actually been played by disabled, um, actors, um, Feeling Through being one example. Um, but you know, there are shows out there where they're, you know, people with, uh, the disabilities playing those roles instead of, you know, having a sighted person blank, playing a blind person or having, uh, an able body person sit on a wheelchair and pretend that they're a disabled character. Um, and, um, you know, even in social media, I think, uh, the internet has been a great enabler enabler for the disability community to have their ideas and advocacy expressed and shared more widely. Um, that's not to say we are in a perfect place. Um, I just am, I am sort of observing more of that and, you know, hope that we continue to push and, and have more representation, whether it's in media or diversity groups, you know, and, and HR groups as well and, and unemployment, especially, um, there's still a very big employment gap in the disability community.  

[Walei]: Um, you know, where I know here in New York city, we have a 70% unemployment rate of people with disabilities. That's not 70% of the disability community that is employed as actually 70% of the disability community is unemployed, which is not true for a lot of the other communities. And we're, we're definitely trying to change that as well by educating, um, employers, businesses, nonprofits, anyone that we could work with at the Mayor's Office for People with Disabilities, we have a NYC at work initiative, it's an employment initiative and we've, you know, successful in connecting with all these different different businesses. And what we do for them is, you know, help them by giving them disability awareness and etiquette trainings, letting them know what, what the accommodations process is for hiring people with disabilities, um, and what, you know, uh, how to interact with your employees, how to make them feel included as well, how to set them up for success. Um, and you know, that team has had, you know, successful outcomes in getting people with disabilities jobs in the last few years. Unfortunately, it's kind of slowed down with the pandemic because, you know, the employment situation is not great for everyone right now. And, you know, people aren't hiring as much  

[Doug]: Just with the, with the last like five minutes or so. We have here to kind of work things back to ADA, um, as we look back and, you know, it being the 30th anniversary, what I'm sure this could be a, you know, a much lengthier answer as well, but kind of ensure where do you see, um, as far as where we're at right now, the greatest strengths of, and successes of the ADA over these past 30 years, and where might it be? Might there be the most room for improvement if you will moving forward?  

[Walei]: I think just sort of highlight, I think, to reiterate, to reiterate what I said before, um, it's greatest strength in is that it, you know, it, it gives us a legal definition of disability. It protects people with disabilities, from discrimination. It also requires, you know, government and pro affiliates is public accommodations to make their services accessible. That could be their physical infrastructure. That could be their digital services. There's actually been, um, a lot of lawsuits, um, in the last few years regarding website accessibility. So, you know, even websites have to be accessible now. Um, where I, where I see it's sort of, um, are always a failure, but where it's, you know, could be better is that it's, once again, it's a complaint based law. So places that are not accessible will continue to be inaccessible until somebody calls them out on it until somebody submits a complaint, they're not necessarily sort of, um, you know, re uh, yeah, so they don't necessarily have a lot of incentive to do so, you know, unless they are actually more conscious and they wanting, you know, they want to open up their business to more people, right. Because if you make your business successful, then you are welcoming people with disabilities, but not just people with disabilities, the people that they bring with them, right. Their friends, their families. Um, so, uh, where, you know, where it could be better, I think is, you know, more enforcement or, you know, more, um, proactive, uh, you know, uh, a proactive approach, you know, if there's any way to change it, or, you know, if it could change, right. If it could be more proactive and actually requiring businesses to be accessible by a certain time and have more concrete steps to getting there. Right. Um, but, um, where it has been successful is as a complaint based law, it has had a lot of success in getting businesses and governments to be more physically accessible and more digitally accessible. And, um, you know, also as protected, uh, people with disabilities in employment and stuff like that.  

[Doug]: No, there's certainly so much, I'd still love to ask you both kind of like our final topic here at the last minute, or so we have, I'm wondering again, in, in short, um, what do you feel is most the most misunderstood element of accessibility for those who perhaps don't require it themselves in certain capacities and what might be your hope for the future around accessibility?  

[Walei]: Um, I think to sum it up, and this is not my own quote, this is definitely something that has been said by many people, um, accessibility is for everyone. Um, and I think that whether, you know, you're disabled or not, you could actually benefit from accessibility. Um, whether it's when you change the brightness on your phone or enlarge the font on your device, um, whether you've used captions in a video while, while watching the video before, uh, if you've used a ramp, uh, to help you transport something like, uh, that is large and has wheels and you can't carry upstairs, uh, if you've used an elevator ever, right. Um, accessibility is for everyone. And the more that we think about making our, uh, infrastructure, our society, our services, more accessible, the more we make lives easier for not just other people, but ourselves, especially our future selves, you know, as we grow older and, you know, uh, you know, age people, people will, you know, get some kind of experienced some kind of disability, whether it's vision loss or hearing loss, or, you know, uh, some kind of mobility related issues or, um, so, you know, accessibility is for everyone, I guess, is the, is the, is my answer to that.  

[Doug]: I couldn't think of a better way to conclude today's episode with that: accessibility is for everyone. Walei, thank you so much for joining us today, that was really, really, really great stuff. And I hope, uh, I hope we're able to talk again at some point in the future.  

[Walei]: Absolutely. If I could encourage everyone to make their digital content accessible, if you're on Instagram or Twitter, please do use all texts to describe the images that you post. Um, and if you could find out more about that on our, uh, accessibility guidance page, which is nyc.gov/accessibilityguides. You can download guides on making your documents accessible, or your slides, your social media posts, as well as your videos.  

[Doug]: Amazing. Well, make sure to check that out, and also join us on Thursday, July 16th, for The Feeling Through Experience live stream for ADA 30, www.feelingthrough.com/register. And we'll see you there. Thanks so much, everyone. Bye. 

Feeling Through Live • Episode 12: DeafBlind Golf Pro and Advocate

[Doug]: Welcome to episode 12 of Feeling Through Live. We're joined today by Carol Brill, who is a golfer and advocate, and also just someone who I've had the chance to get to know as just a really interesting, person all around. So I'm excited to talk to all, talk to you today, Carol, about a whole host of topics, but, for starters, why don't you, why don't you tell everyone where you're tuning in from  

[Carol]: Hi, everyone from Dublin, um, happy holiday and, um, I live in Dublin and I've been living here all my life, which is so many years. Um, actually I'm 50, 50 years old, so I've lived here in all my life. Um, I have usher syndrome, time type two. Um, I'm a very passionate advocate for, uh, trying to get deafblindness recognized as a unique disability in Ireland. Um, I'm also promoting awareness about usher syndrome, visual impairment, deaf blindness, um, you name it. I met they're advocating, I'm being a pain in the backside. Um, and then in my spare time, well, in my, when I'm not doing my advocacy work, I I'm a mother to a 12 year old daughter. Who's soon to be 13. She thinks she's going to be 18. But anyway, um, then my mother who's 81. She lives with us as well. So I take care of her. She had a really bad accident. Well, yeah, she, she broke her back, am a new year and, uh, nothing to do with new year partying. I, my dad, um, but she broke her back and I've been taking care of her and thankfully she's walking again and she's in good health again. So, so that's, uh, that's what I'm doing. And then for my time off, I play doll. So yeah, that's me in a bit of a nutshell,  

[Doug]: I, we're certainly going to want to get a lot more into all of that, but you know, I'd love to, just as a place to start. I mean, obviously there's a lot going on everywhere in the world right now. Um, I'm speaking to you from Los Angeles where I've just finished breakfast and you're on the other side of the world in Ireland where I imagine you've just finished dinner. But I'd love to just get a sense of just like what, what, what is life been like in Ireland, um, over the last few months? Um, what's the climate like over there? I mean, as you well know, I mean, obviously, you know, COVID is affecting everyone. You know, everything that's been happening around, uh, black lives matter is certainly an international thing, but that's certainly been really huge here in the United States. And certainly Los Angeles is a hot bed for that, but I'm just kind of like what, what it's been like. However you take that question, what it's been like in Ireland over this time?  

[Carol]: Um, well, when COVID, uh, came into our country, um, effectively on March the 12th, we had to move quickly interaction and all the schools for shut down. Um, my daughter, she was off school at the time and she wasn't very well. I actually tried to get her a COVID test. And then when we, I received an appointment time, a microphone to say a text message on my phone, I had to say to go to this particular center and there was no way of getting there. Uh, we could've gone by public transport, but, you know, we were told that we had to, uh, stay in doors. We had to cocoon is the word that we use here, anyone that was vulnerable or anyone over 70 had to cocoon. So that meant my staff and my doors. I had to cocoon along with my mom. And so we were kind of plumbed into an absolute, uh, situation of pure chaos because, you know, there's only three of us in this house and I'm the one that runs the household.  

[Carol]: Make sure I take care of my family. Um, I couldn't take my daughter for a test because we couldn't use public transport and we had no other way of getting there, uh, for the test. So we had to miss the test, but thankfully my daughter was soon very well. Again, I don't know if she had the COVID or not. We were not going to know for quite a while. And that that's an everyday worry of mine at the moment. Um, because we had to cocoon, uh, it meant that we were cut off from everything and just basics like grocery shopping was a mammoth challenge because the first online, uh, shopping, uh, delivery slot available to me was five weeks ago. So I was, I was very, very stressed at the very beginning of this COVID now I've kind of got into a system. Um, I also had to get very vocal, uh, to the public to say, you know, disabled people should not be forgotten. Um, because the concentration was all on people over 70, there was nothing about people with, uh, who were vulnerable or disabilities or single parent families because children were not allowed into grocery stores. So, um, this is how you connected with me because you happen to see an article isn't that right. Um, and I vocalizing the, the challenges for, for people with disabilities. So, um, thankfully now things are a little bit more calmer, restrictions have lifted, I'm back out playing golf. Um, so that's good. So it was just myself and my guide to play at a tee time, uh, while everyone else has to play three ball or four-ball. It's just myself and my guide that when we play, it's just the two of us on the golf course. So I feel very safe with her because she's a nurse and she totally gets my concern and I totally get her concern, um, as well.  

[Carol]: So we want to keep both our families safe. Um, you know, just, I suppose we come back to the absolute basics with COVID because, you know, our primary needs are food. Um, and anything for heat, like we're, you know, we don't have the climate like you guys have in America at the moment. Uh, it's very gray, it's overcast, it's been raining. Um, we've actually had the heating on. Um, so it's, it's been a life of, uh, being confined in doors and, um, it was also the first time. It was a very good time for me to get out and work in my garden, which I have avoided for, uh, since 2001, basically. So yeah. Yeah. So, uh, yeah, my garden finally got to know me and I finally got to know my garden. I still don't know weeds from flowers, so, but if they look nice there, so  

[Doug]: Right. That's yeah, that's all that counts. Um, you know, I guess, you know, I loved Ireland. I actually got a chance to go there when I was, maybe 14 and it was beautiful, but I don't want to upset you by telling you that it's like, basically like a sunny, like 80 degree day every day over here in Los Angeles right now. So we probably have slightly different climates to deal with, like you're saying, but, um, but no, thanks for that overview. And you know, I kind of love just the, you know, obviously there's a lot in this that is unifying all of us. A lot of what you described is pretty similar to the trajectory over here, except unlike you where things are seeming opening up over there, specifically in Los Angeles, where I am, things are actually starting to pull back and close down again, because there's a resurgence after attempting to open up.  

[Doug]: But, um, I actually just loved the terminology of cocoon, maybe it's cause I'm so, so, tired of hearing quarantining or, or, you know, sheltering at home or the terms that we use here, but there's something a little cozier about cocoon that you're using there that I just, that really stood out to me that I really loved. So that was interesting to hear. Um, but again, really want to get into really, I'm really glad, I know very little about golf and my golf swing is horrible. So I'd love to hear a lot more about that from you, but first kind of before we get there, I'd love to just take, walk things back a little bit. I'd love to kind of hear, um, your, what, what, like what it was like growing up for you in specifically kind of, if you could just quickly take us through your journey of, of learning that you were deafblind.  

[Carol]: Okay. Well, once upon a time, um, I was four years old and my mom noticed I wasn't speaking properly. I would say, you know, strange sounds for normal words. And she kind of worked out that I was lip reading. So after a few tests, it was confirmed that I had hearing loss. So I was given a brand new shiny hearing aid, which was one of these nickel boxes, silver boxes that you clicked on into your clothing and a big, huge wire. And it would just there. And it was, you know, I hated it because every time I went to run, the box would fall out and the wire would come out. And at one point my hearing aid fell down a drain. I was delighted. I didn't want to rescue us, but my teacher spent a lot of time trying to fish that box out of the drain and she succeeded.  

[Carol]: But anyway, um, then, uh, when I was 10, my mom noticed that when I would come from outdoors, when the sun was shining yes, to some does shine. Um, but when the sun was shining, I would sit inside on the bottom step of the stairs and just wait about 10 minutes from my eyes to adjust. And then I would struggle with night blindness. I couldn't see in the dark. So my mother decided to have this investigated and to her horror, she was told by a prominent specialist at the time your daughter is going blind. You need to send her to the school for the blind. Um, and that was the manner in which she was told, um, horrific, quite horrific. So my parents, uh, decided to not tell me about my diagnosis. Um, the diagnosis at that time was retinitis pigmentosa, RP for short. And, um, they decided not to tell me because they felt I was having a hard time in school because of my hearing loss. I used to be always teased and laughed at because of my hearing loss in school. So, um, so they didn't tell me. And then I went through my teenage years thinking I was clumsy because I wore glasses the time. And I thought, you know, I was shortsighted. So I just thought you don't see at the sides of your eyes, you don't see in the dark. Well, I never thought about it. I just didn't know. So I didn't think about these things. So, um, I always just, you know, my little accidents falling over, I always felt I was clumsy and that was the way I looked back in my teenage years. Um, so, uh, when I was 21, I was experiencing a lot of, um, migraine headaches and, and my doctor was getting very concerned, um, and needed, you know, needed to have me admitted into hospital.  

[Carol]: Um, when I was in the hospital, they, there would be a lot of hush talking behind the curtains. I wouldn't know what was going on. I couldn't hear. Um, but my parents desperately didn't want me to know about my RP. And so a couple of months later, I had to go back and have a checkup with my doctor and he says, um, I'm going to tell you something, um, you have, RP um, which means you are going to lose your sight. Um, and that was it. So I remember the long walk home. Um, I remember looking at every bit of dirt on the pavement thinking that's the last time and going to see that, you know, what am I going to do? Um, I'm not going to see this world anymore. And it was a horrible sense of panic walking home. Um, so when I walked in to my parents, I just said, adopted just said, I have RP. And my parents were brokenhearted. And they said they didn't want to tell me because they wanted to know that there was a cure or treatment first. So anyway, um, I I'm always a person that likes researching. Uh, there was no Google in those days, it was microfiche and it was libraries for research and encyclopedia. So, um, I took a trip over to New York where my cousin lives, she just lives in New Jersey and Dumont, New Jersey. Um, I stayed with her, she would drop me off at the library every day. And I would go through all the microphages to, to find where was research happening. And I actually traveled to Baltimore and I met a lovely, lovely doctor called, um, Dr. Finkelstein, I think was his name. And he just said, you know what?  

[Carol]: I think you do have this usher syndrome. Um, it's not just RP because once you have a hearing loss and if you have more PE than it's, you know, it could be a usher syndrome. So we're when, uh, back home to Dublin. And, uh, I said to my dad, we need to find out what this is about. So we traveled to London and it was there that I was clinically diagnosed, diagnosed with usher syndrome. And that was it until about five years ago, I actually got my genetic diagnosis. I actually had to confirm that I had type two. Um, so yeah, it's been a very long hole, you know, just trying to find my actual diagnosis. But aside from that, I just threw myself into fundraising. I used it as an excuse to do anything I wanted, you know, when I was 21, I was a very, I was very shy. I was very introverted. Um, I didn't really do much, but once, once I knew what was happening to me, I decided, right, this is the time to live. And I was jumping out of planes, some parachute jumps. I was cycling on a tandem all around the state of Florida and then all along the East coast of Australia, Israel, um, I went trekking in the Himalayas. Um, yeah, I just did some crazy stuff, you know, but had a great time and managed to raise a lot of fundraise fundraising for research. Um, so, uh, as I was approaching thirty, I became the youngest chairperson and the youngest female chairperson in, and still have that kind of claim to being, um, to this date of the Irish organization called fighting blindness. It's the equivalent of foundation fighting blindness in the U S um, so I was involved very heavily involved in my charity work as a chair person. I did quite a lot of work. And then it got to that point with my vision, just deteriorating, more, I thought, uh, this is the time to step back and think about my career. So I embarked on a degree in psychology and I might just add like, you know, I had got married and then I got divorced in that time as well. So that didn't last, but I'm all good. Oh God. Um, so  

[Doug]: Yeah, just for a moment, I'd love to go back, um, to that part of your story where you're talking about your, your parents, knowing about your diagnoses. Well, before you did, um, you know, now I'm sure you had your feelings about it then, but now as a parent yourself, looking back at that moment, how do you feel about that? Like, how do you feel about the decision of your parents to, to withhold that information from you?  

[Carol]: I totally respect and understand. Um, they really wanted me to live life as normally as possible. And, you know, in those days with no internet, um, not, uh, having any sort of hope of a treatment or any sort of research, because there was very little research being done at that time. Um, it really was not a good time to kind of know about my condition and they really wanted me to live and be myself to do, you know, to, to develop myself as, as Carol and not as camel with usher syndrome or retinitis pigmentosa at that time, they only knew I had an RP. So it was only like when I found out and have that subsequent research trip to New York, that, that usher syndrome came into the equation. So I can understand it. I can respect it, but in this modern time with the power of internet, with the power of social media, like I had made friends all over the world, especially in America.  

[Carol]: Um, I hope a few of my friends have tuned in today as well. Um, but they're, you know, I think it's important that parents do tell their children if there is a diagnosis when they're young, that the children know now because, you know, technology, social media, the power of the internet has done so much to become a wonderful supportive environment, sometimes toxic, but mostly supportive environment, um, that you don't feel alone in your diagnosis. Like, I mean, it's just syndrome is a very rare disease. So, um, they estimate that there's around 170 people in this country. Uh, three people I know very, very well in, in, uh, one of them is my best friend. So, um, hi Debs, if you're watching. Um, but yeah, um, I would say, you know, town, it's important that the child knows or whatever age you are, if you're young, that, that you do know, because like there's so much support networks out there now. Um, there wouldn't have been anything at the time, you know, at the time of my original diagnosis, there wouldn't have been any support framework. There's like, I mean, there's no care, there's no dedicated care pathway in Ireland for deafblind people. And there's, there's no organization, um, that, you know, is, is about, there is a residential, uh, charity called Anne Sullivan foundation. Um, they do residential support for their, their community, but in terms of, you know, other kinds of support networks for people like me in my age group, um, or in the working age group, there's, but there's nothing really out there, but I'm working on that and I'm campaigning for it.  

[Doug]: What, so you, you talked about, you know, finding out about your diagnosis and that kind of molding, or helping start to shift a shy 21 year old young woman into this more adventurous spirit, trying to kind of take advantage of things. Do you, do you look back at that now and in any way, maybe not this specific mode in which it created that change, but do you look back and in any way, are you thankful for the kind of adventurous inclinations that, that diagnosis gave you as far as what, what you ended up doing as a result of it? Is there any element of that?  

[Carol]: Oh, I would not change any aspect of, or anything that I did. Like, no matter how crazy some, some activities where I won't even mention them, but yeah, I just, I kind of felt a lie, you know, it's very difficult to explain. Um, yeah, like when you're falling out of a plane at 120 miles an hour, um, you know, your nostrils are going like, you know, uh, mad, uh, speed. Uh, it's, it's, it's an, uh, I can't describe the experience, but I can still feel my heart, my heart, my heart is pounding now just describing, you know, falling out of the plane. Um, the only thing I would change is I would have just eased back on the panic. Um, I had this awful sense of panic. I think it, Oh God, I'm never going to see this. I'm never going to be able to do this.  

[Carol]: You know, I've got to do it now. I've got to do it now. And it's just this urgency, this pressure. And, you know, um, when I'm doing one thing, I'm thinking, okay, what am I doing next? And it was always about what was what's next? What's next? What's next? Because I felt time was against me. Um, if I knew then what I know now, maybe I would have just taken things a little bit slower and I would save it them and enjoy the experience a lot more. But like every experience was fantastic. I just would've liked more of it if I wasn't just so thinking, Oh, what's next. What's next?  

[Doug]: What do you think you could do? Can you think of the moment or moment in time where that started to shift for you where you weren't like, say as panicked or weren't feeling so much like you're living into the future every moment?  

[Carol]: Um, I think, uh, I think a turning point in my life, um, was when my son died in my arms and that was pivotal. Um, I realized how precious life was. I realized how precious every breath we take. Um, and, and for me, that's when I kind of started to calm down and just breed and be in the moment and become, and just accept what comes my way, because like, I've had a lot of loss in my life. Um, the death of my father, um, my marriage ending, um, my son dying and, you know, I'm losing more and more of my vision, my hearing, and you know, what these, these, I suppose having Usher syndrome is very minimal compared to the other losses I've had. And so I just, I value life. I value every moment and that's all I want to do is just to enjoy every moment. Like even when, just simply washing my hands or when I'm cutting food or just get the smell, get the taste, you know, really just not to be passive, just to really experience everything, um, that happens in my life.  

[Doug]: So is it, is it fair to say that the, the, the panic that, that, that diagnosis initially induced ended up actually over time combined with some other real significant loss in your life plays a large part in you now very much having the opposite of spirit experience of being able to live in a very like present and, and largely grateful for the moment kind of place. Is that fair to say?  

[Carol]: Yes, absolutely. Because you know, like five minutes, five minutes ago, we were in the, now that's gone, we can't get those minutes back. So we've got to make sure that we are present to the next five minutes and, you know, for, for all our time to come, um, because like sometimes you say, Oh God, what did I do yesterday? I can't remember what did I eat yesterday? I can't remember. That means you weren't like, we're not being conscious of what we're doing, or we have a lot of stresses and everything. But, um, the other part of me as well as is like, um, you don't like re we have a lot of challenges. Okay. Normal, everyday living challenges and carpet is the same. Um, but I think, um, it's important to remember like you can't problems take over. Yes, we have to look for solutions. I'm, I've, I've always had that philosophy. There's, there's no point in focusing on the problem. You just focus on the solution, um, because problems and negativity robs us of our time and we never get this time back.  

[Doug]: I want to touch on that a moment. I'm sure your, your approach as far as, uh, focusing on solutions and also being very present, certainly serves you in your golf game, but let's take a quick pause for the interpreter switch. Okay. And all right. All set. Great. So picking up from there, let's, let's get to golf. Um, why don't you just let everyone know first, how golf came into your life and when you started,  

[Carol]: I hated golf all my life. And part of it was because my dad hated golf and my dad said, I'm not retiring. I don't play golf. I don't want to play golf. So he never got to retire. Unfortunately he died before he actually got to, to enjoy retirement. So, um, my daughter was attending longer hours at school and I thought, well, okay, this is the time now for me to find a hobby for myself. Um, and I was, I just Googled blind sports, um, the internet, and I saw tandem cycling and I thought, no, I've done that. I saw hail walking. I've done that. Um, I saw swimming and I thought, Nope, I can't swim. I don't like water. So no. Um, I have done water skiing by the way, as well, even though I hate water. Um, and then up came golf and I thought, I don't know, but I look at it anyway for research so that I can tell other people about it. Then I clicked on the, the blind golf. And, uh, I discovered there's a golf clinic just up to vote for me. And I thought, okay, I'll go along. I'll just research it. And then the next thing, um, I really, I got such a lovely, warm welcome from the boys, uh, of Irish blind golf. And the coach put a club in my hand and says, right, you just do keep hitting a ball this way and see what you think. And I was kinda off, I don't really want to do this. And so, yeah, I hit a few balls, not so bad. And then, um, the next thing was, I just said to the guys, are there any girls in this, you know, society? And they said, no. And then I thought, okay, well, I'm going to have to address that balance and join and do something for the women.  

[Carol]: So, um, and then that's it like I got hooked, and this was like five years ago. So I got completely absorbed in the game so much though that like, you know, I use the golf swing in my mind for like, if I'm, uh, I had surgery about four years ago and I was having all these staples taken out. And, um, because they had impaction, the surgeon had to do, uh, you know, withdraw the fluid around my scar. And that was, I was hyperventilating. And she just says, just focus on something you enjoy. And so every time she took out a staple or stuck in a needle, I was thinking of swinging a club. So yeah, that's, that's the extent of how much I love golf.  

[Doug]: So, um, you know, I'm sure you get this question all the time, but what do you say when someone says, how does someone who like, probably can't see the ball as well as like your average golfer? How does, how does someone like that play golf where the assumption would be that it's all about hand, eye coordination? What, what's your response to that?  

[Carol]: I go by feel, I, I have very, very little vision. I just have pinhole vision. Like the normal field of vision is 180 degrees. I can't see my hands. Like, you know, when they're right in front of me, they just have to be just around there is where I just had. I don't even see all my fingers. I have like three degrees of vision. So when I'm looking at the ball, I don't see all of the ball, I just see white. Um, and then, you know, I don't see it. I, I bring back the club and I hit through, I don't know where the ball has gone, so I have a sighted guide. Um, three says her name, and she just watches where the ball goes, brings me up to the bowl. She sets me up to make sure I'm going to hit the ball in the right direction. And, um, that's it, it's like we just go around chasing the ball, all around the golf course.  

[Doug]: So just, just to back up on the mechanics of it for a second, just when you, like, when you're set up to, to swing and hit the ball, like are, do, are you, are you using your vision to focus on the ball? Are you, are you looking at the ball when you hit it? Are you, is that like, just, just trying to get a better sense of the mechanics there?  

[Carol]: Well, what I do is I look at the ball, like, my guide, she'll put down my white cane and she puts it down. So I know that I must, must, um, parallel to that. I know that the direction that the pole is going to go in, um, and then I will locate the ball sometimes I don't. So, but I, I locate the ball and I look at that ball and then I just adjust my setup. Um, and then my guide, she will just me one more time to, to make sure my shoulders are in the right direction, feet or in the right direction club is correct for addressing the bowl. And then I just hit the bowl and that's supposedly it should go straight.  

[Doug]: And so, again, as someone who's not a golfer myself, um, and is certainly like had my forays at the, at the range and the driving range and had, you know, varying degrees of success hitting it. Okay. Um, one thing that I do see in my friends and other people that play a lot of golf is this like ever, uh, this everlasting, um, like, uh, uh, attempts to master the swing. You know, I see people they're like just in their yard, practicing, you know, with a club and no ball, or not even having a club in their hand. And just kind of like going through the motion, uh, what's what's the process of like, finding your swing and perfecting it been like for you?  

[Carol]: Well, uh, for me, I have to do this. So when I do this, I have to be on my shoulder, come under my chin. I have to keep my left arm straight, and I must keep my right arm and as close as possible, like, pretend there's, you know, a towel under your arms, so you don't bring your right elbow away. Once I keep that, you know, position of the shoulder under my chin, my arm straight, and then I come down and then keep the arm straight. Um, you know, I, I don't even look at the ball when I hit it. I kind of just glaze over sort of like a trance, and I just make sure that I turn my hands back, you know, to make sure that the club is going to be straight and, and nuts, you know, sloppy, um, and hit the ball and just do my finish and then pretend to know where my ball has gone. But no, I wouldn't know where it's gone. Um, but it's like a ballet movement, or a yoga movement. Um, you know, I, I, I suppose for me, the goal is not just about hitting the ball. It's just that moment that you're just connected. Every part of your body is connected to execute just one swing. And I mean, it's not just one big swing, it's all. So, um, like, you know, this pushing, um, if anyone heard our language, they wouldn't not have a clue what we're talking about because I, you know, trees will say, okay, we're about, you know, five paces away from the flag pole and I'll say, okay, are we going to do a three step glow or a three step punch? And then, you know, we have all these and she'll say, Oh, no, it's just a toddler. You know, we, we have this really funny language and, uh, all my golf clubs have names.  

[Carol]: Um, my drivers called Cal, I used to, um, I used to say, you know, family weddings or funerals, and they say, Oh, have you met a mom? Yeah. I would say, Oh yeah, yeah, yeah. Well, what's his name? And I said, cow, because it's Callaway driver and I would say cow, and then, um, and they say, Oh, what does he do? And I say, he's a driver. So, and then I have a three wood, which is a, is a Cobra King. So I call that one Elvis. Um, and then I have this, uh, seven wood, which is my favorite, uh, fairway club. And she's called a lady because I hit like lady when I swing with her. So yeah, I'm a bit mad about it.  

[Doug]: Yeah. I love that. I mean, you spend a lot of time with these clubs that I'm sure they start to feel like, uh, you know, dear friends or more, but, um, so, you know, you were, you were taking us through obviously, um, with your guide, you have, I'm sure have had a lot of time to really fine tune your language in your approach. Um, what was that process like getting there though? Was it, is it something that kind of like, did it take awhile to kind of get your groove around that?  

[Carol]: Yeah. Yeah. It took a long time, you know, because I mean the most important, and it's got to be 101% trust, absolute trust that in the beginning, you know, sometimes trees or might just forget and should be walking on because we always have to keep moving on the golf course. Um, and, uh, she'd take off and I'm following behind her. And then I just decided to kind of go not behind her and just kind of walk to the right and the next thing I'm in a bunker. So, um,  

[Doug]: Sand traps, when they refer to like sand trap that gives it like a whole new, the trap part, gives it a whole new, like, you know, meaning behind that.  

[Carol]: So, um, but look, you just, you have, you have to laugh at certain situations. Um, um, and it's important to have, um, and to really enjoy the game, like, yes, I can be very, very competitive. Um, you know, but I, I don't like to be under that kind of pressure, but Theresa was, I think what cemented our partnership because we are a partnership, I'd always say we won. I, you know, I never say I won. We won because Theresa is very much my eyes. Um, my guide and my protector, because, you know, if somebody hits a stray shot on his hand heading our way, she, she just pushes me out of the way, you know, or, um, uh, back in 2017, uh, I was very heavily involved in organizing the Irish Blind Golf Open. And, um, and then I was taking part in, in the competition as well as organizing it. So that was, you know, I wasn't getting much practice in and, uh, it was, it was tough going. And I remember, um, the second day of the tournament, I, I just seem to have three bad holes and I just thought, I'm going to lose this. I'm losing this and trees, are she just, it's her actions that speak louder than words? She doesn't say anything. She just, um, between the ninth and the 10th hole, she just pulled the boogie up in front of a tree. And she just said, I'm leaving you here for a couple of minutes to do what you need to do. And she knew he knew what that meant, that what would happen then of course, I burst into tears and I've got, I have to do this. I can't go back into my daughter and my mother and say, no, I had it so close because, you know, I was in the lead at the time. And I just knew I had to really put my heart and soul into it. And yeah, I, it, it was the winning clinch because if Theresa hadn't done that for me. Uh, given me that moment to release all my stress. Um, I certainly would've carried on playing bad, but it was a game changer just to have that release and then hit the 10th hole and hit it biting and running home to win the cup.  

[Doug]: I love how you've, you know, you've taken golf, which to me as an outsider, seems like the ultimate solo sport, and really like made it like a team sport in a sense.  

[Carol]: Yeah. It is a team sport, you know? Um, well, especially when you, when you have, Usher syndrome, you know, or even visual impairment or, you know, I think it's, it's, it's not a solo sport. You, you, your mind game has to be absolutely intact. And the only way that can be intact is when you have the support of others around you, because it really isn't, it's, you might be so low in hitting the ball, but everything else in, in that golf game is, is to do with everyone around you and having that positive impact and making sure your, your mental game is intact.  

[Doug]: Well, um, let's get back to the winning part of it. Cause it sounds like you've done your fair share of that. What have been some more of the, uh, of your personal highlights,  

[Carol]: Um, with golf?  

[Doug]: Yeah.  

[Carol]: Um I went on to, uh, well, before the Irish open in 2016, I actually, uh, won my class in the Austrian blind golf open. And that was a little bit of a challenge because I went from Dublin to Boston and then, uh, because my, a very good friend of mine had died. I flew in for her funeral. Um, and then her funeral was on the Sunday. And then on Sunday night, I flew over to Austria and then, uh, went straight into competition Tuesday and Wednesday. And, uh, yeah, I, I won my class and that, that was very special. Um, then the Irish opened, uh, in 2017, the British open in 2018. And then, uh, this year I've been selected for team Europe for going to, sorry team America, you're going to lose. We're gonna, team Europe and team America are playing at the 25th Phoenix cup in Scotland in September.  

[Carol]: Um, and it's an international disability golf. So, um, it is my understanding that I'm the only visually impaired, uh, lady golfer. Um, I know that the captain is visually impaired, but I, I don't think there are any other visually impaired golfers in the, uh, tournament. There are all different types of disabilities, um, being represented in this tournament. So it's going to be really special experience. I, um, to take part it's the equivalent of the Ryder cup. So that's, you know, I, I played in a, uh, in an Irish team against Scotland and the Celtic cup a few years ago, and that was a really incredible experience, you know? Um, so yeah, I'm really looking forward to the Phoenix cup in September.  

[Doug]: That's really interesting. So in, in that, um, in that tournament, um, is there a certain way in which they like account for the diverse spectrum of disabilities, of people with disabilities that are playing, or is there, is it just, how does that work?  

[Carol]: There'll be a people without limbs, there will be wheelchair golfers, there will be people with intellectual disabilities, all, it's a very inclusive tournament, which, which is what I absolutely love. I have no time for, uh, exclusive, uh, tournament. I prefer anyone that can join anyone that can play in a tournament that that's my cup of tea. Um, I, I, um, actually have something very, very promising and time to come. Um, there is an organization that for blind golf, but it's only for a certain type of visual impairment. So my type, anything with tunnel vision, they're not eligible to take part in their tournaments. So, um, I, I don't like inequality. So, and as I say, I never looked at the problem. I look at the social. So I'm in the process of working on a solution, white men. Um, so if anyone is interested in playing golf, you know, do so now, because there's something very exciting to come in, uh, the next couple of years.  

[Doug]: Well, you're, you're certainly inspiring me to like, uh, go to the driving range. And I feel like that's like probably one of the few activities that's like acceptable right now in Los Angeles. So maybe, maybe I'll do that this July 4th weekend. Cause there's gatherings are certainly not going to be an option, but I'm wondering, you know, with this time with about the 10 or so minutes, we have left, I'd love to also talk more about the advocacy work you're doing. We've certainly touched on that to some degree, but can you tell, can you tell me a little bit more about that?  

[Carol]: Yeah. Um, you know, Ireland, like I've said, just earlier, um, deafblindness, isn't recognized as a unique disability and because of that, there is no unique, uh, or what would you say there's no care pathway or people with, um, with deaf blindness. Um, and so this needs to be addressed like at the moment, the way, uh, I manage my healthcare as you know, I, I go to an audiologist to make sure my hearing levels are, are okay. And then I go to a retinal specialist, you know, to look after my eyes. So I'm the one that has to process the information that both, uh, sectors of the, um, audiology and, and, uh, ophthalmology. Um, I'm the one processing the information and then having to kind of make decisions about my own, like, well, what am I going to do about cochlear implants as an option, or, you know, I, there's nobody in the health, uh, sector helping me to coordinate my care, uh, for, you know, as usher syndrome, it's a progressive disease.  

[Carol]: And, um, usher syndrome is the most common form of, uh, deafblindness in the working population. So even though it is a rare disease, it still needs to be taken care of. And, um, so my advocacy works around that, um, as well as creating awareness and reminding, uh, people at all levels, um, even children teaching them to be aware of, of people who, uh, uh, visual impairment or deaf blindness or even deafness. So I try to, um, I'm not exclusive about Usher syndrome. I just tried to create, create awareness about, you know, hearing and sight loss. Um, other aspects of my advocacy as well is I would love to see, um, a patient registry, but usher syndrome. And, and I'm working on that at the moment, um, with some really lovely people in America. Um, and, uh, this, the importance of this patient registry is to, to take care of all the, uh, aspects of him with usher syndrome, that's, uh, hearing loss, sight loss. And for some people, they have a loss of balanced. So we need a registry to find everybody on this planet, and then we can promote research. We can inform governments, national governments, um, about their policies and a health education, um, work practices, you know, without this information, we, you know, we can't expect, um, the national governments to actually understand what we need to be able to function fully in service of that in society. So that's, that's, um, another thing, um, I've just completed a summer school, which, uh, is centered around European, um, rare disorders, uh, and, uh, that that's very important work, um, to be involved with because, you know, with, uh, clinical trials and drugs that are, may come on stream, uh, to treat some aspects of, of usher syndrome, um, they have to come through for approval. And I would like to be able to advocate and say, hang on a minute, you know, this isn't right. You know, and I make sure that our patient community is, is, uh, treated safely and with respect and, and, and also to make sure everything is accessible, uh, for communication, um, for medical leaflets or explaining trials or anything, to make sure that all aspects of a medical trial or a drug product is, is communicated effectively, uh, for people with deaf blindness to understand. Hope that makes sense.  

[Doug]: That makes a lot of sense, you know, just to back to the, when you're talking about getting the government to understand, and just getting other people to understand, you know, so much of ad gives his advocacy work in any lane is really getting people to truly understand in a way that like affects change. Right. I can imagine with, um, you know, uh, something like deaf blindness, which is a fairly low incidence compared to a lot of other, uh, a lot, a lot of other things people advocate about that there's maybe a lot of people who don't know anyone is deaf blind, who has never really heard about, uh, you know, heard directly from someone who's DeafBlind, what is the process like and how difficult is it to get people to just really, truly and deeply understand and empathize with your position and with the community before you can even start talking about various things that you would like to change policy or otherwise?  

[Carol]: Well, I think, uh, you know, you just start off very basically, and just, you know, and it's, it's, it's, I I've actually spoken in front of a, uh, uh, government committee, uh, back in 2015. And that's when I started my, uh, campaign to get deaf blind recognized. And I just, you know, this is just a simple opening dialogue is close your eyes. You can't see anything, but your fingers in your ears, you won't be able to hear anything. And I think it's just those just that little moment can, you know, and then you give examples what happened to be, can't see, or hear a little baby crying, you know, simple things. Um, because after all, all these people in, in government, in politics, they're all human at the end of the day. They're not superior to us, but we just need to bring them back down to the basics and just say, what happens if you couldn't see your hair, your baby crying, you know, some simple, simple little things.  

[Carol]: Um, and, and then you just, you explain, uh, what I just explained about what Usher syndrome was. I explained what my challenges were or in that I have to take care of my, um, I have to take care of my, uh, health, you know, I'm managing, you know, what my audiologist and my ophthalmologist are telling me, I've nobody to advise me it just giving me examples. And you know, what, if you show just what it's like to live, that's, that's all the message really, you need to convey. I mean, you can come along with statistics and data, but at the end of the day, these people are human and you have to get to them. You have to communicate to them at a very human level and tell them what you need, because they're not going to know what you need. You have to tell them that this is what we need in order to be able to function fully in society, to participate in society, because we have equal rights to participate fully in society.  

[Doug]: I, you know, I love, I was just taken with the simplicity of that last part. You know, advocacy can include so many things and get somewhat complicated with dealing with various entities and different policies and different politics, but just boiling it down to, you need to tell other people what you need. Becausse they're not going to just know what you need is really kind of like the heart of it. And I just, that kind of echoed in my ear when you said that part, because it really is in a lot of ways that simple, right? And then it's just...  

[Carol]: Well, yeah, you, you know, we be the solution, not the problem. Yeah. You know, because you're the expert, you know what you need, you you're, you have the solution, they don't, they didn't, they've no idea of what it's like. And, and so therefore, whenever, if you are advocating at your local government level or with any organization with your workplace or your school, all I'm saying is when you're going to say, listen, this is missing. This is what I need, you know, be the solution rather than be the problem, because, you know, they, they just don't know what to do. So you're the expert, you're the only person that can be the expert in this situation. Okay.  

[Doug]: I love that. Um, and with kind of the remainder of the time we have here in the last few minutes, I'd love to talk about the topic of, you know, you, you really eloquently took us through your personal journey of, you know, first just thinking you were clumsy, not knowing about your diagnoses, to finding out about it and having it really change your life in kind of almost manically wanting to do all the things at once that you might not be able to do at another time. Um, and then having that, like panic, as you described it kind of combined with some other great loss you experienced in your life, ultimately gift you with this much more, uh, present and grateful place from what you, you live. So obviously you've had quite a journey yourself. A lot of, you know, obviously, um, deaf blindness has played a large part in that, but now as someone who's, you know, obviously the, you know, the deaf blind part of your life is really just one part of the many different things that you've already shared that make up your daily life as a mother, you know, as a daughters and caretaker of your mother as a golfer and as an advocate and all these other things you do, what's it like having this obviously really, um, diverse life versus dealing with other people's perceptions and perhaps of wanting to, of being incapable of seeing beyond say the deaf blind part of you, or having to deal with that, how would, how would you speak to that?  

[Carol]: Well, I always say I don't let my usher syndrome define who I am. I am me at the end of the day. And usher syndrome is just, dictates how I live and how I communicate. It doesn't dictate how I am as a person. Um, and, and I think, um, if anything, I, while I appreciate people's sympathy, like, Oh, poor you, I, it makes me want to work harder more to kind of prove I am normal. I am human. I am, I'm no different to a fully sighted and a fully hearing person. I have no different, we were all the same, you know, it's, it's where humans at the end of the day. And, and I just like, we have the, we all have the same experience, even though some of us see some of us, don't see some of us here, some of us don't here, we can all feel the rain on our face. We can all feel when we have our water and our soap in our hands. We can all feel that that does make me different from anyone else. And that's something I wish I knew when I was 20, 21, 21, uh, in my earlier years. I wish I knew that. Um, and I wish I was aware of that instead of being this panicked, Oh, I got to do this before I go blind. I've got to do this. You know, I, uh, yeah, all I just say is, you know, if, if, if you're trying to make somebody understand that you're not so different that yes, get blind, just meet makes you communication different. It doesn't make you a different human being just say, feel the rain on your face or feel the sun on your face, or you're all in sunny country. Yeah. Right.  

[Doug]: The sun might be more applicable to us in Los Angeles, maybe the rain a little bit better for you in Ireland there. No, but I love that so much. And, you know, thank you so much for sharing that and certainly have so much more, I'd love to speak with you about we're at time today, but I hope so. I hope you'll come back. Maybe you'll, we'll get to connect after your upcoming tournament and hear how that goes. You know, now, like I don't, I can't say this because it's July 4th weekend. I can't say that I'm rooting for you because that would just be bad timing, but I will say, maybe secretly I am, and I'm certainly wishing you all the, all the best in that upcoming tournament there, and certainly would love to please do let us know how that, how that plays out.  

[Carol]: I will. Absolutely. And thanks so much for everybody to tuning in, and I'm just want to say thank you for finding me and connecting me to, to everyone that's tuned in this evening, enjoy your holiday weekend, and I will see you in the fall. So we say, autumn. I will see you in the fall, after the tournament.  

[Doug]: Absolutely. And do you want to, just for anyone who's watching right now and might want to, you know, follow your journey or know more about you, is there a good way to connect with you?  

[Carol]: Yeah. Look, um, you will find me on Facebook. Just send me a message first, because I I'm very careful who I make friends with, but I would love to be friends with you. Send me a message and just say, you heard me tonight and, uh, and you send me a bit Facebook request or I'm on Instagram, CarolBrillIreland and I'm on Twitter, @CarolBrill. That's it.  

[Doug]: Awesome. And I also want to say that, um, do you know Donna McGlinchey? She said she knew you. So Donna, who's watching right now. Hello, Donna. She, when she saw that we were going to be speaking today, she was really excited because she said she had the opportunity to meet you. Um, she's uh, in Northern Ireland and she's also been someone who's been an amazing supporter of this and tuned into all our episodes. Uh, so she she's watching right now and, and, and says, hello.  

[Carol]: Hi Donna.  

[Doug]: Well, again, thank you so much, Carol. We'll certainly, I'm looking forward to connecting with you again soon. Thank you everyone. And thank you everyone who joined us today, again, just a quick recap. If you're watching on YouTube right now, right after this broadcast check out on our homepage, there's a, uh, already up there is a reminder for our upcoming live stream on July 16th, that's going to be this amazing live stream of The Feeling Through Experience and also in celebration of ADA 30. So that's going to be great. Um, if you're watching on Facebook, make sure you head over to youtube.com/feelingthrough subscribe and set a reminder as well for that event. Because it's going to be great. And it's, that one's actually only going to be on YouTube. So for our Facebook watchers, make sure that you check it out over there. It's going to be fully accessible, like we always do it. And uh, yeah. How about everyone have a safe but enjoyable July 4th weekend and we'll see you next week. Bye everyone. 

Feeling Through Live • Episode 11: Transitioning From Deaf to DeafBlind Culture

 

[Doug]: Welcome to episode 11 of Feeling Through Live. Today, we're joined by Chris Woodfill. Who's been a guest in the past today. We're going to be talking about his transition from Deaf to DeafBlind culture. And Chris, I don't think there's a better way to start this conversation then to take us all the way back. Uh, I know you, you grew up in Wisconsin. Why don't we, why don't we start there at the beginning?  

[Chris]: Hi everybody. I'm really excited to come on today to share my experience. My life's journey from being a deaf person to a DeafBlind person. I was born in Wisconsin. There are six of us in my family, so it was my parents. I, myself, two sisters and a brother, everybody in the family is hearing except for me when I was about nine months old is when my family discovered I was deaf. And it's a little bit of an interesting story. So I'll tell you that one. Now we were in a family room, uh, doing something, playing with toys, maybe. I don't know. Um, my dad and I were opposite each other. Um, we were playing, you know, like father and son do. And my dad, my dad walks behind me and I was in the stage where, when someone left the room, I would cry. My dad walked behind me and he noticed that I started crying. He would call my name to try to let me know that he didn't leave. He was just behind me. Um, and I still cried. He got closer to me, kept calling my name, Christopher, Christopher, no response from me. So my dad thought that was kind of strange. I'm finally, he walked back around in my line of sight and I saw that he was back and I stopped crying and got all excited. And we played again. So that's what got my dad curious. And he experimented with it a few times. He would walk behind me. I would cry. He would call my name. I wouldn't respond. And then he'd come back in my line of sight and that'd be fine. Finally, he started to think that maybe I couldn't hear, he went to the kitchen, he got some pots and pans and stood behind me and bang them together as hard as he could. I didn't respond at all. You know, a baby would cry if they could hear that. And my dad knew right away when he did that and I didn't respond, Chris is deaf. There's no doubt about it. He has to be. The pots and pans kind of sealed the deal. I think my mom was out shopping at that point, or I dunno, she was out doing something. She got home. And my dad told her what he had discovered so to speak. And he said, Chris is deaf. My mom said, there's no way not possible. He's not deaf. There's been, nobody deaf in our family. How would that be the case? And she's right. There has never been anybody deaf in my family. No one else in my family has Usher syndrome. It was just me. So my mom did not think that was possible. I was on a high-chair in the dining room and my dad brought my mom into the kitchen, went behind me, did the thing with the pots and pans, and my mom freaked out. She's like, how can you do that? That is awful. That's such a terrible thing to do. She started a huge argument with my father. But my dad pointed to me and just said to her see, he didn't react. And my mom slowly but surely accepted that news and that's how they figured out that I was deaf. So, I was about one when I had that official diagnosis for the first year of my life as being deaf. There was a program, the John Tracy Program. I don't know if you know the famous actor Spencer Tracy from the '40s and '50s. And he had a deaf son named John Tracy. That's where the name of that program came from. That was an oral program. And it focused on teaching how to speak how to use any useable hearing if you had any, but that didn't do anything for me. I got nothing out of it, so my parents realized it wasn't going to benefit me at all and dropped that plan and it was on to plan B. So, another story. I grew up like I said in Wisconsin and I lived on a particular street and there was a street kind of parallel like the next street over from where I live. And there was another family there. And my mom knew of that family but they didn't really socialize they weren't friends or anything they just knew of each other. And they were a deaf family that lived a street over. After we realized that John Tracy program wasn't going to work, my mom walked me over and knocked on the door of that family's house. The matriarch of that family is named Shirley. That's her name sign, but her name is Shirley. Their last name was Volpintesta. So there were the Volpintesta family. Um, Shirley was the mom and mom knocking on the door. And my mom's side, my mom tried to talk to her and Shirley said, you know, pointed to her ear and said, I'm deaf. And my mom had this moment of, Oh crap. How am I going to communicate with this person? And Shirley told her, hold on a minute, came back with a piece of paper. And they started writing notes to each other. And my mom explained to this is my son. His name is Christopher. He is deaf. What do I do?  So Shirley got very excited and kind of took me under her wing and wanted to help my mom. But she was very excited that, you know, there was somebody else and deaf in the neighborhood and she kind of adopted me a little bit, so to speak, but Shirley explained to my mom that there's a wonderful deaf community and that there's deaf schools. And there's all these things that Christopher can be exposed to that my mom was not aware of. She suggested that my mom hire an ASL teacher and American sign language teacher to come to our home and teach my entire family how to sign. She suggested I don't, I don't know how long I was a baby. I don't remember, but she suggested that the ESL teacher come once or twice a week. And I think it was until I was about two or three and my family learned to sign, the woman who's name that came over was Edith. Last name is Smith, Simmons rather. Um, and she came twice a week, I think for two or three years. And my entire family learned how to sign once my family was comfortable enough with sign language, we stopped using for service, but that was kind of the beginning of my life as a deaf person. So I guess I'll stop there for the moment, if you have anything to ask I, before we move on.  

[Doug]: Yeah. Well, you know, I want to go back to that moment for a second. The pot and pan moment, you know, obviously your father didn't start with the bang of the pots and pans. He worked his way there when that was kind of the final test, but I can imagine this moment of him showing it to your mom and your mom, not really having that context and being horrified that, that he was potentially doing something really terrible to you. So that's just such an interesting visual moment there. I can see, you know, one parent who's already kind of come to this conclusion and the other parent that's not quite caught up yet and really just confused and horrified at what's happening in that very moment, but that really, you really paint a very visceral picture there. But yeah, that's such a great setup and I just want to take a moment to just address anyone who's signed on since we started, we're speaking with Chris Woodfill from the Helen Keller National Center, and he's really just gone back to his childhood.  The topic of conversation today is his transition from Deaf to DeafBlind culture. And he's just talking about growing up in Wisconsin. Um, his parents learning when he was a small child, that he was deaf and we're we're at that point of him, of his family learning sign language, to be able to communicate with him. And, uh, yeah, no, that's a really great setup. So, so where, w what's so what's the next step in this journey? So you're still, you're still very young, you're deaf, and, where, where do we go from here in your, in your story?  

[Chris]: So right after that, there were two things that kind of happened simultaneously. The first thing was the Volpintesta family. They had kids that were similar in age to my brother, actually let me back up for a minute. I am the youngest of a family when I was born. My oldest sister was 14. My second oldest sibling is my brother who's was a year younger. And the sister, the one who's who I'm staying with right now was 12. So my parents were a little bit older when I was born. There was a larger gap between my next oldest sibling and myself, the little than Testa family. The parents were about the same age as my parents and their kids were about the same age as my siblings. So they would play together all the time. They go play baseball, they'd go play games. When were older, we would go to parties and go to bars together. So we hung around that family. Quite often, we were invited to their family activities, we'd have dinners together. Um, and we would use sign language the entire time, which was really amazing at that point. My family signed pretty well. Um, and of course their family was deaf. So we were able to have full evenings in sign language. It was great. I don't know. Second thing is my next oldest sister, her name's Lisa. She actually became deaf when she was 17. At the time I was five. She spiked a really high fever and that caused her to lose her hearing. And she's still got to this day. Um, I do have a story. It's not the most positive story possibly, but I'm going to share, um, my mom sat me down and said, no, your sister is, has lost her hearing. She got really sick. And my reaction was to be completely thrilled. I was so excited. I was running around screaming that I had another deaf sibling. Finally. Um, my parents were not expecting that response, of course, but as a five-year-old, I didn't know any better, but I had felt so alone my whole life. And I was, you know, kind of jealous of the family around the corner because it was so cool that they were all deaf and I wanted something similar for my own family. When my sister became deaf, even though it was unfortunate, I was excited. Cause I felt like we were one step closer to being, to being a Volpintesta family. Um, by the time I was six, my all of my brothers and sisters were out of the house. They went on with their lives, they started their own families, they got married, they had children. So I kind of became an only child when I was six. And it was the same with the Volpintesta family, all their children were out of the house too. So I didn't really have them anymore, either their parents were home and my parents were home and we would still visit them and get together. But, you know, it's just a product of time moving on. Oh, when it was time for me to go to grade school, I went to a mainstream school. I grew up mainstreamed for most of my education. And just to elaborate a little bit, mainstream basically means I went to a hearing school rather than an interpreter. There were a couple of deaf classes. Like I went half time, where there would be other deaf students and the teacher would sign. And then for the other half of the day, I was with other hearing kids or the hearing teacher who did not sign with an interpreter. So I kind of split my time between those two programs. Uh, this time I was in grad school, I was at the Wisconsin school for the deaf. And I'll stop there for now, Doug.  

[Doug]: Yeah. Yeah. Definitely want to hear more about that in a moment, but I want to go back to that moment. You were just describing about, um, when you found out your sister was deaf. Um, I think that's so interesting in a lot of different ways, but you know, on the one hand you described, you're only five years old, so you don't, you don't really necessarily know all the different dimensions of what's happening at that time, but from your perspective, as you so beautifully, put it as being someone who kind of always felt a little bit on the outside. It, what this really meant to you as a five-year-old was, Oh, great. Someone else who's like much, really much closer to my experience. Someone who I can really connect with on another level that's in my family. And I think that is such a, a beautiful perspective to understand, particularly from the perspective of five year old boy, who, of course that's going to be the most, um, resonant thing for you. You're not necessarily thinking of what it means for your sister. Who's lived her whole life up until that point hearing and what she might be going through. You're you're just excited and that makes so much sense, but you know, what makes me think of another thing too, and I'd love for you to talk about this I, someone, who certainly, you know, very much on the outside of the deaf community, but has gotten a chance to connect with a lot of people in the deaf community over the course of the last few years through Feeling Through related endeavors. You know, I've learned that, and this is definitely a much bigger topic, but I've learned that that a lot of people in the deaf community, there's a very, very strong identity and a very, very strong culture there. And that, I mean, I guess kind of succinctly put, and there is a question in this for you in a moment, that what I've heard is a lot of people in the deaf community, certainly don't look at their deafness as a deficit in any way. They just look at it as how they perceive the world, which of course as anyone in their own situation would. But I think a lot of the time, what I've noticed in what the deaf community is pushing against from other people's perceptions is this is fighting the idea that they're lacking anything. Um, which again, I think any, anyone in any disability space would be, but I I'd love for you to speak to obviously the five year old boy in you was just really excited to connect on a deeper and more personal level with someone in your family and have a more shared experience. But what would you say to the topic of the deaf community, and how they, how they have to field these, these false perspectives of people feeling like they're missing something when they're actually really proud of who they are and how they communicate.  

[Chris]: There are deaf people have a very, very strong identity and they don't feel like they're disabled in any way. Being deaf is part of being a cultural minority group. They don't consider themselves part of the disability community. They consider themselves a cultural minority and in being a cultural minority, they have their own language. We have our own culture, we have our own traditions and histories, you know, all the things that, all the things that come along with being any other cultural minority. Uh, so it's a very strong community identity. When people look at draft people, they tend to look at deaf people and feel bad for them, or think they're missing out on something. And we kind of look at them and go, why are you feeling bad for us? Oh, we're very comfortable being deaf. We're very confident in who we are as deaf people. I have a very strong connection with other deaf people and I love that community and that culture. So there's no reason for anybody to feel bad for me. I'm fine. I don't think a lot of deaf people feel that way. Um, it's a little bit odd for us actually to get that sympathy from people because we don't feel that for ourselves. So, uh, it's always an interesting response when that happens.  

[Doug]: So I'd love to now go, we were back to your personal story. We were at grade school, so let's, let's pick up from there.  

[Chris]: Right? Sure. I really had a wonderful experience at the Wisconsin school for the deaf. I loved that school and it was a great place for me. I had nothing negative, really. You know, there were normal kids things that went on, people got picked on. There was teasing, there was messing with, you know, things that happened at any school. Uh, but that's nothing out of the norm. What was interesting though, is that I constantly got looked upon as being a little bit different. I wasn't really like the other deaf kids. You know, my nickname at the Wisconsin school for their Deaf was Mars. Like the planet people would come up to me and say, hi, Mars, how are you today? What's going on Mars. Um, and people gave me that nickname, cause it seems like I kinda came from another planet so to speak, you know, I think we all have different gifts. Everybody's got their own unique skills. Um, but some of mine were things like a very high IQ. So I was always a smart kid. I'm not trying to brag or be egotistical here. But it's just one of the things that I was gifted, where I was above average intelligence and a higher IQ. So I've never tried to get into Mensa or anything like that. But I think I probably could have if I had tried, but it was those kinds of things that made me stick it out in school. It didn't really matter what the subject was. It didn't matter what the class was. I could read something, take the test and pass it five minutes later. I noticed other kids had to study for hours upon hours to pass tests. It was kind of a no brainer for me at school. And people looked at me like that was weird. They didn't understand how I was doing. So that's where that nickname came from. But that situation actually masked my usher syndrome for a very long time. And I'll explain what I mean by that. I was bored quite often in class because I found it so easy. So sometimes, sometimes teachers would explain things to the class two or three or four times. I understood it the first time. So the next several times the teacher explained it to me. I was busy counting tiles on the ceiling, staring around the room, counting tiles on the floor, doing whatever. And it kind of occupied my brain and get out of the boredom. The students were kind of used to me looking around the room all the time and I was never disciplined or told that I had to pay attention or look at the teacher. They kind of left me alone, left me to my own thoughts, left me and my own musings. Cause they kinda knew what was going on with me. I would daydream a lot. I would cry. I would do it all. I would read something else and I was off to my own devices with all of that, that masked my Usher Syndrome because the teacher would sometimes wave to get my attention to try to ask me something and I wouldn't see it, but they thought that I was daydreaming. What was really happening was I wasn't seeing the teacher trying to get my attention. The teacher never attributed it to my eyesight. Instead they just attributed it to my daydreaming and being on Mars, so to speak. So those two issues kind of conflated and I was never diagnosed with usher syndrome until much, much later. So it wasn't until I went to that as well, where that's the right time. It continues. I can pause right here before I get into that dog.  

[Doug]: Perfect point of pause. So actually what we'll do right very quickly is do an interpreter switch. So we'll hold one moment for that. Okay, we're all set. Great. Um, so if you're just joining us, we're talking with Chris Woodfill Um, he's talking about his journey transitioning from Deaf to DeaBlind culture. He was born deaf. Um, and we're at the point in this story where he's starting to realize that, that there's something going on with his eyesight, but we're not to the point with him really understanding that he has usher syndrome and that, that he is in fact DeafBlind. We'll certainly get to that in a moment. Um, just want to take a moment to say hi to everyone who's just joined us and what I want to also let everyone know. Um, and people who were with us last night know this and I've already started to make some purchases, but we've opened up a Feeling Through store. So if you go to feeling.com, you'll see a store button, or you can go to feelingthrough.com/store. I'll pin it on the Facebook and write it into the YouTube chat as well. And we've got some really cool merchandise there. And the really great part is not only do you get to purchase some really cool either t-shirts or mugs or tote bags, but it also goes to direct directly supporting our sponsors in Helen Keller Services and also future Feeling Through Experiences. So if you want to check that out, I'm going to put it in here in the box here, feelingthrough.com/store. So feel free to check that out. We've got some really cool stuff up there. And so Chris, I also, I want to go back, to this moment of when you were talking about how you, how as you're realizing that you, that you might there maybe is something up with your eyesight. People don't really, your teachers and peers don't really understand that. And they just attribute to like, Oh, he's Spacey or yeah. Oh, he's just smart and checking out. And what I think of is, what I I've heard a lot with, anyone who has, a peer of mine or anyone who has a child who has a disability that oftentimes, it gets mistaken for like a heavy quotation marks, some sort of like character deficiency of like, Oh, he's just way too hyper when he has sugar or, Oh, he just dozes off in class or is Spacey like these kind of, um, really antiquated ways of very simply seeing a situation and labeling it as something. Um, and I just, I just think that is applicable to all sorts of situations for people. And again, I want to get back to where we are in your personal story, but I'd love to, if you could just talk on for a moment, you know, certainly you're you are still a young man. I know, but obviously I think a lot of things have changed, around awareness and education since you were a child to today. So just real quickly to talk on that for a moment. Do you see, as someone who obviously continues to work in the field, work with a lot of deaf blind people, deaf blind families, do you see a progression of understanding and awareness around, first and foremost, identifying deaf blindness earlier on, and then also people having a more accurate understanding of what's happening with a deaf blind child than when you were a kid?  

[Chris]: Yes. There's definitely been a very big improvement. Especially to deafness. I think now like 99% of all babies born in the U S go through a newborn hearing screening. So a lot of deafness from birth is caught right away. That's very different than it was many years ago. There are still difficulties with identifying vision challenges. You can't really identify a vision challenge in a baby babies don't see clear right away. Anyway. Um, so it's a little bit hard and usher syndrome is often not caught right away. In addition to other vision issue. I think kids have a vision screenings now in grade school, like by the school nurse, you know, they go to the nurse and they're given that the, the piece of paper or far away, they have to read the letter. So maybe a nurse may detect that something is off and send them to a specialist or an eye doctor. So today usher syndrome is caught a lot younger than it used to be. Usually by four or five or six years old. There are some vision challenges that are identified and that usually leads to a diagnosis. But in my time there was no newborn hearing screening. There were no vision screenings at school, but today we have all those things to catch people not earlier, and to help identify what specifically their hearing envision is like.  

[Doug]: So we're, we're at the point in your personal story where you're starting to understand your vision more, let's pick up from there. And cause I want to definitely get to the point where you, where you, you know, really realize for yourself that you are deaf blind.  

[Chris]: Sure. Um, my senior year of high school, I had the opportunity to go to Venezuela. I went for one year as like an American field services exchange student. So I went to Venezuela for a year. It was absolutely wonderful. It's one of the most valuable, most amazing experiences I've ever had. And I loved it, but it was during that time that I noticed there was something going on in particular, something related to my vision. When I was at the Wisconsin School for the Deaf. I was so used to that campus, I was very used to being there. There was really nothing out of the ordinary, but Venezuela was a new place. Nobody knew me. I didn't know anybody. I was just kind of this transplant kid from Wisconsin and a brand new country with a new culture and Venezuelan culture is very blunt. So is the deaf culture. Deaf people will tell you that all the time. We're a blunt group of people, but Venezuelan culture is very similar. There's no beating around the bush. So people would kind of give me those bug eyes and look at me. They said, you have horse eyes. What do you mean by horse eyes? And you know, for horse racing horses get blinders on. So they don't work their heads around and use that peripheral vision, and aren't cutting into each other's lanes. They put those blinders on so the horses focus straight ahead. And that's how horse racing goes. So people in Venezuela, you know, would look at me and say, you're like a horse. You have horse eyes. I was in denial. Of course. I said, no at all. I don't know what they're talking about. And deaf people didn't know the term Usher syndrome. They called it horse eyes. They told me you have horse eyes.  

[Doug]: So it looks like we have just a little bit of a glitch here. So Chris, if you can hear me, uh, I think your Internet's getting a little spotty there. So hopefully that'll settle in a moment. Um, this is a part of the, uh, part of the, the, what you get in a live stream here. So let's see if, if this settles down for Chris in a moment, let's go back. Chris, can you see the, Internet's getting a little glitchy right now. So we're seeing if that can settle in. Cause right now you're, you're a little glitchy. Yeah. It looks like it's settling in a little bit. Looks like we're getting there yet. Let's that's looking good. All right. It looks like we're back. Yeah. Oh,  

[Chris]: I can see you just fine.  

[Doug]: Still a little choppy. It's getting, it looks like we're settling in again. Um, yeah, it looks let's. Let's give this a try again. So it started getting glitchy when you were talking about horse eyes, maybe we'll pick it up from there.  

[Chris]: Okay. Sure. So. After they had told me that several times I had no idea what it was, but, um, I started to get a little bit curious about it. Um and I started to become a little bit more aware when I got back to America after a year in Venezuela, I showed my parents, you know, there's this weird thing. They kept telling me that in Venezuela they said I had a horse eyes and my parents drove me to get tested. And also I was going into Gallaudet and Gallaudet requires it. I think at that time, what was going on, there were a lot of people with Usher syndrome going into Gallaudet and they didn't know that they had Usher Syndrome when they went to Gallaudet. So they started to require that everyone gets their vision tested before they come in. So they can be identified before they get to university. And I do have a little bit of a story about my particular diagnosis with Usher Syndrome. I went to the doctor, I always had glasses growing up. I didn't think anything of it. I just wore glasses. And I remember they would do like these light tests for, you know, it was like a couple of seconds of a white or yellow light. Uh, you know, and then I would get my glasses changed my prescription James, and you know, it was all good. You know what I is? That same chest was three minutes, five minutes long. And it started to really bother me. So I said something to the doctor that this test is too long. It's hurting my eyes at that time. It was 1993 and interpreting wasn't yet a widespread practice like it is today. There really weren't very many interpreters and medical appointments in 1993, maybe once in a while, you'd get an interpreter. But my mom was the one that was interpreting for me. And that was a terrible idea. You know, my mom went to talk to the doctor and I was just sitting there by myself. I had no idea what was going on. My mom dropped me off at my best friend's house. Her name was Amy. I said, okay, got dropped off at Amy's house. I was talking to Amy, hanging out with Amy. I hadn't seen her since we were in Gallaudet. She was then she had been to Gallaudet already. She had been there for a year. I was about to go in. I wanted to ask her all about what it was like. My mom came to pick me up probably two or three hours later. We got home and my family was sitting all around the table. Intervention style is my, my older sister. All my siblings were kind of gathered around and they were waiting for me. So something was clearly going up. My brother and my sister, Lisa were in another state at the time. So they weren't there. Um, so it was just the family that was in Wisconsin. It was my mom, my dad and my older sister. They were all sitting, waiting for me. My mom explained her perspective on what happened. And when she had told me was you have this thing called usher syndrome. They know what it was. So I said, okay. And they said, you will be deaf and blind. That was terrifying. So what do you mean I'm going blind. And then my mom explained again, her understanding, my mom said she felt like she had gotten run over by a train twice. So the first time was when I was nine months old. I mentioned my mom found out I was deaf. She said, my feeling was like, she had gotten hit by a train. She didn't know what she was supposed to do with a deaf baby. She didn't know how she was supposed to respond. And then at age 18 now, not only was I deaf, but I was going blind. So it was like the second train coming in, running over my mom. So I'm deaf and I'm going blind. My mom was completely overwhelmed and she didn't know how to handle it right away. You know, I had to try to play game a little bit and, and be supportive and tell her it was going to be all right. And, um, kind of take care of her in that way. At night, I called Amy. And that phone call really marks the beginning of my transition from deaf identity to deaf blind identity. And I'll pause there, Doug.  

[Doug]: Yeah, so you were, you were talking about that moment where your mom found out and was really heartbroken in that moment. Could you go into a little bit more about what that moment was like for you? I mean, I'm sure as you kind of alluded to, at this point, you maybe had some awareness of that being a possibility, even if you didn't necessarily know what Usher syndrome was, but what was that moment like for you personally?  

[Chris]: I had really mixed feelings about it. Now. I understand what I have, you know, so there was a little bit of, I don't know what to say, call it really, but like I always knew I had something. So now I knew what I had at the same time. I didn't want to have it, so I didn't want to have opposite of him. I didn't want that label associated with me. I wish I didn't have it at the same time. It was like a, it was finally getting a diagnosis with them thing. And I remember being focused more on my mom's feelings cause my mom was very emotional. That's the whole thing. So I remember putting my feelings aside and trying to be there for my mom. I wasn't really focused on myself at the moment I was, you know, trying to be there for my mom.  

[Doug]: So I'm curious, I just want to hear a little bit more about now that you have this diagnosis of usher syndrome. Um, let's walk forward a little bit more there cause I want, what I want to hear is a little bit more of your life post finding that out. And then with the last part of this conversation, we can get to kind of comparing your life as part of the deaf culture versus, you know, growing into your identity as, as part of the deaf blind community. So let's walk a little bit more forward in now that you understand that you have usher syndrome, what, what life was like for you moving forward from there  

[Chris]: That night when I spoke to Amy, but as I remember using TTYs before there were video phones, so we were tied into each other. There was no video communication available at all. So I told her I had Usher syndrome over TTY and she said, that's not a big deal. I have a lot of friends at Gallaudet who have that. It's no big deal. I mean, that threw me for a loop. I was like, huh. All right, well, I guess it's not a big deal. Then a week or two later, I went off to Gallaudet myself, Amy introduced me to a bunch of her friends. I'm in the process of introducing, she said, this is my friend, he has Usher syndrome, she has usher syndrome. And these people became my lifelong friends. And for them it really wasn't a big deal. Um, so it kind of became no big deal for me. I mean, we tease each other, we trip over something or bump into something and laugh at each other cause you have to, but I felt pretty good about it since then. During my time in Galluadet I really was not heavily involved in the DeafBlind community. They did have a DeafBlind club there. They met monthly, uh, you know, there was a particular room on campus that was designated. I think I went once or twice, but I felt kind of like an outsider. I wasn't really comfortable Um, it was awkward for me, so I was not heavily involved in that club. When I was on Gallaudet's campus. I wasn't comfortable with tactile at the time, tactile sign language. I didn't fully identify as a deaf blind person because I still had enough vision. The identity of being deaf blind scared me a lot still. So it was something I kind of swept under the rug and kept my identity as a deaf person. I hung out with a friend who had usher syndrome because we were the same age and we had similar vision things happening. Um, but I didn't really embrace my identity as a deaf blind person. When I was at Gallaudet, after I graduated, I went, came back to Wisconsin.  

[Chris]: Let me back up. I want to, I want to go back to that story that Edith, the woman who taught me family sign language. So again, it's Simmons. She was the one my family hired when I was a baby to teach sign language for a few years. My mom noticed that there was something a little bit odd about her or maybe something a little bit different and she was from Texas. Um, so it was that maybe that was it. And my mom's from Texas. And she said, if you had nothing nice to say then no, say anything at all. That was her attitude. You know, very Southern polite woman after I graduated, I came back one career, sorry, it wasn't after I graduated wasn't while I was at Gallagher, I came back for one Christmas break And you know, the deaf community news travels fast. So everybody had heard through the grapevine. You know, those grapevines are really, really strong in the deaf community. So everybody I've heard through the grapevine that I had Usher syndrome, I hadn't spoken to Edith. We hadn't been in touch with that family probably 10 or 15 years. Uh, she, I guess, had moved on to other things and she contacted me kind of out of the blue and said, just so you know, I have usher syndrome too. My family was completely shocked that the woman who had taught my family out of sign also had officer syndrome. Most was exactly what I have at that time. She was in her sixties. I think, I don't remember, but we started to talk and I felt very comfortable with her and to see somebody who was that age who had usher syndrome helps me a lot. Unfortunately she passed away two or three years ago. She was 88 when she passed. And she had a wonderful long life, but it was really nice to see somebody who was older and functioning in the world. And it made me feel like I was going to be okay. But after I graduated, I moved back to Wisconsin. I taught, at the Wisconsin School for the Deaf. And at that point I noticed that I started to lose much more vision. I started struggling at that point with my identity. They know I'm a deaf person, but am I a deaf blind person? And I had this inner conflict going on. I didn't really know where I fit. I was sort of this identity crisis of who am I, the Wisconsin deaf community is fantastic. And I absolutely love that community, but I felt a little bit disconnected from them at the same time. I felt a little bit of a stronger, I hadn't, I didn't feel any strong connection to the DeafBlind community. There's not a big deaf blind community in Wisconsin. So there really wasn't anywhere for me to put down new roots so to speak. So I'll pause there.  

[Doug]: Yeah. This is, this is all really, really interesting stuff, Chris and with the time we have left, a little less than 10 minutes, there's a few things I want to cover. So, I definitely want to get to the point in your personal story where you do feel comfortable and do really feel like a part of the deaf blind community and how that happened. And then from there with the very last part, leaving a little bit of time to then discuss some of the differences and also overlap of the two communities. So with about, you know, we can go over a few minutes perhaps, but with about like eight or so minutes left, I'd love to get to those two topics.  

[Chris]: Okay, sure. So I can, I can spend some time talking about those too. So the connection that I feel to the deaf blind community did not happen overnight. It wasn't like I woke up one day and said that I'm deaf blind now. And I feel like I'm a part of the deaf blind culture. It was kind of a process of acculturation there. Um, there were things about deaf blind culture that I started to incorporate into my life. And I would say I was in my thirties, which was when I was having that big identity crisis. I'm 45 now. So yeah, my thirties, I started to really struggle kind of between the two worlds of Deaf and DeafBlind worlds. I didn't have a full understanding of what deaf blind culture was. The first thing that I did because I knew, I knew I needed help was I turned to the internet and I Googled DeafBlind services. One of the first things came up was Helen Keller National Center was top result. No, I had never heard of it. I never heard of Helen Keller National Center till I'm in my, until I was in my thirties. I imagine that I now meet associate executive director, but the world is a funny place sometimes, but I had no idea that Helen Keller National Center existed, never heard of it before, until I Googled deaf blind services. I read a little bit about it, just some research and make a long story. Very short. I wound up at Helen Keller National Center and training for myself that was in the summer of 2008. I did an eight week training. And that was my first real experience being immersed in deaf blind community. And then in 2011, there's AADB, the American association of deaf blind. They're a national consumer organization for deaf blind people. They have conferences, they had a conference in Fort Mitchell, Kentucky, and I went and there was a huge population of deaf blind people. I got to interact with many, many different people, and that was amazing. And after 2011, after that AADB conference, I felt like, okay, this is what it means to be deaf blind. I do feel like I fit in with these people. Maybe this is where I belong in 2012. I quit my job as the Wisconsin school for the deaf. And I started working at Helen Keller national center. I felt like that was really where my heart was. I wanted to work with other people that were DeafBlind. I felt like those were my people and I wanted to be with them. I felt like I was a part of that community. I felt like I could be a value there. You know, I got a job at Wisconsin school for the Deaf because at that time, my heart was with the deaf community. And now that I felt much more like a deaf blind person, I needed to move and work at Helen Keller national center, I kind of moved up the ranks pretty quickly there. I became an associate executive director, which is the position that I have now. Just very interesting how life goes sometimes. Um, I went from never having heard of Helen Keller national center in my thirties and 15 years later, I'm working there. It pretty much faster. So, um, to answer your next point about the deaf blind community, it's very different from the deaf community. I don't want to emphasize that point. It's extremely different. The deaf community values site Over everything else, hearing people like Doug for you, you are a, you value your hearing, probably over every else, the Deaf community values sight over everything else. The deaf blind community values touch over everything else. It took me a lot of time to become comfortable with that and to rearrange my values. Now I fully embrace it and touch is the highest priority for me, but it was a transition. You know, deaf community has very much visual ASL as a language, as opposed to a tactile ASL for the deaf blind community, accessing information is visual as opposed to tactile. So there are two very different modalities for accessing the world. The DeafBlind community is also much more diverse than the deaf community. The Deaf community does have some diversity, but the deaf blind community is hugely diverse. It makes it a little bit challenging because there can be a lack of cohesiveness in the community. And that's just because there are so many different needs and so many different vision and hearing statuses that creates a little bit of a challenge. So I hope that answers the two questions that we're looking for?  

[Doug]: Very well. There's a couple other followup questions I have. I just want to check in with our interpreters real quick. Is it okay if I go over just by a few minutes? Is that okay? Yeah. Okay, great. I just, cause I had a couple more where it's such a great point in the conversation. I just want to ask a couple more things before we go, but I just want to go back to highlighting that moment that you described so beautifully. Um, I mean, I'm sure there were obviously a lot of small events that led up to it, but kind of this rite of passage or this real threshold that you described crossing from really identifying with the deaf community to the deaf blind community when you went to this conference with so many other deaf blind people. And you know, what I got from that was similar to the five year old boy, who's the only deaf boy around and is excited that his sister is going to be joining him in that, on that plane, that someone who would now as, as an adult, someone who had really spent most of his time around other deaf people, kind of for the first time being around so many other deaf blind people and really having that visceral feeling of community in being in the presence of so many other people. And then that like really, um, a defining moment of quitting your job with a deaf school and joining on with a deaf blind organization is really, uh, really, um, encapsulates that transition. It really, really highlights that moment of transition for you. That's so interesting. And you know, you were just talking about some of the differences between the communities, a couple other just quick follow up questions with the last few minutes we have here going a little bit over, but, um, I just want to, um, I just want to, uh, ask you about, um, what, what if, uh, as someone who obviously felt, um, associated with the deaf community for, you know, one part of your life and then maybe more so with the deaf blind community and this next chapter of your life, do you feel like you, you were, you can uniquely connect with both communities having really felt like you were a part of both at one point in your life. How would you speak to that?  

[Chris]: Yeah. I consider myself a member of two minority cultures Or two minority groups. Some people think I am, I'm a member of the deaf community and deaf blind community is just a subset of that, but that's not the case. I am firmly a member of the deaf community. So the deaf community kind of found its way into my heart from when I was very young. And as I got older, the deaf blind culture also snuck its way in there. So I feel like I'm a very two distinct cultural minority groups and there's a word that's pretty common now, intersectionality that's assigned for it. I think, I think I'm not sure. Um, but intersectionality is that they're basically, there's many layers to somebody's identity. We're all, not just one thing. You know, we have cultures on top of cultures on top of cultures and identities on top of identities. And that makes us who we are. So when I'm with deaf blind people, or when I found out that I was deaf blind and I started embracing that identity more, it kind of added a new cultural identity to myself. So in that way, I'm kind of a multicultural person, I guess, if you want to say that, um, I do have a very, very strong connections still with the deaf community. I have so many friends in the deaf community. I didn't cut ties with them or anything like that. We're still as close as we ever were. I still feel like a tremendous part of that community, but it has lessened a little bit as my focus has become the deaf blind community. My connection to the deaf blind community is still relatively new. It's really only been since 2008 since I met those, those fellow people with syndromic alley that, um, so because I've been a part of the community at large, only since about 2008, my deaf blind identity is still relatively new. So I definitely feel a strong connection to both. Um, there's not, they're not mutually exclusive.  

[Doug]: So with the last one minute here that we have the remaining one minute, we have a question from Barbara, my aunt, hello, Barbara. She asks, why is the deaf blind community so much more diverse than the deaf community? I know you started to go into that, but maybe with the last minute here, if you could just talk a little bit more about that.  

[Chris]: That's a fantastic question. I'm actually thrilled that you asked that Barbara. So how somebody arrives at being deaf blind is so varied. So my story is one of many, like I was born deaf and became blind. As I got older, a lot of people with ostracism have similar experience to that. Some people are born deaf and blind from birth. Like people with charge syndrome, um, or a couple of other syndromes like that are born deaf and blind from birth. Some people are born blind. They lose their hearing as they get older. Some people are born with hearing and with sight and then something, they have a trauma, an accident or disease, severe illness that caused them to lose both senses. Some become deaf blind as they become older, senior citizens lose their sight and their hearing. So there's a multitude of ways that somebody arrives at deafness and blindness. So that's why the community is so diverse. There's not one typical deaf blind person where there's not one typical path into how somebody becomes deaf blind. Mine is just one of hundreds of ways that that can happen. So that's why our community is so diverse because people are coming from all different situations,  

[Doug]: Beautifully put Chris. And certainly there's so much more we can talk about, um, that concludes our time for today, but you'll definitely be back on against you. And I know there's many other topics that we'll have to discuss in the future. Um, thank you to everyone who's tuning in. Uh, thank you to our interpreters as always Erin and Liz for signing and Jamie for voicing throughout this and a reminder to all of you watching. We now have this wonderful group of people that are watching on Facebook, alongside people who are watching on YouTube during these lives. I would encourage you if you aren't subscribed yet to our YouTube channel, you can go over to that by going to youtube.com/feelingthrough and there's stuff that will exclusively be on our YouTube channel at certain points in the future. These lives will always be on both, but there'll be some other stuff that will exclusively be over there. So if you're not already subscribed there and anyone who's joining us on YouTube, I encourage you to also follow us on Facebook. Cause there are certain announcements and such about other things that we're doing that you'll find there. So go to our Facebook page and follow like us there. If you're not doing that already. And one more reminder, we're still celebrating deaf blind awareness week, which goes through Saturday. Again, I posted up a link to our store. So if you want to celebrate by buying some really cool Feeling Through merchandise, we've got really awesome. T-shirts up there, sweatshirts, mugs, a tote bag, really cool stuff. Some really cool designs we worked on for a while and it'll go directly to supporting our partners, Helen Keller Services, as well as future Feeling Through Experiences and endeavors. Once again, uh, thank you so much, Chris, for joining us and thank you for everyone who tuned in and as always, we will be back next week. Same time, same place for Feeling Through Live. Have an amazing weekend and we will catch you soon. Bye. 

Feeling Through Live • Episode 10: DeafBlind Representation & Accessibility in Film

 

[Doug]: Welcome to episode 10 of Feeling Through Live. This is a really awesome episode. That includes Robert Tarango. Who's the first DeafBlind actor in a film and Marilyn Trader, the Southeast regional representative of the Helen Keller National Center . So one thing that's really great. And I think a lot of you who are watching my already know about this, and if you don't go to feelingthrough.com, but this upcoming Thursday, we're going to be doing a free and accessible live stream of The Feeling Through Experience. Again a lot of you probably already know what that is. I know, I see a lot of familiar faces on here, but for those who don't, this is an opportunity today for us to talk a little bit more about The Feeling Through Experience with two people who played a huge part in it. And to talk about the importance of DeafBlind representation in film, and also accessibility in the exhibition of the film and something that Marilyn is going to be able to go a lot more into this, but we were, we've done some things as far as making our screenings accessible. That to our knowledge are more or less a film first. So without further ado, I'd like to first speak with Robert. Who's the first DeafBlind actor in a film to star in his film. And Robert I'm just, you know, going way back here, I'm looking at, from the moment we first met to now, um, what's this experience been like for you?  

[Robert]: This is Robert speaking. No, it's been almost two years. I remember that day, that first day I was working in the kitchen and my supervisor, Dan came up to me and I had no idea what he was asking for. And he was on the phone and he was telling me I have to go to the other, building our training building. I had no idea why I was like, w four. He goes, I don't know, you have to go over there. So I remember I got my stuff. I got, my cane went all the way over to the training building. And I remember walking into that room and I seen everybody sitting around. I had no idea. I sat in a chair and that was the first time you and I had met. Um, and you told me about feeling through and that you wanted to make this movie and your whole vision. And I remember just being just speechless of really, you want me to be in a movie and just that whole feeling, those jitters, they excitement that just overpaying me. I just, I remember for three days, um, I was just so excited, so motivated and the fact that you've been pitch me and, you know, I remember that day, it was a screening, right? Most people's screen, you don't actually get picked, but I remember I couldn't stop thinking about it. And I, I was hoping and praying out at it. I never remember, again, I was at work, my boss Ann came over tonight and he's like, come over here, come over here. And then Dan was on the phone and just drink to me and be like, it's me, it's you you're getting like, Oh God, I couldn't believe it. I was so excited. It felt so good. I was real about being tested in this movie.  

[Robert]: And I remember a meeting with, um, Steven, the other, uh, he played terrific in the movie. And I remember the first time I met him and going through a lot of the practices and rehearsals and really practicing the script and going through everything and just rehearsing everything. Doug, you giving your feedback and your critiques. And I remember that day that we actually started filming it. Oh, I remember that first day when we were on set, it was raining and cold and freezing. There were so many challenges with that. And Doug, you catch it, try and tell me, you know, you know, you have to like smile different or, you know, do this a little different and just how many takes we had to do it until we got it. Perfect. And I remember it was, it was really hard, those, those days of filming, but I remember the last time we did this, we finished, we're done. Wow. It was such an amazing experience. It was just, Oh, again, it was an amazing experience overall. However, it was cold. The weather was awful.  

[Doug]: Yes, definitely. Uh, I definitely remember Robert, um, being not so great with the cold he's admittedly in his own words an Arizona boy. Uh, and even though he's been in, been in New York for quite a while, I think that he's still got the, uh, the Arizona skin when it comes to exposure to cold weather. So definitely that was, that was definitely a significant memory from that shoot. Um, for those who are watching, feel free to also treat this as like an AMA, if you don't know what an AMA it's an ask me anything. So we'll, we'll, we'll consider this an ask me anything as far as the feeling through experience is concerned. If you've been a part of it before and have followup questions about it, feel free to ask those. You don't know what it is and we're not explaining it well enough for you feel free to ask specific questions about that.  

[Doug]: Um, so continuing here, um, so, so we'll definitely Robert, I definitely want to talk more about your experience in a little bit, but I just want to start to set up the accessibility side of this conversation, obviously when you're making a film that includes, um, any community, but in this case, the DeafBlind community, we certainly, it was really important for us to make it something that was accessible for that community. Um, so I guess before we talk about that, maybe, um, Marilyn, maybe you could just talk a little bit about what, what the variety of communication methods are in the DeafBlind community and, and start to paint the picture of how we, what the, the different accessibility needs that we needed to address when showing the film.  

[Marilyn]: So, um, one of the things is, you know, when you came to us at Helen Keller and said that you want to do, you know, this movie and all this stuff you want to do, we're like, Oh, great, yay. But then we didn't realize you traveling all over the United States until, you know, we touched base and said, okay, you know what, let's do a kickoff in North Carolina. So we did. And what we did in North Carolina, because North Carolina, DeafBlind community, the division of services for deaf and hard of hearing and services for the blind and the DeafBlind project, they don't do anything small. They do everything big here and they usually have a whole month of deadline awareness. And so we plan for about six months for this to really figure out how we were going to do a kickoff in North Carolina. And there were a few things we know we have a very active community.  

[Marilyn]: So that's one, secondly, is it's a very diverse community. So not everyone utilizes tactile communication hand under hand communication, not everyone uses, um, you know, the pro tactile method. Nope, not everyone uses haptics. And it's very difficult to, to kind of figure out who was going to show up, you know, because what we did is we made it open, or we asked for people to contact us, to let us know what their communication needs work. So there was the people who showed up. We didn't, we never met before. And so we might have to cover all bases. And I remember you and I were sweating about hours before the opening of the showing there in Cary theater and gorgeous theater, but we had not only the official visiting devices in place, we had to be sure all the interpreters, we couldn't have seats that were like traditional bolted in the ground seats. We had to make sure we could move them around. We had interpreters on the stage. We had interpreters on the floor, close visual interpreting going on. We had tactile, we had, um, people utilizing headphones. We had people that were talking in someone's ear or word for word we had before, before you had the, um, visual description embedded. We had one interpreter who had to give the visual description. We had another one who was playing the other character and visual description. Um, you know, we also had, um, laptops set up everywhere because not everyone was able to view the screen. So even though it was huge grade and we either manipulated the caption of there's so many times, remember we worked on that. Um, but we had iPads everywhere. I mean, whatever anybody needed, we were trying to pull it out. Um, my husband Jeff, you know, we were a married couple who are into this, it's our family deadline. Isn't just work for us. He was there, coordinated all the communication. And I remember your mouth dropped. You were like, wow, all those interpreters are here for this. I'm like, yep. And a lot of people volunteered. We had a lot of people there that were helping out and just constantly move in and the flexibility to do whatever anybody needed. And that's the key. Just be ready for anything, because anything can happen at a show.  

[Doug]: Yeah, it was, you know, that first. So just to bring this back, that the first live screening of the feeling of their experience was almost exactly a year ago. Um, this, uh, the month of June is DeafBlind Awareness Month. Um, and we, it was always our goal to premiere it during DeafBlind Awareness Month, because what better way to celebrate than to, to do our screening during, during the month that's dedicated to the community. Um, so again, um, one of Marilyn's states, North Carolina, specifically, we were in Cary, North Carolina was where we held the first screening. Um, so it's just cool for first and foremost, to think that that was like just a little over a year ago. I mean, in many ways it seems like way longer than that, because it was like so much has happened since then. Um, obviously not just for the feeling of your experience, but for everyone in the entire world, it seems like a lifetime ago, but it's, it's, it's, it's a cool opportunity to look back at a year ago and just look at the beginning of the journey of exhibiting the film to see where we've come. But I think what was so cool about that screening in Marilyn, that you're, you know, you've really captured is that it was because it was the first one that we had done. It was the first opportunity to see the, the, the real team that it takes to put on the level of accessibility that we did. And again, just to reiterate some of the things that Marilyn was just sharing. So traditionally, you know, in, in like an AMC or any sort of like large chain, um, you will have something called audio description, which is, um, for people who are low vision or blind, it's the, everything that's visually happening on the screen is there is a voiceover of someone describing it. Um, so we had, we had that, um, then there's captions that, that, um, you know, you're familiar with, you know, whether it be on YouTube or Facebook or on your TV, if you've ever turned them on.  

[Doug]: Um, in most movie theaters, they pass out these really like outdated, like tiny little monitors that have the captions on them that I've tested out before and like are really, really hard to use. Um, particularly for someone who might have, um, like low vision, um, or certain things that would inhibit them from seeing it clearly. So what we would do is we put open captions right on the screen. So the captions, um, were right there on the screen for everyone to see, um, and, and something that we had to figure out like last second, that was part of Marilyn. What you were talking about scrambling to figure this out was, you know, there's this kind of like traditionally to the traditional size of captions, we quickly realized like wasn't large enough for, for some of the attendees. So at the last second where like I'm doing a new export of the film that has like way larger open captions, so that it's more accessible and easier to read. But again, these are a lot of the things around accessibility that, you know, we kind of had to figure out on the fly initially. And then obviously we were able to implement it later screenings. But, um, but you know, but it's one of those things where, because there's such a lack of accessibility in, in a lot of screenings there wasn't really a great like playbook for us. That's why we kind of had to like, figure it out on the fly. You know, I'm just wondering, you know, from, from your vantage point, um, Marilyn, like how, how you have seen or interacted with accessibility or lack thereof in the media.  

[Marilyn]: So this is Marilyn Um, what it, you know, that's one thing too is, you know, as I said, deadline, um, for me, uh, grown up in it, um, you know, I'm married into it as well. Uh, it's very disheartening to see, um, the lack of accessibility and, and media. And right now, especially with a lot of our news, even though people are like, well, we put an interpreter there. Yes. But you know, you don't have, the interpreter is not accessible or there you're not on the screen all the time. And, and during this time you really need to be sure you're covering all bases in accessibility. Um, you know, we have so many consumers out there who have no idea what's happening in the world, you know, and we can't get to them, you know, we can't, we can't let them know fully what was happening. Um, the great thing about in my region is a lot of my DeafBlind inner-agency teams, you know, we work together to ensure that our government officials are trying to make it accessible. Um, I know in Kentucky, our governor there, um, has been doing a fantastic job and making sure that, you know, the interpreters in an ice cream color background, everything is good. Um, you know, but he also is, you know, takes the effort and cares about all of his residents, you know, and that's one great thing about a lot of our communities and our government officials do, as you saw too, is a lot of our government officials came to your screening as well. And all of my States to say, thank you. And they learned a lot from that. I know that for sure. I remember, you know, um, we had there, um, Mr.  

[Marilyn]: Benton that was there, who said, thank you so much. You know, I, I had no idea about the need and the diversity of accessibility and to have a government official there to say that directly, do you, it just, you know, almost any class because you know, when you live at your whole life and we get somebody who gets it, you're like, okay, so we did it, you know, um, but there's still a lot of people out there who have no idea when we have over 2.4 million DeafBlind in the United States, you know, think about how many people have no idea really what's happening. So for you and what you did and what you've been doing, you know, you gotta give yourself a really good Pat on the back because you've learned a lot throughout this process. Yourself  

[Doug]: Definitely learned a lot throughout this process and continue to learn. You know, I think it's one of those things where one of the really, um, you know, one of the really interesting parts of this process is that it's a continual, um, learning experience and that there's each medium presents its own challenges and things to troubleshoot and figure out and figure out the best solution for so still to this day, still learning for sure. But, um, so I want to go back to the, to this a year ago, we're in Cary, North Carolina at this awesome theater on their main street, they're called the carriage theater. One of those like cool old theaters that they redid the inside of. So just like the lobby super cool. And it's got this really cool coffee shop on the side. And the theater is amazing. The people that run ran the theater were so nice.  

[Doug]: So we're there, we've got a full house, a really amazing diverse audience of, you know, a lot of people from a local, deaf, blind community, um, and local disability community and, um, and every kind of everyone else. And there was amazing mix of people. Robert, you were, you were there with us at this first screening. And I remember making a point of watching Robert watch the film for the first time because he hadn't gotten to see any of it yet. So I'm wondering Robert, when we go back a year ago to that very first screening in Cary, North Carolina, and you got to watch the film for the very first time. What was that like for you the first time watching? Oh my  

[Robert]: God, it's me on the screen now. And I just, I couldn't believe it. I'm like, wow, I'm the first DeafBlind actor to be in a movie. My feelings, there's so many emotions that were happening. And for me, I actually love the fact that now hearing people are able to actually watch somebody, who's definitely going to be able to do this and the impact that it's having on them. And I just remember getting chills from this and that same time thinking, what are they thinking? What is the hearing with thinking about this? And now for the first time I felt equal that I'm also a movie star, just like another hearing actor. Like now I'm just on the same level as that,  

[Doug]: You know, that that's, I love how you, you put that. And, and also particularly how you started off by saying, wow, that's me up there, which is a perfect segue to, to a question from Allana for you. Robert, she asks yesterday, I learned that in film, 95% of characters with disabilities are played by quote able bodied actors. So the question for you, Robert, is what are your thoughts on that and how does it feel to have the opportunity to truly represent the DeafBlind community in film?  

[Robert]: Sorry, give me one second. So it's inspiring that you know that now, yes, I am DeafBlind and I'm playing a deaf by character. So it's now allowing people to realize that that's what I can, you know, I wish this will actually inspire other films that you can actually cast that character with person with the same disability that they're playing, that we can do it. Somebody with in the disability, uh, somebody with a disability we can, we're not different. We can still play those parts.  

[Marilyn]: It does. Can I add to that?  

[Doug]: Yeah, please.  

[Marilyn]: So this is Marilyn. One thing that, um, I really pushed and really was hoping when we started doing these movie premiers was that, um, we wanted to make sure that was going to be there because you know, him being in the movie and his smile again, is so contagious. Um, and, and just knowing him for so many years, his personality, everything about Robert. And so when he came to North Carolina to a very strong, beautiful community of deaf, blind, diverse, um, they had the opportunity to touch him, to communicate with him directly to ask him questions. And I don't know if you remember, but we, we had an autograph page on the back of our playbill and everybody wanted his autograph. Everybody asked him for his autograph. I mean, just seeing Robert smile and just how he felt at that movie and how the community felt. He really inspired so many people that were there. Um, and then we had a full house. We packed a whole theater, um, is definitely inspirational, not just for the people there, but really showing this all over the world for sure.  

[Doug]: Yeah, really, really well put. And, and, you know, I think it's, I think the, um, what's so resonant, you know, for me during this time where, you know, there, there was, there has kind of been a push in Hollywood to, you know, to, to have more inclusion and representation, but a lot of times it's a reaction to, um, really kind of dropping the ball on that for so long. And it, it feels very much like a, a PR stunt or just something that's kind of said to, to just appease people. Um, but if you, if you come to a screening, like the feeling through experience and actually are part of accessibility and representation, and actually like, see what that's like, if it's something that's not, if you're, if you're from a community that if, um, like seeing a sighted in hearing community where maybe you've never been in the presence of accessibility, maybe you've never really had to think about it. If you come to a screening where it's so present and forward, like it is at the feeling through experience, and there's such a diverse representation in the audience experiencing it in different ways. You really viscerally understand why it's important. And even for, you know, for myself, that understanding wasn't really fully solidified until we did that first screening until I looked out in the audience and saw, you know, people having the entire experience, tactilely signed to them in their hands. Some people using audio devices to listen to it. And, um, you know, just seeing a stage interpreter interpreting everything that's happening, there was this amazing feeling, looking out in the audience and going like, wow, like I really, really understand what it is we're doing now. And it didn't really hit until that moment. And, you know, one of the amazing things about being able to take this around the country, and obviously now we're, we're going to be doing it online on Thursday.  

[Doug]: If you haven't signed up yet, go to feelingthrough.com and register for your free ticket. But is that, you know, I've gotten to hear from a ton of other people, um, who have come to our screenings and seen, you know, this representation and this kind of accessibility, they always echo like, wow, that was, that was honestly, probably the biggest takeaway for me was the gift of being able to be in this screening setting that I've never been in and feel like I have a much greater understanding of other people and their needs and how and why it's important. Um, and, and, you know, again, Marilyn, like kudos to, to kicking it off, um, right at the, uh, at our premier a year ago. You know, I think again, just a really, you know, we're, we're talking about how this takes a team, but like we must, I think we had, I remember we counted at the time. I think we had upwards of 50 interpreters and service support providers at that screening to, to, uh, make sure that it was fully accessible for all our guests. Just to give you viewers a sense of like the kind of team that it takes, if you have a lot of the DeafBlind community present, but again, so well worth it. And one of the things that really stands out for me in Marilyn, I'm wondering if you remember this and Robert, if you remember this from the Q and a after the screening, which we always do, which is a part of the feeling through experience, I'm one of the very first, uh, audience members to stand up and speak, uh, was a DeafBlind man. Um, and I remember what he, what he said was still echoes in my head. Anytime we do a screening and is one of the things that really, um, underlines, how important accessibility is, he stood up and said, hi, he introduced himself.  

[Doug]: And he said, hi, I'm DeafBlind . And then he started off by saying, he said, you know, a lot of people might assume that because I'm deaf and blind, that I wouldn't care to go to a movie screening. You know, you might just assume that, like, what would I enjoy there? What what's the what's in it for me, but then he says, but I love going to screenings. Like I love coming out to, to a live event and being able to participate in it. I just, it's just never accessible for me to be able to do so. So he's like, that's, that's why it's so important what you're doing right now, because it allows people like me who really wants to participate in events like this to be able to do so really for the first time. Um, so that was such an amazing, like first comment to have, because it really was a perfect encapsulation of like, um, why we're doing it this way. Um, you know, question for Robert, Robert, I'm wondering, um, actually real quick, I'm gonna, I'm gonna address some of the other questions that come up here. Uh, let's see what we have here. It looks like, um, Oh one. Okay. So Lucia's asking about a CQL. Um, so great question. Um, so yes, again, the feeling tour experience is a 90 minute event. That includes the short film feeling through of which Robert is the star, uh, supporting short documentary called connecting the dots, um, which follows casting and working with Robert, um, and also the search for the DeafBlind man who had, who I had met many years prior named our Teneo who inspired all this. And then the last part is this panel discussion in Q and a. So the, the sequel in this case is, or we're definitely developing a feature film version of the story feeling through. So that would be the next step here. So I guess the question off of that is Robert, how would you feel about having more opportunities to be an actor in other projects?  

[Robert]: Of course, of course. I hope so. I, this is something that I'm hoping for. And again, listen, you never know, I may platform off of this. I might be, he has done other films, other larger feature pens. You never know, but, you know, again, it just comes back to, you know, some people may be scared of the DeafBlind community cause you don't know how to communicate with me. Um, but you know, it's nothing to be scared of, but listen, I love SQL a third, a fourth, a fifth movie, anything like, yes, but again, you know, it goes back to the fact that DeafBlind can anybody who's DeafBlind , you can do anything you set your mind to  

[Doug]: Yeah. Beautifully put beautifully put. Um, so, okay. So, um, we had this amazing screening in Carey a year ago. Um, and you know, we had this amazing turnout, um, you know, local government, uh, representatives were there to read a declaration for, for DeafBlind awareness month and participate in introducing the film. Uh, we had a great discussion afterward and what that led to was this great opportunity to take the film across the country, you know, from everywhere from New York city, all the way over to Hawaii and many places in between, um, doing these fully accessible events. And again, time after time hearing a lot of the same things, um, as far as the importance of, um, providing that accessibility and having, you know, individuals who might not normally be able to participate, be able to fully participate. And then, um, so we were able to do, I think 12 or 13 fully accessible screens across the country, um, capped off by our, our LA premiere in February that had 300 attendees and a lot of the local DeafBlind population.  

[Doug]: And then thing called Coronavirus happened. And all of a sudden it became not really great to be in a, in a crowded theater. So one of the things that we have been working on, obviously here I'm feeling through live, you can see that, um, we, we always have live captions available on our Facebook feed, as well as an interpreter. Um, but also for this upcoming event on Thursday, um, which will be our, our live stream of the feeling through experience to celebrate DeafBlind awareness month. And in this case step one awareness week, um, which is the final week of June because Helen Keller's birthday falls on June 27. So that whole week is step one awareness week, um, is that we're going to be doing a fully accessible live stream of the feeling of their experience and what that means. Again, there'll be, we'll have captions on the screen, we'll have an interpreter, um, uh, they're interpreting throughout, um, and, and still trying to make things as accessible as possible. Um, you know, what, we'll have a feed for people who are linking up their braille displays so that they're, that's accessible, friendly for braille displays, um, and also have a descriptive audio version for anyone who needs that. So again, if you are watching and you haven't signed up, you can go to feelingthrough.com and just sign up at the bottom of the homepage it's, um, and get your free ticket. It's free. Um, tell other people about it. We're trying to get as many people there as possible. Um, because like we were talking about, this is also something it's about bringing people together. And, you know, I, I think obviously with what's going on in the world and a lot of really amazing things, a lot of really amazing change, but there's also, um, I feel it need to come together, um, and have events that, that really, um, honor, um, connection and, uh, human connection, despite whatever differences we might have.  

[Doug]: And that's certainly, you know, what the feeling through our experience is about. So, so again, if you haven't signed off, go to feelingthrough.com and do so tell a friend, um, and let's, let's spread this thing out as far and wide and as big as possible. So, um, so Robert, another question for you is, um, you know, obviously a lot of things are changing in the world right now and, you know, I think we're all kind of sitting back and waiting to see how things play out as far as, um, specifically coronavirus impeding our, um, you know, ability to kind of move around the world and in the ways we might normally. But looking ahead for you, you know, what, what are you, what are your like hopes and dreams for the future? Um, what, what are you thinking about as far as the, what does the future hold in your mind? My future really depends.  

[Robert]: There's so much unknown right now. I know, you know, also with my vision, you know, I'm losing markers, a vision, my vision loss is progressive, but you know, again, I have to just be optimistic about this and just kind of keep that positive attitude going on, but right now I don't know what my future holds.  

[Doug]: Yeah. That's, that's an honest response that I'm sure a lot of people out there can relate to. Um, you know, Marilyn, you were talking before about, you know, how you've transitioned during this time and, and maybe some of the things you might implement moving forward, but like your best guests sitting here right now, um, you know, looking forward a little bit, what does that look like for you?  

[Marilyn]: So one of the things is, you know, again, I think I mentioned earlier is Aboriginal rep, you know, all the regional reps across the United States and our DeafBlind specialists and the community services programs we have, you know, we're, we're in the field. You know, we, we work with providers, we work with families, we work with consumers directly and, you know, we're just having to do this creatively and continue doing that and maintaining a positive attitude. Um, it's really, really hard, uh, to do so when deep down, you know, I think I mentioned when you started doing these connections, you asked for a video and I gave you my video, which was really hard for me to do one. I'm not one to really video or selfie or anything like that on myself. Um, but it was really difficult because I'm the mother of twins and, you know, I have a fantastic husband and, uh, you know, a great community here. Um, I have all my family's out of this state and I can't, I can't, we can't be there. We can't touch them. Um, you know, it's hard, uh, I'm a high risk person, as I mentioned before. So I am scared all the time and it's really hard because every day I have to be positive and, and, you know, keep a good, positive outlook on everything for my work, for my consumers and for people I work with. Um, I, if it wasn't for my job and loving what I do, I mean, we, you know, again, I, I breathed this community all the time. This is not a job for me. We don't do this for money at all. We did it because we love this work. And, um, you know, so I'm just going to continue doing what we're doing, build capacity, be creative, again, work with my awesome partners out there and, you know, see what we can do to continue to bring on, um, education knowledge and, um, work with our consumers virtually as much as possible.  

[Marilyn]: I mean, you've seen some of the creative ways, you know, are definitely specialists have been doing that. Um, you know, Corinne Miller in Kentucky, she's done a great job in doing that. And we're going to continue doing stuff like that. You know, we're not stopping, we're still an operation or we're gonna continue doing what we can and shed as much positivity. That's I asked you to be on our show that one time, what, because this world really needed some positive connection. And that's, what's great about this film. And I'm really hoping we hit like a thousand people to see it because, you know, we all need a lot of positivity out there and the importance of human connection and will be what we can, if it's through the internet connecting, Hey, we'll do it.  

[Doug]: Yeah. And like you said, it's sign up. Well, we're constantly figuring out as we go too. And, you know, for anyone watching right now, um, you know, we're always w what we do here, the feeling through experiences, you know, again, do our best job to bring accessible content that we feel is, um, serves, um, you know, the, the communities at the core of what we do, namely the DeafBlind community and related disability communities, but also, you know, make content that is, is, uh, something that is interesting to everyone. Um, and so if there's anyone watching right now that has any suggestions or thoughts on, you know, topics that they'd like to see us cover, or, you know, various things that they'd like to see us do, or we're always open to taking suggestions too. So, you know, feel free to chime in and let us know if there's anything, um, any topics or anything you'd like us to get into that we haven't necessarily gotten into yet.  

[Doug]: Um, but yet some living and breathing thing. And, you know, I think, um, you know, one of the things that's been really great, at least through the feeling through lens, um, since everything's happened with, with first coronavirus and men with, you know, everything that's stemmed from, you know, the killing of George Floyd and, and a lot of the protests that are happening now, and then a lot of the, the awareness that's going out right now, as far as, Hey, everyone is equal, everyone is equal, right. And obviously with the focus on black lives matter, being the needed focus right now, but it's certainly formatically related, you know, to what we do with, you know, specifically the DeafBlind community, mainly in a community that is, you know, you know, marginalized, an unrepresented, virtually unrepresented in media, certainly, um, discriminated against in a lot of cases. And obviously, you know, Marilyn, a lot of the work that the Helen Keller National Center does is, is, is to, to, to really fight for those causes for the community. Um, but what, what, again, in the, in the kind of, um, uh, in, in the, in, in the wake of kind of the tearing down of things around Corona virus and, and, you know, some of the atrocities that have happened, there's this great opportunity to build up. And we've certainly used these opportunities again, to like move into the, um, virtual space, more, you know, connect with people around the globe. I know that there's a, I believe Donna, who's one of our, our regulars on our live streams. I believe she's tuning in from Ireland and being able to just connect with people from around the world, um, has been a great kind of unforeseen, um, a silver lining in some of the things that were initially really, really challenging to deal with. And certainly we prefer to be in the same space as people and really connect with people, um, in a physical space. But until that's possible, again, it's, it's really a gift to be able to do so virtually and build new relationships and, and, and, you know, spread this out to more of the globe. Um, in the meantime, um, Robert, I know that you, uh, you have definitely really enjoyed the traveling aspect, um, of, of the screenings when we were taking them all over the place. Was there, was there a favorite place that you went to, um, for one of our screenings or a favorite experience that you had?  

[Robert]: It was still the very first screening, the one that we had in North Carolina the first time I have to say that was the best experience I've had, You know, the first time just looking at that now, essentially I'm a DeafBlind movie star going in to see the premiere of my movie. That was my favorite as well as going to Texas and Arizona. Um, LA was really cool to try to be where else to be on the river everywhere we traveled to. Oh, we went to Ohio as well. You know, I loved them all, but my favorite was North Carolina. And just being able to just sit there, watch the movie, just getting those Chels and then having the audience come up and asking for my autograph that it was just, it was an amazing experience.  

[Doug]: And, you know, speaking to all the places we've screened, Marilyn, I know what we did like four screenings with you in three different, in three different States. Um, what, what are some of your fondest memories of the other ones, or did you, did you have a favorite?  

[Marilyn]: You know, it's hard because, um, I mean, again, the whole South East region all pitched in to make these happen. Um, you know, I've got all my States that really put in the hard work and time to really make it successful. Um, you know, North Carolina was, I mean, I cried so hard and it, and it was just primarily because people were holding onto their chair and feeling the movie, you know, because, you know, when you're in a movie theater, sometimes it's like the star Wars. We know when it comes over, you you're like, Whoa, they were all just, you know, feeling the movie inside and out and passionately of the content and everything. And then looking at you, seeing you over there, cause you were tearing as well. Just, you were, you were blown away and I know how hard you've worked on this and, and having that big heart and, and working so hard, your work has paid off so much.  

[Marilyn]: You have touched so many lives out there and that whole were all so excited and very thankful for it. And that was probably my ultimate favorite one, just because of the appreciation that was given back to you to do the hard work you did. And Aaron, because Aaron was there as one of our interpreters as well. Um, but we had Angela Paris who did a fantastic job voicing, and I know, you know, Jeff, all his hard work, but in all the interpreters everywhere, um, everybody just did such a great job and the teamwork and all the providers were so hard and the community did to the North Carolina deaf line associates came out, may help. It was great. It just was, it was fantastic. Um, they'll get me wrong. The Franklin theater in Tennessee was beautiful and Alabama Southeast regional Institute on deafness, you hit so many States there at that conference and they loved it. Um, but I got to give to North Carolina as a favor because of the, it was the first one first one for all of us.  

[Doug]: Yeah. I would agree with that. I will say, like, it was fun to do that one that we did in the, in the brewery and in Alabama. Cause you know, they were very kind with, uh, there, the free drinks there with the, both the, uh, the, the really great beer that they made there. And also some of the, some of the spirits that they, they home batch there that were just so good. So that was a fun, like kind of different look for a feeling or experience freedom. That was, that was fun in its own. Right. But, um, as, as we kind of move in the last chapter of the conversation today, I'm wondering, you know, Robert, we were talking about the accessibility that we, that we provide in our screenings and the importance of that. I'm wondering in your personal life, you know, what your relationship is like to accessibility. And if there are certain, um, parts of your life where, where you wish it was better or hope in the near future, that there are, you know, better, better things to help, um, accessibility in certain ways  

[Robert]: That's accessibility. It really depends. Again, you know, I just have to adapt, you know, be positive in the future and just be able to adapt to whatever comes my way. And, you know, when it comes to technology that it technology is making things more and more accessible. So, you know, I really need to look to Helen Keller to see the new technology that's out there. And, you know, I have to put that legwork in my, on my own to make accessibility happen and learn the skills that I need, but I'm hoping technology improves more, but you know, it's going to be an interesting road by future.  

[Doug]: Do you feel that, um, um, more tactile, um, training is something that you'll, you'll take on more moving forward? Is that something one of the ways in which you'll you'll, uh, explore accessibility more?  

[Robert]: Yes. Yup. Tactile sign language, braille, really anything, uh, you know, in the future. I think I'm going to take more classes from Helen Keller. You know, I am losing my vision and, you know, I believe that I may lose the rest of my vision, become fully blind, just like the character already that I played in the movie. So I really need to learn all, all areas. I need to improve my cane skills, mobility, technology, communication, and whatnot. So as my vision changes, yes, I'm going to have to learn more skills  

[Doug]: And, you know, question from Marilyn around, uh, accessibility in the media. You know, I know one of the topics that's been, um, you know, really widespread lately is, you know, with all the presidential addresses and just, um, state, state government addresses, um, they're, you know, the having interpreters there or lack thereof is certainly a hot button issue, um, within any community that relies on sign language. Um, you know, what are your thoughts around that? And what if, what have you seen lately around that topic?  

[Marilyn]: So, um, one of the things I've noticed too, especially through social media, which is, is, can be great sometimes, and sometimes can be really bad, but on a positive note, you know, the community as a whole, you know, we have those who are involved in the deaf, deaf, blind community. They really try to do whatever they can when it's not on the TV screen. Sometimes we've seen interpreters who will go ahead and set up on Facebook, an opportunity for, okay, today, president Trump did a, uh, a live stream of this here. It is now interpreted and, and that's great, you know, it shouldn't have to happen that way. Um, but at least there's people out there who really do care and are trying to do what they can do their part to help and, and allow for that full communication for everybody. So everybody knows what's happening. I mean, it's just, it's not fair whatsoever. I mean, you've been just imagined, can you imagine some of the government officials out there, if they sat down and we put them in simulation. And unfortunately, the thing is that has to be thought about is, you know, when, when it comes to vision and it comes to hearing, comes to vision, hearing loss, anything can happen to anybody at any time. So this isn't something that, you know, you know, just only a person who was born, I mean, you know, not everyone is like Helen Keller, you know, there's progressive vision loss. There is, you know, due to a accident. Um, this can happen to anybody. We have to be prepared to give accessibility to everyone out there. Cause there is a diverse community and it can happen anytime. Um, it's very tough, but especially now, but there are some good people out there trying to make it accessible.  

[Doug]: No. Yeah. You know, w w I think something that I didn't know about, um, prior to embarking on this journey was that, you know, some people, sometimes people go, well, do, do you really need an interpreter? They're like, can't they just read captions? And what I didn't know. And maybe some coming to this broadcast might not know this, but, um, ASL is really the like native and primary language for some people. And like reading captions is not necessarily as user friendly for them because that's not their native language and the same way that, you know, you might be bilingual, but one of those languages is your native language. And one's one that you interact with sometimes, but aren't quite as sharpen and that, and correct me if I'm wrong, Marilyn, but I've been like, that's something that I've learned throughout this. And that's, um, I think I answered the question of like, well, do you really need that person there? It's like, yeah, there's a lot of people that really do.  

[Marilyn]: Yeah. And, and, and the thing is too, you can't just put any interpreter up there. You have to put an interpreter who is skilled and knowing the terminology and knowing how to provide that communication access. I grew up signing exact English. I did not know about ASL until I went to Gallaudet. Really, when I went to Gallaudet, I was like, Oh, this is beautiful. I wish I knew this growing up, but I, you know, my family didn't find that they signed a different way. You know, it is a beautiful language and it's just, um, you know, you have not anybody, you know, every we teach, we have to tell you, it's mine that I've learned, and you have been trying, you're getting yourself immersed in the community, but, um, it does take time and, and you have to have some skilled interpreters out there to be able to do different jobs. For sure.  

[Doug]: So with, um, just the closing moments here, today's broadcast. I'm. I just want to reiterate that, um, if you're not already aware, we are doing a huge celebration for deaf line awareness week, this upcoming Thursday, where we'll be doing a free and accessible live stream of a feeling through experience. Um, if you want more information to sign up for that for your free ticket and for more information, go to feelingthrough.com , um, and again, make sure you register sooner rather than later, because Thursday we'll be here before we know it, and you want to have all the information in your hands to be able to join in. Um, Robert will be there alongside myself for the, uh, discussion and Q and A afterward, um, and we'll have a chance to get into more of these topics and other things there. So, um, if you haven't already go to feelingthrough.com , sign up for your ticket, and also that with other people, like one of the great things about the community that we continue to build around this is that there, you know, so many of you who are watching this now, and we'll come to this later, have been so tremendously supportive of this. So thank you so much. And we've really relied on our community to help get the word out about certain things. You know, a lot of our posts that really kind of spread out into the world because so many of you are so kind to share it with other people. And that's really, that really goes a super long way. I know sometimes we're sitting at our computers and just clicking, like share on Facebook or sending something to someone Instagram doesn't like, really feel like that much. But when you multiply that over a lot of people, it's the difference between like, like a small, but like, you know, well, spirited group like us feeling through it really helps us get the word out in a way that, you know, not being some large company with all the resources in the world, like buy all these ads and we really wouldn't be able to do it otherwise.  

[Doug]: So again, if you, you know, if you're able to share this information with your friends and family, your colleagues, it really helps a lot. Um, and also share this information about feeling through life, you know, thanks. It's so awesome to see a lot of familiar names pop up on the screen each week, and we want to continue to grow this community, um, address more timely and important topics. And the more people that participate in that the better. So, um, thank you so much to Robert and to Marilyn for joining us today. Um, thank you so much for, to our interpreter, Aaron, who, who is doing double duty today. Um, thank you for that. And, um, yeah, well, obviously you'll, you'll all see Robert again on Thursday and Marilyn. We'll certainly have to have you back on again. There's, there's plenty more to talk about. Um, so yeah. Thanks. Thank you to everyone. Have a great weekend and, uh, go to feelingthrough.com . Sign up for your free ticket and we'll see on Thursday. Bye everyone. 

Feeling Through Live • Episode 9: DeafBlind Grad Aims to be Next Ryan Seacrest

[Doug]: Welcome to episode nine of Feeling Through Live. I'm really happy to be joined by Billy Pickens today. ]Billy is a recent college grad. He's also going on track to be the next Ryan Seacrest's, he's gunning to be a TV and radio personality has already gotten a decent amount of experience in that space. And we're really excited to talk about that and a whole host of other things. Uh, before we hop into the conversation, I just want to reiterate that June is Deaf-Blind Awareness Month and the last week in June is national DeafBlind Awareness Week. Because Helen Keller's birthday falls on June 27. So the last week in June is recognized as national deaf blind awareness week. Um, one of the ways that we'll be celebrating, um, at the feeling of their experience is we are going to, to a free live stream of the feeling through experience. So we want, uh, as many people to join in as possible, the way you do that is make sure you go to feeling through.com to register, to get your free ticket. Uh, we'll have a lot more info about that on our social media, but please join us, share it with as many people as possible. We want to have as many people there. So with that said, Billy, hello, how's it going? How are you doing today?  

[Billy]: I can't complain. Beautiful day sun is shining.  

[Doug]: Excellent. Well, you know, just to kick things off on the, uh, theme of Helen Keller and it being DeafBlind Awareness Week, I noticed that on your, the homepage of your website, you have one of my favorite Helen Keller quotes, which is alone. We can do so little together. We can do so much. I'm wondering how you feel about that quote specifically in the current climate and state of the world.  

[Billy]: Well, I think that quote is very important and it's been very key to me because one of my, I believe one of my gifts is the ability to relate to people and the ability to have, uh, a diverse group of people that I talk to. Um, being someone who's, uh, both black and a person with a disability, I've always just, I never felt like an outsider per se, but I always felt like I needed to diversify myself, understand different cultures. And, um, I saw the world differently. I didn't see it from a majority perspective. I saw it from a more forward thinking perspective. And so I was able to listen to a lot of people, uh, throughout my life and here in melodical people. And I just realized that, um, we do so much when we're together, we do so much regardless of how you feel about different things and whether we agree with this or disagree with that, I just always realized that we do so much as listening to each other and learning from each other and just having the whole thing of a you're right, or you're wrong, but building together and just making a better world for everyone.  

[Billy]: And so that, that quarter has always been something that I've stressed and that's always been important to me. And if you think of all the great movements that have happened in the world, um, they weren't just done by one person. They were done by a group of people that, uh, agreed that this had to be done and they may have had differences in opinion on house done or other things. But when they came together, uh, achievements were made and things happen. And so I just always live by that belief full. It just signifies that belief in it and a special way. So I appreciate that. And Helen Keller is somebody I very much admire. So very important to me.  

[Doug]: Yeah, no, that's, that's beautifully put, do you, do you feel, you know, I, do you feel that people, or like, say let's L our, our, um, you know, the state of things in the United States specifically, do you, do you have hope that people can come together? Um, is that, is that something that you see as a possibility given what's happening right now?  

[Billy]: Um, I, I like to be optimistic and I believe that, um, and unfortunately it's, it's taken many lives lost to do it, but, um, I believe that there is a sense of, uh, we need to listen to each other. Um, now what that will amount to, I don't know. Um, but I do believe and hope that it amounts to some change and, and a better future for all of us. And I'm grateful that, um, especially my generation is very open minded or going to be very open minded, and we're really trying to strive for that. And I'm grateful to see that happening. I mean, and not just arbitrarily my generation, but yelling hit old as well. It seemed to be, uh, trying to come together. And, um, sir, there's exceptions to that, but I do believe based on what I'm hearing about, I do believe that, uh, hopefully there will be something, some change and some movement. But, yeah, I'm very optimistic, but you never, never know what happens. Um, but I do believe that there could be some hope and shamans. I do, I think he will be signed, but I think what happened tomorrow. No, but I think that it will be something that over time happens and the more people listen to each other. So I'm glad that the people are at least listening to each other. So it's like,  

[Doug]: Yeah, no, that's, that's, I think what you're saying is particularly about the younger generation. I mean, certainly seeing, you know, what's happening particularly with protests around the country, certainly. Um, those are largely made up of, of the younger generation and, um, you know, hopefully that bodes well for, for things moving in, in a, in a different and better direction moving forward. What what's, what's the climate been like? Where, where you're at in North Carolina as of late?  

[Billy]: I think specifically Charlotte has been a pretty progressive city. Um, I once heard that, um, people say Charlotte is just in York and North Carolina, and I wouldn't disagree with that. I would say that it's gotten pretty diverse. Um, but I mean, in America, you're going to have, uh, people that, uh, don't love this area just in the world in general, you're gonna have people that are aren't open mind gate, or, uh, feel a certain way. And I'm going to have to struggle with that. I don't think it's say a red state or blue state thing. I think it's something that, uh, when people have certain views, they don't necessarily listen, but I'm, I'm glad to see, as I was saying, I'm glad to see that, especially my generation. Um, and especially here in Charlotte, I think that, uh, we're striving to do a better job of trying to listen and try to bring people together. But, um, I think Sean has done a pretty good job, um, as far as I can tell. Um, but there's always going to be still growth and change to be had, and I am an improvement to be had as well. So,  

[Doug]: Mmm. Yeah, no, certainly, uh, certainly there's, there's growth and improvement to be had. Um, so I wanna, I want to talk a little bit about, um, your, your pursuit of the entertainment industry. What, what is it that, um,  

[Billy]: Is your, is your greatest passion in the entertainment industry? Um, so we have to go back a little bit. So, um, when I was younger, I would say about, I mean, I was kind of loved it, but when I was very young, when I was like seven or eight, um, I used to go, I was, I was an am still a big sports fan. So I used to ride in the car, my mom home from school when I would listen to these sports radio channels. And when we would get to my house, she would say, Oh, Kim going in and I would say, Oh, wait a minute. I'm going to listen to, uh, this sports station, cause I'm really riveted by it. I love the international with the callers and the people. And it seemed like one of the places where there was some comradery and people coming together. Um, this is, we're talking a lot about people coming together and that's important. I think Eric, when he did that, um, especially when I was listening to the radio and I heard people calling in and they were all bonding over sports. It was different people, um, you know, different backgrounds, uh, and they were just all coming together and bonding over sports. Now, uh, people always said that I had a radio voice and I kinda hopped around a lot of careers growing up. I wasn't quite sure whether people said or radio voice and I really loved radio and I really loved TV, but it didn't really Dawn on me until I was about 13, 14 years old. And I started struggling with anxiety and it got to the point where I became extreme introvert. I didn't want to go out and socialize with people. I didn't really want to go to school.  

[Billy]: And one of the things I did was I really into watching shows like TMZ and things like that. And they really helped my anxiety. They really helped me having an escape from things that I was dealing with internally and externally as well. And, um, it just really helped me overcome a lot of that. And so, as I got older, I, I also got very much into music. Um, I've been in music since I was little. My parents were very big in the music, my back collected vinyl, but I especially got into it during those times because I was dealing with a lie and I didn't wait, go out and socialize with people. And so I really bonded over, uh, things like music and radio TV. And to me, I guess that was my connection to the world. And then as I got older, I just realized that people weren't necessarily, uh, different in that I wasn't alone in that a lot of people were, uh, using entertainment and TV as a way to escape what they were feeling. And it really made me want to use my platform because not only was I passionate about sports and music and TV, I want to use my platform to both have fun and enjoy talking about those things, but also spreading positive message and help people that have their own mental health struggles or physical health or anxiety or whatever the case may be. And so that's why I really chose, uh, uh, one of the many reasons I really chose entertainment was to help people overcome that and, um, do that as it did for me.  

[Doug]: Well, that's, that's certainly a, a great reason to get into entertainment. So what, since you, since that inspiration to, to start that journey, what, what is your experience been? Say it again, since, so, since you were initially inspired to get into entertainment, what, what have you, uh, what have you been able to do thus far?  

[Billy]: So, I'm, yeah, I believe in timing and I believe that our purpose has shown to us, um, a lot. And, uh, one of the things that really helped me was, uh, last year I did an internship at the children's hospital downtown here and, uh, Charlotte, North Carolina. And it's actually part of a guess what the Ryan Seacrest foundation. Um, and I found out about it through the student advisory board for disability services at the college that I went to. Um, I had a friend who just so happened to know the coordinator there and she was like, you'd really enjoy it. And so she got us some types and, and whatever coordinator we liked my vision, we liked what I, uh, what did you do there? And I came in there and I just realized, um, as I came in there that I just felt this was truly my purpose. And the reason being is because I felt like I was doing the same thing that I had a really felt I wanted to do. And, um, with the children's hospital, you have a lot of children that are typic in their heart and they're going through a lot and are part of the internship was to do radio shows and through our radio shows, help them overcome those obstacles that they might be dealing with and just help them escape that, uh, in a way. And when the, my show is about positivity, you know, it's all about uplifting people. So it's all about overcoming obstacles, anxiety, depression, just things that they were dealing with. And, um, I really got a positive response to it. Um, I mean, I can't say it who I impacted or what exactly they felt, but what I can say is that I felt like I left there changing it, um, more better than it was when I came in.  

[Billy]: And that was important to me was just, um, being of good help and, and being of service to those, those children and helping them, you know, even just a little bit through those hard times. And so, um, that was one way I really started doing that and it was important to me. And, um, I also got a chance to, uh, but to Helen Keller center in New York, I went there twice. And the first time was, uh, in a program where I got a chance to experience the campus and what the campus was like. The second time I went, I went for a seven week program where I got to learn independent living skills and socializing with others. But one of the greatest moments and experiences I had up there was being able to job shadow. And I went around as a different radio stations. If you have a radio stations in the area that got to talk to the program directors and the people there about their experiences and they gave me advice. And I thought that was really great. And, um, one thing I, I learned, uh, just, they didn't have to tell me this, but just their, the things that they would tell me is that we are here for the people. And I think especially now, uh, during these times during the state of the world, it's important as an entertainer to be there for the people. And I don't think of myself as someone who's trying to make a million dollars or have a big house. Um, I want to be sir. I mean, sure. I think like any human, I want that, but also I think that I want to be a service for the people and, uh, to use my platform and my passion and my gift to help others and influence others and hopefully make a big impact on the world as a whole.  

[Doug]: Yeah. Well, That's, that's certainly a good, uh, a very noble pursuit. Um, so just kind of, I want to walk back a little bit, um, to, you know, you talked about, you know, dealing with, with anxiety at certain points in certain ways, in which like your pursuit of the entertainment industries is helped, um, channel that and deal with that. But can you talk to me about, you know, maybe some somethings that come up when you think about growing up or are particular challenges that you face that might have, you know, participated in that anxiety before you were able to, you know, find your way and channeling it through your passion?  

[Billy]: Um, I thought one of the biggest, uh, challenges was, uh, advocating for myself and that was something I had to do a lot growing up, um, because a lot of people, especially in school and teachers, they don't necessarily, um, they're not, they're, they, they have good intentions, but they don't necessarily know how to, she's a deaf blind person. And so growing up, I had to after myself a lot, and when I was younger, I used to put a lot of bags at the hands of my caregivers or my mom or whoever was around. Cause it seemed convenient. Um, it's not that I didn't have a voice or make my own decisions. It was just that I prefer to just let them do that and just go by my day. And, um, I wasn't really able to attend my IEP meetings since I was 14. So I was like, well, they're going on this? They, you know, they can take care of that. Um, so I think that early on, I became, uh, very shy by asking for myself diet and know how to, and it wasn't until about sixth grade. And I had some teeth specifically how to teach her that I was a math teacher and I hated math and still like it. But, um, no back to anyone does like it.  

[Doug]: Now you're going to meet both I'm on the same page as you know.  

[Billy]: Yeah. But in sixth grade I had a teacher and it was, it was a struggle with communication between my math teacher and uh, my other teachers and my parents and families, a lot of voices, uh, in the mix. And I when really asked me, what do you think worked best for you? Because a lot of people thought that they knew what would work best for me. And so, um, it really, it really caused a lot of anxiety because this is so many voices in the mix and I was struggling in the school and my mom's ready to put me in the school for the blind, but I wanted to be around my friend and say, and be a regular school. So I just, I really fought to stay there. And some of my matches are he said that just give me three days with him, just let me work with him. And I will make sure that he understands the math and it, that, um, I made, uh, I had a feeling great about, I turned it into a passing grade. And so, but the one thing I learned from that is the importance of using my voice and speaking for myself about what I'm dealing with or what works best for me. And so I started writing a letter to my teachers and the letter. I would just tell them all my accommodations, everything I needed, but most importantly in the letter, I would say, if you have a question about me, talk to me and, um, it was important because I think that I create a very creative, a big, uh, lane for me to really communicate specifically with my teachers and, uh, not for them to go through everyone else communicate with me. And it really has changed a lot, um, teachers really what, either way to communicate with me and then realize, Oh, he has a voice. He can do this. But the one thing is, is I had to constantly do that.  

[Doug]: You'd mentioned, uh, being a student at H can see you were talking about that a little bit, but can you tell me, um, just paint the picture for me as far as like coming into that situation and then like kind of what, what you learned or gained from being there?  

[Billy]: Um, definitely, um, well I have nothing but good things to say about H Nancy. Um, I love the center. I love the people. Um, and I will say that coming the first time I went, it was a really good experience, but I knew that it was just a trial, like basically. So I was just going near it to see what it was, like, see what the program, what was like, and get a feel for the campus and siding, think of it as an intense program or like that, um, the second time going into it, I didn't really know what to expect. I didn't know if people are going to be strict and they were going to yell or I didn't know what to expect. Um, so coming into it, uh, I was just kinda a little anxious about it. I wasn't sure I was definitely excited to go and I was excited to maybe learn something, but I wasn't sure if it would be the greatest experience, but, um, from the time I was there from the first day, you weren't really welcomed me and it felt like I was going there other, and that's the thing.  

[Billy]: They, they treat each other like a family. I know all this come back to this whole, uh, being together a part. I know it sounds cliche, but it really was when each can see embody in his, what he's came, see your bodies. So when I was up there, you're all kind of achieving the same goal. Everyone there, whether you are fully deaf or hard of hearing deaf, uh, whatever the case, we were all out there, just trying to shoot the same hole and gain our independent living skills, gain our job skills. I bet ourselves, and I flooded you all bonded over that. And so every turned out to be a great experience for me, the teachers were amazing. They were hands on with their approach. They had the technology or the resources. They knew how to approach my, my needs and make sure that I got what I needed and learn what I could while I was up there. Um, I took cooking classes and, uh, I've learned how to, uh, organize my clothes and color them. And, um, also my favorite, the job experience, um, I got to go different sites and learn about job skills and different things I would need to achieve and have success. And it was just, it was a great experience at one thing they recommended I did, which I did was write in their newsletter since I left to right as well. I'm going to get some just speaking. And so I wrote their newsletter and it got a great reception for it. They loved what I wrote and wrote two pieces and it was just a great experience. And so, um, I will always have a great amount of support and appreciation for the Helen Keller center, um, what they've done and what they continue to do in my life, where they can see to mean to me, um, as an individual at their plant individual and as an individual of generals. So, um, yeah, it was, it was a great experience  

[Doug]: Prior to, prior to being a student there, had you been a student in other situations where, where you felt like you were in the same boat as your peers, is that something that had experienced before being an HPMC as far as like, have you been around, like, have you been around a lot of other students who are deaf blind prior to being at HCMC?  

[Billy]: I'm not exactly. I'm not exactly. Um, at that degree, um, the past few years, because my mom's on the deaf blind project, she's a coding director. So I've had a chance to be around a lot of deaf blind people in North Carolina. Um, but it was exactly the same cause you're gonna ride them regularly. And I think that may have been the difference was that at East TMC, I was around those people regularly. Maybe we shared meals together. We hung out together, spend time together. Um, and they were just, they were thinking we were there for each other. And so, um, I had that black friend here, but, um, it was just, I think, I think the comradery and the ability for us to all be in one place at a given time and an extended time was I think when they separated each team C in terms of, um, how I approached and learn from other deaf blind people. So, um, yeah, I would think that's, I think that's a fair point say, but I also think that, that it was also more just me being around them so consistently and on regular basis,  

[Doug]: W you know, I was recalling, we, we, uh, chatted once before you've mentioned, um, something that you'd like to do as a segment on your show would be, um, I think you've referred to it as tell me something, I don't know, a segment called that was that it, well, maybe I'd like to, um, throw that to you as a segment and asked you to tell me something that I don't know.  

[Billy]: I don't know. It's a good question. Um, tell you something you don't know. Um,  

[Doug]: Just spoiler alert. I don't know a lot of things. So did you say something, see,  

[Billy]: Um, did you, well, I'll just tell you something by myself that I don't think I told you, but did you know that I've been to all 50 States? Oh, wow. All 50 States. How long did that take for summers? And, um, it actually started because, uh, when I was younger, I was a bachelor, a math thing. Again, I was doing a math project with my dad and my dad had traveled loud with his mom because my grandmother loves to travel outscore things. She doing, she's been to a lot of places around the world. And so, uh, he was telling him about his experience and I really wanted to experience that. Um, and I kept asking him, what's it like out there? What's it like out there? And he would give me descriptions of it. He would tell me, um, what things were like, but I'm more of a hands on person.  

[Billy]: Like I like to experience things and physically be there. I think he saw that. And so he said, let's go on a trip out West to Mexico. And it's crazy how it started. So we started driving and we said, we're just gonna go to New Mexico. And back you get a Tennessee. We say, let's go to the grand Canyon because this might be the last time we do base. So went to the grand Canyon. He said, we love this so much. Let's go to LA. Um, I didn't see Doug there, but, um, yeah. So when she got to LA and then, um, after that, we'd liked it so much. We went basically here, went down South to the whirlwinds and, um, just said that we just love doing this so much that we started traveling all over the country. And, um, I'll tell you another interesting story. Uh, what happened? We didn't travel with a lot of money necessarily. We were just, it was very unplanned and we said, we just want to do this. And, um, it was really, really cool, but we were at a restaurant in Alabama once, and my dad was telling me about, um, all the places you've got to save me next year to the Montana and North Dakota, Yellowstone, Wyoming, and all of a sudden, there's this guy that comes up and drops $200 on a table and says, take yourself out West. And my dad's like, why? Like, we didn't really know those guys to random guy that came up and we just talked to him. Got no. And he said, I've been to all these places. And I just saw that your son wanted to be there. So, um, I wanted to help you out pitch in. And so we thanked him and you went out West in a rural kind of a thank you letter, not really expecting anything back, sort of a thank you letter.  

[Billy]: And we kind of told him at the layer that we would go to Alaska, which was the second to last day. Cause my mom took me to widen. My dad said it was too much of a, uh, a laid back environment. He liked camping and my mom like the beach. So she told me there, but be told sky we're going to Alaska. And we sent him a letter and he sends a thousand dollars, says take a central Alaska. So, um, what I learned by that is you never know who you might meet out there. And I wrote it who am really, you have helped me. And that's not just, um, basically go around the room and I thought that's symbolic in life. It, there's nothing wrong with making connections and reaching out to never know who might be out there to really help you and really, uh, give you something to help you with something great life. And so I learned that to those trips, um, in addition, just learning about this country. And so that was a very big experience in my life.  

[Doug]: Wow. That's a that's I don't think a lot of people can share that particular travel story. Um, but it sounds pretty amazing. Um, what, what, is there anything else that you learned about, I mean, I imagine in traveling the country really just in four summers, which is pretty short, um, seeing such diversity of places and people, um, what else, how else did that inform you as far as like your understanding of your own country and moving forward and what you're doing?  

[Billy]: Um, well, first and foremost, I realized we had a very beautiful country and, um, you know, a lot of people say, and I, and I am guilty of it too loud. We'll just say, let's go to the Eiffel tower and let's throw all these expensive places. And there's so many different places, just, uh, you're looking for the place in the middle, no weird you go to Montana, Wyoming, Alaska, just very quiet for something that's sunshine and beats is a why in Florida, a great places as well. There's so many great places throughout the country. And it was just a beautiful experience, just experienced that and know that. And, and just, uh, as you mentioned so much diversity and the places and the people, we met, people that were from different areas, weren't from different areas. Um, we interacted with a lot of different people with different backgrounds. And, um, I think that it's taught me so much about the beauty of this country, but also the immediate certain people. And, you know, as much as we as much hardship as there's going on in the world, I think there are a lot of great people out there. A lot of people who, um, are just going to different things. And, um, it's important to really diversify ourselves and understand different cultures and different backgrounds. And, uh, it's helped me just build myself and make myself the best person that I can be. And, uh, the most caring and understanding the person I can be so instant, both, uh, both experience and that it was, um, beautiful in the country and also just diversified, uh, my understanding of people and, and just the places that I went to.  

[Doug]: So, you know, I want to touch on with what we saw, we saw about 17 minutes left. Terrible. I want to talk about, no, you, you, you just graduated in December, right? So as a recent college grad, um, and one who's very, I think very fortunate to know exactly what he wants to do. W how do you feel entering the world and the workforce at a time? That really is one of the most, like uncertain times we've ever seen. W how do you, how do you negotiate that with being someone who's like, just stepping out into that space for the first time?  

[Billy]: Um, well, there, to me, there's a pro and a con. So, um, the pro was that I really was, uh, I kind of made the decision that I didn't want to work. I mean, I wouldn't be against it if I had to, I didn't want to work a regular nine to five job. I wouldn't do something that was different in all schedule and just do a little bit of this and a little bit of that, and also worked flexibility in my life as well. Um, and so I think that was something that I really think about. And, um, yes, the struggle of that is that especially during this time, uh, is definitely harder finding work. It's definitely harder finding employers that are hiring, um, you know, so many people have lost jobs during this time. And so it's definitely a lot more difficult and it's been a struggle.  

[Billy]: But one thing I will say is that I have had the mindset of being able to adjust. And I mean, I've overcome so many obstacles. And I think that what one piece of advice would be to everyone out here is, uh, have a mindset of adjustment as hard as it is. Um, and I know for me, I can be a big planner sometimes too. I can be someone who doesn't like being spontaneous, but I go back to my travels around the country. That's another thing I learned is that it's okay to be spontaneous. Cause we had no idea when we got on the road banking in California, it was just something we did and we had to take that chance and do it. So sometimes you have to take the chances necessary to get through your experiences in light. And, um, and so it's okay to have some, some down moments or some moments of doubt. I think we all do, but it's also important to be willing, to adjust different environments, to be willing, to make the best of every situation. I think that's what I've been trying to do. And thankfully, because I had the mindset of someone didn't really want to just settle for one thing, I really have different avenues that I can wait think about. And I'm pushing myself towards, like, not only I want to be ready on TV, but also want to write books and be in the music industry and do a lot of different things. And so I think it's important to have that mindset and be willing to adjust and not so much backup plans, but also to be willing to adjust to the plan you may already have. And maybe some things have any big change, but that's okay because in the day you're going to be successful when you're going to reach, reach the goals you want to achieve. So I don't let this moment, or like this struggle put, put you down or put you in a place, uh, that we can film. Like you can get where you want to go. Cause gonna always be a way, even if it's not the way you expected, there's always a way to get somewhere. And so I think that with that mindset, that's kind of how I've adjusted to finding work in a span.  

[Doug]: Well, on that note, you know, and I think that's an amazing mindset to have, but how do you relate to relating that mindset to what's happening right now, as far as, um, with this, with the really the protest sweeping around the country, as a response to the killing and George Floyd and everything, that's come in the wake of that, you know, being a black man, who's also a black male with a disability. Um, I'm wondering how, how you, how you feel in the context of how you're perceived by other people and how you deal with that.  

[Billy]: Um, is definitely a bitter sweet feeling. Um, and I think that sometimes people it's just such a thing as microaggressions and I mean, sure you have people that aren't open by dating just, uh, don't want to attempt to think about others and think about what others might be going through. But I think in my experience, especially as a black person with disability, it's been a lot of, um, them not wanting to ask me questions because they feel they might be offensive or they feel they might make me uncomfortable. And I've also to make clear to people. One of the things that I do, um, when I was on a student advisory board and even now when I'm giving speeches and, and one of the things like this is, um, reminding them that I want people to know who I am. And, um, if, if one thing I've learned, cause I was in a student advisory board where I was in a club meeting, uh, for one of our clubs on campus with people with disabilities and someone asked me, they said, do you ever get tired of as a black person?  

[Billy]: Do you ever get tired? Uh, educating people? Cause I was talking about the educating and teaching people and I said, no. And the reason why I said no is because yes, there, there may be. Um, some people would, I refuse to be educated, but at least in a room of 10 people, if I can educated, if I can educate one person, that's one less person will not be educated and walk around with, um, with ideas that don't align with good things or don't align with equality or don't align with any. So, um, and also, and that's also one person who could air force go educate someone else that they know. And that's what I tell all my friends, especially my white friends, is that it's important because they can reach them in ways that maybe I can't. So talk to your family, talk to your friends about privilege, use your privilege to educate others I am. And if I can just educate one person, like educate all 10 people in that room, that's one person that would go educated and other. And so I really to do, I got to use my voice and to educate people about who I am and remind people it's okay to, to listen. It's okay to ask questions. Um, and I read that you asked me I'm worth going dating. Don't ask then if you do ask, um, something that might be uncomfortable because I'd rather you learn, I'd rather you understand where I'm coming from and listen. So, and I'm glad to see that. I think I mentioned this earlier, but I'm glad to see that that's happening more. Now. I just see that it seems like people want to listen to each other more. And I hope that that, that just doesn't happen in a black community. That also happens in a disability community as well, that, um, we can listen to one another and that people I, that may not be able to relate necessarily Tim listen to us as well and understand our needs as people.  

[Billy]: So, um, I think the fact that they're listening is important and you just never know what you might learn from somebody, um, easily to just judge and say, Oh, I know what I know. And I'm good with that, but just, just try you don't agree with everything. They stand for it. Just try to listen to them and you never know what you might learn from that person. And so I think that that's, what's been important. That's why it's been so important to use my voice. Um, especially with entertainment is to bring people together because people bond over sports bond, over movies and TV and music, but it's important to maybe use those trivial things that people, uh, doing their spirit time to, uh, bring up different issues, raise other issues and, uh, bring people together in that way as well. We can start here and we can build from there and become better people and better people to each other. Because do you feel like you've been able to have more conversations recently with your peers, with people in your life then how has what's happened lately to spark more conversations? Yeah, I think that I've been guided to do that. Um, and I think I mentioned this earlier. I was never trying to be someone who, uh, did speeches or somewhere. I mean, when I was early in college, all I cared about was making friends and getting Domino's pizza ate at 12 o'clock at night. Um, that wasn't thinking that I would one day even be here if, um, I say I enjoy it and I love it. But at, at 1817, you're not really thinking about those days. Um, I recall going to debt, blog conferences and not really wanting to be there rather being my friends and things like that. But I realized that the situations I was going through were relatable and people are going to them as well.  

[Billy]: And I think the biggest motivation for me is I didn't want people to go through what I went through, um, or other people may have gone through. And so I want us to use my platform to help other people. And I think that that's put me in a position where I came at those, um, like I did in college and the student advisory board or, um, like I do with my speeches. And, um, because I had the opportunity to speak to somebody, diverse people. I believe it is my purpose. And, uh, it's important for me to, uh, speak, speak up and have a voice and provide a voice for those who may not have a voice or may not feel like they have a voice. And so I think that that's, uh, what's been important to me and some grateful for the opportunity and the platform to do that inside. I think that that's what that's given me. Hmm. Yeah. Yeah. Um, ECC as well. Um, ma where my mom works, especially well chosen assistance center, um, where they, they have parent educators and they talk to parents and my mom talks to a lot of different parents, um, from, from different backgrounds and work on different things. And she advocates for them as well. Um, because there might be some people that are struggling, whether it's a racial issues, whether it's issues with a school disability issues. And she, she works to advocate for them as well. And so I go out, I'm a part of the youth leadership team there. So we do meetings together and we meet up and it's also a great diverse group of people with many different disabilities. And we go out and do panel discussions as well with different parents and teachers about our experiences. And, you know, the one thing that I always say is that, um, I'm grateful to have a voice I want to cause he would have a voice, but I think my main goal is not just for me to have a voice, but for me to provide a voice for others and for me to provide a platform for others as well.  

[Billy]: So, um, I always, when I do my speeches or I do my prison, teachers always say, I hope that yet, you know, maybe I inspired you or I impacted you what a great way. But I also hope that in addition to me, impact and UI impact you to go out and use your voices well for good and help others. And so, um, and if I did that, I feel like I've achieved my goal and I've had success in that.  

[Doug]: I love that. I love that. That's so that's so beautifully put, well, what kind of, um, for the speaking engagements you've had, what, what can you tell us about some of those specifically, what kind of in speaking, speaking engagements, have you participated in thus far?  

[Billy]: So, um, specifically I, I speak to a deaf blind community or disability community in general. Um, the last couple of speeches I gave were, uh, mainly about self advocacy self-determination and asked me to bring diversity of, I speak to teachers, students. Um, I spoke at the South Eastern, uh, for upline youth. Um, I was also a mentor there and, um, I really, I really try to use my voice to, uh, both explain my journey and what I've been through and also educate others on, on AB obstacles or having their journey. Um, and so those are mainly the speeches that I've been doing lately, but I'm really excited because I just received an offer to speak for a Microsoft or the Microsoft direct. There isn't a plane state. So in August I'm fighting for the South Dakota, um, and speak to them. And that's a whole, another diverse group of people was going to be government officials, corrections officials, and, uh, a lot of different people.  

[Billy]: And I think the reason I'm excited about that is because that's so many people with power and with influence. And if I can use my voice to talk to the people in high places with power and influence, um, I can hopefully, uh, use my influence to influence them in a positive way. And so I'm excited about that. So the messaging won't necessarily change, but, um, I'm glad that the diversity of people and the type of people I'm speaking to walk will change over time. And so, um, those are mainly my demographics and also when I speak  

[Doug]: That's, that's amazing. So w with the last few minutes, cause you were starting to talk about the future, um, in, in that future and speaking engagement, but what else, what else does the future hold for you? Um, both in, you know, what you already know is coming up and also what you, what you hope to be able to do in the near future?  

[Billy]: Well, I'm, I'm very optimistic and I'm also very open to what the future holds. Um, yeah, I really, uh, hope soon to get into the entertainment industry and really, uh, do radio and TV fully. And, uh, we're from different places around the country, um, where that is and what that entails. Um, I'm not quite sure yet, uh, still working on that, but I do believe the future holds something good. And, um, I definitely, my feature now is, is, uh, less about where I am and more about what I can do and the impact that I have on people. Um, so whether that's here in Charlotte or whether that's in a York or LA or somewhere overseas, um, I think my goal is to go out into the world and have a positive impact on people. Um, and so, uh, that, to me, that's, what's the most important part about the future and it wouldn't hold well. So it's not so much where I want to be, where I can be to have the most impact and the best, uh, positive influence on as many people as possible, right. A world.  

[Doug]: Well, what know, I, I, I'm wondering when you're coming out to LA so that we can reunite there one second happen,  

[Billy]: Uh, when, when all this is over, I'm definitely gonna make it sure about the, um, amongst women, but I, I definitely would, I'd definitely love to come out to LA and, um, definitely and definitely beat out.  

[Doug]: Can you actually wa how did, can you, um, describe how we met each other in the first place?  

[Billy]: So, um, it's, it was a pretty interesting thing. Um, so Doug has a feeling through experience and, uh, my mom was telling me there's a premiere of a movie called feeling third, um, here in RA in Raleigh, North Carolina. And I was like, wow, that would be pretty interesting. Um, I'm, I'm a big movie fan, so it should be good. And so I went, and I was also asked to speak on the panel, um, as to filling their movie with other deaf blind people about my experience. Um, one of the things that I'm doing now, and, um, that was how I met Doug and I all started with, he enjoyed the movie, um, such a great movie, and I had a great experience there. And, um, it, it meant a lot to me. So, uh, that was how we met and we've been, we've been tight ever since, so yeah,  

[Doug]: Yeah, no, it was, uh, it was, that was actually the very, the very first screening, the, the premiere premiere of the feeling or experience that you were not just attended, but were a part of. Um, and it, it's just, it's really cool to be able to circle back almost exactly a year later, a little bit more than a year, but almost exactly a year later to, to sit here and speak with you today. So I really, I think that's such a great full circle, like three 65 moment. Um, and it's really just it's I know at the time you were, you know, you were a college senior, um, speculating about what you'd be doing, um, after, and it's so great to, to hear, you know, the amazing speaking engagements you've already done and what I'm sure is going to be a very, very bright future for you. And I just hope, uh, when you are the neck, not just the net when you're not, not, it's not the next writing secrets when you are the Billy Pickens, um, that you you'd come back and sell, talk with us here and feeling through live again.  

[Billy]: Definitely, definitely. I will. You'll be first on the list too, you know, if there's any, if there's any way I can help, we have to move you or whatever, I'm, I'm more than willing to help. So, um, that's definitely gonna, that'd be, uh, a promise.  

[Doug]: Awesome. Well, I'm gonna, we got that on tape, so I'll be able to play that back for ya. You can't go back.  

[Billy]: Yeah. You play it and then give me something in writing to sign.  

[Doug]: Perfect. Well, on that note, um, Billy, thank you so much for joining us today. We'll definitely, definitely not to come back and thank you for,  

[Billy]: Thank you for having me. It was like honor and a pleasure. Awesome. Um, thank you for everyone who tuned in. I know we had some technical difficulties, but I will be able to upload a really clean version of the conversation today without some of the glitchiness and pause that we had in the middle. Um, but thank you for those, um, continued, uh, to watch afterward. And, um, again, a reminder, um, please, uh, check out, um, feeling through.com to register for your free ticket for the feeling through experience live stream. That's going to happen on June 25th at 4:00 PM Pacific time, 7:00 PM Eastern. Um, it's going to be in celebration of deaf blind awareness week, and we want, as many of you there as possible to join in now is really the time to, uh, facilitate connection. Um, and the feeling through experience has always been about, um, the power of human connection and, and, and people coming together despite whatever differences they may have. And I think that's definitely something that, that is needed at this time. So the more people that, um, we have that are a part of that, the better. So, um, again, it's just go to feeling through.com to register for your free ticket, and you'll get more information about that soon. And, uh, thank you for everyone tuned in. We look forward to seeing you again next week. Same time, same place. Bye. 

Feeling Through Live • Episode 8: Black DeafBlind Advocate Alice Eaddy

[Doug]: Hello, everyone. Welcome to episode eight of feeling through live. Uh, we're joined today by Alice Eaddy. Alice, I'd love if you could just briefly introduce yourself.

[Alice]: I am an athlete. I'm a training teacher. I am also, I'm an advocate. I like to paint. Well, actually I do more artwork with charcoal. Um, I like books, you name it, I'll read it and research researchers. My favorite thing.  

[Doug]: Excellent. Well, thank you, Alice. Um, and I've had the, uh, the distinct pleasure to be able to speak with you a good deal over the last few days. And I know that you have certainly lived many lives and done many, many things, and we hope to be able to get to as much of that as possible. Um, but just to, uh, kind of jump into things right off the bat here. Um, I, I don't, I don't see any way to start this conversation other than to address what has been happening, um, throughout this country and really around the world over the last couple of weeks, since the death of George Floyd, um, and the innumerable protests and, uh, movements that have been born out of that, or rather a continuation, um, of movements that have been reignited during this time. And I guess just to jump right into that conversation, I'm wondering, um, what's been your personal experience of the last couple of weeks

[Alice]: In my town or personally in my town. I stay off the street. I was advised to stay home. Don't go out for a while, um, which is fine. Um, but personally it's disturbing and because we're repeating history among other things, we are literally repeating things that have been said and done years ago. Um, the pain part, that's a progressive thing, and we've been living it as a, as persons of color that pain is, has been there, but we just brought it to a surface that it's kind of going to implode. If it's not handled properly, we know how to speak for ourselves. We know how to March the problem is can we do that without the level of violence that has already started the kinds of the escalated on both sides? And we don't need instigators to, to fuel it and make it something that it's not because if you have peaceful folks actually protesting and then the looting starts, but it's not necessarily them. So you have to be careful of who's getting judgment because it's gonna fall on all of us, even if we didn't do it.

[Doug]: You know, Alice I'm so glad you went right to that topic. I think that's been, that's been definitely a, really a layered and complicated topic as far as, uh, the protests and the nature of them in some that have turned, uh, violent at times some stat have there been looting as a part of them. And I know, again, I don't know if anyone has the, uh, the right answer here. I know there's been some contention and suspicion and, uh, really kind of lack of clarity around who's behind what who's starting, what and how really the looting or riding has begun. And really who's responsible for that in instigating that, but with that said, regardless of that, is, are you saying that your position is that the most effective, uh, protest is a peaceful protest?

[Alice]: It might be, but it doesn't mean, and it depends on who's looking because when, before we were protesting, when, um, other Caucasians were protesting with armed weapons, clearly present, they weren't perceived as a threat we're unarmed and still perceived as a threat. That's a problem. So that the, how people start the drama, it's already almost preconceived that we're going to have a problem, whether we're doing anything or not. And that's the difficult yeah. But it's historic as well. And it's never been stopped. So we were starting from the same place almost four years ago in some things.

[Doug]: So I, as someone who grew up during the civil rights movement of the fifties and sixties, what, um, how do you look at what's happening today through those eyes? In that context?

[Alice]: No, I can remember going to jail with my family. So there's a lot of things that, that, that make that whole process fearful. But, and even recently, when they're using the Mason stuff there, their children involved that are getting maced equally, you know, there's the pushing and the shoving and people, elderly are being injured dramatically, and it's clearly on TV. You can't miss it. So nobody is a protected group and they're not, um, they're not managing well, if you want to call it protocol, the protocols are out. You know, when, um, some of our elected officials imply that it's acceptable to use force and imply that there's a weakness by allowing protest to start that a lot of room for a lot more judgments that shouldn't be made.

[Doug]: Yeah. That's well, put, I'm going to just take a moment to, uh, again, thank you everyone who's joining us today. Um, I want, wanna remind everyone to please feel free to ask whatever questions that you may have in the comments section. Um, if there's anything that we've taken away from the last couple of weeks dialoguing about the topic that we're currently talking about, and some other topics we'll be touching upon today is certainly, uh, something that, that can lead to a fruitful, uh, results and hopefully continue, uh, the change that's seemingly happening at this moment. Um, also if you are watching on Facebook, if you could share this broadcast right now to let you have other people join in the more people who join the conversation, the better, if you're watching on YouTube, please feel free to send the link to anyone who you feel like my benefit from this. So with that said, Alice, on the topic of change, you know, I think we're, we're still very early in this iteration of what's happening around black lives matter. Um, and this, this stage of civil rights movement that's happening right now. So it might it's, I think it's certainly far too early to say what the results are gonna be, but does it, does this does what's happening right now in your estimation? Feel like it is going to lead to change. And if so, what might that be in your opinion?

[Alice]: It depends on who you're looking for the change to come from. Um, I think that, um, I've seen some police chiefs make statements that imply that they are more willing to govern themselves. They're definitely not willing to bring in military. You know, there's already been the little bullets that have been landing people randomly. They don't want that. They don't want that to be the further memory of what's going on. They are in instances trying to, um, and commiserate with us in some ways, in some places they're, they're taking a stance and they're taking the knee and they're doing other more humane behaviors to offset. What has already been seen? We know that, you know, what happens with the police and not everybody, it's not all of them, but it's something that is profound, it's intense, and it has not been stopped for years. And typically when people have reported it, especially us, you know, we're there, we're still the now and we're still also the perpetrator. It can't be both. It's just like crying, rape the person that was raped as equally as criminal as the person that did it. And very often the person that's raped is not elite. So we have a whole picture that has to be dealt with. And you can't, you're definitely not sweeping this one under the road. So at least if nothing else, it's here to stay and they have to do something.

[Doug]: Yeah. I, I, that's a really astute point there. And I think at least what I've feel personally, but have heard echoed from a lot of other, uh, individuals and organizations is that, that the tenor of what's happening right now feels distinctly different than some other recent times in that it doesn't feel like it's just going to go away this time. So to speak, it feels like they're the persistence and the numbers that are joining in this movement, um, at least indicate that there is a demand from a large portion of this country and beyond to have there be tangible change and, and justice served, um, before there's any sort of slowing down of, or, or easing out of the protests and demonstrations that are happening right now.

[Alice]: I agree. And you've got a number of international you're watching too, because there are looking in awe that it's still happening. And they're also watching our leaders, political stances or the lack thereof. And, you know, they, other countries have viewed their people of color in a different way, or at least have not been obvious about some of it. And sometimes some of the things that our leaders are saying, really quote point that, Hey, we've been talking about this for years and yes, we're right. You can't pretend it doesn't exist anymore. It's not invisible. It's not going away. You know, there's no, there's not a rock big enough. So we have to be careful of how we speak to some degree. Yes, it, you know, the club effect might've worked the Brazilian years ago, but the club effect isn't going to help right now, you know, we need humanity. We need somebody to actually be with us except us and understand that this is a systemic thing. It's not just the police, it's a whole cultural environment that has been created and allowed to stay.

[Doug]: I'm wondering, you know, I'm just thinking about being familiar now to some degree with your, the advocacy work you do for the DeafBlind community. Um, what, if any overlaps do you see between what's happening right now with the black lives matter movement? Um, with what overlap do you see with the work you do for the DeafBlind community and for DeafBlind advocacy?

[Alice]: In a different area, we have the same problems, um, in the medical plateau and hospitals and doctor's office and all that. We still have the same kinds of difficulties that we had years ago, and we're still having, and as far as a DeafBlind person, they're magnified. So we still, I still personally have great struggles that I do regularly to try and alleviate those kinds of things that need to be taken care of. And here again, very often in the medical field, this goes to the COVID concern is that if, for instance, I were to be hospitalized, there's way too many variables, it would make me very likely not to be awakened next morning, because somebody can conclude, you know, I can have a dead battery. I'm unresponsive, I'm in a real world of crap, you know? So I have to pay attention and understand. I mean, I carry all kinds of things to assist in communication, but in protesting or in wandering around my other big concern is being safe, just walking, you know, cause I don't stay in the house. Typically I take every opportunity to go out and my fear is what happens if somebody wants my attention and I don't hear them, am I going to be randomly manhandled for something that I absolutely had no control over? Cause I never heard him in the first place. And for us, that's a big problem. It's the same thing with going into an emergency room doctor's office and even just making it through the initial outer foil where the person is asking the coconut questions and you can't answer them because you can't hear them and they are not willing to remove the mask. And you can say, I really can't hear you. I have it in writing too. I have it in communication cards that tell them, I can't hear you because of the mask. I need to know what you want. And you know, so I sometimes take a more advanced approach and just tell them, this is who I am. This is my appointment. And I'm going toward the door because I, you know, I have no Curry course if they're not going to make it easy for me to communicate with them. And that's my concern, anywhere riding the buses, I still have the same concern. And especially now because of the way that they've, um, second off access to the driver. So I can ask them a question. I can't ask them to tell me when I get to my stop because I have no way of understanding or hearing them in any shape, fashion or form. So you have created moving vehicles that are actually in essence tomb was her us, you know? So there's a lot of fear in general just by the way it was set up.

[Doug]: Yeah. Can you walk us through a little bit more, you know, I know that as someone who is a cancer survivor and certainly had your fair share of hospital visits, can, can you just, uh, expound upon what you mean about the additional risks you have say in a hospital setting?

[Alice]: Well, you start with you, there is no communication access going in. I've literally gone to for eye surgery and had to argue continuously for communication access in the beginning. Not that was, I mean for days or how am I going to get there in my County? I have to have para transportation. So I'm saying to them, you can't tell me two days before surgery I'm coming in because my, the person's providing transportation needs five days. Notice this was a monumental argument just to get that far. Then you're in the hospital. Um, I was fortunate that here in my state, the direct of SSP New Jersey came and she was my provider for all of their pretesting pre-surgery testing. And she stayed for surgery, but to have to argue continuously, not only what am I going to do, what happened to my dog? Cause I have a guide dog and my dog was going to be there. So I wanted to be sure that she was going to be taken care of. And I was not going to leave her at the mercy of animal patrol. So that's another Avenue that you have to contend with because, um, there have been mistakes made in other places and I'm not about to take the chance that my dog would accidentally get euthanized. Should I end up staying? And somebody has to rehouse my animal. So they provided someone from four H to basically stay in, hanging with my dog while I was there. Um, but part of the process of even the testing you're going in there and drawing the blood or whatever there is, they like to talk, turning around and walking sideways, anything but standing and facing you. Even in my regular doctor's office is saying to them, I'm the one that is not going to hear you. If you call me, you need to come get me because, you know, I don't want you to have an attitude because you know, the sighing and the huffing and there somehow I'm not compliant because I did not respond to you. Um, I have it in writing. I do all kinds of things to make sure that, but going to surgery without knowing is there because you have no way of knowing where your stuff went. You don't know, you know, and years ago I've had, uh, surgery, kidney related procedures and all kinds of things and had no idea what, what I was doing and what was going to happen when I was done. You're kind of like the robot and you're, they just move you from place to place. And nobody even tries to tell you what they're doing that is not only inhumane, it's scary. And it leaves for a lot of distrust in general. So when I'm going further, my distrust of the medical profession is going to stay there. But in this circumstance, knowing full well and our state does have a plan so that, um, if you're a hearing impaired or you have different disabilities, a person can stay with you. But in some places you could be by yourself, you know, um, I react to light, um, I'm extremely light sensitive so that in circumstances where there's bright light and you're talking pain, and sometimes I don't have a predictable response to bright lights and people in motion because I don't know where they're coming from. They're all connected. And you know, it's like I'm watching a space, light show so that I have fear in general. And then you're not really communicating with me. It's complicated. But for me, my worry is that, are they going to know my advanced directives and all those things? I keep that on. Anyway, I have things in my phone, completely regular ready for them to, to show because I don't want them not to know something like my allergies, um, or, you know, but you're guessing you're really technically guessing at what they want/

[Doug]: We were just speaking on the communication element of that as well and how that can be very difficult. Can we actually just take a moment? Can you explain to viewers how we are communicating right now?  

[Alice]: You're on a screen to the left on my monitor and you have, your captions are coming in as a transcript on my side and I am, so that's what I'm doing right now.

[Doug]: And can you, can you talk a little bit about the different communication methods that you use, um, in your, in your daily life, in various parts of your life?

[Alice]: Um, I do sign, but mostly I'm the only one in my County. So there's no really nobody talked to my mom. Um, so I don't really do a lot of signing at home, but, um, I communication cards that are some are in books, like a photo album type style, and they're all I have them related to travel. I have them related to going to the bank, going to a store. And all of those particular ones are in particular books. I also have ones that are on various apps on my phone or my iPad, so that I'm readily available for anything I can think of. Um, I have a particular set for going to the airport and any of that kind of thing, verbal, but it also causes problems because the fact that I do speak most people want to refuse to acknowledge that I'm also a deaf person. So there's a dichotomy in just that area alone. And so sometimes I will travel and don't speak same struggle. But, um, as a sports person, we're always the last one getting on the plane and it drives, I mean, my coach tries really hard and we go through all the right steps and it doesn't really solve the problem. So I'm always going to be, you know, and I always ask for the Pat down, I start that way and, and it just digresses. Um, but I have since, um, signed up for, yeah, I go to Tia. I'm also on a TSA coalition. So I do get to give them input on things of that nature. I also have finally that my little pass and all that jazz, so that should make it easier this year. But, um, when I travel, I have a guide dog. I always carry my cane. You never know she might get an injury. I have to be prepared. Um, I carry I'm also, uh, have other medical issues. So I always have my glucose meter and all those kinds of things. I have one that works for me that I can use on my phone. And I have one for regular people. Should that be there that it talks, but I can guide them through whatever they have to do. So I also do that. I'm kind of like a girl scout except thing. I was a four H leader. So same idea. Um, and when my son was younger, I was also, I led boys troop. But the idea is that you're always have to be ready because you don't know. I carry buttons. I have one that says I am deaf, blind as a double word one on top of the other. I also have one for those that really look at you. It says I am deaf and blind because they really do live in one person. Um, I don't particularly, you wear them 24 seven because you don't want to be a target either, but I always wear either a scarf or something that I can flash it when necessary and hope that it works. Um, but you know, you have. To be prepared and, you know, deliberate braille this way I take with me so that because I can do my phone and all of those things with my braille this way as well, I also wear a cochlear implant and I have a hearing aid. So, you know, and that means carrying a bunch of batteries and all that other stuff too. 

[Doug]: So I do want to actually get to the topic of you as a Paralympian soon before we do that, um, I have a question from Noah and he says, um, thank you for your insight. On your perspective on recent current events made a powerful statement about the way that we are watching history repeating itself before our eyes, from your perspective and experience, what lessons do you feel we as a community should have learned from our history that we need to be applying and remembering today?

[Alice]: No, technically you can go all the way back to Lincoln and remember that when he was working on demolishing slavery and all the other things, his whole principle was uniting the nation, doing economic changes at the same time, doing something with slavery, preserving the integrity of the nation, all of those things simultaneously, he didn't just, you know, it wasn't like I'm going to point fingers on one side and then delegate over here. He balanced a whole lot of issues simultaneously knowing full well that he could be taken out in a heartbeat, you know, and he still did it even when there was, you know, brothers and family split up on one side of the fence and on the other, he was still willing to lead this nation and died in the middle. So we don't have that level of, um, apparent commitment. Sometimes you sit and you look and you're baffled that we can't separate ourselves as a country from the rest of the world, because what we do, somebody is following. Some people have actually done some of the things we are slipping into. Why won't we save ourselves in diverse place. And we have to be able to remember we're international citizens as well. You know, it's a shame that way back in the day, even during the war time, there are people of color were more, um, viewed with much more honor and Valor in battle in somebody else's country than they were when they came up. That's a real problem because you can't, I mean, hero is either a hero one way and all the time or what, you know. Um, and I would prefer to keep my heroes where they belong, preferably with honor and try and honor that memory of whatever they stood for. And we're not doing it too well. Um, because we're leaving too many people behind. We're not even thinking about some of the other people that we're leaving behind. Some of us don't even know we're leaving people behind. So there's a big gap in just think that would be the first thing. Remember what humanity was supposed to be, and nobody was created to be God.

[Doug]: I'm going to just hold one moment while we do an interpreter switch. Great. Are we all set interpreter? Great. Excellent. So continuing here. Uh, so I was, I'm wondering if you could take a moment at this juncture to, to go into a bit more detail about your work with the national Federation of the blind and your advocacy work for the, for the DeafBlind community.

[Alice]: Currently I am the president of national Federation of blind, DeafBlind division. And, um, we're still growing, we're still evolving, but a lot of what we do is, and you know, I'm an information hound. So if I find something, I send it, we're still working on using technology in a more effective way. And we too are working with the zoom environment and, uh, planning a virtual convention. And for us, that means of our reports are going to be pre-read prerecorded and sign language is going to be added to be viewed so that we want to make sure the captions will be there. There are things that we intend and are working toward, but we've been growing from the time I started and sometimes growing there's growing pains, and then there's a growing that's extremely slow, but that's okay. Um, the long, the long range goal is to maintain equality and within the national Federation of gland, because sometimes it's like two separate universes and it shouldn't be because when I first came into the Federation, I came in as a blind person. I didn't come in as a deaf person. I was a, I was welcomed as the blind human being that had just lost a, a mate and needed someplace to be while I was still raising my daughter and doing the sports and following around and still working, I need a piece of me that was going to become solid. So that's where I went, because they said here, be whatever you want, you know, you can grow to whatever you want. And I took that to heart. You know, that meant that I have been in my time secretary for the guide dog division secretary for the diabetes division. I've been secretary for a chapter in our, in my own County. I have, um, done all kinds of workshops still. Do I still take questions from folks anywhere that you know, that send me email? Um, I have gone as far as Alabama, um, and other States to speak. Um, I also, well, technically even when I'm doing sports, I'm still the advocate. Cause I'm the only DeafBlind went out there. Um, but the Federation gave me a place to start. I got friends, I had people that shared, you know, like I needed more braille skills that I didn't think I needed then, but I totally do ended. And when I went to Helen Keller center, I acquired all of those things, but I had to start somewhere. And that was understanding that it was acceptable to be a blind person. I don't have to hide it. I don't have to fake it. I don't have to try and pretend that I know something that I actually don't. Um, that's somebody else's job to put those projections on me to be who I am means. It's okay. You know, and it's OK to, um, you know, everybody has an not too good day bumping into everything. You got the drop C's, you know, those are things are going to happen. What are you going to do to solve the problem? That's my job. I like solving problems, whether it's teaching or whatever. So the Federation was perfect for me, gave me a place to learn. And when I, um, my husband had passed and I was doing, um, I trained as a office administrator and of course did not get employed because when you go through a training school, they don't tell you that it's designed for you get done. If you don't go through years of experience, you're not going anywhere with it. It doesn't matter if you're Microsoft, sir. But I took those skills and I was, did all kinds of secretarial things. Now I started learning to do Facebook and stuff like that. And I did it for my state when they asked me, um, I like organizing things. So I had something to do, you know, somebody said, we need a flyer. Okay, let's do it. Somebody said, can you chair doing the, um, They call it, Um, announcements, like the kind that you do on the radio, that kind of thing. So yeah, I'll go figure it out. And so I, that was something else that I added. So I just collected things as I went, but it was an okay thing because for me, I needed, I had that energy. I had kids that were growing up now they're grown. I got all these, this empty space and then I needed something to do. But, you know, so the Federation was, was the perfect medium for just growing. Nobody said you had to stop. 

[Doug]: I have another question from Christopher. He asks: Alice captioning provides access to the deaf hard of hearing DeafBlind community. Can you offer your experience going through this movement and speak about the lack of caption content and how it is essential for access for everyone to caption their content?

[Alice]: Well, we already know that we don't have enough on TV. We already know that the white house very rarely does it. I find it when I'm on YouTube and I go, sometimes I'll go to the deaf channels and look at it. I don't see it naturally being produced when he's speaking. And that's unfortunate. And I know that we've been asking, um, um, the cafeteria needs to be everywhere because I want my kids to know how to read, you know, when they start out little that's the other thing that I do, I'm also a reading teacher. So when my children are hearing young, originally people were perceiving that because I was disabled, my kids are blank, be efficient, you know? And, um, it didn't turn out to be the case, but so that, by the time my daughter was old enough to go to school, she was reading at the first grade level because I wanted her to, and she didn't seem to mind, you know, but if you to literacy starts with something really teeny mini simple, just show me the word. I don't even have to know what it is. Just pretend that it's there and you want me to see it. And sometimes that's the only acknowledgement we might get. And, you know, um, and if you can't caption like a lot of things in the Federation or audio files, and we have had discussion that said, we want the audio files in a transcript that we can use. Those of us that are using braille or any other means to acquire knowledge. You can interface, you can interface with an MP three, five, it just don't work. You know? And so I need to see it. I have gone to movies with my team and my coaches and had a great time. So I wonder when that one time, about three years and it was so cool because they had, it was the audio description was there and the other headphone was there. And my previous coach who's passed on was also DeafBlind, but he was more high functioning. So he was listening with the audio description and I was using the other, and then we trade and try and figure it out. It was great. Um, or I've gone to concerts and to be able to, yeah, I wouldn't necessarily say you have to have transcripts, but it was the first time I'd ever done it. And how, um, tactically oriented that is that you could feel it through the seats, through the floor, through your stomach or your head. It was a full body experience without you didn't need captions for that. But I had, I also had apps that I kept asking my best friend what's that what's, that what's that because I didn't, I'd never heard particular inference and needed to know, well, what is it? Or, you know, there's this thing that's called a pretty show thing that they do. And that's not actually the concert. I didn't know. So I had to ask, but I need the captions for, you know, anything. Um, especially if I'm home alone, cause I don't have anybody else to talk to. Um, so I mean, I YouTube a lot because I liked the content and I'm fished for particular things, I believe in feeding the mind and saving the body because we can, you know, being isolated is tough enough. Um, and we can do other damage to our own mental health worrying about being home alone, you know, um, being in an environment where periodically there's gunshots four blocks over, you know, I have friends that will text me and tell me and you know, but my doors are locked. I got a security system, so I'm good. But you know, I'm not going to get it from the news. I don't particularly watch the news only, usually on social media. Um, T my son got made a really big TV, but it's too far away. So I don't really try that. I prefer to do everything right up close and personal. So if I'm watching a movie it's on my laptop or something, but without the captioning, you also have no illiteracy, you know? And I also feel very equally, strongly as a blind person. Yes, I have braille, but I don't want my understanding of the English language to only be auditory because when you see it in print, then you getting in arguments. Because for instance, in heroin, tell, we used to argue about what words actually look like that you heard, because they're not spelled that way. And so you're really the English language and is not just to be acquired by sound. You need to see it to believe it. And you can argue about goofy things. Like, um, I had an argument with my braille teacher over the word, Abby, because Abby can be a place. It can be a person, it could be a thing. And why, or why don't senses in the braille book. Why aren't they make sense? They should, there should be a point to this and you know, but I need to know the English language and I'm not going to it. If I don't see it, people don't get that for us. Language is something you touch or you see on somebody's face. And even though I'm DeafBlind, I can still pick up. Um, I guess it's kind of like your aura or a sense of your facial. Like, I can tell if you're sad or you're angry and it's a feeling kind of thing. It's not necessarily a visual kind of thing, but some of us can see that and we need that. And when you're wearing the mask, we lose all of that. We not only, you know, so now we don't have, we can't hear anything projected out of your mouth. We can't see your face moving. We are totally clueless. That's dangerous for us. And then walk around being afraid that you're going to be accosted for nothing, just for being person of color. That's a horrible way is five or a for instance, in a different timeframe. Um, I've spoken at schools and I've had people ask me that I have children. I act like they do it with contempt. And I'm like, Hey, I was fortunate. I wasn't sterilized when I was a child. And it did happen, uh, years ago. So it could've, but I wasn't, and my children are normal. So why wouldn't I want to propagate nearest people that really think that, you know, we're supposed to be, um, incompetent because we're different. And you know, it just wasn't done that way. And I would never settle for that. So if I didn't have captions, I wouldn't have anything because I don't, I miss all of the other stuff because some of the, you know, unless it's a super loud thing or it's something that I'm feeling through the Brown or the floor, or in some other way, I'm going to miss it. So I need to see them. Yeah. Well, that's thank you for walking through that in such a thorough way. Um, you know, I, I know I'm skipping around topics a little bit, but I do want to make sure we cover you as a Paralympian. Cause I think that's a really important part of who you are and a large part of your life. So if you could, if you could just, uh, introduce us to that topic and that part of your life. Well, I actually started by fluke. Um, my coach had been asking me for about a year and a half and I kept telling him no, because I, I was at that time working with edge and I worked with children 14 to 21. And so we do a lot of field trips and going places and, and stuff. And sometimes we used to have gym activities and I had never, at that time originally like 2015 inch, 16 inch, I didn't go to the gym and never been in the gym, you know? And my son has matured in sports would say, you must have been great in high school. And then like, no, we weren't allowed to get off the bench. You know, you went to gym and you said where they told you when you didn't move, because they didn't want to worry about liability. So in the beginning I kept saying no. And then I went to a practice and I only went eight mainly because that particular coach was also hearing impaired like me. And so I listened, I tried, um, and the first, the first session I was on a treadmill and I did not turn it off. So I stayed where I was at until somebody came over and turned it up. But I mean, I've got endurance, which is cool, but I mean, it was, it was kind of a fluky thing because I endured because I had no choice cause I've not had no, but, um, when I ran for instance, the first track meet that I went to, he signed me up for shotput, javelin, and discus. And we went through that rotation and we had a break for lunch. And then he said, you're on for the 100, 200 and 400. And I went, okay, didn't know what he was talking about. Didn't have a clue. Um, cause I didn't know anything about sports, but I trusted him. And so when I ran the 400, he was my guide miner. And um, I don't hear the gun. So what, but I had a guide runner, so I didn't have to hear the gun. So I moved when he moved, when his hand raised from the ground, I knew that he heard the gun that meant run the front and I did well. And when after the race, he said to me, you're really good at this. And I went, what you said, run and you know, um, and I'm pretty fearless and I always improved. Um, my form is not some days it's not great, but because I didn't have anybody to copy, you know, because copying how the stylist's supposed to look into the cadence of the run, I have to touch it, feel it, figure it out and get through while around with it for a while before I figured out that what that means. Um, but going to practice, I live in South Jersey, so it's a five hour trip anywhere. So that starts your day, that five hours to get to wherever you're going to get to the gym or go to the field and do what you do and enjoy it. Um, why do I do it? Cause I totally do. Cause I'm absolutely free when I hit that track. And you say, Ron, I'm good. You know, I, you know, they do when I'm racing, they have a unofficial that taps me on the shoulder so that I know that the Dunn has been fired and there was an official at the end so that I know that I'm done because I have no clue. I don't see any people. I don't see anything I'm being light sensitive. The, the worst case scenario is I have nothing but white and pain. So I like it one day. Um, we were, I have goggles for racing and I like it because it's more painless to participate. But I mean, I don't, I'm not competing per se against another person. Cause I have no idea where they are. I can remember the last race last year. I was second. Did not know I'm crying, coming across the finish line thinking I really didn't do so well because I didn't beat the time that I had in my head. And I was in second. My coach had to go get my metal comeback and I was still crying to explain and show me that I actually was in second place, but I have no idea. So it's not, you know, I'm not running thinking I have to be first. I have to be third. I've never been anything. I've been fork once, but I've never, you know, but it's not about that. It's about being able to be there and do it. Whether, you know, I've also got to meet, did a demonstration with archery and I don't think I ever hit the little center, but I didn't miss the device. So I mean, it was fun or having a line, uh, an official to show you how to throw the javelin better. We had to figure out the language that I understood. So when he said to me, you're releasing, like you're the nail, you're hammering the nail on the, into the wood that I got. Everything else didn't make any sense to me. But when he said throw like you're releasing that hammer, I knew what to do. And last year in the javelin throw, I placed first set a record through a second throw, set another record. So I basically beat myself three times in the course of one rotation and came in first in my age group, just in adapt one. So it's that kind of a thing. It's kind of, that's all I compete for it. What can I beat? I also race a walk. So it's a matter of time. So now I, um, I like doing five Ks and I do the Philadelphia Rothman every year or I've done twice. And the beginning, I did them with my guide dog who is now a retired racing walking dog. She was never designed that way. She didn't, wasn't trained for it. She just did it. You could see valued me. And that was her job, but she completed her last race in November. And her average case was 3.6 miles an hour. So we can really bug you more out there. And um, you know, so it's fun. And I learned to be, to make friends. I learned the value of enough Knoxville took a while. I don't understand most jokes, but you know, because we're in a rotation at the invitation, I was with young kids as well. And that's the other cool thing. You get to see them and hang with them and just love on them. And we have certain kids that we see every year and they come to our group and we all hang out together and their parents like they've been waiting, see if you were coming, you know, and it's just awesome. And my daughter apparently has decided she likes the wheelchair races. So she pays attention, particularly when it's that time, you know, she will cry. She don't push you out of the way, but she'll do everything. But to view around you so that she can see with Belgium and those that there are so many different versions to different, beautiful pieces to get to check out.  

[Doug]: I want to note that, on topic with your, your athletic prowess, how Helen Keller Services is actually doing their run walk cycle, um, in a virtual format this year, um, as for those joining, some of you might know, and some of you might not that June is actually DeafBlind awareness month. Um, and nationally the last week in June is nationally celebrated is DeafBlind awareness week. So, um, to celebrate death line awareness month, uh, Helen Keller services is actually doing their virtual run walk cycle, starting tomorrow, going through June 20th. Um, I'm going to post some information about that later, for those of you who want to partake in that, but it's a really great event. They do every year. Clearly they've had to modify it a little bit and make it virtual this year. But what the virtual experience means is really just that you're doing it, um, in, you're basically just doing it on your own rather than a big group and uploading your results to a site that I will post shortly that will have all the information on how to register, um, and partake in it. But, Alice, have you ever, uh, been a part of any of Helen Keller services race?  

[Alice]: So the race walks the first year. I was, um, I finished first and as a disabled person and last year I was third. So I had a timeframe there, but in each time I got better last year, we did it in the rain and just me and my guide dog. And, you know, we don't have a guide worker Walker with us and we managed to stay on the track and keep doing what we had to do. It was great. So, you know, but I won't be doing it whether this time. So when I next time around, I'll be having a SSP or a guide person with me and doing it faster. Yeah, it's fun. And when I did it, the first time I was still in the dorm, I was a resident and people in our dorm were with us. And, um, it was a great, no, the funny part was when I won the first time and got the medal, that the little trophy, I didn't even know, they were talking about me. I was watching the dorm staff signing two other people, and then I realized they were talking about me that's so I had to go up and get, get the trophy, but had no idea. They were talking about me in the beginning because I had no clue, but it was fun. It was really, um, and the grounds are great. The route was fantastic. So, you know, um, but I didn't know. So here again, the value of sign language is very important to you.

[Doug]: Alice, I know that you're also a singer and a recently audition for a reality show. Can you tell us a little bit about that?

[Alice]: I actually auditioned for a talent show here in our state and they've never had a DeafBlind person audition. It was designed for blind people. Um, and um, the first time it was in person and, um, I had an SSP and, and I had to explain it to them to justify why she was entering the room because it was non negotiable, but I, you know, I wrote it to him and told him she would be there, but they really didn't understand what that meant. And, um, I use noise canceling headphones, not for the way that you think of it. But anyway, and I had the music on my phone as a YouTube and I had given them a clean version for background music. And when we first entered into the room, it was, I needed to know how loud they were doing it because what I feel through my headphones is a barbell tactal thing has nothing to do with I'm listening. For the words, it has nothing to do with the music per se. There's something indicating and the feeling of it on the, on the, on my flesh that I can pick up. And that's my cute. So we had to, no, you can't have it that loud because then I feel your music and not what I need to feel through my own flesh. And so once they got that understood, and my SSP basically provide a communication between them and me and what they were saying is they're reaching far away and you know, it was, you know, but the experience then was I did at that time, um, it was, it was, I had a range problem because for every once in a while, I'd hear their microphone and I didn't know where it came from and it would throw me off. So when I made to the second round, they said to me, I have the option of doing an acapella, which is perfect for me because I don't need the music. You know, I need to, I need to feel where I'm supposed to be, but I don't need the music to be listening to a timing thing. Um, and so that's what we had decided. And I did wire from a dummy and then, uh, but we ended up doing it virtually. It was so cool. It was, um, complicated, but really awesome because I had to have someone to enter into the ad, give them, make sure they understood. They were going to be two people there. Me and the person that was texting me to tell me what they said so I can answer them. And then that, and that's how we did it. They, and when it was, we had two minutes of time. And so we had to, you know, we'd practiced it ourselves. And, uh, when it was my two minutes, he flashed a text and I would pick it up. I could perceive that it flashed when necessarily have to know what it said, but I knew that was my cue, that my 10 minutes was up because I did it here in my kitchen. And my phone was over by the microwave, my iPad. And I were on the opposite side of the stove. So I had a distance range of where I needed to be, so that I wasn't too loud or whatever. And I didn't want to appear to be straining screaming or any other thing. So it's, it was totally cool. And I did two versions of the, that kind of an audition and made it through. So now we're waiting. Well, I'll certainly be tuning in if there's anywhere to tune into, if this a reality show. We have a few more minutes left in today's conversation. And I'm just wondering if there's anything that you'd like to speak about in the last few minutes that we have here today, knowing the value of your own mental health is important because the minute COVID hit in the way that it did, um, being aware of who you are in yourself and being able to remember two things I discovered on my birthday, how grateful I was. I have a good circle of friends at Facebook, me all over the place to let me know that they remembered me and whatever, because some of us don't have anybody to talk to at all. Some of us don't have anywhere that we can be going. I go out of my house because I can't stand being in. And I'm a kind of person that will typically do a five and a half mile walk regularly, um, to just to clear the air and sometimes to vent. And sometimes just to go leisurely with my dog, we might stop along the way by an ice cream foam XLE, you know, do something goofy and then get serious. I don't have to be competitive about it because I wanted to have fun because when I'm stressed, your dog is also stressed. They know, um, that's another tidbit along the way. And, um, but knowing you gotta find your happy place. And if you have one, make one, find that happy place pictured in your head when things are really getting rough and hang on to it for your life, find somebody that can be your outlet. You know, it, you can text or call or whatever, anytime a day, you know, whatever you need that. You need to be able to know. I had to learn my daughter yelled at me because she didn't want me going into the grocery store. So I had to learn how to do walmart.com. She explained, and she said, if you can buy stuff online, you can do this. So I learned, yeah, I also was taking classes with Helen Keller over during Colbert. And so we, I found more information on exactly how to do it. And so I do, or I might present a problem to someone and say, how can I solve it? You need those people to bounce those things off of. And don't watch the news too much. It's too crazy. It's too, you know, it's, you could have a nervous breakdown just watching while enough it, you know, um, you can create fear in yourself that you can't get out of. You don't need extra. Knowing who you are, knowing that, okay, I'm going to go to the doctors and I'm going to get there. I'm not going to stress out. I might, you know, I might even grow up on the way, but I'm going to get there and be as civil as I can and survive the whole ordeal. But I have to do it with dignity. So I will say to you, if you're in a nurse that came in with an attitude, go back out and come back in, trust me, you don't want to go there because I need you to listen to me, you know, or I also tend to be super high, my blood pressure. So why don't you come back and try again, after the third try, my, some of my doctors don't even bother until it's almost time to leave because I already know. I start with hi. Um, so you got to know yourself enough to say it's okay. It's okay to be inner doctor's office and really not know, but forced them to acknowledge you forced them to write it down. They don't have to like it. I have been, I've even gone to doctor's offices with somebody on audio, FaceTime to listen and text me what they say. And I don't care that you don't like it. This is no option. I'm here. I'm not leaving this room. Not knowing what happened. Those are the steps you have to be able to take. And hopefully you got somebody to do that because that's what I've had to do because I don't have any other choice. So I I'm, I'm a improvising person, you know, I don't care what it is. You give me an idea and I will play with it until I make it, do something I want it to do. And you can't be of that. You can be afraid of people, but you can't be afraid of being alive.

[Doug]: You got that. Right. Well, Alice, thank you so much for joining us today. You're definitely going to have to come back and join us again soon. I know there's, there's so many other things that we could talk about if you had more time. So you'll definitely have to come back again, but really appreciate everything you shared today. Thank you, everyone tuned in. Um, if you have been enjoying these episodes, please tell your friends and family, anyone you think might be interested in joining us. We're going to be here every Friday at the same time. 11:00 AM Pacific time, 2:00 PM. Eastern time. And, thank you so much. Thanks again, Alice.

Feeling Through Live • Episode 7: College Student Redefines Relationship to Blindness

DOUG:  Welcome to Episode 7, Feeling Through Live who just finished his junior year at Hofstra.  The topic is redefining Mike's relationship with blindness, technology and what the landscape looks like entering his senior year at a time which has a degree of uncertainty for us.  So before we hop into it why don't you introduce yourself.

MIKE TAYLOR:  I am an IT major, I hope to embark into a future with assistive technology.

DOUG:  Hi to everyone joining us, hi Barbara, hi Lisa, hi Alice.  If you can share this conversation on your page if you are watching on Facebook that would be awesome to get more people in here and get the discussion going.

Mike there's so much to get into today and I want to go back to the beginning.  Talk about your childhood and maybe if you could share with us some of the challenges that you had growing up.

MIKE TAYLOR:  When I was very young I always had issues connecting with the other students in my school because I was the only visually impaired student and I went to the regular neighborhood public school and since there was no one else like me connecting to the other kids and they didn't want to connect with me.  I had a few good friends but most people didn't know how to deal with someone with a visual impairment or they didn't want to, it led to some bad experiences.  Some kids were mean.  Not even that they were trying to be in some cases but a lot of cases they didn't know how to handle a situation.  It created a closed off mentality.  It was like oh here's the blind kid coming, let's scatter, do something else.

DOUG:  Do you remember the first time you were really aware of like, feeling like you were separated from your peers?

MIKE TAYLOR:  It had to be probably in the first and second grade.  It was the first time I realized I was one kid sitting alone in the playground and everyone else was running around playing with their group of friends.

DOUG:  To get a better sense of you, in your case did you find it was more just being excluded from people?  It was kids being like, really outwardly mean to you?  Was it both?  What was your experience like in that regard?

MIKE TAYLOR:  In terms of the kids being mean some of them were mean and they knew it, they were trying to be mean.  A lot of times they didn't know what they were doing was mean and hurtful.  That's why it lets the feeling of exclusion.  For example in middle school when we had, I think it was sixth or seventh grade, actually late elementary school I'm sorry.  We had this assignment where we made this giant American flag on the hallway.  Everyone had to write a quote they felt was inspirational and attach it to the giant American flag on the wall.  The whole point was they were supposed to hand write it.  Since I couldn't hand write, they said we don't need to do your quote.  It's not important.  They wanted to exclude me from the experience.  Not so much the faculty and staff, the students who were supposed to help me, they were like do you want to do this?  I don't think you should.  You don't have to.

DOUG:  As a young adult looking back on those childhood moments, how would you describe the mentality that it started to form for you in the way you moved through the world and perceived others and your relationship with others?

MIKE TAYLOR:  It started to give me the idea that I was blind before I was a person.  I was the blind person rather than the person, blind.  So that kind of brought me into my own mire in a way.  If you think that way you will be discouraged when you meet anyone or endeavor any relationship so it didn't lead to the greatest experience throughout middle school and most of high school.

DOUG:  So, was there a moment or a place that started to give you a different perspective or understanding of who you were and like your ability to connect with other people?

MIKE TAYLOR:  You mean like a time where I decided to change the trajectory of where everything was going?

DOUG:  Referring to, I know you attended Camp Helen Keller for quite a long time is that correct.

MIKE TAYLOR:  I started attending from five or six years old.

DOUG:  Can you tell everybody what that is.

MIKE TAYLOR:  It's a summer day camp, one and a half to two months and it's for all kids who are blind or visually impaired.  I went for 7 or 8 years.  It was a lot of fun.  I had friends with the same challenges as I had.  I was the only visually impaired kid growing up in my town.

DOUG:  So you said you went first when you were 8 years old is that correct?

MIKE TAYLOR:  I would say five or six.

DOUG:  Five or six.  Okay.  So what was that like going to Camp Helen Keller for the first time?  What was that experience like.

MIKE TAYLOR:  First I was scared.  I didn't know what to expect.  I was a young child in a new place.  Once I realized everyone there was somewhat like me I liked it right away and I felt I really fit in.  It was a lot of fun.

DOUG:  Feeling different from other kids at school, what was it like being around all the kids there that were in the same boat essentially.

MIKE TAYLOR:  It was a completely different thing.  I just fit in naturally instead of trying hard to fit in.  It was a completely different experience.  The way I handle it was a lot different.

DOUG:  You said because it's so drilled into you from other kids growing up being the blind kid first before being able to see you in any other way.  When you were around a bunch of kids that were blind or low vision were you able to quickly put that aside and not have to like, deal with it or was there the residual feeling of that part of your identity even when you were around other kid the same as you?

MIKE TAYLOR:  It couldn't be flicked off like a light switch.  I had that feeling that I had to be cautious because maybe the same thing was going to happen, are they going to act the same way, the level of blindness would vary so I didn't know if they would treat me the same way because of that.  Once I realized it wasn't going to be an issue my guard was let down and I was able to make connections that way.

DOUG:  If you are just joining us we're talking with Mike Taylor who just financed his junior year at Hofstra, he's talking about his experiences being blind and having a lot of peers who were not so kind to him but also being able to attend Camp Helen Keller and being around a bunch of kids like him for the first time.  If you are joining us and you have questions feel free to write those in the chat box and we'll get to all of those.  If you would click the share button that's great and hello to those of you watching on YouTube.  I think of camp fondly when I look back.  Is there a favorite moment that stands out in your memory?

MIKE TAYLOR:  Let me think.  I have to think back a little bit.  One of the most fun parts was preparing for the end of year show that we put on every year.  Doing the show was fun in itself but the preparation was even more enjoyable.  We would have a lot of good laughs because they would have to explain to us how we were putting on these plays and things.  It was, sometimes it was funny because they would have to show us in a different way because we would have to do a certain dance move for example.  They can't just demonstrate and have us do it.  A lot of laughing.  Very enjoyable in general.

DOUG:  So we've discussed some of the challenges growing up with your peers.  We talked about this nice respite from that and being able to attend Camp Helen Keller throughout the summers.  But when did your mentality around your identity and your disability start to shift?  Can you describe that for us?

MIKE TAYLOR:  It had to be, it was right after I graduated high school before I started going to Hofstra, I told myself this isn't working, and what I'm doing is not working, people are not treating me the right way so I'm like I have to change this.  So and I figured this is college, I have a new slate, a new group of people, people I don't know, they don't know me and it's a way to start a fresh beginning.  So I decided I'm going to market myself differently and put myself forward differently.  Instead of being the blind kid, I am Mike Taylor, I have a visual impairment, it's a small part of me that sometimes it will be a factor, sometimes it won't.  I'm the person first.  And I decided that I wanted to be that, I would tell people at my own pace instead of being when I first meet someone, I'm Mike Taylor and I'm blind, I focus on other qualities of myself.  If a situation came up and I had to talk about my disability I would and I would make it seem like it was a smaller part of me than I had in the past.  It worked well.

DOUG:  I think a lot of people might not be familiar with person first kind of mentality around disability.  Can you talk about that a little bit more, about what that means?  You described it really well, but can you talk about it a little bit more what it means to be coming from a person first standpoint?  Can you elaborate on that a little bit.

MIKE TAYLOR:  Yeah, a lot of people that I've seen that this has been happening to is they get into a position where they let the disability define them rather than define the disability themselves.  In other words, being able to shape what the disability means to them and what it will and will not enable them to do.  It's saying I can do this and I can do that but I might have to do it differently.  It's a situation of being able to make people understand this disability without making it seem like it's too big of a part of yourself to affect the way you have a relationship with someone if that makes any sense.

DOUG:  That makes a lot of sense.  Is it safe to say it's not like you're ignoring the fact that you are blind.  You are not letting it be the thing that defines who you are.

MIKE TAYLOR:  Exactly.  It's one of the parts of who I am.  Sometimes it's an issue more than other times but I let people know my other qualities, demonstrate my other qualities first.  If it comes up I have to write something, I will ask for help or see if someone will write it for me.  I will go back to being myself.  I won't dwell on that or think extra about the issue.  I will deal with problems as they come up and focus on portraying myself as Mike Taylor rather than the blind man.

DOUG:  I love that.  I like how you put like I'm Mike Taylor who happens to be blind, who also happens to be tech savvy, or just finished your junior year at Hofstra.

MIKE TAYLOR:  It's just an additional character trait, yeah.

DOUG:  So you are talking about the fact that you started to realize that how you were approaching the world before wasn't working and how to put yourself forward in a different way like you just described.  What kind of result did you get once you made that change?

MIKE TAYLOR:  They have been excellent before and I had to suppress old experiences and thoughts and make peace with them and put them away.  Then I started this new way of carrying myself and it's worked very well.  I have a solid friend group at Hofstra and I work at one of their offices, I made a lot of friends in that office, I feel confident going around campus, people know me for who I am, the student Mike Taylor who just happens to have a visual impairment and it's a great feeling.  It really is.

DOUG:  You just articulated this so well but if we have any say, younger viewers that are watching now or come to this later who might be in middle school or high school and having challenges that you described what message would you have for them speaking to them directly?

MIKE TAYLOR:  It's kind of a, it's difficult because every situation is different but what I would say is as hard as it may be to not be defined by the way other people treat you, try your best to take control of your situation and define yourself in a different way related to the disability.  Don't say I may be, think of yourself as a purpose first who happens to have a disability of some sort.  Instead of saying I'm just the blind man or the deaf woman.  That's very, that takes a toll on your mentality and the way you think.  It's very demeaning and it makes it hard to go through life that way.  If you turn it around and say I'm the very smart person who happens to have this challenge, it makes a huge difference.  If you feel more confident about yourself other people will be confident being your friend and talking to you and doing things with you.  It makes a big difference.

DOUG:  I think anyone out there regardless of their situation can relate to the fact that middle school and high school tend to be socially some of the hardest times and things tend to get better or easier socially beyond that.  But I think that's a great specific message that you just shared there.

So now we're at the part where you are in college and you have been able to redefine your relationship to yourself and get a much more positive result from others, you know build a community there.  Can you tell me about now obviously having just finished your junior year heading into your senior year what is your focus in college and what do you want to do beyond that?

MIKE TAYLOR:  I am an IT major, I am between having the experience you need and being able to get into a career related to assistive technology and helping people in need.  I am a person who uses the technology every day.  I know its flaws and I know where it needs improvement.  My hope is that if I can make a difference by helping companies improve their software or somehow making their programs better or more accessible to all people if I can make a difference that way, that's what I would love to do.

DOUG:  So can you talk about how, what makes you well suited to move into the assistive technology space?

MIKE TAYLOR:  Since I am a person who uses it regularly, for example there are fully sighted people trained to use a screen reader.  But if something is not working properly they might unintentionally look at the screen.  In my case if something is want read properly or the app is not coded to read the menu buttons or symbols, there's no way to proceed.  So being someone who actually uses the technology and has no choice but to use it in its fullest, I know, I have a, probably a more solid understanding of where the problems are that someone else may overlook if they were just trained to use it.  I think I can market myself as someone who has such a strong understanding of the technology that I could come to a company, evaluate their software, present a report of where the problems are, recommend how to fix them, even fix them myself in certain cases and make the argument that since you can reach more people now because your software is more accessible you will reach more people and have more revenue.  Companies may be willing to pay me because customers can access their software.  It's a farther reach than they had before.

DOUG:  Can you talk about some of the technology that you use in your day‑to‑day life as far as accessibility goes?

MIKE TAYLOR:  I use an iPhone, iPad and Mac all with voiceover.  With Mac I have a boot camp edition that I use JAWS for Windows there occasionally.

DOUG:  Can you just explain what that is.

MIKE TAYLOR:  Voice over is Apple's built in screen reader.  It reads out elements on the screen that could be text, it could be an image, say you are in the phone app, in the body you will have the tab, favorites, more, dialer tab.  It verbalizes everything on the screen.  It will read out emails web pages, most apps work with it.  On the computer it's built in Macs too, Windows has JAWS.  Basically as you navigate the operating system.  So in other words if you need to open up the start menu and go through the control panel it will allow you to go through that by hearing what web element it is by interacting that way.  And then in terms of what, in terms of the Windows end of it it's more problematic because Apple has software built in but with Windows you have to install it so there's compatibility issues.  Sorry I have a little connection issue here.

DOUG:  No problem.  You are looking good on our end.

MIKE TAYLOR:  Is that any better.

DOUG:  I love how we're talking about technology as it is potentially failing us at this moment but you're looking really good.

MIKE TAYLOR:  I'm sorry about that.

DOUG:  No problem at all.  It's remember is not your fault.  As far as you were describing technology in your day‑to‑day life were you using that type of stuff as a kid, too or that was something that came into your life at a certain point.

MIKE TAYLOR:  It was always there in a certain capacity but a lot more primitive.  I had my first JAWS Windows laptop in third grade.  It was limited.  You could do Word and navigate the OS.  It didn't work with web pages or application.  Then over time, it got better.  But it was kind of lucky for me because I learned it when I was primitive so I was ahead of the curve to be able to understand what was happening when it got better.

DOUG:  Right.  So I know that there was, can you talk about the moment or the first opportunity you had to kind of work in the assistive technology space and what that was like.

MIKE TAYLOR:  I had my first summer internship the summer before my senior year of high school.  And I got an internship through Helen Keller working at Hofstra and my job was to evaluate their website to go through using a variety of different screen reader, Windows, IOS, evaluate it with different screen readers and browsers and I had to make a report of accessibility issues and some were different based on what system you were using.  That report got passed on to the tech department at Hofstra.  They were able to fix most of the issues.  I went back a year or so and only a few of the issues were remaining.  When there's an update a lot of times they don't realize they break something that had previously worked.  So there have been times when I am using the Pandora music app and the voiceover accessibility is gone after the update.  It's the most frustrating thing because you can't revert back.  I am careful of updates.  I wait for some time to go by before I install an update.  I wait to hear what people are saying about it.

DOUG:  Exactly.  The dreaded update.  Every time a new Mac OS comes out people wait quite a while to update their computers to make sure all the bugs are fixed with the update before they do it but I'm sure that can be frustrating when things that were working before and are no longer working.

MIKE TAYLOR:  I am using IOS12, I stick with the more stable software at this point.

DOUG:  This might be a hard question, but like, and I'm sure it varies from company to company or device to device but like, how receptive do a lot of these companies seem to first and foremost make sure things are accessible and beyond that ensure that they're accessible?  Does it seem like a priority for a lot of places or does it depend on the device or how would you speak to that.

MIKE TAYLOR:  It varies by company.  Apple, they're great.  Voiceover is built into any iPhone.  You pull it out of the box and it has voiceover on it.  You don't have to install anything or side load software that's not compatible.  Apple is very big on accessibility.  On the other hand Google, they're very, very behind.  For example android doesn't even have a universal screen reader built in yet.  They have apps but they only work with some problems and not others.  Sometimes you have to turn one off and work with another.  Some companies are very far behind and some are very with it.  My goal is to make sure that even the smaller companies, to make it so more of them are with it with accessibility and less are behind like Google is.

DOUG:  So in short you are telling me we should have this sponsored by Apple.  Is that what you are telling me.

MIKE TAYLOR:  I talk about Apple because they work for me.  They have great optimization with the screen reader.  For me Apples work the best.

DOUG:  Just to get back to the internship you described, it sounds like to be able to have that kind of impact from your first internship where you were able to spot changes on an often used website that ended up being addressed and bettered that's quite an amazing impact to be able to have with your first internship.  I'm sure that made an impact on your desire to pursue that as a career.

MIKE TAYLOR:  Oh it sure did.  It kind of re, I had an idea I wanted to do that at first but this reinforced it.  This is something I can do, I can do it well and I can actually make a difference.

DOUG:  I've got to tell you Mike, I had some internships in college and none of them were as interesting or as impactful as yours so you are definitely a lucky guy to have an opportunity like that at such a young age that also really helps set the path for you moving forward in what you want to do so that's really great to hear that there are still some internships out there that are actually worthwhile.

MIKE TAYLOR:  I got really lucky.  I consider myself lucky.  That internship led me to go to Hofstra because I got to know the staff, work to work with the tech department, the disabilities office, I was like this is the place for me.  I had the most social and academic success.  That's how I ended up there.

DOUG:  That's amazing.  I am going to take a quick pause and do an interpreter switch.  Let me know, are we all set?  Okay.  Great.  So continuing on here we have a question from Judith kind of related to something you were talking about a moment ago Mike.  She asks are more companies learning why greater accessibility is in the long term business interest?  Is that like, are companies are starting to get hip to that?

MIKE TAYLOR:  I would say so.  And the reason why I say so is because as the divide grows bigger between the accessibility with different companies, in order to remain competitive for example if Google wants to sell a smart phone to visually impaired people they will have to make their software better.  It will have a business impact.  It will be like the accessibility race like the space race.  Companies will want to out do each other to win that part of the market share or those customers that are with a different company maybe making them switch over, maybe they wanted to be with that company but the lack of accessibility kept them away.  It will be a, not a battle but a competition.

DOUG:  If you want something to move in the business world it's nice for there to be a potential profit involved with it.  That will get companies to move quicker for sure.

MIKE TAYLOR:  Yeah if there's additional profit then they'll pay me to fix the problem.  That's how I see it.

DOUG:  Right.  So moving into a slightly different space with this next question from Christopher, he asks Mike can you discuss your experience as a blind person navigating the transition to a virtual environment during this pandemic?  What resources or video features would you encourage people to use when they post videos, live streams, broadcasts.  That's a question from Christopher.

MIKE TAYLOR:  It's been challenging in a lot of ways because it's kind of forced, my only experience is with college, I had to finish the semester on line but it forced the professors and university to use software they normally didn't rely on heavily.  For example they use this program called Blackboard.  I got away with never using it because I got away to going to the office to talk about assignments.  That was taken away because of the Coronavirus pandemic.  Professors are relying on this Blackboard software which is poorly optimized to work with screen readers.  It opened my eyes to the fact that there's more software that needs help, needs work.  I had to find out different ways to do things so I had to rely a lot on email and other platforms besides this Blackboard.  In terms of what video streaming platforms are good, voiceover and Zoom work pretty well.  Voiceover and Skype are just okay.  Voiceover and any of the Google video chat programs is atrocious, doesn't work at all.  And if you want to use the Windows side of things, JAWS is fairly decent, not as good as voiceover.  I don't use android but I'm sure it can't be great.

DOUG:  I'm wondering, do you know how many students there are on campus that are visually impaired?

MIKE TAYLOR:  As far as I know I'm the only one who is visually impaired enough to use assistive technology.  I think there are other students who have slight visual impairment but not enough to need additional accommodations.

DOUG:  Interesting.  Do you find that because there aren't a lot of students in that position that it's something that can possibly get overlooked?

MIKE TAYLOR:  Oh for sure.  If no one is trying to use Blackboard who can't use it, they'll never know it's a problem or any other software for that matter.  Nobody is trying to use a specific app or software that is not accessible they'll never know it.  That's where I see myself is to expose different platforms and application and make it known it needs to be fixed.

DOUG:  Do you feel like being thrust into a position of being one of the only if not the only person who's in that position as far as being relying on and noticing the holes in accessibility from a low vision or blindness standpoint that that role participates in your desire to do what you want to do moving forward in spreading awareness around and furthering assistive technology?

MIKE TAYLOR:  You are asking me if my knowledge of the use of the technology helps me understand why I want to pursue it?

DOUG:  Sorry that was a terribly phrased question.  I was trying to figure out what I was going to say.  I find it so interesting that you, you know, it's fortunate that you are interested in assistive technology and you already had this experience like at the start of college in an internship that really opened up that world to you.  But in another way whether you were interested in assistive technology or not you're kind of put in this position as one of the only if not the only student on campus who's blind and relies on certain elements of accessibility whether or not you like it the onus is on you to do something about it if it's not working.

MIKE TAYLOR:  I have to kind of help myself and fix it for myself but it will help people who come next behind me and have the same issue I have for me so I see it as a multi‑facetted situation where I need to bring out awareness of how to fix it for myself but also for any other students who come behind me and need to use it also.

DOUG:  I'm thinking between that situation you are in on campus and the internship you had, it seemed like life is kind of materializing around you to put you in a position to be someone who really makes a change and impact in assistive technology.  You were very fortunate to be aligned with this internship, you happen to be in a position where you are forced to speak up about lack of accessibility in certain places or not be able to do certain things and it's almost like your desire to do it in the first place combined with the other circumstances feels like it's priming you to be a real voice in that space.

MIKE TAYLOR:  I definitely agree.  I feel as if I am pioneering my own job description.  I'm always told by career advisors at Hofstra look at a list of job descriptions and pick one.  No I'm creating my own job description.  I'm going to be an accessibility analyst and I am going to diagnose your issues.  I would rather create my own job description.

DOUG:  I'm just so curious what it's like being a college student during this time.  You know from watching afar you know at the end of this school year we saw so many people doing virtual graduations.  And I've heard about all this discussion about how bizarre it is to be navigating the school space or graduating in this environment.

I guess first at what point in the semester did you stop, did you have to switch to virtual and what was that moment like?

MIKE TAYLOR:  Hofstra closed, they were one of the first schools to close in very early March and we went remote, we had spring break and started going remote at the end of March.  First I was very scared, I didn't know how to approach the situation.  Some professors weren't willing to work with me on it.  I didn't know how I was going to pass these classes.  Will the first few weeks were tough.  Then it smoothed out to where I had a rhythm going.  Some of the professors didn't work with me, I had to go to the disability office and prompt the professors to working with me.  I had to get used to new software.  I had never heard of Zoom before this.  I had to figure out how to use that.  It got better over time and I finished the semester off and my grades were where they needed to be so I was happy.

DOUG:  If there's anything we've learned over the last 40 minutes you are definitely somebody resourceful and approach life's challenges with a can do attitude for sure.

But I'm also wondering aside from some of the logistics and switching over to doing school remotely, looking forward to your senior year and knowing this is the last year before you go out into the workforce and pursue your career in assistive technology but also knowing that things are quite uncertain for everyone globally right now and there's no real understanding of what things are going to look like three, six, 12 months from now what are your feeling about that being a young college student heading into your senior year.

MIKE TAYLOR:  It's scary.  Hofstra hasn't even announced if they're going remote or not in the fall.  I had a two month relationship with professors where they knew where my needs are and how they operated and what they required for the class.  The thought of having to start remote is very scary.  Once I graduate, what's the work world going to look like?  Are there going to be jobs available or are colleges going to be in a position where, I always thought I would start at a college but are colleges going to be in a position to hire someone or are companies going to want to take on an accessibility project?  Will they want to dedicate the resources to the project?  I don't have the answers and I don't think anyone else does either.  It's a wait and see unfortunately.

DOUG:  Are you saying that you feel like there's a possibility that in a time where a lot of companies in a financial pinch one of the first things that might get disregarded would be accessibility.

MIKE TAYLOR:  I think unfortunately it will be.  It's not technically essential for them to operate.  It would bring them more customers and ethically it's the right thing to do to not discriminate but if they fiscally they can't fund it it would probably be definitely one of the first things to go.

DOUG:  You used the word essential which I think is interesting in a couple of ways.  The meaning of essential has taken on a slightly new meaning in this current environment.  But you know, before we were talking about companies impetus from a business standpoint to address accessibility and how that might translate into more dollars for them but leaving aside the financial aspect of that what do you think about the essential nature or nonessential nature of accessibility?  You know completely keeping the financial side away what would you say to the people that might look at certain elements of accessibility and say that that's not essential?

MIKE TAYLOR:  So you are saying if money was no object and they could afford to do this but wouldn't want to do it for other reasons?

DOUG:  Aside from looking at it from a financial standpoint but looking at it from a morality ethical standpoint and that through those eyes that sometimes things that someone might call certain elements of accessibility not essential, what would you say to that?

MIKE TAYLOR:  I think that's wrong because you're discriminating against your user base.  If you are saying this group of people can't use my software that's a form of discrimination because everybody should be entitled to buy assistive technology and have it work for them.  Unfortunately we have to buy things and choose that will work best.  I feel like as a company I would think that would be part of their core goal to reach as many users as possible, I would hope.

DOUG:  It's interesting to think about that responsibility beyond the financial responsibility.  I believe this July will be the 30th anniversary of the ADA, the Americans with Disabilities Act.  Though that's something I'm still educating myself about, I know a lot of it was around redefining how we think and approach disabilities as an inconvenience or something that needs to be dealt with and understanding how it's more tied to human rights and providing what is right for all people to be able to enjoy in all things.  And it just feels like, I can't help but notice that the 30th anniversary of the ADA is coming up and this feels tied to that.

MIKE TAYLOR:  It's crazy that in 30 years we're at the point that things are still far from where they need to be.  It's crazy isn't it.

DOUG:  It is but unfortunately in certain way it's not if we look at what's been happening during the last week and much longer in the country unfortunately some things we would have hoped we would have progressed beyond are still very much an issue and very much an immediate problem that hopefully won't persist but hasn't seemed to be address the in the way that would change it.  So you know, unfortunately there are these things that you would think over time would be addressed that are not.  But I think all the more important that someone like you who has the technical know how and the desire to change things, it's all the more important for you to be out there advocating and helping to make assistive technology better for everyone.

MIKE TAYLOR:  Not just for myself because I need to use it but other people have to use the software.  I want to make a difference that way.

DOUG:  It's like the older brother mentality, I don't want you to have to go through what I went through.  I want to make it better for you although I think a lot of older brothers beat up their siblings.

MIKE TAYLOR:  It would depend on the case but I know what you mean.

DOUG:  Christopher asks do you have any advice for fellow students to improve on accessibility on platforms, for example identifying ones self, talking through technical difficulties that may be heard but not seen, et cetera.  Do you have any advice there.

MIKE TAYLOR:  That's kind of difficult because every case is different but I know what he's trying to ask.  That could be like for example on Zoom, the hand raising feature, it's not activated by voice.  If someone is raising their hand in the class for example it would be nice if they would say I'm Marcia and I'm raising my hand, some indication that that person has their hand up.  If I am the meeting host I will never know.  They'll have their hand up for 15 minutes and I will never know otherwise.  That would be an awkward situation.

DOUG:  That's a good specific point there.  Just for those who are still watching now if you have any questions and you are sitting there and anything we've talked about has sparked a question feel free to write that.  We still have 10 minutes or so left in the broadcast and we're happy to address any questions that you might have out there but continuing on, I'm wondering you know Mike is there anything that we haven't addressed yet that is something that you would like to speak about?

MIKE TAYLOR:  No.  I mean I will say that all this can be tied together.  One of the first things I talked about in terms of social issues and the technology, it can kind of be tied together in the sense where better technology and bridging the gap where some people can access and others can't, it will improve that aspect I think.  Social media is not accessible.  A lot of it is photo based.  I miss a big part of what people my age are into.  I get along without it but if you bridge the gap with technology I think you can help with social issues.

DOUG:  Just use of curiosity which are accessibility.

MIKE TAYLOR:  Facebook and Twitter are the best.  Snapchat or Instagram a couple older ones they're not designed to work with voiceover because they assume if you can't see the images what would be on it?

DOUG:  What would you say to someone making that assumption.

MIKE TAYLOR:  It's a terrible assumption.  What if you want to use it for business purpose, what if you want to have an Instagram page?  You should be able to use the app.  If that's the company's mentality that's ridiculous in my opinion.

DOUG:  So part of it too is it sounds like assumptions can be a dangerous thing to work off of particularly from people who aren't part of the blind or low vision community, it feels like a lot of assumptions someone might make about that community would be pretty wrong.

MIKE TAYLOR:  Yeah.  Exactly.  If you are making assumptions about the use cases people have for certain things, if you don't know you can't base a decision based on an assumption.  It won't work that way.  I'm seeing improvement.  A lot of, lately in a couple of apps I use I notice in the description of the update it says improvements for voiceover users so I'm having hope that app developers are realizing they're behind and trying to make it better and they're foregoing those assumptions and they're trying to make a difference.  So there's hope.

DOUG:  We have another question from Alana who asks you touched on being worried that there might be discrimination based on the level of visual impairment.

MIKE TAYLOR:  There were cases where there were maybe kids who had enough sight to play video games and I can't play video games.  So that's all they wanted to talk about and I felt left out but it wasn't an issue of blatant discrimination.

DOUG:  Back to what we were talking about a moment ago, are there specific technologies that you would like to see happen in the future, or are emerging but are not quite there yet.

MIKE TAYLOR:  There's a software being developed that's kind of a, they have it in a primitive stage where you have an app called be my eyes.  You call someone, they describe something that you want to look at.  Or a package, you use the camera on your phone to show them what it is.  It works well and it's purely volunteer based.  The people on there want to do this, they're not forced into it.  But if you were walking in New York City and you have the phone out and you could have someone tell you, where is building 106 on Fifth Avenue or where is Room 204, what does the name plate on the door say?  I wish it could be a traveling sighted companion but virtually doing so in this case using an app that is good and serves a purpose but being able to add essentially other features to it to make it more useful.

MIKE TAYLOR:  Exactly.  You could open up a new field of employment here.  Your job is to be a sighted assistant and your job is to work at the call center and you take calls from people who need sighted assistance, if there's money to fund it, maybe start as a non‑profit, I could see it becoming a whole new industry in a sense.

DOUG:  For those who are interested in Be My Eyes Alana has shared a link to it and it's in the app store is that correct Mike?

MIKE TAYLOR:  It's available for IOS and I am almost positive it's on android, too.

DOUG:  Very cool.  Things like that are, I love also the fact that it's volunteer based but also as you described still really effective.  I think you describing the fact that people want to be there and want to do that is really awesome that there's an app that functions that way that's able to have enough people who desire to make it a worthwhile piece of technology, I think it's such a cool concept.

MIKE TAYLOR:  I've used it to read for example a couple weeks ago I was making a microwaveable TV dinner and I couldn't scan the bar code to get the instructions on how to cook it so I made the call and someone read the instructions off the box.  It worked really well.  It's useful.

DOUG:  Again to anyone who is listening or watching this later download the app or go to Be My eyes.com.  You mentioned scanning the bar code to get the instructions.  I'm not familiar with that.  Is that something that's common with a lot of products?  Can you talk about that?

MIKE TAYLOR:  Unfortunately it's very uncommon.  Every once in a while if you scan the bar code it will give you the cooking instruction or a chair or something it will tell you how to assemble it.  It's rare.  The bar code scanning is very powerful.  The company has to embed that data into their bar code in order for it to work.

DOUG:  That sounds really cool because I didn't know about that and also something like any time you're instituting something like that there's a bit of a learning curve so to speak but sounds like once it was set up it sounds pretty easy to execute.  But using my reference points of knowledge it feels like that's something that should be more widespread.

MIKE TAYLOR:  It should be and the company has to be willing to embed that data into their bar code but it's not a tremendously resourceful demanding thing to do.  So the company would be willing to put a little effort into it and I think it would be so useful to do that.

DOUG:  So we have a couple minutes left here.  With the last couple minutes and if there's anything else you would like to talk about Mike feel free to do so but something just came to mind something we were talking about a moment ago was assumptions.  I am wondering are there other assumptions that you often encounter that are ones that you would like to use this platform to dispel.

MIKE TAYLOR:  I encounter a ton of assumptions.  The biggest one I used to get not so much anymore but years ago is oh do you need the elevator, even though me personally I am perfectly physically abled.  They would figure out someone has a visual impairment they automatically assume they can't use the stairs.  That's just one example I always think of as an assumption.  I don't see it as much as I did but it was one example.  Also it's not a good idea to assume someone's ability.  Let that person tell you what they can and can't see or hear.  You might think you know but no one can know except for the person with the disability.  So that's also very key.

DOUG:  You know for those who might maybe not be, might not know anyone in their personal life who is low vision or blind and might maybe feel a little bit unsure of how to say, approach certain topics around it, how do you feel about someone straight up asking you questions about your vision or level of vision and from a spirit of clarification or understanding more, how do you feel about that?

MIKE TAYLOR:  That's fine with me.  If you are going to ask questions to be able to have a better understanding of what I can and can't see that's perfect.  But what I have an issue is when they say how many fingers am I holding up.  That's not a good way to find out information.  That's being mean and rubbing it in the face of the person you're saying it to.  So if you are going to ask for clarification I'm fully open to that and I think you should.  If you feel like you don't fully understand something don't assume that you have the proper answer.

DOUG:  The point being that it's okay to talk about it but how are you talking about it and from where are you talking about it?  Are you talking about it to connect with someone more understand and or are you doing it in a way that's mean spirited or not respectful or thinking of the other person as a person?

MIKE TAYLOR:  Or for another reason.  If you want to know so you can help someone that's great but if you want to know to figure out if they're worthwhile to hang out with or have too little vision to be bothered with that's not the right reason.

DOUG:  A final question from Tina, she's asking how can we continue to remove stigmas associated around disabilities and be more open to discussing them?

MIKE TAYLOR:  How can we continue to remove?

DOUG:  Exactly.

MIKE TAYLOR:  I think the disability community has to kind of put forth an effort to say we're no longer defining ourselves as the disability community.  We're going to be a bunch of people who are just like everyone else and have an added challenge and we're going to overcome it and get past it.  If the disability community itself forces that mentality it will slowly erode the stigmas created by society.  They'll eventually disappear but it has to be a collective effort though.  If there's no reason to have those stigmas anymore they won't have a place to exist and they'll kind of die out.  Hopefully we can get to that point.

DOUG:  That's an amazing sentiments to end on today.  It goes beyond how anyone in the world treats anyone who is quote, unquote different from them and finding a way to build bridges and connections and walls, that's such an important topic.  Mike thank you so much for joining us today and for everything you shared.  It was really fantastic.

MIKE TAYLOR:  I really appreciate it, I had a great time doing it and I am happy to have the opportunity and hopefully I was able to help somebody or shed light on an issue somebody is having in their life and hopefully making a difference.

DOUG:  Mike I have no doubt in my mind that you will continue to.  Thank you for joining us today.  If maybe this was your first time or you have been joining us for a few of these episodes and you like it please do share with others.  The more people we can reach the more impact these conversations can have.  Again we are on Facebook live and YouTube live.  You can follow our Facebook page, and you can also subscribe to our page on YouTube at YouTube.com/feeling through.  We're feeling through on everything so we're easy to find.  Again if you like what you have been watching so far please do share with other people.  We'll be back next week on Friday 11:00 a.m. Pacific time and 2:00 p.m. eastern time.  Have a great we could.  Bye‑bye. 

Feeling Through Live • Episode 6: DeafBlind Man's Journey from Rural India to Tech Wiz

DOUG:  Welcome to Episode 6 of Feeling Through Live.  I'm really excited for this episode.  We're joined by Anindya Bapin Bhattacharyya of the Helen Keller National Center and Bapin why don't you introduce yourself?

BAPIN:  Sure.  Hello, everyone.  Well, my full name is Anindya Bapin Bhattacharyya.  But it's a little bit different.  Everybody does call me Bapin.  So I'm so excited to join this Feeling Through Live with Doug.  Currently I am the coordinator of the national outreach technology and development training program.  I do coordinate two states.  I run Florida and Iowa, and for those states I run the I Can Connect Program which means I provide telecommunication equipment to DeafBlind individuals, so that way they have accessible telecommunication.  So really that's my job in a big summary.

DOUG:  Great.  Thanks for keying us into that.  There's so much to talk about today and I want to jump right into it but I think we need to start with your personal life journey.  It's an amazing journey that's taken you from a rural village in India that's taken you to being a tech guru here in the states.  If you could start by painting the picture for us.

BAPIN:  Okay.  Sure.  Yeah, well, thank you Doug.  So, right now I'm fully DeafBlind but I wasn't born DeafBlind.  I was just born Deaf.  I was born Deaf for reasons unknown.  At the age of one my parents started to realize and notice they wasn't responsive to sound.  If they would call my name, loud noises, I wasn't responding at all.  So that's when they realized that I was Deaf.  At that time my parents brought me to the hospital to diagnose me and the doctors were not able to find a cause of my deafness.  But at that time I didn't have a traditional hearing aid like you see today that goes over the ear.  I had a processer that I wore around my neck.  It was really hard at that time to learn language and to lip read.  So my mom was really creative in trying to teach me how to actually speak.  She had me hold on to her neck to feel the vibrations, to understand the different types of sounds of vowels and consonants.  I actually grew up speaking and learning Bengali.  However my pronunciation, my parents were able to understand my speech however other individuals different fully understand me.  But that's mostly because my family and my close friends knew me, they had that relationship with me so they understood my speech.  My parents looked for different schools that I can attend, but in my home country there's no resource or any schools that provided services to meet my needs.  So my parents were really creative.  First I was born in India, and they were behind in the times.  They were very different than America.  They were behind in everything.  I lived in Telari which is a village south of Calcutta on the eastern side of India.  But you have to understand that the village that I lived in, about 80 percent of that population lived in very poverty like state.  My parents were middle class and well educated but because I didn't have resources I was really isolated.  My parents were proactive and really worked for me to try to help me get the education that I needed.  So my parents did send me to a school, a main stream school and the accommodations they made for me were to sit in the front row so that way I had the ability to see my teacher's lips to lip read but I was still missing a lot from that instruction.  And I had a really hard time lip reading and having access to the lessons because as you know teachers turn around, turn their back to you or they move around in the classroom.  So oftentimes my mom actually came to elementary school and my schools to be able to help clarify the lesson and help fill in those gaps because I was missing what the teacher was actually saying and teaching.  Sometimes I wouldn't understand the homework.  So my mom actually would always go and get the lesson and, the lesson plans to be able to support that missed learning and those gaps.  But at that time in that village there was no electricity, no running water in my village.  So it was a very primitive world.  And at that time I didn't even know the word technology or what that meant.  I was in the village until about nine and how I lost my sight was I was actually playing soccer and all the boys on my team were hearing and sighted.  I was the only Deaf boy.  So I was really dependent on my vision when playing soccer.  And I remembered the coach, he actually picked me to become the team manager.  And one of the other boys was really upset over that fact because he really wanted to be the team manager.  But the coach knew my skills and felt that I was a better match.  So, we got in a big fight and the boy actually picked up dirt and actually threw it in my face.  And I actually, when he threw it in my face I couldn't see anything.  It got in my eyes.  It was really blurry.  So the next day I got some of my vision back but it was more like double vision.  I couldn't see print.  My parents were worried and shocked and they didn't know what to do so they rush me to the hospital.  The doctors actually found after evaluation that I had a retinal detachment.  And over the course of a three month period that's when I lost the rest of the vision in that eye.  But without my vision at that time I was so dependent on lip reading I had no way to access that communication.  There was no interpreters in my village.  So I had to use print on palm to be able to access information.  Or I was dependent on my parents to then tactilely sign to me.  I was able to voice and respond for myself but for many years I stayed at home isolated with nothing to do.  I wasn't going to school at this time, and I was trying to figure out how to keep myself busy.  So that's when I got into the hobby of ceramics and sculpting because it was more tactile for me.  My parents wanted me to go to school and they searched everywhere for schools that would be able to accept me and support my needs.  They had Deaf schools and they had blind schools but nobody knew how to deal with a combined hearing and vision loss.  So my father actually, in searching for me met one of the principals at the school for the blind in Calcutta and that's when they recommended to my parents that I go to Perkins school for the blind in Boston, Massachusetts.  My dad also thought that was a great idea.  However, the issue was finances.  The cost of a plane ticket was so expensive in comparison to what we earned.  My parents didn't have enough money to be able to purchase flights for us to be able to go to America.  So for the school for the blind, that principal had informed my dad that she had some contacts that may be able to help us purchase those flights.  So my dad wrote letters to Perkins School and they awarded me a scholarship.  So my dad quickly reacted, filled out all the forms and applications we needed to Perkins as well as other sponsors to be able to purchase my flights to be able to get to America.  With my dad's writing letters to Perkins and advocating for me they responded back that they agreed that I was a good fit for their school and I was awarded a scholarship.  However, I didn't know English.  I only spoke Bengali so my dad decided to accompany me and go to America and go to Massachusetts.

DOUG:  Bapin I'm going to interject for one moment.  Thank you.  That's a great initial introduction and if you are just joining us we are speaking with Anindya Bapin Bhattacharyya of HKNC and he's walking us through his life journey.  So far he's described growing up in a rural village in India without technology born deaf and was through an incident with another boy on a soccer will field was actually blinded by that other boy in a little bit of a disagreement and at this point in his life he's a small boy in India who is deaf and blind and he's now walking us through a little bit later on how his parents helped him find out about Perkins, a school that was a good fit for his situation at that moment.  And if you are joining us remember you can always write questions in the comments if you have questions for Bapin.  And also if you can click the share button on the stream if you are enjoying it so they can join in as well.  So without further adieu Bapin please pick up where you left off.

BAPIN:  Okay.  Thank you, Doug.  So once I arrived to Perkins, it was a culture shock.  It was a completely different world from being in a small village in India to coming to America.  And there was a language barrier.  I didn't know English at all.  I only spoke Bengali.  So my dad actually accompanied me for the first week that I was there and interpreted everything for me.  He interpreted everything from English into Bengali sign language for me.  It was just such a different life.  But I was ready.  I was motivated.  I couldn't wait to get into school, to start learning braille and English.  So I started with just the alphabet.  And I only knew a few phrases in English like I love you or can I go to the bathroom or can I go to sleep?  I'm tired.  That's it.  So I was so motivated to learn.  So at home every day I studied English and tried to learn the language and then I picked it up from there.  But I remember the one thing that really inspired me was all of the electronics, vacuums, wash machines, all the different appliances that they had in America.  I had never seen it before.  We didn't have that in my village.  We had a wood burning stove in my village to cook on.  We just had a very different way of doing things and when I came to America I remember seeing all these new things and I had so many questions of how did it work, what does it do?  And I remember when I first touched a computer and a braille display.  At that time some of the older models of braille displays were heavy.  They're about 10 pounds, like big bricks.  At that time I had known braille so I was able to read that.  So I started with playing some games.  I loved trivia.  And I just really started learning more and more about the computer.  And that was a special passion that I had of my own that was inspired once I came to America.  About a year of being in America I really learned to master the language.  I had the help of my interpreters, my father had returned home to India and I stayed in Massachusetts.  I stayed in Perkins.  All of my teachers, my parents, everybody agreed that if I returned home to India and then came back, I would regress.  I would lose all the skills that I had gained.  And not only did I have a love for learning about technology, I wanted to learn how to build computers.  So through the use of some volunteers of SSPs I was able to go to different technology shows.  Every weekend I was going and traveling around to different computer shows that were hosted in Massachusetts and I remember you used to have to use floppy disks and those hard disks to run the computer.  And so I started buying all the different components and parts that you needed like the mother board, and I brought it back to school in Perkins and with the help of some teachers we were able to build it and build this computer that I wanted to build.  So I had my SSPs, a couple of friends that were really tech savvy.  And through the use of my SSPs and other people, they were able to actually give me the visual information.  They were telling me the different colors of the wires, what the mother board left‑hand lane, where did it go.  Where the jumper settings were on the mother board.  And I got that up and running.  I was able to build that computer.  I was able to install DOS.  And the disk operating system.  That was before Microsoft really was a thing or Windows.  That was the time of DOS.  And I learned how to actually do some basic computer programming and write some programs.  I remember I would stay up all night till 2:00 and 3:00 in the morning just creating my own programs.  I remember my parents being shocked that I would just be up all night busy working away but they didn't care.  They let me do my thing.  Then my dad let me set up a BBS which is a bulletin board system, which is a system where people can actually call through a modem, you can have two lines in so people can call in and you can essentially play a game, similar to modern times of Facebook.  So I had three bulletin people where two people would actually call by BBS and I had that up and running for about two years.  And that's really where I learned a lot of my computer skills and a lot about adaptive technology.  I volunteered to help a lot of my DeafBlind friends with their technology, their computers and I would actually tell my friends, don't get a computer.  I'll build it for you and then I would actually teach them how to use the computer, again using DOS and how they can call in to their own BBS systems.  And I would teach them how to be able to communicate through that.  So it was real hands on learning for the DeafBlind back then and I would say I was around 16 or 17 years old.  Then I graduated from high school in 1992.  I went to college.  I went to the University of Arkansas in Little Rock.  At the time the president was Bill Clinton.  And that was his home state at the time, Arkansas so people used to tease me about that.  And I remember my west friend and I, we actually went to graduate school together and he was a big supporter of mine as well as I supported him.  However I did not major in computers or technology or computer science.  I majored in political science.  My dream was to become a lawyer.  And the reason why I wanted to become a lawyer was there were so many challenges or issues for anybody who was DeafBlind.  So I wanted to be able to break down those barriers.  So I received my degree in political science.  Once I graduated, I started looking for a job.

DOUG:  So I'm going to stop you right there Bapin.  We're going to hold for a moment and we're going to do an interpreter switch.  So let me know Bapin when you are set on your end.  Are we all set?  Great.  So as we continue here Bapin, I would love to take a step back for a moment and have a little back and forth conversation about some of the topics that you have just gone through because there's so much interesting stuff there and I want to make sure that we have an opportunity to dialogue a little bit about it.  What age were you when you first came over to the United States?

BAPIN:  I was 13 and that was 1983.

DOUG:  Had you ever traveled anywhere prior to coming over to the United States?

BAPIN:  That was the first time I had ever flown was to America from India.

DOUG:  So what was it like getting on a plane knowing you were going to a completely different country that was completely different from what you knew?

BAPIN:  That's a great question.  Like I said, before I became blind my parents tried to expose me to as much as possible.  So I had seen what a plane looked like and we were near an airport so I was able to stand on the roof and see some planes go by but I never got an opportunity to fly.  So the first time getting on an airplane it was a really unique experience.  You know, it almost looked like, I remember it looking like a bird in the sky and you saw the engines spinning and it was really loud and I was scared because I had never been away from home.  And the flight was about nine hours from India to Europe and then had to fly from Europe to America.  So I was definitely nervous when turbulence would hit in the airplane, I would get scared but my dad had a lot of experience flying so he knew there was nothing to worry about, I thought there was a problem with the airplane bouncing up and down.

DOUG:  So having to stop your schooling in India because there was no school that could accommodate you properly to heading over to the United States I believe I remember you saying there was a four year gap in which you weren't in school is that correct?

BAPIN:  That's right.  Yeah.  I was home for four years and what I did really with that time was make a lot of ceramics.  And I would get in some trouble at home like any kid would.

DOUG:  So I want to now flash forward again to you as a teenager learning how to build computers.  You were at Perkins at this time is that correct?

BAPIN:  Yes.

DOUG:  So I'm wondering you know, this is obviously pretty early on in computing.  Do you know of anyone else in the DeafBlind community who, I know you said you were teaching other people but do you know of anyone else before you that was in the DeafBlind community and learning to build computers?

BAPIN:  Not that I knew of, no.  It was just me.  Later once I got a job at Helen Keller National Center there are some DeafBlind students there that are very, very motivated to learn how to use computers but that wasn't until much later but in my early school days no, there was nobody else I knew.

DOUG:  So your father traveled with you to America.  And he was in a sense, was he initially acting as an SSP for you or can you describe a little bit more your relationship?

BAPIN:  So my dad is a very dignified individual.  He's formally educated.  He's a professional and he was always my biggest advocate and biggest supporter.  He was strict in what he expected.  He had a lot of rules that we had to follow.  Weren't really supposed to stray too far from the path or get in any kind of trouble.  You know, and he was a teacher by trade so he expected us to follow the rules and that was my upbringing.  Growing up I was a little bit scared of my father, but now I realize that he was actually an excellent, excellent father.  He's 81 now, still very healthy and going strong.  My dad was very encouraging of my love of computers.  You know to this day he loves computers especially now with COVID‑19 going on he gets to be on the computer a lot which is very helpful so he's come to appreciate computers just like I have.

DOUG:  Did your mother stay back in India while you and your father traveled to the United States?

BAPIN:  Yes my brother was born, I think he was four at the time so my mom stayed back with my brother and my dad traveled with me.

DOUG:  Were you and your father able to see your mother and your brother at any point?

BAPIN:  No.  Not for a whole year we would write letters but it would take about two weeks for the letter to be sent and then for us to get a response so it was very slow communication but we were able to write letters for that year.  After a year in America, my dad went back to Massachusetts, sorry, went back to India when it was summer vacation and I stayed behind in Massachusetts.  My mom came to visit one time and stayed for about two months and then went back to India but that was the only time that I got to see my mom.

DOUG:  So when your father goes back to India at that point was that the first time that you had ever been completely away from your whole family?

BAPIN:  Uh‑huh, yeah.  So I have been by myself since the age of 14, pretty much.  I did go back to India fairly often to visit my family or as often as I could I should say.  You know every year or so I would go back to visit but yep that was when I was by myself at school.

DOUG:  So I now know you to be a very independent person.  We're talking about this time when you are still a teenager where it feels like you are really first learning how to be independent.  Can you tell me about going back to that part of your story what it was like to start to be on your own and what, how you were able to manage that in the early stages of being alone for the first time or away from your family for the first time?

BAPIN:  Yeah, good question.  Being by myself in some ways was good.  You know in India I always had my parents to protect me so I wasn't a very assert I didn't have person and being by myself kind of forced me to learn on my own, take responsibility for myself, advocate for myself to get out into the community even if I needed an SSP.  Perkins luckily was very, very flexible with me.  You know, they knew that I was pretty mature and responsible so they let me take advantage of a lot of opportunities.  They let me get out and explore pretty much as much as I wanted to.  When I went back to India for vacation I was 16.  You know I asked my dad if I could fly back to America myself and he was comfortable with that.  But we had a lot of preparation to do you know before I could fly independently because I couldn't see and couldn't hear.  But it was something that I wanted to do and I showed my dad that I had communication cards that I could use with the flight attendants to ask for help.  I was able to explain to my dad how I would handle certain things, if I needed someone to communicate with me they could print on my hand.  We could communicate that way.  I needed someone to drive me to the gate.  And I know my dad wanted me to learn independently.  You know but at the same time he was concerned.  He was my dad.  He wanted to take care of me but he was also a huge supporter and he knew he wasn't going to be able to take care of me forever so it was important to foster that independence.  So once I was able to show my dad that I was able to communicate on my own and travel safely he was very pleased to let me do that.  And it also helped him understand better that you know DeafBlind people are able to communicate independently.  You know I had my passport ready, I had all my documentation there.  It was a little bit nerve racking of course to fly by myself but it's also a nice experience because I get to meet a lot of people, I get to talk to a lot of people.  Everybody I encountered was very nice.  I didn't have a negative experience at all so that was great.

DOUG:  Sounds like you were pretty comfortable traveling and being independent in the world relatively quickly.  Is that fair to say?  And when did you feel comfortable navigating the world on your own?

BAPIN:  Traveling independently was something that I really wanted to do, especially after I came to America.  Before I became blind I was always a wanderer.  I loved to go out exploring in my village.  You know my parents would tell me, it's dangerous.  Don't go too far away.  They didn't want the kids going out alone after hours but I was stubborn and I did it anyway.  I just wanted to see everything that was around me.  After I became blind I learned how to use a cane.  I had a mobility teacher who always had to tell me to slow down and be patient.  I always wanted to jump ahead in the lessons and do things that weren't the safest but once I had that cane I just wanted to go.  You know, and they would try to tell me you can't do that, you're not ready, you don't have the skills but again my stubbornness and eagerness for exploration kind of took over.  But I always had that motivation to be independent.  So I was going to do it regardless.  I got really comfortable with the Perkins campus at first and then I started to go out more.  I had SSPs and some friends who would help but once you do it a few times you get a lot more comfortable.  I take caps by myself, I take the bus by myself.  I didn't start out that way but now buses, cabs, subways I'm comfortable navigating alone.  You know it all stems back to the really great training they got.  Having good orientation and mobility skills allow you the freedom to navigate independently.

DOUG:  So you had really great training at Perkins which laid the ground work for you navigating all aspects of your life.  But that was quite some time ago.  Now in 2020 there's a lot of technology available to you that you didn't have then that really serves you in a lot of ways.  So can you walk through what your life is like now and the technologies today that serve each part of your life?

BAPIN:  Yeah back in 2003, I was using a braille note which is a really, really old way to communicate.  It was like a very, very old GPS that I would put in my pocket and it had a satellite signal that would connect to this braille note and it would allow me to explore places like New York City and other metropolitan areas.  I did live in New York for a while.  And I also had a guide dog, my first guiding to that would help me get around as well.  We would go to Central Park and I would use the GPS around Central Park, I would do that by myself just to try to figure out whether I was in a big place like that.  Having the GPS really helped.  That was back in the day before GPSs were common place.  People were just lost all the time.  And that device was able to help me find my bearings and I kind of found my way by getting lost.  I would go a direction, check and be like no that was wrong and go another way and be like oh no that was wrong and eventually I would find my way.  Then in 2008, you know the devices became a lot more complicated, they were the ones that you could put in your car but I was traveling a lot for work taking cabs, planes, things like that and we were encouraged to use those GPS devices and the skills associated with that improved a lot.  So there was no more keeping a GPS in your pocket or anything like that.  It just became a lot manufacture mainstreamed.  Now there's Lyft and Uber and apps you use to take trains and apps you use to navigate the airport.  You know when you go on an airplane I know pilots make announcements all the time.  Now there's the television screens that you see on airplanes that you can see you know where the flight is, how high up in the sky you are, how long till your destination.  So it just seems like technology has really exploded as the years go on.  I routinely travel between home and work sites I use the app on my phone for the train and see all the different stops.  I can check flight times and announcements, I can see what gate my flight is leaving from or if there was a gate change on my app.  The app tells me the flight is boarding.  I can go up to the desk, get on the airplane, I can check flight delays and cancellations.  I used to have to go and sit by the gate for as long as possible because I didn't want to wander away but in the off chance I would miss my flight and now I can navigate the terminal a little bit.  Now I have the app to tell me if the flight has been delayed or if it's time to board.  Sometimes flights do get cancelled and I need to rebook, you know the app will tell me that too and I can use the app to then rebook the flight so technology has been a huge benefit.

DOUG:  I know from me hearing your story and how you talk about your persistence and perseverance and curiosity in technology, you know I think that it's easy for someone on the outside to think of, to wonder how you've kept such an encouraged and what seems like positive attitude throughout your life.  What would you say to someone who's sitting here wondering how you have been able to be so curious and engaged in your life despite some really significant challenges?  What would you say to that?

BAPIN:  One thing my dad always said was that I needed to take care of me and that was really important and that's kind of what kept me motivated was knowing that I could always be there for myself so I had to learn everything that it took in order to take care of myself.  I didn't want to ever be in a position where I couldn't move forward because I was reliant on someone else who wasn't there.  At times I would get frustrated but I can't dwell on my hearing or on my vision loss.  You know there are plenty of other people in the world who have similar experiences, similar backgrounds to me.  And it's important that everybody feels positive about who they are.  You know you need to feel better about yourself whether you have your hearing and your sight or you don't.  Keeping a positive attitude and keeping motivated is really important and I also think it's important to explore different opportunities to come your way and that's something that I've always done.  And you don't want to let anything stop you.  I try not to use the word can't.  You know, instead I try to change it.  Any time somebody says can't I try to prove that I can.  You know one thing that I've thought about a lot has been something like driving a car.  They've always said if you are blind you will never be able to drive a car.  Well technology is developing and cars will be able to drive themselves so who is to say a blind person can't drive a car.  With COVID‑19 going around there's a lot of talk about not touching things and people.  As a DeafBlind person, my partner has been my communicate partner.  We're talking about social distancing but imagine if we didn't have the technology.  You know we have all of these things now to make communication easier.  You know, they don't have a robot or anything that could do tactile sign language via Zoom which would be awesome eventually.  But we're doing the best we can and considering what we have we have a lot at our disposal.

DOUG:  So we have about five minutes left here.  So kind of in the closing time that we have I have a couple questions that kind of speak to the totality of your journey but this is kind of related to the last question but I'm wondering now being someone who has this amazing position at Helen Keller National Center and travels the world educating other people about technology, has your own company, what would you say to that nine year old boy who just lost his sight who has not found the education yet that would serve as the foundation for where you are at now and probably a little bit lost and scared, what words would you have to the nine year old version of yourself?

BAPIN:  If I could go back you know, I wish I would have seen more services available for people like me, more technology available.  I think DeafBlind people are always the last ones to get access.  You know we come after even deaf sighted people or hearing blind people.  We're always at the end.  You know even if getting access to information in the news it seems like DeafBlind people are always a little bit behind.  So something I have been thinking about a lot is you know, how to change that.  How to get access to information and also how to reduce the stress that comes along with that.  You know, and keeping work life balance is something else that I think I would say.  You know it's really important, family is really important.  It's important to keep those great people in your life.  Helen Keller National Center is a really fantastic workplace especially for somebody who is DeafBlind.  But gaining the training and experience that you want in order to live a life that you are going to be proud of and that's going to benefit you I think is the best motivator and you have to decide what that life is going to look like for yourself.  Setting your own goals, working toward them, staying motivated you know and something I would like to say is someone who is employed of an agency who is welcoming to DeafBlind people I wish more employers were willing to work with DeafBlind employees.  America is such a welcoming place.  It's very important to be employed and have a useful skill and take it to work with you so we still have a long way to go in a lot of regards but yeah that's something that I would say.

DOUG:  So with our last couple minutes here for those who are watching now or might come to this a little bit later who are in need of more of the technologies that you teach about, who are in need to have it serve different aspects of their life, what would you say to those people and where can they go to get more information about various technologies or what advice would you have for them?

BAPIN:  Sure.  There's a lot of technology out there.  And there's a lot of resources and it really depends on what your needs are and what your communication is like.  You know, are you somebody who likes to use captions?  Are you somebody who prefers to use an interpreter?  Do you use hearing aids that help you hear speech or do you have enough sight to be able to see an interpreter?  It's really important to develop the partnerships with the people that you think will help you the most.  And I think Helen Keller National Center is a really great place if you can get in touch with them.  They have partners around the country that can help get the equipment that's best matched to you but there are professionals who can do that if you can get in touch with somebody who can assess what your needs are and match you with the best technology possible.  It's really important that whatever system you use just kind of custom designed to you.

DOUG:  Great so with our very last question here because we need to wrap up in a moment but Keith asks, how did you meet your wife?

BAPIN:  Okay I'll tell you very briefly.  I was on the board for the American Association for the DeafBlind.  We had a meeting in Atlanta.  And I met her there.  He was an SSP for another DeafBlind board member, and just over the course of the conference the two of us got to talking.  We were friends for a while.  Just kept in touch.  We exchange contact information at that conference.  We were long distance.  She was living in California.  I was living in New York but we were friends for a long time and we would bump into each other at these conferences.  And eventually I had asked her to come SSP for me at a conference in Washington, D.C.  We had known each other because we had been friends for a while and I was comfortable having her SSP for me and we found out we both really love to travel.  We had gone to India for my brother's wedding in 2006 and that's kind of when we started to fall in love and then we got married a short time later.

DOUG:  Great.  Thanks for sharing that.  That's a lovely note to end this episode on.  For those of you who tuned in or are finding this later I encourage you to go to Bapin website bapin.info.  He rights about his personal biography, there are videos there of him speaking about his life and experiences.  We got through a lot of it today but there's so much more if you want to know about him.  There's a link to his company Bapin Group.  Thank you so much for joining us today.  It's been a pleasure speaking with you and to hear first‑hand from you about being a small boy in rural India to someone who is a tech expert here in the United States and went on to build your own computers and teach about technology around the world.  So it's been interesting to hear from you.  Thanks to our interpreters Erin and Jamie and to our captioner Laura.  For those of you who use YouTube please subscribe to our YouTube channel.  In future weeks we'll start live streaming to both.  We'll continue to live stream here on took but also to live stream to YouTube as well.  And if you are enjoying these episodes please do share them with your friends and family, anyone you feel would be interested in this.  We really love when our close knit community shares the Feeling Through Live with others so that we can grow this community and have a bigger voice and a bigger platform for everyone that we speak with on it.  So thank you everyone who tuned in.  Thank you so much Bapin and we'll see you same time next week on Friday.  Bye.

Feeling Through Live • Episode 5: Loss & Healing in the time of COVID

DOUG:  Welcome to Episode 56 Feeling Through Live.  Today we're talking about a really important topic that affects everyone around the world.  That's the topic of loss and coping with loss whether that loss is loss of a job, loss of life as we knew it before a couple months ago or in the most challenging circumstances loss of a loved one which is what we will be focusing on a little bit more today.  This is certainly a topic that affects everyone.  We're really honored to be joined by Chris Woodfill of the Helen Keller National Center, he's the Associate Executive Director and he is someone I have the honor of calling a friend.  Chris why don't you start off by introducing yourself?

CHRIS WOODFILL:  Thank you, Doug.  I appreciate the opportunity to join you today for the fifth episode of Feeling Through Live.  It's really an honor to participate today.  My name is Christopher Woodfill and I am the Associate Executive Director of the Helen Keller National Center.  I am DeafBlind and Doug and I had spoken about two topics that we would like to address today one being of that loss.  Five weeks ago I lost my life partner who passed away.  Her name was Elissa Zucker.  And that is still a struggle and a process that I'm going through.  At the same time, we could talk about my life's journey as a Deaf person, becoming a DeafBlind person.  And you know after a while we will talk a little bit about those two points throughout this afternoon.

DOUG:  Thank you Chris for setting that up.  So now that we have a bunch of people tuned in, thank you for everyone who is watching today.  Chris, there's no, really there's no easy way to jump into this topic so I will just jump into it and ask you if you can take us back to and walk us through what happened to give us some context to this conversation.

CHRIS WOODFILL:  Yes.  It's going to be a bit challenging to explain Elissa's passing.  You know I haven't even received her death certificate yet and it's been 33 days.  The medical examiner report has yet to be created or received to find out specifically what she passed away from so that is still in question.  But I will give you the context of it and please bear with me that it is difficult.

In terms of of course everybody knows about COVID‑19 and really the role that Coronavirus played in Elissa's passing.  I'd like to talk a little bit about Elissa first.  She has worked at the Helen Keller National Center for about 17 years.  She started in 2003 and had a variety of roles within the center.  She's worn a number of hats.  Most recently she is an independent living instructor.  In terms of her passing, it's a little complicated.

So when COVID‑19 sort of took note, Elissa does have underlying health issues both mental and physical.  So it is a combination of both.  Her physical health issues included asthma, a very, very severe case of asthma.  She had an enlarged heart as well as a hole in her heart which caused her to have a constant murmur.  And she was also a borderline diabetic type 2, and would be classified as obese so from a physical standpoint those were her physical illnesses.  In terms of mental health issues she was diagnosed as bipolar disorder and there have been several bumps in the road in terms of her diagnosis in terms of her mental health.  She has gotten assistance where she would be in for a week or two then life would go on as normal.  But there were a few instances where she would have to go in and sort of be restabilized.  So I think it's really important to understand the whole picture from a contextual standpoint.

Her mental health declined significantly during this time.  The two weeks leading up to her death she was in a full blown break down as a result of the Coronavirus.  To the point where she was in a catatonic state in some instances where she would not respond to any stimulus whatsoever and that was really her being the majority of the day.  She was not inclined to be prompted by touch, sight, smell, hearing.  And after you know trying to engage her repeatedly in conversation you know, trying to see if I could sort of bring her to perhaps get some mental health assistance one of the things we were talking about maybe we could take her to the hospital so that she could become stabilized again was something I was considering.  But each time I brought up that the answer was met with a resounding no.  And that no was two fold.  One was that the mental health hospitals on Long Island and New York City were at capacity.  People really flocked to them during this time of the pandemic.  And the only way really to get through that 72 hour hold was going through the emergency room.  And in light of where we were, that's not where you wanted to be because the ERs tended to be filled with people with symptoms of Coronavirus.  So because of her underlying asthma, that didn't seem like a viable alternative.

In speaking with an EMT it was really recommended that she stay home and that she would come out of it.  That she would come out of this catatonic state.  And again, this was three different attempts at trying to determine how to help her through this.  And the last time I called, they said please stop calling 911.  It's not appropriate to use 911 resources in this matter.  You know what you need to do and that we can't take her straight to a mental health facility, that it has to be done through the emergency room and you stated that you don't want those services.  So that was quite a conundrum for me.

During that two week period prior to her passing there were two major groups they relied upon.  The first being the medical community, her psychiatrist, psychologist, people of that nature, who would be providing you know, medication and treatment and things of that nature and that group was very supportive and helpful.  And my reliance upon the psychiatrist in particular as he increased her medication was somebody they relied upon.  The second group of people that I relied upon were folks that brought me food and beverages and drink and sustenance.  They were aware of Elissa's condition and they were there to support both of us and provide for both of us during her breakdown and they provided quite a bit of support.

During the final days of her life she was completely catatonic virtually all day.  And I would have to try to get her up and you know really get her to do your basic needs using the restroom, eat, drink, those basic survival skills became what got us through.  So it would take about 30 minutes to get her to prompt to do any one of those things.  Anywhere between 30 minutes to an hour.  It would take five‑ish I don't remember exactly what time it was but it was later in the afternoon I tried to rouse her and she looked better.  She looked a lot better and I took that as a really positive sign.  And then she resumes the catatonic state.  About 9:30 in the evening on this particular day, 9:45 she woke up and was completely herself and I'm like hey, wow, I was really excited to see her and it seemed that she was completely alert.  And it was almost like she was in this stage of being half alert and partially catatonic but much more so than she'd been in the prior weeks.  She was awake and alert, she went and took a shower.  She was able to bathe and did that all completely on her own.  Then she came down and sat down.  She said you know I don't feel very well.  Her breathing was labored.  I found her inhaler for her and gave it to her.  She took a couple of puffs and seemed to be doing a little bit better.  She was able to eat a little bit and drink a little bit.  Brought her some grape juice.  She was able to keep that down.  Ate a little bit.  She had some Mandarin oranges, a little container of them so she was able to eat a little bit.  She said where's my iPhone?  Okay I got it and gave it to her and she called her best friend.  Her name is Viv.

Her best friend though lives in Arizona and so she wasn't able to get through so she called another friend, Gabby who lives very, very close to our home in Port Washington.  And again, her, when she answered the phone it was like oh okay she came right over and came over, I unlocked the door and brought her in and again there were issues with her breathing again, and we realized her lips had turned blue and we realized that at that point that there was something significant.  We knew that she was dying and you know it was a frenzy to figure out what to do at that point.  I started CPR, and she, there was no response.  She wasn't breathing.  When I put my hand on her chest there was no heart beat.  It felt almost like a ghost.  I didn't feel anything.  There was just nothing there.  I was like Elissa where are you?  I just couldn't feel her heart beat, her breath, there was nothing there.  So I started CPR.  The EMTs arrived very quickly I mean within a couple of minutes they were at our door.  And Gabby came over as well to assist with the interpreting during that time.  And what that looked like was that Gabby doesn't know sign language but she and Elissa were very, very close and so she came and she would text me the EMT's questions so that's how we would correspond.  I would text back to her, she would relay the message to the EMT and that's how we got the communication to work while they were performing CPR on Elissa.

Now, in light of the Coronavirus there are new regulations as far as how to provide CPR which I had just come to learn.  Prior to the Coronavirus if somebody had a heart attack and they needed to have CPR initiated they would start that and then bring them to the emergency room and at the hospital, the hospital would determine whether they needed to continue life sustaining assistance or to not.  However during the Coronavirus that is not the case.  The policies changed.  In terms of providing CPR in the fields it is for 30 minutes.  If there is no heart beat the person is deemed deceased and they are not brought to the hospital.  And that's exactly what happened.  We went round and round for 30 minutes to no avail.  They were not able to get a heart beat.  And declared her dead and that was very difficult.  That process is still very difficult to digest and to think about you know, the actual passing.  Yeah.

DOUG:  Thank you Chris for sharing all that.  If you are just tuning in, we're joined by Chris Woodfill of the Helen Keller National Center.  The topic today is loss and healing in the time of COVID and Chris has just bravely and very articulately shared his experience of recently losing a loved one Elissa Zucker quite recently within the last five weeks or so.  Chris, as you have really beautifully articulated, it sounds like it's obviously always very challenging to lose someone.  You did also do a good job of talking about the additional challenges during this current time.  During a time where we have an EMT system and a hospital system that is over taxed and therefore needing to change their normal policies in a way that unfortunately in your case made things a lot more difficult.  That's one of the realities of what has been happening over the last number of weeks and one of the unfortunately realities of it.  For those of you who are tuning in who knew Elissa, this is you know, this episode is certainly dedicated to her.  If you would like to drop a comment, a memory of her, just a sentence about her, a memory that you would like to share while we're having this we would certainly appreciate seeing those.

Chris, I'm sure this is obviously still very fresh for you.  But if you could kind of share, I think it would be really valuable for other people out there who might be going through a similar experience for you to share what your healing process has been like thus far.

CHRIS WOODFILL:  Yes.  Sure.  Well, the first week was horrific honestly.  Elissa passed at 11:15:00 p.m.  That's when the EMTs stopped performing CPR and declared it.  Her body was left in our home for four hours until she was able to be taken away at 3:30:00 a.m. and that was incredibly difficult for me.  I have had other experiences of death so this is not the first death.  This is actually the second death that I had witnessed but the first was very quick and the coroner was able to come pick up the body within 45 minutes and take the body to be taken care of.  This was much more exaggerated and that was very challenging for me.  I stayed upstairs in the bedroom.  Elissa was in your living room where we had left her.  We had put a blanket on her.  Gabby was outside waiting for the coroner.  She was waiting in her car for the medical examiner to pick up Elissa's body and she would text me when they arrived but you know I was upstairs and I would come back and really look because it was like is this a bad dream?  Is she really gone?  And I would multiple times go back and look at her body and go back upstairs and 30 or 45 minutes later go back and check again and see her laying there and realize that this is real.  And that happened at least three or four times where I just kept checking and saying oh my God this is real.  Then of course I started texting my family and Elissa's family and Helen Keller and really just started to let people know.  Once they had taken her, I couldn't sleep.  I mean my mind was just stuck in a vicious loop where it would just replay like a movie stuck in a loop and I couldn't break that cycle.  I couldn't stop the loop.  You know, and I would lay down for 15 minute and wake up again and 30 minutes and come up again.  I couldn't get that cycle out of my mind.  I felt like I was going crazy.  And I just had never had something run like that in my mind over and over again ever.  I did have one friend of mine, Kathy Anello had come to my house.  She works with me at the Helen Keller National Center.  You know we had broken that policy of not seeing other people.  She did come over to my home and she just talked to me and that's what helped get me out of that cycle.  That's what broke it and that was a huge step.  And that really is when the healing process began for me.  When I was able to get out of that loop to stop it is where it began.  It's still terrible and it's still hard to do things.  You know I had to focus on her funeral.  Her burial.  We had a shiva via Zoom that needed to be coordinated and setup.  After her burial we had a Zoom shiva meeting for lack of a better word where I felt much more at peace because I was able to grant her everything she wanted.  She was a very religious person.  She was raised as an orthodox Jew and as an adult really considered herself to be more conservative.  But at her core she was still orthodox.  And she still observed all of her religious rituals and I wanted to honor that for her in her death.  So we wanted to make sure, and that is no small feat.  There are a number of things that you have to do in a particular order and it was almost like a checklist that I was able to do all of those things on her behalf and in her honor and that's when I started to feel at peace.  And that was the beginning of my journey toward healing and I'm certainly still on that journey.  I look at it as making a choice.  You make a choice as to how you're going to respond to a situation.  You don't have any choice in what happens to you.  What happens happens.  It is what it is.  But you absolutely have a choice in how you respond to it.  And my choice, my choice was to look at all of the positive memories we had, seven and a half years together of loving each other and creating memories and creating that bond and relationship.  And that's what I chose to focus on.  As opposed to her untimely death, how it happened, the impact of COVID‑19.  But really, her ability to survive the pandemic, it was a choice not to focus on her death and the things that happened leading up to it but rather focus on who we were as a couple, honor that, cherish that and really focus on it.  I chose to focus on the reality of having to do things differently.  You know Elissa's iPhone has over 25,000 photographs.  It will take me forever to look at each and every one of those photos.  I've probably looked at about 500 a day roughly.  And at first it was very difficult to do that.  I found myself crying frequently, really almost catching my will breath.  But I continued.  And I continue to look at the pictures and to scroll through them and there were some that I delete along the way and now I have it down to 11,000 photographs that I haven't seen yet.  So that's my way of almost confronting it and facing reality of Elissa's passing.

Some people choose to avoid.  I'm more of a head on type of guy.  It's not easy.  Please, please.  It is not easy.  I don't enjoy it.  It is not fun but it is helpful and it has helped me move forward with life and living.  I've also chosen more of a positive path of healing.  Instead of avoiding.  Instead of avoidance where that could turn, you know sweeping things under the rug, maybe turning to drinking or some kind of other drug abuse or whatever it is that others, negative things that could happen if you avoid situations, I've chosen to take it more head on, take it positively and keep taking it step by step and that's helping me in this healing process.  Really get through this tragedy.  I could comment more but I will give you the floor.

DOUG:  Let's take a moment for an interpreter switch.  All right.  Are we all set?

CHRIS WOODFILL:  Yep.

DOUG:  Great.  Thank you Chris again for sharing that.  For those joining us Chris Woodfill of HKNC is sharing the recent loss of a loved one and also how he's been coping with that loss.  I think some of the things that really resonated for me in listening to your story that I hope are valuable to other people listening who might be experiencing loss themselves is the way in which you've decided to face this loss head on, to not try to avoid it, to not have it manifest in unhealthy ways but to really take an opportunity to deal with it head on, obviously deal with the painful elements of it but also find it to be a time where you can really honor the love and memories that you had for Elissa.  And I think that's really inspiring for me to hear and I hope that other people who might be going through a similar situation who are tuning in today or find this episode later I hope those words comfort them as well and I think there's also something great knowing that we're not alone in this experience.  Certainly times are a little bit bizarre right now in having to cope with this remotely so to speak, but that doesn't mean we're alone.  But I want to go actually back to something that you were just talking about a moment ago.

I had the honor to sit in on the Zoom shiva for Elissa, and that was certainly the first time I'd ever experienced anything like that through Zoom.  But it was still a really wonderful event.  Maybe if you could just, that's a very untraditional format for that but obviously a really necessary one right now.  Maybe if you could take a moment or two to walk through that specific experience being something that's such an important way to honor her memory but also a very untraditional way to do it.

CHRIS WOODFILL:  Yes, that's correct, Doug.  So during the time that we were together Elissa shared with me you know some of her desires and what she may want and different aspects of her life so I was quite familiar with what her wishes may be.  So thinking of a Zoom shiva was not exactly on the list as you can imagine but I definitely wanted to have a shiva though in honor of Elissa.  And also to really look at a way to have a celebration, to recognize Elissa you know instead of just staying in our grief I wanted to have some sort of uplifting experience and a way of sharing with others so I thought okay, let's think of how to do this.  So I had a conversation with her Rabbi and I asked if there was a way to do a Zoom shiva and they said yes, it was allowable, that they had hosted a few of those just kind of small in number for participants.  And I said actually I don't think you know Elissa.  She has a very large community so this is not going to be a gathering of 10 to 15 people and they said all right I guess we can max it at 50.  I said I don't think that's going to make it.  So the Rabbi said let's see how this turns out.  So I posted it with others both on my Facebook age and on Elissa's.  I got message after message.  Everyone was expressing how they wanted to participate with us.  It was over 500 people.  I said to the Rabbi, you better up the room.  We have the capacity to have more.  We need to be able to have 500 join us.  We weren't expecting that exact number.  I think live we had 85 join for the shiva.  Even that alone seemed quite incredible I mean, considering the platform that we were hosting a shiva in.  But for me I felt it was so important to have some sort of closure to that very traumatic experience.  It felt so lengthy, and I felt so satisfied that I really was able to check off those really critical points that Elissa wanted us to follow.  So being able to host it even in a Zoom platform.  You know it wasn't on her list but at least having a shiva was.

DOUG:  I have to say being one of the participants it very quickly, the format of it evaporated and it really was just, it felt like we were really all there together and it was really amazingly executed so definitely work out really, really well in that sense.  You know Chris ‑‑  

CHRIS WOODFILL:  Uh‑huh thank you very much Doug for doing that.

DOUG:  I want to acknowledge I had the distinct pleasure of getting to know Elissa over the last couple of years mostly through her support of the Feeling Through Experience of which you were a part of too.  And one of the fondest memories I have of Elissa is how enthusiastic she was.  Her passion really helped fuel my passion often because she was just so enthusiastic and passionate about supporting that message.  When she got involved with something she really, really loved to go above and beyond to help and support.  And you know I only have the most positive memories of her in that way because she was so unbelievably supportive of what we were doing with the Feeling Through Experience.  And that's how I remember her.

CHRIS WOODFILL:  Oh yes and I'd love to add Doug, I don't know if you realize or not specifically but I remember it was your mother and Elissa, they really had a wonderful relationship.  Did you know that, that they developed a relationship.

DOUG:  I know to some degree, yeah.

CHRIS WOODFILL:  She was actually very excited about making that connection.  I think it was one of her aims.  How do I make connections, you know particularly with Doug and his mother and I really think that you know through that whole process of the project that was actually a beautiful outcome.

DOUG:  And I think it speaks volumes of her.  She was someone you could meet and instantly feel like she was part of your close friends or family.  She had that kind of warmth to her.  And I remember one of the first times she reached out when she first learned about the feeling through experience and wanting to support it.  I loved how big her thoughts were, she was like we want to get this on Ellen, we need to get this on the news.  She was writing letters to Ellen and TV shows.  I was always moved by how much she was willing to really get behind and support it.

CHRIS WOODFILL:  Yes.  Yeah, Doug I actually still have all of those letters.  I definitely will save them.  I was looking at them on her iPhone and maybe if you want a copy of them for yourself I would be happy to take a look and send them to you.  So I have saved files of those and I know she was just getting them out there to all different platforms.  She was so excited about feeling through.

DOUG:  Absolutely I would remember is love a copy of that.  And we still have plenty of time today but I am already realizing that the other topics we wanted to discuss I will have to have you back.  I would like with the time we have left to talk about you and Elissa.  We've had the opportunity, thank you so much for being so open and sharing the challenges of losing her.  Again, it's something that is a really.  It's a reality for a lot of people right now, and I think there's something really valuable in you sharing in such an open and honest way.  But also beyond that sharing your process of starting to heal which you are still early in but have shared so eloquently your leaning into what's happening, addressing it and finding the time to honor her memory.  So I would actually love to hear from you.  I'm sure there's so many memories to choose from but share a really great memory of the two of you.  I would love to hear about that.

CHRIS WOODFILL:  Oh yes, sure.  I think I would like to share about how we met.  That might be a good way.  It was actually quite interesting.  At the time I was a consumer myself at Helen Keller National Center in 2008 during the summer.  I went there for an eight week program.  At that time I was a teacher at the Wisconsin School for the Deaf so I was busy doing my teaching but I was struggle with my vision and I can talk about that in a future episode.  But I was having struggles in my own journey in terms of identity.  So I went to Helen Keller for some training and Elissa was actually my vocational employment instructor.  So she was the training specialist in that department.  And her role was really to help me to strategize ways in which I could preserve the position I had as a teacher as my vision continued to decline.  So that was an interesting experience and I have to say Elissa was a little nervous in that interaction.  You could see she would appear a little anxious and Elissa would explain to me that I had just been transferred to her 15 minutes prior to our first engagement.  They had just switched me out so she was a little uncomfortable because she didn't get a chance to know about my background or understand who I was as a person so she came into it a little bit awkward so we sat and chatted and we connected just really.  Well now, granted she's the teacher and I was there as the client.  But I could tell you know her relationship with the other instructors was wonderful and I also connected with those people as well.  So I had left and I maintained contact with some of the instructors and Elissa was one of them.  We kept in touch through Facebook and email and texting sometimes while I was back in my home state.  I continued to come to Helen Keller because I specifically came to run the summer adult training program.  I was asked to facilitate that so over the course of those visits you sometimes I would meet with the instructors they had when I was a client there and Elissa was one of them.  Then I moved here to New York City and officially began a position as the regional representative at Helen Keller National Center.  So I had vacated my position in Wisconsin, moved to New York and I had heard at that time that Elissa's roommate had moved out.  And she herself was looking for a roommate.  I thought that's interesting the timing of it all.  I asked her I heard you are looking for a roommate.  I literally just moved.  I had no place to live just yet and Elissa said come take a look at the place.  I came, realized it was a beautiful place, and she said do you want to take a look around at other locations and I said no.  I know what I like.  I know what I need.  And once I know if I like something I just make a decision.  I don't need to waste my time and energy going around looking at other places so I immediately moved in.  So as I did we began our friendship, we became closer, we got closer and that's really the development, the foundation of our relationship was out of friendship that way and we just remained together and grew together.  So when I look back over a course of time my goodness the memories are many.  Let me think about some of our favorites.

Well when we traveled together we very much liked to be able to go, I'm trying remember the full name of it.  DDD diners where you can check out the different levels of the different locations to eat and entertain.  You know the chef, he's the one with the big white spikey hair do, I think he hosts those, it's the diner, drive ins and dives, you know that label so we would look at the website and see what he ranked.  We would always that part of our journey when we were on the road so we were able to meet a lot of Guy Fieri's restaurants that he highlighted on his shows and we would post pictures and tag it as one of those on Facebook.  Now, granted I've done a lot of posting and Elissa has done a lot of posting but if you scroll way back you would see a lot of these DDD restaurants that we had visited.  So that's something that I really enjoyed.  And then one of our trips would be over the course of a weekend.  We would go out to Montauk, or out to Sag harbor which is a stunningly beautiful location on Long Island.  Those would be weekend trips and we would just kind of jaunt around and over the course of the weekend we may stay at a hotel and take our time.  We've also traveled quite extensively throughout the world.  We have been to Dubai, Spain, France, Mexico, Panama, Saint John, St. Thomas.  We've been to a whole variety of locations throughout the globe and throughout America as well.  We've done a lot of domestic travel.  So I have to say the experiences we have together are extremely rich.  Eating out at a multitude of restaurants and having a variety of experiences that were shared together.  Oh my goodness the salt caves we experienced were wonderful.  That's one of the really cool things I can mention now.  Oh my gosh, really, there are so many Doug.  I mean we've done so many things together.  Oh my goodness and also we've been to so many Broadway performances.  I am a big theater goer so we've been to so many Broadway shows.  The list is endless of the thoughts I could share with you.  And again, this is a great way for me to share and to think of the healing process is to look back on those experiences and those memories in a really positive manner and all the ways we really enjoyed each other.

DOUG:  Those are really great memories, thanks for sharing, Chris.  If you are watching and have your own memories of Elissa feel free to write them in the comments.  We would love to see those after.  Chris I'm just wondering, you know obviously you shared, you've walked us through to this point that you are at now.  I believe you are, you also traveled from New York to Pennsylvania to be with family now is that correct?

CHRIS WOODFILL:  Yes that's right.  Uh‑huh.  Yeah.  So I left New York to be with my family her in Pennsylvania.  You know, for a short period of time.  This is almost a little bit of a Coronavirus free zone shall we say.  There really are no identified cases right near where I am so it allows me to feel a little, I don't know disconnected from the reality of the situation in New York.  You know I needed that disconnect to be able to focus on myself and to be in a safe place so I can focus on my healing and moving forward so that's the exact reason I came here and to be able to focus on those steps and healing.

DOUG:  So with the last 10 minutes we have today if there's anyone who is watching or has thoughts they would like to share please write those in the comments and we would like to share with the remainder of the time we have.

Chris this might be a hard question to answer because there's uncertainty for everyone right now but as you look forward, as best as you can talk about right now what does that look like for you moving forward?

CHRIS WOODFILL:  Okay Doug.  Moving forward.  Well, you know that I plan to stay here in Pennsylvania for a period of time, particularly as relates to the shelter in home mandates in New York and when things are allowed to be opened up again, we're not entirely sure when that will be.  I mean I'm able to work from home and of course everyone at Helen Keller is currently working from home.  There's no one at the center so it actually doesn't matter in terms of my physical location.  I can still maintain my work.  So my plan then when we are able to sort of open things up back in New York I will go back home whenever that is, it remains a bit of a puzzle.  Regardless, I had made a request shall we say to Elissa's family in regards to her possessions that once I return back home, I do want to be allowed the honor to go through and identify my items, Elissa's and then I will turn those over to her family once that is completed.  That is definitely going to be a very difficult part of this entire process.  I'm not quite ready.  I'm not quite there to start that process, but I do know that that's a reality of a loss is having to actually go through her things, before then I can turn them over to her family.  As relates to my work with Helen Keller, you know, I don't have any plans for any changes.  I really plan to maintain my work.  I'm in it for the long haul.  I'm happy to maintain the position and Helen Keller is supporting me through that.  Things do seem a little fuzzy right now in terms of the next step after the sifting through.  That seems to be a big hurdle that's ahead of me.  So to see what's beyond that mountain is challenging but I know that I will find my way.  I will have to navigate through this process to get to the other side.

DOUG:  So for a moment I'd like to ask you for anyone who is watching this right now or is going to watch this later, speaking directly to them, particularly anyone who might be going through a similar loss themselves, is there anything you would like to share with them, those people directly speaking from your own experience, any words of wisdom or anything you would like to say speaking directly to those people?

CHRIS WOODFILL:  Uh‑huh.  Well like I shared before, you know, we, no one has a choice about what happens to them.  That's not our choosing.  However, everyone has a choice in how they respond to what has happened to them.  So I guess I would want to encourage others to look at that response in as positive a way as they can, because you will have and experience positive outcomes even to difficult things that have happened to you.  I really do think it is a choice and I think you can make that choice quite wisely.  So I guess that's my main recommendation to people who are going through something similar to this.  And secondly, again, looking back to the immediate loss I could not, within the first week I couldn't even see past the first hour.  I couldn't even think about tomorrow.  I really had to focus on the absolute immediate future.  I had to focus on myself what am I doing in the next moment and literally take it step by step and to continue to do that in a mindful way.  And I know, I knew I would come out on the other end but I had to take it literally moment by moment and focus on the near future.

DOUG:  I think that's great advice Chris and great words to share.  Again as we stated earlier in this broadcast there are certainly many people out there many of which might be tuning in to this episode who can certainly relate to what you are going through and I think hearing from you and your experience going a long way in a collective healing and for everyone who is going through something like this to know there's other people going through it and to hear from them means a lot.  So again I really want to thank you for how open you have been about your experience and sharing it.  And I personally really appreciate it and I'm sure there's a lot of people watching who appreciate it.  With the last few minutes here if you are watching and you would like to write a note to Chris that he will be able to find here on this thread later, feel free to do so.  If you would like to share a memory of Elissa feel free to do so.  Once we finish this live broadcast this video will remain on the page and you can share with other people.

CHRIS WOODFILL:  Right now I am on Zoom so I won't be able to read these comments right now but I look forward to reading them at a later time so I can go back and scroll through.

DOUG:  And again, I just want to dedicate this episode to Elissa Zucker, someone who certainly had a huge impact on the lives of everyone who is part of this conversation today and I'm sure a lot of you tuning in.  Chris, with just the final moment or two here is there anything else you would like to share?

CHRIS WOODFILL:  Sure, Doug.  Knowing Elissa the way I do, I know Elissa wants everyone to be happy.  That's always her aim.  She could always see the happiness and the spark in people.  Now during the pandemic, she still was sending out little nuggets of positivity to people.  She was still sharing jokes and moments of laughter with others.  So I would like people to continue to do the same thing.  Spread that joy knowing through this passing we know that this craziness and this pandemic phase we're in will pass.  We will be in a better place.  So I want to know that I am with you, and that her thoughts are also with us and we will challenge and I know that I will struggle emotionally through this as many of us will but we know in the future things will get better and I hope that you will carry that with you.  That would be Elissa's message.

DOUG:  Thank you Chris.  I think that's an amazing place to end today's episode.  I want to thank you for joining us.  You will certainly have to come back again soon because there are certainly so many topics that I would like to talk about with you that we'll get into soon.

CHRIS WOODFILL:  Doug I very much look forward to that.

DOUG:  I really appreciate the openness with which you shared.  Thank you to our interpreters Angela and Susie and our captioner Laura.  Again Feeling Through Live will be here at the same time.  If you liked what you saw today this video will still be on our page after the conclusion of this live broadcast.  Please share it with other people.  If you know other people that you feel might be interested in future episodes please tell them to follow our page.  Soon we'll be on other platforms particularly YouTube so if you want to follow our YouTube page we'll be airing live episodes as well.  Again just want to end on the last note of honoring the memory of Elissa Zucker and the lovely amazing person that she was and the lives that she impacted and it was really an honor to be able to spend this time today Chris to talk about how you are doing and also honor her memory.  So thank you, again.

CHRIS WOODFILL:  Thank you very much.  My pleasure, lots of love to everyone.

DOUG:  Take care, everyone.  Have a great weekend.

Feeling Through Live • Episode 4: DeafBlind/Sighted & Hearing HKNC Coworkers Married 17 Years

>>DOUG:  Welcome to episode 4 of feeling through Live.  We are joined by Maricar Marquez and Don Horvath both employees at the Helen Keller National Center and a married couple.  We will talk about how their work there at HKNC and also about their personal lives.  They're generous to be sharing with us about their life as a couple as well.  Without further adieu, Maricar, I would love if you could tell everyone about your position at Helen Keller National Center.

>>MARICAR MARQUEZ:  Hi, everybody.  I am the supervisor of the independent living department at Helen Keller National Center.  I have worked at Helen Keller for over 22 years.  This summer was my fifth anniversary as supervisor of this particular department.  And my job involves running the independent living department.  I have four instructors that are in independent living with me, and we do assessments for the DeafBlind students that come to the center so we assess their life skills, things like cooking and cleaning and we provide instruction on those things.  We teach our students how to live as independently and as safely as possible.  We also have two apartment programs in Helen Keller National Center.  We have one that's located in our dorms which are on campus in Port Washington in Long Island and ones located off campus and those apartment programs are a collaboration of all of the departments at Helen Keller National Center but they're led by the Independent Living Center but they incorporate mobility skills, communication skills, technology, vocational skills and the ultimate goal for students is to be able to navigate their homes safely as well as their work environments.  So whatever their work environment entails we support as well.

>>DOUG:  And Don if you could give us an overview of your position at HKNC.

>>DON HORVATH:  So I work in the adaptive technology department, and there we teach different skills to a variety of students.  Some students are total DeafBlind, some students are hard of hearing so it all depends on the modality.  We teach braille displays, low vision programs like Zoom Text and speech output programs like Jaws and we teach people how to access websites, email, text messages just to get them connected with the world again, and I have to say that you know, I work with a wonderful team who taught me everything I know.  I joined the tech department about three, three and a half years ago and it's just been a wonderful experience because I have been able to watch the students really like master their technology whether it be using, can I show them some of the technology, a Focus 14 braille display with an iPhone.  Right now Maricar has her iPhone tethered to her Focus 14 and she gets males and text messages that way.  So I teach people how to access information and I've taught people how to use their iPads and the QWERTY keyboard with the speech output program to access emails.  So depending on the consumer we have different goals that we want to achieve.  But within the same medium.  So prior to that, I had been working at Helen Keller for 20 years.  So prior to that I was a case manager in the community services program and prior to that I was working in the communications learning center.  And prior to that I worked in the vocal services program and prior to that I worked in the dorm where I first met Maricar.  So we go back.

>>DOUG:  I definitely want to get to that in a little bit.  And I want to get to in just a moment I want to talk about how your jobs have changed in this time of COVID but before we talk about that I would love to just talk about communication for a moment.  So maybe you know, obviously for people who are tuning in right now who might not be familiar with different communication modalities in the DeafBlind community, we can see that Don when you are speaking you are both speaking and signing to Maricar at the same time.  Can you talk about what that mode of communication is for people who maybe have never seen it before.

>>MARICAR MARQUEZ:  So I have Usher's Syndrome, I was born deaf but I grew up with vision.  I learned visual sign language but part of ushered syndrome is retinitis pigmentosa, so I have progressive vision loss.  So at first I had a hard time seeing in the dark and it got worse from there.  I grew up just as a deaf person using visual sign language like most other deaf people and as I got older and my vision got worse I depended more and more on touch and transitioned into tactile sign language so I am feeling what he's signing as opposed to looking at what he's signing.

>>DOUG:  Thank you for explaining tactile sign language and Don if you could speak on, in this case in an ideal situation we would have another interpreter on your end so that someone would be interpreting for Maricar but not having people coming freely in and out of places can you explain Don what you are doing in having to speak and sign at the same time?  Can you describe what that is.

>>DON HORVATH:  Being that I'm talking and signing at the same time we call it simcom because it's simultaneous communication.  It's not easy because sometimes I lose what I'm thinking and saying in the sign.  So hopefully Maricar she's getting it.  Most of the times she knows what I'm going to talk about because we've talked about it before or if we're with family and friends, if I am simcomming with her family, this happens a lot in the community because a lot of times I don't have an interpreter to pull out of my pocket and go here you go so a lot of times it involves like a little chat after the dinner or after we meet with friends we'll just chat ourselves, and talk about what happened.  So this is not ideal but it's workable in this situation because of the situation we're in.

>>DOUG:  Absolutely.  And again correct me if I'm wrong but to my understanding, sign language has a different sentence structure and syntax than you would use if you were using simcom so is that a place in which those differ.

>>MARICAR MARQUEZ:  So tactile ASL follows the same structure as visual ASL.  I'm just you know, receiving it via touch instead of through vision but there are certain accommodations that have to be made when you are adapting visual to tactile language.  So it's very similar but there are differences that have to be accounted for.

>>DON HORVATH:  But when I'm using simcom it's not always ASL because I'm thinking in the English language and I will be finger spelling more things to her that you know, I would normally sign and it's not going to be an ASL structure.  I try my best but I'm thinking two languages.  So others are better at it than me.

>>DOUG:  A question for both of you about that.  Do you feel like because of obviously how well you know each other as a married couple for the last 17 years that that makes communication like simcom which isn't the ideal scenario, does that make it, do you have a better understanding of each other because you know each other so well?  Does that help the communication?

>>MARICAR MARQUEZ:  If we're just talking then we'll just sign.  There's no need to use English.  But if we're around other people. 

>>INTERPRETER:  Don is clarifying the question for Maricar. 

>>MARICAR MARQUEZ:  Yeah, sorry, I misunderstood your question.  I can understand Don very well.  You know I can understand when he simcoms, when he's using ASL.  We've known each other so long I'm used to communicating with him so we have a much better understanding of each other I understand him easier than other people.

>>DOUG:  Let's jump back to both of your positions at HKNC.  You gave a great overview of what those positions are normally but obviously things are different now because of COVID and I understand that in both of your positions you've had to make changes as a result of that.  So can you talk a little bit about talk about your roles at HKNC again but now this time talking about the adjustments that you have had to make because of what's happening with COVID?

>>MARICAR MARQUEZ:  Yeah.  It's been challenging.  You know DeafBlind people as a whole are very varied but in general even though there's varying degrees of hearing and vision loss independent living skills really have to be taught in person because the DeafBlind culture is so heavily dependent on touch.  So there's a lot of showing people things via touch or handing equipment to them so they can feel what it feels like so it's really hard to do things virtually.  Now with COVID‑19 has really impacted our ability to teach those skills.  We have had to modify our lesson plans and modify our teaching techniques to adapt to this new online environment.  We're trying to do our best.  We're being as creative with different techniques.  My staff has been hard at work thinking about adaptive strategies that we can use in teaching skills remotely.  We've been using Zoom and face time to watch somebody work and give them feedback that way but it is definitely a challenge.  It's important that you know, the student also has to accept where they're at as far as their independent living skills.  So we're trying to do our best to provide as many resources as we can as well as provide virtual instructions.  We're enlisting the support of family members or people at home with them because there's no instructor to explain things.  We have specialized equipment at Helen Keller National Center where things are braille or with raised dots and people don't have that in the home so we've had to get help from family members in supporting the students.

>>DOUG:  To everyone tuning in if you have questions throughout this broadcast feel free to write them in the comments system.  I see a lot of familiar names popping up and some that aren't.  I know we've had people tuning in from all over the place.  I would love to know where you are watching from so if you could write in the comments where you are watching from it gives a great sense of ‑‑ if you have a moment and you can write in the comments let us know where in the world you're watching this broadcast from we would appreciate that.  And I want to let Don and Maricar that you are getting a lot of love in the comments here.  There are a lot of people who are big fans of you as well.  So I just wanted to let you know as we continue here.

>>DON HORVATH:  Wonderful.

>>DOUG:  So Don, question for you.  I know that obviously technology had to become our best friend during this time where we're all communicating remotely.  Sometimes it's our worst enemy as we've learned with these live broadcasts sometimes things don't go quite the way you've planned but from a technology how has your job changed and what technology changes have you made.

>>DON HORVATH:  That's a loaded question.  It's changed a lot.  Especially I had a lot of students that recently came in for evaluation.  And normally what we do during evaluation and in, during the beginning of the first training period is recommend equipment.  Because the student is just learning about the best type of technology for them.  And what happened was I had about three or four students that had just come in, just finished their evaluation and all of a sudden they had to go and now they went home and I'm learning more about what they have at home you know, some have more than others but some don't have the appropriate equipment.  So the first challenge is, okay, how do we get that equipment?  Is their ICC program up and running?  How does that equipment get delivered to them?  Because there's some strict rules about you know, they have to meet and set up the equipment.  How do we successfully get them that equipment without the contact?  So we are thinking about that.  And just evaluating their skills again, on what equipment they have.  I had somebody at home with computer screen that was too big for them and they were having problems accessing it.  So one of the things that we had to do was I said okay get your iPhone, take a picture of the screen and text me that picture and I would circle what I needed them to find on the screen and I would circle it and they would have to look.  I would send a text back, they can enlarge it using magnification on their iPhone and find what they needed to click on, on the screen and that had to go back a gazillion time.  Then we take a break.  For all that we accomplished one small part of the bigger picture.  It took a week for that to happen.  I involved the low vision specialist.  I put my iPhone, I clipped it on my shirt.  I said is this okay?  We're incorporating a lot of different, creative ways to make this a successful training for the student.  I think it's worked in a number of different scenarios.  I have two hard of hearing students I work with.  One I call up and we work on voice over with their iPad.  The other I call up and we use the Jaws speech output program and I can tandem into his Jaws on his computer and I can work together and I can inform him of the commands that he would need to do to access all the stuff he used to access before using a mouse and pointer, now he can do all that using keyboard and short cuts listening for access output so we can access his computer again.

>>DOUG:  Sounds like each student has different needs and you find ways to tailor for each student so sounds like a good time for creativity in your department.  A question for Maricar.  You were describing how you communicate through tactile ASL through touch.  But obviously you are having to do your job remotely where you are not able to communicate tactilely with your co‑workers like you normally would.  So what are some changes that you have had to make around that in order to communicate remotely during this time?

>>DON HORVATH:  This is Don.  I just want to add that I do not interpret for Maricar at all, because I have to do my job and she's busy on her job so now she will inform you how she's doing all of that without an interpreter.  It's pretty amazing so go ahead.

>>MARICAR MARQUEZ:  Yeah, since Coronavirus has spread, we've been at home.  There's no way to get any tactile interpreting services or in person meetings.  We have those every day when we're at Helen Keller National Center but at home we haven't had those.  You know, I use interpreters for everything.  For every meeting, almost, you know, every class but we both have our own jobs to do so I can't have Don interpreting for me all day every day.  You know, Zoom is something that a lot of people have been using.  It's what we've been using for our meetings.  All the supervisors of Helen Keller National Center meet, all via Zoom but it's visual.  I didn't have any experience with Zoom before this but I had to figure out how to use Zoom with braille technology.  It's impossible to use Zoom with Jaws to make it accessible N on a braille display.  I didn't want to be left out so we tried a couple of different approaches and platforms.  Not all platforms are accessible with a braille display.  It's also difficult to navigate around certain apps using a braille display.  So some are more easily navigable than others.  I will join on Zoom and I can sign like what is happening now and someone can voice for me but the interpreters email me so I can read in email so I know what is being talked.  About I have a Fitbit and Apple watch so I know when I get an email.  I am a little bit behind than everybody else and thankfully everybody has been very, very patient in giving me extra time to catch up during these meetings but I can participate because I am reading these emails and if I want to make a comment I tell the interpreter and everyone pauses so I can catch up and I can participate in the meetings pretty fully.

>>DON HORVATH:  I just want to ask Maricar are you using the computer for email and your iPhone for text?

>>MARICAR MARQUEZ:  Yeah I have them on separate devices.  So I get text messages on my iPhone and simple messages from the interpreters like go ahead and make your comment or something like that.  But I use a Focus 14 to pair with my iPhone when I am going out and about.  But at home when I use my laptop I use a focus 40.  It is a little bit bigger and better for email so I use my Focus 14 on my iPhone and focus 40.

>>DON HORVATH:  She looks like a concert pianist.  She has a braille display on this table, another one on this table and when she goes it's your turn to use Zoom she's like this and she's ready to go and after she puts her hands down she goes back on to the braille display.  I've had the luxury of watching that from like all the team meetings that we've joined, and the interpreters will be like Maricar's just catching up.  You will see her move this way, this way and when she is ready she will sign to the camera.

>>DOUG:  Thank you for that description.  It's helpful to paint that picture.  We have a question from Kim Norton.  She asks what is a Focus 14 and a Focus 40?

>>MARICAR MARQUEZ:  So they're two different models of braille display.  The reason Focus 14 is called 14, it is how many characters.  That's a Focus 14.  Six dots, each of those is a cell.  There are 14 cells.  That makes it a Focus 14.  A Focus 40 has 40 cells so it's a lot larger.

>>DON HORVATH:  And you don't have to refresh it as much so you can read more on the line before having to press the button to refresh.  So basically you are going to get half a sentence and when you refresh the other half of the sentence it comes out with a period so you know that's the end of the thought there.

>>DOUG:  For those who might not be familiar with Braille, a question that pops up for me and I imagine some other people have it is how fast you know when you are really proficient at braille how fast can you read messages through braille?

>>MARICAR MARQUEZ:  I learned braille a long time ago.  I started learning whether I was 22.  I didn't use it when I was 22 but I still had vision but I knew one day I would need it so I started learning early so I could make that transition easier for myself.  I have been using braille completely for about 8 years now.  People that are born blind can, they're better at reading, that reading from a young age they are so incredibly fast.  When I read I am nowhere near their speed.  It is a slow process to learn.  You have to adapt to using your finger tips to feel characteristics.  It is not easy.  It feels differently whether you are reading braille on a piece of paper as opposed to a braille display I just showed you.  I love the Harry Potter books.  I read the book 1 but by the time 7 came out, I had to read it completely in braille.  So because I was motivated like I really loved those books and I wanted to be able to read them, I would practice as much as I can.  It took me about 20 minutes to read one page when I first started which is really, really slow but I started to get faster and faster.  Now I read at a pretty average pace.  I would say you know, I can keep up pretty much similar in speed to what I was able to do visually.

>>DOUG:  You know Maricar you are the second person in four episodes of Feeling Through Live that have shared their love of Harry Potter and I remarked that I have never read any of the books and I feel I'm getting a sign that I need to start reading Harry Potter.

>>MARICAR MARQUEZ:  Yeah, you definitely do.

>>DOUG:  So to follow up to the braille comment we have a question from Barbara who asks:  For those people that have been using braille their whole lives can the fastest braille users read just as quickly as people who are visually reading?

>>MARICAR MARQUEZ:  It's individual.  So it depends on the individual skill level just like some people read faster than other people visually, some people going to read braille faster.

>>DON HORVATH:  I am going to chime in.  In college I wasn't the fastest reader and the stuff that I'm teaching my students has benefited me.  Like I use voiceover while I'm reading one of the Kindle books on my iPhone.  I will be reading along with the speech output so I can read that book a little bit faster for myself.  I will turn the page and I will do that.  It's fun and number two it helps me read faster.  So some of these things that we teach can be useful in our personal lives as well.

>>DOUG:  That's a really great point.  So I just want to note it's really great for those tuning in, I see people are tuning in from all over the place.  Canada, Los Angeles, New York City, Pittsburgh, all parts of New York and Long Island and Washington and Delaware.  We're so glad a platform like this allows us to connect with so many different people.  If you are just tuning in I am speaking with Maricar Marquez and Don Horvath both employees of Helen Keller National Center and also a married couple for 17 years.  Maricar is a supervisor in independent living and Don is a Senior Technology Instructor.  We've talked about the ways in which COVID has forced them to make changes in their position.  And I want to transition, oh we have Northern Ireland as well.  Thank you Donna for joining us from Northern Ireland.  But let's talk about how COVID has affected your personal lives.  How do your personal lives look different since COVID has been occurring over the last number of weeks now?

>>MARICAR MARQUEZ:  I am a very, very active person.  So before COVID I was really involved in a lot of different activities.  I'm a runner.  I've run the New York City marathon before.  I've competed in triathlons.  I have gone parasailing.  I like to get out and do a lot of stuff.  I run with my dog Cliff who is a black lab and a guide dog.  Achilles Runners, we go out all the time.  But now because of COVID, we can't do that anymore.  So it's not just me, it's everybody that is affected.  We're not as active as we are used to being.  We have been home a lot more.  We like to bike ride together.  Don and I go on a tandem bike on 40‑mile bike rides.  Now we just don't have the chance to do that as much.  So it's been a big challenge.  You know, we've got to figure out different ways to be able to keep ourselves engaged while we're staying home.

>>DON HORVATH:  Like playing games such as Scrabble and Upwords, we have those in braille.

>>DOUG:  I'm going to hold one moment for an interpreter switch.  We just switched interpreters which is customary to do in longer conversations such as this.  So continuing the conversation, yeah Maricar I definitely understand that you are very, very active so I can imagine it's challenging to be cooped up inside so much.

>>MARICAR MARQUEZ:  Yeah.

>>DOUG:  So let's, I'd love to talk a little bit to get to know you.  We got to know you both as professionals at HKNC but one of the great things about having both of us join today is that you have been married for 17 years.  I would love to get more of a sense of your relationship.  Maybe we could start with how you both met each other.

>>MARICAR MARQUEZ:  Well, we met at work.  We were both working in the dormitory at Helen Keller.  We were friends at that time.  When Don first started he didn't know sign language.  He had very, very basic skills so mostly how we communicated was writing back and forth.  We were both dating other people.  We had broken up with our significant others.  We were going out as friends.  His signing skills were getting better.  He was learning naturally and developing that skill.  But yeah we started off as friends and it progressed from there.

>>DON HORVATH:  We've had that question asked to us when we teach a sign language class for the first time, and my response is that I met her on a blind date.  And we have a quiet class until I said no, no, no and then she tells the story.  It's an ice breaker.

>>DOUG:  That's a good ice breaker there.  Maricar was just mentioning that your ASL skills were maybe, that you were in the process of ‑‑ oh sorry.

>>MARICAR MARQUEZ:  Going back to Don and his signing skills, a funny story is that when we were friends working together in the dorm we were going out often and he was developing his skills.  We had gone out to eat at Burger King.  We were just sitting at the table eating and he kind of just looked at me and he's like, so, we're friends, but you know, are we more than friends or can we be more than friends?  And so you know I knew his signing was not that great so I signed the sign never and he didn't understand what that sign meant and so I had to finger spell it, like N, E, V, E, R.  Like it's never gonna happen and obviously I was wrong and you know what I learned from that?  Is that you never say never.

>>DOUG:  Speaking from the guy's perspective Don I can definitely feel your pain in that moment but as I kids say definitely a lot of respect for shooting your shot and taking your chance in the moment.  So it worked out so whatever blow to your ego might have happened at the moment, it looked like love prevailed in this case.

>>DON HORVATH:  No more Burger King!

>>DOUG:  I think to that question I've obviously had the opportunity to meet both of you over time and get to know both of you and you know everyone that's in your lives on a regular basis obviously just knows you as Maricar and Don like anyone else.  For those of you tuning in who aren't familiar with the DeafBlind community and maybe hearing about for the first time a relationship between someone who is DeafBlind and a person who is sighted and hearing, the first question around that is for Maricar had you ever dated anyone that was sighted and hearing before Don and Don had you dated anyone who was DeafBlind before Maricar?

>>MARICAR MARQUEZ:  Before I met Don yes I had dated some deaf individuals, hearing individuals.  But I never believed or thought that I would marry somebody who was hearing.  But you know it's just what happens.  You know you meet somebody and you just fall in love.  Doesn't matter you know, if you are DeafBlind, sighted, hearing.  When you love each other you just are able to overcome so many obstacles, learn the communication and it just works.

>>DOUG:  And Don I'm curious on your side that question from you.

>>DON HORVATH:  No I never dated anybody DeafBlind before.  So I mean, no.  We would go to like, what do you call it?  Deaf happy hours together and then I had met like a hard of hearing young woman there, and you know, I remember when we were dating, well, how did it go?  We would always talk about who we dated and what was happening.  And I think it wasn't until you know she got mad at me for some reason at work and we got into an argument and you know, it was some party I was going to and I said oh, I don't want to go to that party with you.  So I asked another girl out who had recently started at work at that time and the co‑worker up there heard me and was friends with Maricar and she said, rumor, and Maricar found out.  I got bad AOL‑IM at the time.  So two things Maricar helped me out with, my signing and my typing.  I got really fast because she said what's taking you so long to type the response back you know?  I said what is this?  Why are you so mad?  If I am asking this girl out, we talked about every other relationship.  So something is, something started, I think a spark in there.

>>MARICAR MARQUEZ:  I was mad, but you know at that time I didn't realize I had feelings for him and I was just really recognizing that, I actually had feelings for him and I was falling in love.

>>DOUG:  And Don you mentioned that early on your signing wasn't so great.  I'm wondering just what that was like to navigate that and getting to know someone obviously on a, in a personal intimate sense how, what that was like, the learning curve as far as communication and learning to sign better while on the fly with someone that you are getting to know really well.

>>DON HORVATH:  Again, what happened where I didn't understand what she said, I would drop her off, get back to my house and get on AOL to make sure I understood what she was saying.  She would get so mad at me but it didn't stop her from calling me the next day asking me where we're going to go.  But you know, also I think I picked it up pretty good, like I always learn best by watching someone sign.  And you know at first when you do sign language you don't realized how important your facial expressions are to the grammar and syntax of what you are saying, how your body language is important.  And it was only six months that I was at the residence and one of the deaf staff said we understand you clear.  You are improving better.  It's those small words of encouragement that keep you, thank you, thank you very much.  So you think you may look silly to the hearing world but you are actually, that's how, that's the body language, the facial and I don't have a poker face, so that really helps because if I am shocked I'm shocked.  If I am excited I'm excited.  You will see that in the way I move and communicate with people.

>>DOUG:  And so now flash forward obviously, that was a long time ago and you have now been a couple for a long time.  What is like, you know when things are normal and you are able to be out in the world what might a night out look like for the both of you?

>>MARICAR MARQUEZ:  Well we're pretty active.  We love to go to the theater.  We love to go to the movies.  Some theater performances do provide interpreters, some do not.  If they don't provide interpreters then Don will interpret for me.  For example:  He loves Star Wars.  And I've known the story and he tends to watch them often and he will interpret them for me.  So when we went to the theater to see the new Star Wars movie, I think that was Force, it was the newer one, the Force Awakens.  So we got there early in the morning because it was less crowded.  We sat in the back and he actually brought these little figurines of the different ships so that way he was able to actually emulate what was happening on the screen with the figurines so I can feel it in realtime as he was explaining the story of what was happening.  So he was able to make that experience more tactile for me.

>>DOUG:  That's a really informative description there I think for those of us who have never seen that method use of communication.  I can only imagine having seen some of the Star Wars movies those scenes are so intricate I'm sure having objects to demonstrate what's happening would be a much clearer picture than trying to describe it through signing.

>>MARICAR MARQUEZ:  Uh‑huh.

>>DON HORVATH:  And it helped that I saw it like three times before the time that I would interpret it.  So that was the first new of the Star Wars movies.  The second one she was so excited that it was coming out because she liked the Force Awakens so much we went that Saturday morning together, and I was like oh my goodness I'm going to have to interpret two hours and whatever and somebody did me a favor and they pulled the fire alarm in the middle of the movie and it gave me a break from signing so I thank that person who did that even though everybody in the theater was mad at you.

>>DOUG:  I love the earnestness of you being happy that a fire alarm was pulled while everybody else was upset about it.  But I think those who aren't familiar with tactile ASL there isn't a great reference point of the physical demands of it over time.  Maybe both of you can speak about speaking to each other throughout a day what are physical demands of tactilely signing with each other.

>>DON HORVATH:  I will start talking about like if we wanted to go on a date.  I was looking on the internet seeing we can get cheap tickets for Frozen on Broadway.  So that morning I interpreted the movie, I took a break in between and then we went to the play and we, I interpreted the whole play.  So I mean that's like a special day.  But on a regular day you know, it's not as taxing for me because I'm not interpreting for anyone.  It's just me.  So if I am signing to Maricar, that's not a problem.  I mean we can talk for a long time because it's that one on one and I'm not interpreting for somebody else.  So I think in the relationship you know, yeah we need a break.  I enjoy going to concerts and movies and riding my bike miles and miles away you know, and then coming back.  A lot of times we're together on a tandem bike as Maricar mentioned before.  We love to ride.  We've ridden from our house in Queens to New Jersey and back.  And hills and everything so we're, we love biking.  So that's something we do together and separately when I can.  I don't like to run so she runs with the club and her friends.  We just did a triathlon this past summer where I did the biking and her friends did the running, special shout out to Erin, Cliff and Nora who did the swimming with you.  So yeah.

>>MARICAR MARQUEZ:  Also Don doesn't like heights.  He has a fear of heights so I wanted to go hot air ballooning so I went with a friend just for fun for myself because Don didn't want to go because he doesn't like those types of heights.  So it was a really great experience but while we were in the hot air balloon he was actually in the chase car chasing us and he had to watch where the balloon goes and follow us.  Where he would land the was right in the middle of a neighborhood.  We were in somebody's driveway between two houses.  It was about 8:00 in the morning on a Sunday and the girls and the parents that were in the house actually were still in their pajamas and actually came out to see this hot air balloon just landing in their actual driveway.  And because we had to land there they actually had to bring the whole balloon down, fold it up.  We were able to sit on the balloon itself to compress it to fit it back in the van.  It was a lot of fun.

>>DOUG:  That's what we call a grand entrance right there, arriving by a hot air balloon.

>>MARICAR MARQUEZ:  [laughing]

>>DOUG:  A question about the tandem bike riding, a question from Cindy about how you communicate with each other when you are on a tandem bike?

>>DON HORVATH:  So I'm going to preface this by saying don't try this at home okay?  I'm very skilled at riding a bicycle you know?  Not to mention when I was younger I fell off my bicycle a couple of times and that's how too tooth got knocked out but I'm skilled at biking right now.  When I ride the bike I make sure there's nobody else around when I am communicating with Maricar.  I have made sure the environment's okay.  And if I want to inform her about something I take my right hand and I will go back and tactile sign it to her, and she will know like where we are, what the view is like.  I will be able to tell her what is happening.  One time just for example, I don't know what I'm telling her.  I just see things and I have to tell her.  One time she told me she wanted to go to the chocolate bar for her birthday and I said the Chocolate Bar?  Where is that?  I said where is that?  She said it's downtown.  Remember you explained that to me when we were riding the bicycle through the East Village?  It's over there.  I said oh my goodness, so a lot of these things I don't remember telling her.  I will see something, oh a chocolate bar while I'm riding a bicycle.  Yeah.

>>MARICAR MARQUEZ:  Also remember we were biking, the 40 miles in New York City and we were on this long ride and I had to go to the bathroom and you know of course I'm in the back seat of the tandem bicycle and I'm like how do I tell him I had to go to the bathroom?  I used a communication tool called haptics and I drew on his back the letter T and I remember he kind of popped up a little bit and he was able to reach back to me and I told him I was able to go to the bathroom.  So we use haptics as well as tactile sign language while riding to be able to communicate.  We've also established a few different cues with one another.  It's a little bit of a shortcut to be able to communicate on the bike.

>>DON HORVATH:  Not only do we tandem bike but we tandem with a kayak because.  That's harder because you are a distance away.  You don't want the boat to tip over.  We've capsized one time in the Manhasset Bay but that wasn't us, no!  We even had the dog with us.

>>DOUG:  Sure Don blame it on the boat.

>>DON HORVATH:  She looked back at me and smiled because knee knew we were going over.  We had Dixie in the boat, Dixie is climbing up my head, she had a life preserver and we are in the middle of the bay and we had to fly down a boat and I had to go get all the stuff in that tandem boat.  We have a better one than that.  We tap the side of the boat so she knows she needs to stop rowing or whatever you know?  And I tell her stop.  I will tap the side and then another two taps she will go back to doing that.  So, to actually rowing.  So Weaver done that with the kayak and the canoe.  And those were fun times.

>>DOUG:  So we're kind of at time here.  I hope we can just go a few minutes longer.  This is to the interpreters and the captioner on the call here.  There are just a few more things I want to get to.  Shoot me a message if you have to go now.  But we have a question for Don.  Do you ever hear someone voice interpreting for Maricar and feel like they're missing something she's communicating because you are so close to Maricar and do you ever correct them because you know what she's saying better than the voice interpreter in certain cases?

>>DON HORVATH:  I don't correct.  I will maybe like in a discussion I will add to that if there's a discussion after that or if I can chime in, raise my happened and say oh this is what happened.  But I never want to correct an interpreter.  I have been in that role and I just feel like you know there's a better way, if there's a better way to feed the information that's nicer than to say no you are wrong, let me explain this better, no.

>>DOUG:  So with the last couple minutes here of this conversation, back to, you know, that was really informative how you described how you go to see a movie in the case of Star Wars having the figurines to act out the battle scenes, can you tell us what it's like to be out on a double date with another couple or out with other families, when you are with other people, how you negotiate that?

>>MARICAR MARQUEZ:  Well, when it's with family, everybody within my family, they have different skill levels.  Don is the most skilled out of everybody but I also have a DeafBlind sister they can communicate with.  So some members of my family maybe just finger spell, maybe they can sign or we have to use other modes of communication where we text back and forth to communicate or we use gesturing so we make it work.

>>DOUG:  Are there times where maybe if you are out with another couple that doesn't sign like how you might navigate that situation?

>>DON HORVATH:  This would be similar to what is happening today.  It would be you know, me interpreting what they are saying or trying to get involved, you know.  It's different for them of course and it's really you know, I mean I do this all the time so it's not, she's not going to get everything that's involved in that communication and I've informed them.  I'm going to miss stuff because they're not going to know to turn take.  I don't want to say remember you have to slow down and turn take.  I want the conversation to happen naturally because I don't want people put off and not wanting to go out with us.  It's happened.  It's like I just feel like the guy's talking because her voice is my voice.  It sounds like maybe I'm dominating the conversation, but I'm interpreting for her, you know?  So it's not like right now where we have female interpreters interpreting for Maricar and it feels more natural for the people watching and that.  So if I go out with Maricar and the other couple doesn't know sign language it's just, it makes it hard on me, I will be interpreting the whole conversation.

>>DOUG:  A question for Maricar.  Are there ever situations where you are out with say another couple or other people that where it's frustrating for you or anything like that?

>>MARICAR MARQUEZ:  I guess, but it's normal.  For anybody who is DeafBlind you experience frustrations.  You miss out on some information.  Like I had mentioned earlier, I grew up sighted and over the years I lost my vision and I really started to miss out on some of that environmental information or nuances in a conversation.  But you have to adapt.  You go from being a visual person that you use our visual senses to now you focus on tactile information and you are depending upon somebody giving you that environmental information.

And you know, so you have to be patient.  Sometimes you can't get all the information and you have to really kind of make that judgment call, you know, if the person that you are depending on maybe they can't provide you all that information because it's too much, that's fine and you know you have to look at both perspectives.

>>DOUG:  That's well put.  And for your final question here today, it's kind of related to that.  From just speaking, a question to you two as a couple, you know I think obviously like any couple you spend a lot of time with anyone and you might, there might be times where you're frustrated or upset with each other.  But obviously for you two to communicate you need to be touching each other.  How do you navigate you know just quite frankly, how do you navigate an argument?  I you mean curious from that perspective, people who aren't familiar with a form of communication where you have to touch each other.

>>MARICAR MARQUEZ:  We're like any other couple.  We communicate, you can feel that body language through the hand.  So if somebody is frustrated or angry I can feel it.  I know it.  And I also know Don.  I know him.  I know his movements.  I know the pace of his movements.  And a lot of times the pace of his signing really matches his tone or his feelings and emotions at that moment.

>>DOUG:  And before we conclude today Don is there anything you would like to add to that.

>>DON HORVATH:  Yeah I just scream.  I get so mad I scream.  I yell.  [laughing] So I think it's normal you know if you are angry, if you have an argument, you have feelings, they're going to come out.  But you know, I think with everything at the end of the day, you know, I think everybody has those situations in a marriage and then you know, you find ways to, you know, try to work things out.  I mean, and you know, I think, I don't know.  Anything else to say?  

The question is did I have any perspective on you know, I think sometimes it's best to, you know because we're always attached to each other, sometimes it's best to have your own life and that's I think for every person.  You need to have what you like, what you're interested in.  It doesn't always have to involve the other person.  So I think that's the important piece to take away, you know, dependency, is one thing.  But learning how to access the community through volunteers, SSPs and finding other ways to do things that you can bring back to the relationship and say oh this is what I did today.  Oh wow that's cool!  I did that.  She's not interested in concerts.  She's gone to a few but you know, it's not as interesting for her and for me, I mean I prefer to go myself and enjoy rather than interpret something that I enjoy, you know?  So I think that's important that each of us has our own interests.  We have common interests and we have separate interests.

>>DOUG:  Well that's so well put.  That's a great place to end today.  I would love to keep talk with you both but we're at time here.  Thank you so much for joining us today.  I hope we can all chat again soon.  Thank you for tuning in to feeling through life.  We will be doing these every Friday and perhaps at some other episodes in addition to those Friday episodes.  So keep an eye out for future episodes.  Thank you so much to Maricar Marquez and Don Horvath for giving us a view into your life as a married couple.  Thank you so much to everyone for tuning in and we will see you all next time.  Bye.

HKS Virtual "Telethon"

DOUG:  Hello, everyone.  Welcome to the Helen Keller Services virtual telethon.  Today is Giving Tuesday now.  I think before we start anything else I want to explain what Giving Tuesday Now is, it is an annual day that happens at the end ever November or early December.  It's a day to give to nonprofits and charities and given the recent happenings with COVID there has been a much greater need to fund raise now hence Giving Tuesday being pushed up to now.  We went with a virtual telethon theme here.  I know I grew up watching those PBS telethons where the phone bank was in the back, and as you can see there's no phone bank back here, we do have some amazing interpreters on this call to make this accessible, a captioner.  If you want captions that's a video setting on Facebook.  We have live captioning happening so if you want to turn that video setting on, you can use that.  If you don't want them and you want to turn them off that's fine as well.  But we are raising money today for Helen Keller Services.  I think first and foremost I want to address that there are so many places that you can give money today.  And a lot of really obviously great causes.  But today what we're going to do is over the next few hours we're going to talk to the people that really make up Helen Keller Services, both the staff and the consumers that benefit from the services and hopefully exemplifying why you should give to Helen Keller Services and why their services are ones that provide essential services for a lot of people who benefit greatly from them and quite frankly we need your help.  Things have been tough for everyone during this time and especially for organizations like our organization that really need your help now.  So without further adieu, I would also like to introduce myself real quickly.  For those of you that don't know me my name is Doug Roland.  I've had the distinct pleasure of work along side Helen Keller in a few different situations.  First The Feeling Through Experience with the first DeafBlind actor.  Now support in a media director capacity and I am honored to be able to host this virtual telethon today.  We're going to be talking to a lot of different people today.  We got a little bit behind because of technical difficulties so what I'm going to do is jump right into our first discussion here.  I want to bring them into the room in just a moment and we're going to be introducing everyone and hopping right into the discussion so just a moment.  All right.  Everyone's joining our room right now.  Hello Antoinette.

ANTOINETTE RICHARDS:  Hello.  Hello Minjiy and hi Alona.  Sorry for the delay.  Invariably we test and when it comes time to go live we had a couple of snafus but we're live now on the Helen Keller Services virtual telethon.  For those joining in today I want to make it clear that we are raising money and there is conveniently a donate button attached to the live stream.  So if you can see over above the chat room there's a donate button.  It's very easy to donate.  You just click that button.  You will have that option to donate through PayPal, credit card and any donation does help whether it's one dollar or a thousand dollars every dollar that you donate goes a long way.  So we will be redirecting to you the donate button to you over the course of this virtual telethon but without further adieu I'd like to just go around and if each one of you that just joined the room could introduce yourself tell me who you are and how you are connected to Helen Keller Services and we'll hop do a discussion here.

ALONA MARTIN:  Hi my name is Alona and my son is a student at Helen Keller.  His name is James and this is his dad James.  And James was born blind and with other endocrine insufficiencies.  And he's been getting services at Helen Keller since early intervention.  He will be graduating in June to go to kindergarten but we're really going to miss our Helen Keller family.

ANTOINETTE RICHARDS:  I am Antoinette Richards the school's social worker at Helen Keller Services.  We have been there for 30 years.  We have a preschool program where we service children throughout the tri‑state area, Brooklyn, queens, Manhattan, the Bronx, we service them, we offer each and every day teachers for the visually impaired, occupational therapy, physical therapy, a myriad of services and we offer social work services, parent counseling, music therapy for our kids.  We always believe that we're partners with our families working together that our kids can reach maximum potential.  Whatever it is wherever they are we start there.  Our kids have IEPs, we go through the Department of Education which funds services for our children to receive but like a lot of schools there's so many things that we add.  We have music therapy for our kids, sensory therapy for kids.  It is wonderful to see families like James and we have many families in our school that we've been able to not just affect in the classroom but also community services that are beneficial to them. 

DOUG:  That's great.

MINJI KWON:  I am one of four teachers at Helen Keller preschool.  We service children with 8 children per classroom along with TAs.  My focus is with children with severe multiple disabilities including visual impairment.

DOUG:  Thank you.  Just to hop into the heart of this and a question for Alona.  As Minjiy articulated, what Helen Keller Services for the blind has provided for James and the experience of the services that they provide.

ALONA MARTIN:  For James it was important for me to let them be sociable to other children, him being know blind and him going into the public and hearing voices, he would hear them interacting but he wasn't sure what was going on.  We just went him to learn how to be independent and how to get around as a blind child.  He's really developing those skills at Helen Keller.  He gets speech therapy, occupational therapy.  He gets mobility, PT, basically everything that he would need they provide for him.  And I just, I'm really thankful for them.  He's come a long way.

DOUG:  That's amazing.  This is an open question for all but obviously with recent occurrences can COVID things have changed a little bit but I understand you are still finding ways to provide services even during this time is that correct.

ANTOINETTE RICHARDS:  Yes.  Our school, the physical building is closed but our school is active.  And I can say as we say parents as partners again, this has come in full circle, because the communication, the interaction that's needed, families like the Martins, they have really come and James participates in circle as well as other families and teachers like Minjiy and our therapist finding new ways our kids can reach their therapy goals.

DOUG:  I think it's an important thing to stress, obviously it's a tough time on any organization providing services but it's amazing how Helen Keller Services and its divisions in Helen Keller Services for the Blind and Helen Keller National Center have still been able to provide services and connect with families like Alona and James IV and James V and still be able to provide those services and obviously this is a time where just because we're not able to connect in person that doesn't mean these services aren't still really essential and valuable so I'm really glad to hear that you are able to continue to do that.  Maybe if you could tell me more about what a class might look like.  Minjiy I know when we got a chance to talk the other day you were telling us about circle time.  Maybe you can describe what that's like.

MINJI KWON:  We started circle time because we wanted the children to have a sense of [inaudible] in their homes, and you know our children because of their disabilities they are tactile learners, auditory learnings, kinesthetic learners and to provide all of this we need the help of the parents to guide them through whatever we're trying to do on line.  It's basically you know the same things that we have been doing that is familiar for the children while incorporating the parents and different aspects that we want them to incorporate into the circle time and you know the parents have been so cooperative and helpful and I hope that this has been also an opportunity for the parents to learn about what's going on, and the, you know, during a regular school setting and learning different positioning and different ways of handling the children's hands and incorporating different activities into their daily lives that are beneficial for them through therapies and such.

DOUG:  And just I want to pause real quick to thank those who have already started to donate to our virtual telethon today.  Thank you so such Alona [inaudible] and Angela, and Matthew Ravey, Sue Ruzenski and thank you so much for your donations so far.  For those ever you who tune in there's a donate button, just click that and use PayPal or any credit card that you have.  Any amount helps.  If you don't have the ability to donate today but want to help out please refer people to join us on this live stream.  We will be here for the next, two and a half hours or so, and please help other people join in, learn more about Helen Keller Services and the essential services they provide and also have an opportunity to participate in the fund raising.  So with the last [inaudible] here an open question for each of you, for those tuning in and watching if you could take a moment and express whatever you would like to tell people who maybe don't know anything about Helen Keller Services just what the organization means to you.  Obviously on the consumer side for Alona, what it means to you and your family and obviously James and on the staff side I guess maybe the best part of the work and what you do.  So let's go around in the same order again starting with Alona and James if you could let us know that.

ALONA MARTIN:  I think that the service, it basically offers hope for us.  It just gave us a different view on James' future.  Like we can actually see him getting around by himself, and you know, going places on his own.  So it's a lot of hope.  What do you think?

>>:  It was basically help, it helped us with anything we needed.  Gave us the opportunity to have the help that we needed.

DOUG:  Just to comment on that, I imagine that you know, maybe without that kind of support you might be left just wondering about how to do really basic things around education and things like that.  It kind of fills in all the dots.

ALONA MARTIN:  It gave us a better opportunity to get to know our son in different ways to learn with him not just teach him but to actually learn things with him.

DOUG:  That's really great.  Thank you.  Antoinette.

ANTOINETTE RICHARDS:  As I said when I started I've worked at Helen Keller for quite some time and I've enjoyed my work there.  Not only working with the parents and the kids every day, it's seeing the results that happen.  You know you stay at a place because you believe it gives good results.  I've worked in various parts of Helen Keller from adults to children's services and every part, everywhere from rehab to the youngest to James starting when he was about a year old and to see the progress now of our kids about to enter kindergarten and transition to that way of life and also his parents just coming together and supporting and also learning in the classroom learning how to be advocates that's the greatest thing is as a social worker I can encourage our parents to be the greatest advocates for their kids, also connecting with a great staff.  We have our principal to our teachers and our therapists, everyone working together even as an agency we're connected with our rehab staff, our low vision and different [inaudible] work together for the benefit of our children and also our adult clients.  It's been a comfortable fit for me.  We face challenges every day but I really enjoy where I work and what I do because I see results like the family that is sitting with us right now.

DOUG:  That's really beautifully put thank you.  And Minjiy.

MINJI KWON:  I real appreciate and love our Helen Keller family that we have.  We are constantly collaborating to you know, better the experience of the family and the child as they're experiencing through difficult times and different transitions in their lives, even through you know virtual meetings nowadays, we have been it trying to collaborate and, as to how to make all of this easier for the families and easier for the children.  And I think the greatest part of being in the Helen Keller is celebrating the small accomplishments for a typically developing child walking and talking, all those things may come easy but a lot of what we do in collaboration with the therapists and teachers comes with a very, very small accomplishment and it may take a really long time but those accomplishments are a huge celebration for us so watching that has been really, really gratifying.

DOUG:  Thank you so much Minjiy for sharing that and thank you to all of you for joining today.  It's great for people tuning in to put faces to the name that is Helen Keller Services and hear personal accounts from both the staff and consumer side of what that organization means and the essential services that they provide.  So thank you so much for joining us today.  James IV and James V thank you for joining us as well.  So nice to meet you James.  Thank you for joining us and I hope I get to chat with you all again sometime.

ANTOINETTE RICHARDS:  Thanks for supporting our agency.

DOUG:  We'll be moving on to another group shortly.  And while we're getting situated here I would like to thank some more people who have been donating so let me just pull that up for a moment here.  Look at this.  Thank you, everyone so far, you have been very generous.  Tracy Lee thank you so much for your donation, Nikia Wood, Chloe Blake, and Chanally, FitzPatrick thank you so much, we appreciate your fund raising so far in the fund raising portion today, that is ultimately the purpose that we're joining here for.  Again if you are just tuning in, this is Helen Keller Services virtual telethon as part of Giving Tuesday Now.  We just heard from an amazing group part of the children's center at Helen Keller Services for the Blind.  In just a few moments we'll be speaking with the working age adults at Helen Keller Services for the Blind, some consumers and staff there as well.  And again if you are tuning in, please consider donating.  There's a donate button connected to the live stream.  That's one of the nice things about Facebook they make it easy to donate.  You just click that button.  You have the option to use PayPal or a credit card.  Every dollar you donate gives a really long way.  And for those that might have missed the intro, Giving Tuesday is usually toward the end of the year which has been bumped up to today because of everything that's happened with COVID and the needs that that has created.  And Helen Keller Services, like a lot of nonprofits out there certainly has additional financial needs in the wake of COVID and every dollar you donate really supports that.  And what's really great about Helen Keller Services is that they have been able to continue services even during this time of COVID so kudos to the entire organization and everybody that makes it up for working quickly to move services to a virtual space and still being able to support consumers.  I'm going to start bringing our next group into the room here.  And as we get situated here, hello Marcia.

MARCIA:  Hi Doug!

DOUG:  And we have Christine joining us as well and Joe is joining us here in a moment.  Welcome to the virtual telethon.  Hello Joe.  I would like to take a quick moment to wish Joe a happy birthday as well and what's nice about what Joe decided to [inaudible] fundraiser today for Helen Keller Services so thank you for contributing to the fund raising efforts today and making your birthday about that.  So thank you so much and a very happy birthday to you.  I am sure you're not a day over 22.

JOE DINERO:  How do you know that?

DOUG:  I've got a good eye I guess.  So why don't we start off by quickly going around, each of you give a quick introduction of yourselves.  Why don't we start with Marcia, Phillip, Christine and Joe in that order and we'll give a quick introduction.

MARCIA:  I'm Marcia Hamilton, I am a vocational instructor at Helen Keller Services for the Blind.

PHILIP:  My name is Phillip Duncan and I'm a client for Helen Keller.

CHRISTINE GERACE:  I am Christine, a former client ever Helen Keller Services for the Blind in [inaudible] New York.

JOE DINERO:  And I am Joe Dinero an assistive instructor for Helen Keller Services for the blind.

DOUG:  I want to make mention that I had the distinct pleasure of speaking with Phillip and Marcia this past Friday as part of the Feeling Through Live streams, I encourage all of you watching to continue to learn more about the various facets of Helen Keller Services, it's a great way to acquaint yourselves personally with the organization like we're doing today.

Just to hop into the meat of this conversation maybe we could take turns talking about you know whether again you are coming from the staff side or the consumer side, just how you've either directly benefited from the services and what Helen Keller Services for the Blind means to you as a consumer or from the staff side what you find to be the best or most rewarding part of the work you do.  Do you want to start Marcia.

MARCIA:  Sure.  What I love about Helen Keller Services for the Blind is the holistic approach to ensuring that an individual will get all the tools they need to get out there and live a full, rewarding and fulfilling lives.  The way the program is structured from the beginning they start preparing you first of all getting you oriented in your home environment, moving from there to work and providing so much support.  So there's always someone there to guide you on this journey.  And we have a former student, we're still keeping in touch with our students after they leave.  It's like one big family and that's what I find so rewarding about this agency.

DOUG:  Just to piggy back, I love the mention of the holistic approach.  One of the things I was really enlightened by in our last conversation on Friday was how you walked through each step of those services which we can get to in a moment on this call but it's amazing to address not just one aspect but really be able to address every aspect of life regardless of what stage or where someone is at personally so thanks for sharing that.  And Phillip what has been most impactful for you as a consumer of Helen Keller Services for the blind.

PHILIP:  For me I would say the most impactful thing for me was especially with how my situation was with me losing my vision basically overnight, waking up and not being able to see and after all the training and rehab that I had to do and then coming out and being introduced to Helen Keller I just thought it was great to know that they were coming in the home and just the different steps that they were taking to get me to this point, it was just great.  Everything was structured perfectly from starting my vision rehab in the home and learning the different techniques with.  Walking cane and from there then transitioning into coming into the company and the agency.  And now starting to attend some of these classes.  And the first class was the adjustment to blindness class which was great because you have a variety of individuals that all lost their vision in different ways.  I mean, and we were all getting adjusted in some ways.  So for me I lost my vision due to a brain tumor but we also had people in there that lost vision due to glaucoma or they're in the process of losing it slowly.  And then you also have the people that are kind of like I guess further along than me and maybe they lost their vision and it's been many years and they're able to give a little more feedback on how they're managing and getting by day to day.

DOUG:  Thanks Phillip.  Christine.

CHRISTINE GERACE:  I have been now on a 30 year journey of slowly losing my sight.  So I came to Helen Keller initially to learn basically relearn how to use the computer because someone who is losing their sight slowly pretty much hangs on to what they have that they could use obviously visually and not using their auditory skills so I was a visual screen user as far as my computer skills were and had no idea how to acclimate to that.  So I came to Helen Keller and I started attending assistive technology classes and I basically learned how to use JAWS, which is a speaking software program that's in conjunction with an enlargement feature that's also in addition to the program itself.  And now I'm able to use the internet, read my email as I had before just using talking software and also just to mention the organization really taps into finding these amazing people that not only are able to educate the blind or visually impaired in technology, different tools that are available to us, but also doing it in a way to making us feel that we're not just numbers, you know.  We really established a lot of or I have established a lot of great relationships with my occupational mobility instructor teaching me how to use a cane when I was no longer able to be mobile on my own independently without fear of tripping into or walking into something.  So it's really the personalities also that go hand in hand with the education that these wonderful people in this organization are there for people that in our a scary situation.  Whether you lose your sight overnight like Phillip said or you lose it over time.  There are different stages, different emotional aspects to adjusting and acclimating to your life as it has changed.  So it's a really great organization and I'm just happy that I was able to be a part of it and it's put me back in the game basically as far as working and being able to take back my life and be independent again.

DOUG:  Thank you for sharing.  That was well put.  I want to touch on the personal aspect of it that you are sharing which is so resonant.  I think one of the reasons we wanted to do this virtual telethon today, it's one thing to ask for financial support from people but I think when you have so many amazing people that make up an organization both on the staff side and the consumer side it would feel like a wasted opportunity to not have a platform to be able to connect directly with people who are tuning in today and to give them a much more intimate understanding of who the organization is and who the people are that make it up.  On that note just to reiterate here this is a fundraiser as well and if you are watching and able to donate, there's a donate button attached to the live stream.  You can click there and use PayPal or a credit card.  If you have either already donated or don't have the means to donate yourself but want to support please share this live stream with other people.  You can share it on Facebook like you would with any other post.  You can reach out directly to people and share the link with them and tell them to tune in.  We'll be here until 3:00 p.m. eastern time.  We have a good ways to go so please share this stream with other people so they get an opportunity to hear directly from the people that make up Helen Keller Services.  With that said, Joe, what's the best part of what you do with the organization.

JOE DINERO:  I come to this, I was a consumer with Helen Keller prior to my employment with them and through that, I you know got an opportunity with Helen Keller to work for the company and it was a long journey for me to find employment and it's a long journey a lot of times for people that are visually impaired to find employment.  So my approach when I look at it you know, I'm teaching students the skills that they're going to need to get out into the workforce and I approach that with the perspective of I don't want any of my students to be thinking about that when they're in a job interview.  I want them to be confident in that job interview that I can do this job.  Christine will probably tell you I talked to her when she first came in, I told her I would make her a rock star when she was done and that she would be ready to be employed and that's how I approach it.  I am visually impaired myself so I, you know, I look at myself as more than an instructor.  I understand sometimes students come in and they're not having a great day.  Sometimes it's not an hour and a half of technology training, it's 15 minutes of just somebody talking about what's going on with themselves and being an ear for them to listen so that they can get in the right, in a better head space so that they can learn what they need to do to get out there and do what they want to do.  So it's rewarding when somebody like Christine gets back into the workforce or you know, being able to, sometimes it's not about the training.  It's about turning somebody's frown upside down and getting them in the right head space again on a particular day.  There's a lot of things we do that's outside of the scope of what we're normally doing.

DOUG:  I love that.  That's a great example of going above and beyond because of that real care for what you do on both sides and obviously the passion for, in what Christine and Phillip shared about what they've gotten from their experience at HKSB.  And you know just with the last kind of minute or two we have together, maybe Marcia if you could give a quick walk through of what that holistic approach looks like, and kind of like we talked about the last time, just a quick overview.  I know we don't have too much time to go into details but what that holistic approach looks like in more detail.

MARCIA:  We start with vision rehab and Phillip, you have teaching in the home where you get orientation and mobility.  After that there's a adjustment to blindness.  Then we have Joe with ATC where they start learning how to use assistive devices.  From there they move to Foundations, a program of self‑and career exploration and from there we move to TEAM which is our work readiness program which is focusing on getting them back out to go to work.  Of course we have an awesome placement team which is also part of [inaudible] ensure that the students get placed not just making sure they have skills but we care about them as individuals also.

DOUG:  That's beautifully put.  Thank you all.  For the final question Joe, what are you doing for the rest of your birthday?

JOE DINERO:  I'm going to enjoy the sun.  I'm going to enjoy the great outdoors and get out with my guide dog and do a little walk and maybe enjoy some sun, just relaxing outside.

DOUG:  If one thing this time has taught us is to really appreciate the simple things again so that sounds like a perfect way to celebrate your birthday.  Thank you all for joining today.  I really appreciated everything you had to say and I hope to get to speak with you all in more detail at some other point.  Thank you so much for joining us today.

AI really appreciate it.

PHILIP:  Thank you.

DOUG:  We're going to get situated here for our next guests in just a moment but as we're signing off and signing in, another reminder today for this Helen Keller Services, all you have to do is click that donate button.  It makes it very easy.  Any dollar donated is a dollar that will be well used by Helen Keller Services.  Whether it's one dollar or a thousand dollars whatever you can donate it the will be really appreciated.  For those joining in, Giving Tuesday Now is in direct response to the challenges that COVID has created among any number of organizations, Helen Keller Services included and there really is a need, a financial need now more than ever and Helen Keller Services very fortunately is still able to provide a lot of these essential services that they normally provide.  But we really need your help.  If you are able to give again, any amount helps and we really appreciate it.  So without further adieu, our next guests here, Emma riley and we're getting situated here to speak with Emma.  And let's see, hello!  Well, welcome Emma.  We're so happy to have you today.  Just to jump right into it, could you introduce yourself and just let us know how you are connected to Helen Keller National Center and Helen Keller Services.

EMMA RILEY:  Of course.  My name is Emma riley.  I am a DeafBlind individual.  I'm, I have Usher's Syndrome.  I am completely deaf and I have about 10 degrees of vision left.  I was recently a client at Helen Keller National Center to receive training.  I also train individuals so I am connected on both fronts.

DOUG:  On the student side of things tell me what are some of the most valuable things you got from your experience with the Helen Keller National Center.

EMMA RILEY:  I was in Helen Keller National Center for a brief period, only two weeks in December so I did not get the full client experience of Helen Keller National Center.  I went to kind of have them be a guide for me.  You know, people, I went as a guidance counselor.  People that are DeafBlind tend to live very isolated lives you know.  And I am starting to lose more vision myself and I want to continue to be able to work as a guidance counselor and I want to continue to take care of my son as well as when I have vision.  So I went there mainly to learn how to use technology, and to get some braille training because I was there specifically to be able to continue to do the functions of my job.

DOUG:  Can you tell us a little bit more about your professional life?

EMMA RILEY:  So I work for the Kentucky Department of Education.  My current focus is transition planning for DeafBlind consumers.  I've worked for them for four years now.  But now that my vision is changing, my equipment also needs to change so I need to continue what I have been doing just using some different equipment.

DOUG:  Can you tell me more about what it is you do on a day‑to‑day basis there?

EMMA RILEY:  So obviously, now with the situation with Coronavirus and COVID‑19 I am working from home.  But before COVID‑19, I was, I had two office that I was going between.  In my area I have limited access to transportation.  I do have Uber and Uber Pool.  My bosses were understanding to my needs.  When I was [inaudible] I had all the accommodations that I require.

DOUG:  I see.  For those watching right now, can you just, what would you like to say directly to them as far as, you know, what it is that Helen Keller Services provides that's so important and by extension, why donating to the organization really goes a long way?

EMMA RILEY:  I think Helen Keller Services and Helen Keller National Center are both really unique organizations because they provide services that encompass the whole person.  So they work with people who are deaf who rely on vision.  They work with people who are blind who rely on hearing and they work with people who are both, who need [inaudible] and they're the only organization in the world that does that.  So people with dual sensory loss or deaf and blind don't really have any place else to go.  So they really help people that are DeafBlind connect with the world in a way they wouldn't be able to otherwise so I think that's what makes Helen Keller so amazing.

DOUG:  That's really well put.  I think that's a good time to note that for those tuning in who may not be directly connected with or familiar with the DeafBlind community I think you might be surprised to know how large that community is you know, depending on you know, what numbers you reference, there's as many as a million and a half people in this country alone who are DeafBlind and I think sometimes that number actually surprises some people who maybe didn't have a lot of information about the community prior to hearing that but I think it reiterates how many people out there that really benefit from these kind of services and how essential they are and really particularly during this time of COVID where a community that largely and often relies on touch is in a situation where that's really challenging in a time where touch is either prohibited or really avoided at this moment.  So just to make that connection of why Helen Keller Services and why the essential nature of the services that they continue to provide during this time and we really need your support in order to continue to provide those services and provide in the ways that Helen Keller Services is really able to do at that high level.  So if you are able to donate today, click the are button attached to the live stream.  Any amount you can donate really helps and if you can share this live stream on your page, share it directly with people who want to tune in and hear about the organization and people that make it up please do that as well.  So with that said Emma, thank you so much for chatting today.  I know we had a short window to talk but everything you said was really valued.  I really appreciate it.

EMMA RILEY:  Thank you.

DOUG:  So moving on here, we're actually coming up, we have Kim Zimmer the CEO of Helen Keller Services so I'm going to bring her into the room right now.  Hello Kim.  Thank you for joining us today.  We're about an hour into our virtual telethon here.  It's been a real pleasure to talk to a lot of the people that make up the organization both on the staff side and on the consumer side and now I'm speaking to you who is the CEO of Helen Keller Services.  I think it's a great opportunity to zoom out a little bit.  For starters if you can give us a bird's eye view of the organization.  I think for those out there help explain the connection between Helen Keller Services, Helen Keller National Center and Helen Keller Services for the Blind.

KIM ZIMMER:  Sure absolutely.  First I want to say hello to everybody tuned in and with us today and thank you also for all of the focus who are and have experienced the services through our organization and who have offered to share their experiences.  It really is special to us and it's clear from what Phillip described you know, the relationship we have with him and Marcia did a great job of talking about how important relationships are and the connectedness and what that means.  So anyway I thought that was really neat.  So you know, Helen Keller Services is a sort of an [inaudible] organization and within it, there are two service divisions.  One of those divisions is Helen Keller National Center.  And that organization or that piece of Helen Keller Services is specific to people who are DeafBlind.  And that is a national division.  We provide services across the United States.  The other half of it is Helen Keller Services for the Blind.  And that is regional to the New York City area specific to Brooklyn in particular and Long Island but we serve people all across the region.  So we've been around for a very long time.  About 25 years so people who receive services from us know us well and I felt really good when Phillip said you know his mom referred him to us and he knew after that where to go.  Because that's what we're all about.  We're part of the community.  Our mission really is to serve people and help them achieve independence and their goals, the ones that are important to them.  You know we don't empower people.  We assist them in empowering themselves.  And so it's really important to us.  And there you know, it's what we do.  We don't do it by ourselves.  We do it in collaboration with the people we serve.

DOUG:  That makes me think of what Joe was just saying his mind set in preparing the students.  It's about going in there and knowing that you are right for the job and that's what's most important.  It's about being so comfortable and capable with everything that you are able to do that that's the focus.  It's that self‑sufficiency and capability, it's creating an organization that fosters that environment and cultivating that.

KIM ZIMMER:  I didn't take Facebook off.  Can you still hear that behind me?

DOUG:  I can't really hear it myself but you can also always mute it.  I'm not getting it so much but if you go to the screen you can mute it but thanks for checking on that.

KIM ZIMMER:  Just wanted to make sure.

DOUG:  Absolutely.  One thing it's important to touch on too is obviously the nature of Giving Tuesday Now.  Giving Tuesday is something that happens every year but Giving Tuesday is something specifically tied to what's happening with COVID and the specific needs happening now.  Maybe if we can speak on both how Helen Keller Services is able to provide services at the time and also the current climate.

KIM ZIMMER:  We have an incredibly innovative team.  We are in unchartered waters.  It's incredibly challenging.  And so you know, we can't meet every service direct with the people we serve but we've done I think a really great job of meeting folks virtually.  We have adapted to meet folks' needs via technology.  And I think we've done it really.  Well.  We have, you know, much of what we receive in funding, though, you know, hadn't quite caught up.  Some of it has.  But not all of it.  We don't know what that means yet completely.  And so, you know, we need some support.  You know, we don't have the events that we thought we might have to provide some of that.  And you know, so we're still looking at challenges.  We don't know when we might come back to that direct one‑on‑one client interaction.  But you know, we'll continue to move forward.  We're not going to stop meeting the needs of the people with whom we provide services.  But we're relying on the folks who are with us today.  I mean that really is so important.  And we know that the people we're working with really do rely on and look forward to our continued adaptation.  And you know, we look forward to even after this virus has passed and we all look forward to that.  How we continue to provide these services for people who might not have, you know, maybe we're looking forward to even growing the region so that people who can't get in as easily now might have opportunities.  So all of that we're thinking about.  But there's not the funding right now to reach that, those folks that need our help.

DOUG:  You touch on two really great points there.  One, really just it's really impressive for me to watch from an outside vantage point the services Helen Keller Services continue to provide during this time.  Certainly known would ask for COVID and everything that's happened.  The wake of it taking on that mentality of how do we approach this so we cannot only continue to provide services but use this as an opportunity to address elements where we can better ourselves as an organization and find ways to benefit from it down the line as you so well put.  And it's a really great time to tell folks who are watching now Kim eloquently put the need for fund raising.  We've made it easy on the live stream.  If you are watching there's a donate button connected directly to the live stream.  You just connect to that, pay through PayPal or credit card and really any amount helps.  One thing about doing a live stream like this is any number of people can join in and if everyone's able to donate whatever it is that they're able to at the moment the collective sum total goes a long way.

KIM ZIMMER:  That's absolutely true.  Every donation helps.  It allows us to continue what we're able to do and introduce new people into, I mean we provide services to people from preschool age all the way up into however age we can get.  I mean senior citizens, et cetera.  We don't deny anybody services.  And you know we're not a fee for service organization.  So we really do rely on contributions and donations from individual donors.  And every single donation matters.  So you're absolutely right.  We appreciate everything.

DOUG:  Kim, thank you so much for joining us today and sharing everything that you just did.  I think it's a helpful way to connect the dots here and it's a way to inform people watching and coming to this and meeting Helen Keller Services and its division for the first time and learning a little bit more directly from the CEO who the organization is and what they do so thank you so much for joining us today.

KIM ZIMMER:  Thanks Doug and thanks to everybody tuning in and we hope that we'll continue to build on this and the relationship we have with the folks who are participating via Facebook today with us.

DOUG:  Absolutely.  Well thanks Kim.  Bye.

KIM ZIMMER:  Bye.

DOUG:  All right.  So that was Kim the CEO of Helen Keller Services giving an overview and demonstrating the importance of the fund raising effort we're involved in today and illustrating where your donations go.  I think this is a good time to take a moment and call out some new donations here.  Thank you so much Chris Woodfill for your donation.  Cindy Witkow thank you so much for participating in our virtual fundraiser her.  Nickie Fitzpatrick and Travon and Vin Fitzpatrick, thank you to all Fitzpatricks.  Thank you so much, Wendy thank you so much, Ruth Chris, really happy to see new names popping up here in the donation section.  So thank you for that.  I'm going to bring in our next guest here.  Doc Francis.  Let's get him in the room and all situated here.  Hello!  Hello Doc Francis.  This is Doug Roland speaking.  Doc, I'm so glad you can join us today.  This is my first time meeting you, so maybe if you could just give me an introduction of who you are and your connection to Helen Keller Services. 

DOC FRANCIS:  Of course.  So, when I became blind, you know it was like 9/11 and I was trying to get through the situation so I was just navigating through the situation as a blind person is how I became connected to Helen Keller Services. 

DOUG:  We haven't had an opportunity to speak yet so were you a student there?  What was your direct connection to the organization?

DOC FRANCIS:  So, I was a student at Helen Keller and I also work as a pastor so I have a DeafBlind congregation.  I am a DeafBlind pastor with a congregation as well.  And through Helen Keller I was able to learn a lot.  You know, I had a lot of time for self‑reflection, I learned a lot about who I am and my condition.  I am DeafBlind by Usher Syndrome.  I didn't know that I had it so I learned to drive at first and when I became older my doctor told me they had something called Usher Syndrome but I didn't know what that entailed.  My doctor just told me to go ahead and live my life normally and I noticed as I got older I was having more and more challenges.  I was having a lot of close calls when it came to visual things and I noticed my peripheral vision was getting worse.  My wife was helping me a lot but it was very frustrating.  As I got older my vision got worse and worse.  And I'm in California as well, so there are some services here but you know having faith has helped me, too.  And in California I met Kathy Kersher and after speaking to her she told me about Helen Keller National Center.  I decided to go there for training and after I went there my life really changed.  I learned a lot about how to navigate through the world as a blind person.  I got mobility training and cooking, I gained my freedom back.  I was able to communicate with people through tactile sign language.  I was there initially for 12 months which really wasn't enough time.  I came back home after my training at Helen Keller, got to teach other people about what I learned and my wife and I worked together to educate people in my life and through church I was able to educate people and the congregation.  I really appreciate everything Helen Keller National Center was able to do for me.

DOUG:  Thank you.  Thank you for sharing.  I am interested to hear more about your work as a pastor.  Can you talk a little bit more about that?

DOC FRANCIS:  So I have been a pastor for 30 years.  When I started as a pastor I was able to see.  I was able to read my Bible and use my computer and see the congregation that I was preaching to and over time my vision got worse and worse so I started using technology like Zoom Text, I eventually learned braille.  When I preach I always wait for someone to call on me and I have a support services provider an SSP come up with me on stage.  So they guide me up to the pulpit and I can give my sermon from there but I do have an SSP with me in church and I have somebody with me when my congregation comes up to me.  I sit in church, I use two interpreters who speaks out loud what I'm signing and I have another interpreter to tell me what other peopling saying.  Sometimes it's my wife that comes with me but now with Coronavirus everything has gone out the window.  I've had to close the church temporarily.  We're using Facebook now.  I have a friend come over and set me up with all the technology and the equipment that I would need to be able to do it on Facebook.  You know, I have a little stand that I could put my Bible on.  You know he taps me on the shoulder to tell me when we're going live, when to start the sermon and he taps me to tell me you know when the sermon is over and we can put things up on YouTube that people can still benefit from our congregation but it's very different now.  I think it's important to show me as a DeafBlind person to show other people that we can do it, that we don't really have limitations as long as we put our mind to things and that we have the same capabilities of everybody else.

DOUG:  That's such a great message to end this chat on is that the DeafBlind community like any other community can do anything.  Though you are personally the first DeafBlind pastor I've ever met it's a great example of the community being able to participate in any facet of life.  I am glad to hear about how Helen Keller National Center has helped your journey in that.  Thank you for joining today.  I hope we have another chance to speak together in more detail soon.

DOC FRANCIS:  Absolutely.

DOUG:  Great.  Well have a great rest of your day.  Bye.  Okay.  Well thank you Doc Francis for everything you shared with us today.  We'll be moving on in just a moment but I think it's a great opportunity to remind you that yes, this is a virtual telethon as well and we have a donate function connected directly to this live stream, so if you haven't already and you are able to, please donate whatever amount you're able to donate.  Every donation goes a really long way in helping Helen Keller Services continue to provide the essential services that they do for the communities that they serve and we've gotten a chance to hear directly from a lot of the consumers, hear directly today from consumers who benefit directly from those services and have shared the ways in which those services benefit their lives and empower them to move forward and navigate the world in a confident and whole way.  So if you are able to donate, please do now.  If you already have or you are not able to make the financial commitment today, please do share this live stream.  You can share it, you can click the share button and share on Facebook.  You can message people directly and tell them to log on.  We're going to be here for at leaf another hour and 45 minutes or so.  Got plenty of other great people to speak with and we really love to be able to connect with anyone able to join in.  We have a bit of a tight schedule but if you have questions or anything you would like to share in the comments section we certainly will try to get to those so feel free please to write any questions you might have.  And without further adieu I'm going to bring in Charnora and Dwight.  Hello Charnora and Dwight.  Are you there?  Dwight, do we have you there.

>>:  Hello?  Hi, how are you.  Is Dwight here?

DOUG:  I see his camera on.  Maybe he's still getting situated there.  So far so good.  We've gotten to talk to a lot of really great consumers and staff about a lot of different facets of the organization.  I am happy to talk with you now about the adaptive learning program.  Looks like Dwight is connecting to the program now.  Dwight if you are able to turn on your camera, there you go.  There you are.  We want to see your face.  You know if possible are you able to flip around?  Because with the window behind you it is hard to see your face.

DWIGHT MATTOCKS:  [inaudible]

DOUG:  There you go.  Perfect.  Dwight this wouldn't be the virtual telethon it could be without getting to see your face so we're really happy to see you there.  Thank you so much both for joining us.  So why don't we hop into it?  Why don't you each give a quick introduction to who you are and your connection to Helen Keller Services. 

CHARNORA TAVARES:  Hello everyone out there.  I am Charnora Simon, the Coordinator of the Adaptive Living Program our program that services people over age 55 that don't have a vocational role.  I have been with the agency for a lot of years.  This program is my favorite.  The people who participate in the out program have the option of taking advantage of low visions services if they would like along with orientation and mobility training, visual rehab therapy which is a fancy way of saying daily living skills.  Those are the main components of the program.  Most of the services are provided in the home but of course the participant has the option of coming into the office to receive those services as well if they wish.  Dwight I am really happy he was able to join us today because I like to tell people once a part of the Helen Keller family always a part of Helen Keller family.  He is one of the people that has remained consistent with the agency, has really taken advantage of not only the out program but some of the ancillary services that we [inaudible] and he's terrifically engaged and I was happy that he was able to join us today.

DOUG:  This is a perfect time Dwight, why don't you tell us about yourself.

DWIGHT MATTOCKS:  All right.  Well, I'm Dwight.  And I'm part of the Helen Keller Services and I get a lot out of it.

DOUG:  I'm going to interrupt you for one second.  Move the camera a little farther back.  There you go.  Continue.

DWIGHT MATTOCKS:  Okay.  I joined because you know, I wanted to be a part of something.  The library club is a good outreach for me.  I have been enrolled in their art class which was very therapeutic.  And it helped me open up and adjust to my conditions.  I get a lot out of the program.  I like it.  They're informative.  They connect me with people that go you know, that go through the same thing I do so we have, so I have someone to confide with.  It's a good program.  The people are there.  It's very welcoming.  I enjoy it. 

CHARNORA TAVARES:  So, Dwight just kind of randomly caught me out of the clear blue sky.  He said I'm blind, I recently moved to the community, I'm in a brand new apartment, I need okay to acclimated to my space.  One thing I enjoy about overseeing the program if I get enough information about the person I know exactly who to set them up with.  I work with a very talented group of people, they're super talented, they have lots of patience and based on the information that Dwight gave me from that conversation I paired him with an instructor that I thought would work well with him and they did.  To this day even though he's no longer a client in the traditional sense of getting the mobility, the rehab, his instructor to this day still asks about him, how is Dwight doing and how is he coming along?  And because he lives in the community every now and then at lunch I will see Dwight using his cane, using it properly, going to the store, getting to know the neighborhood and that's exactly what we want for the people who seek our services.

DOUG:  That's amazing.  I love to hear from both of you.  You know, Dwight how much you are able to be a part of the community and all the various activities that you do that sound like they bring a lot of fulfillment to your life and also what you said about being a part of the Helen Keller family.  I think the ways you are both sharing experiences.  Dwight with the last couple of minutes we have here I would love to hear about how your experiences with Helen Keller Services for the Blind has directly impacted your life for the better.  Maybe if you could speak more on that.  Like skills you've learned and things like that.

DWIGHT MATTOCKS:  Like she said, the independent living program, the lady Katie, she came over and she thoroughly helped me and you know living on your own, being blind you know sometimes you feel kind of left out.  Her training really opened me up and gave me more confidence in myself.  You know to move around, to no longer feel helpless you know?  I know I need help but I [inaudible] you know with the mobility training.  She gave me implements that you know, that can simplify my life.  Because a lot of the times we have hard times with simple things, common everyday things so her training really helped me.  I'm more mobile now.  I'm not just feeling stuck and isolated.  The programs, the groups we have, you know, I can identify with people, open up and share experiences.  I mean and it's really uplifting.  I get a kick out of it.  I love their art class.  I love their groups.  I love their book club.  You know their book club opened me up to a different readings than normally what I generally read.  So I mean it uplifted me in ways that I can move on.  I'm no longer stuck.

DOUG:  That's so beautifully put Dwight.  So wonderfully put and that just underlines it right there.  I think your enthusiasm for everything you talk about is really I be infectious in a really beautiful way and I'm glad to hear the ways Helen Keller Services and Helen Keller Services for the Blind has helped you enjoy life so much.  You really just put a smile on my face hearing you talk about all of this and I am sure that you are putting a smile on the faces of everyone that's watching today.  Thank you so much for sharing your experience and Charnora thank you so much.  I would love to talk to you more at a later date but thank you for joining us today.

>>:  Thank you so much and thank you so much Dwight.

DWIGHT MATTOCKS:  I would like to meet you and shake your hand.

DOUG:  We'll certainly work that out.

DWIGHT MATTOCKS:  Okay.  Thank you for including me.

DOUG:  Thanks for joining.  Take care.

DWIGHT MATTOCKS:  Bye‑bye.

>>:  Bye‑bye.

DOUG:  Thank you so much to Charnora and Dwight for joining us.  I'm going to bring Sue Ruzenski into the room.  I am very honored to speak can Sue who is the Executive Director of the Helen Keller National Center, someone who I've worked with closely in the last few years.  The film that I mentioned earlier on with the first fully DeafBlind actor Sue has been instrumental in every step of bringing that to life and sharing it with so many people but Sue we're here to talk about the virtual telethon.  I thought it would be a great time to, we've gotten a chance to speak to Kim and get an overview of the organization but maybe if you can go in depth on the Helen Keller National Center side of things and tell us more about HKNC.

SUE RUZENSKI:  Sure.  It would be my pleasure and thanks for having me and I want to say thank you to you because none of this would be happening without you and your creative ways and just your ability to pull these things together so thank you.

DOUG:  Thank you, I appreciate it.

SUE RUZENSKI:  Really.  So I'd love you tell you about Helen Keller National Center.  We are one division of Helen Keller Services.  And we're considered a special institution under the U.S. Department of education.  We're an act of Congress.  We were established 53 years ago and we are proud to say Congress has given us five mandates that we find very meaningful and enjoy fulfilling every day.  One of those is to provide intensive services to individuals who are DeafBlind both in our comprehensive program in New York and to any individual throughout the country through our network of regional offices and our DeafBlind specialists and our community service programs.  We work with families and professionals providing them with training and support, and we also conduct applied research and maintain a national registry.  Our mission as you probably heard already today is to enable each person who is DeafBlind to live, work and thrive in their community of choice.  How we enact that mission is through three major synergistic components of our services.  One is our direct service training program which is the program that we offer in New York that provides direct rehabilitation training with an emphasis on employment to individuals from all over the country.  We have a field service that extends throughout the country.  Those 10 regional offices where we have regional representatives who work very, very closely with state VR partners and other providers to build and elevate services for people who are DeafBlind who may not want to come to New York.  And then we have information research and professional development department and they offer professional learning opportunities, on line learning, seminars, producing products that can be helpful for people to build their knowledge and skills.  So that's sort of, that's us in a nutshell.

DOUG:  That's a fantastic overview.  And obviously we can't separate today from the context of COVID‑19 and everything that's happened around that.  As we've stated a couple of times throughout today's virtual telethon you know, Giving Tuesday is something that happens every year toward the end of the year.  I think it still is happening but Giving Tuesday Now was created to have a much earlier international day of giving because of the needs that have been created in the wake of COVID.  So maybe you could tell us how COVID has affected the Helen Keller National Center and their services and some of the challenges and also some of the successes of being able to navigate that.

SUE RUZENSKI:  Sure.  My pleasure.  Well, you know, it's been an interest period, I have to say.  You think about this time when we're all separated.  The consumers that were at the center in New York left March 13th and we'll never forget it.  It was a day that we never thought we would ever live and see a closing of our essential services in New York.  We really were so uncertain about everyone's health and safety but also what does the future mean for people in our community that we work with every day who rely on the touch culture?  And here we are practicing social distancing.  But you know just in terms of how can we just you know continue with our services.  And it's funny you know sometimes necessity is the mother of invention.  So you have a situation where people, I would say to a person it's been an interesting process.  But we have come together as an organization to a great extent.  I have seen more collaboration among everyone and learning, and just this very focused meaningful purpose to figure this out and to see how we can make this work.  So we've had to suspend our services.  That was, you know, pretty devastating but we've reinvented those services and they're taking place in a remote format using Zoom often as a virtual platform but we've been able to connect with the people in the community.  We have peer learning groups that sprouted out and are just growing in a variety of topics that include anything from learning about COVID and how best to live a life of safety at this time, to emergency preparedness, employment, preparing for employment, you know the mobility, the gamut of topics and really meaningful dialogues where individuals come together on Zoom and learn.  And we've also been able to work with our state partners to sustain some of our services and offer them on an individualized basis in a variety of areas you know, through remote learning which is another thing.  And we have these professional learning courses.  This is really quite amazing.  So you will find them on line for professionals to really enhance skills in a variety of areas.  Since we opened it up, I think it was the end of early April.  We've had 984 registrants taking courses on line.  I was hoping we could tell you a thousand today.  But we're almost there.

DOUG:  Maybe we'll be able to announce that by the end of this.

SUE RUZENSKI:  So even though it looks like oh my good networks you know, out of this we've learned so much.  We've been able to really make some really good changes I think that will help us in the future.  So to even provide services and reach people that we weren't able to reach before because they couldn't receive services in their home community or were unable to come to New York to receive those services.

DOUG:  That's amazingly put Sue and thanks for sharing that.  I am just wondering is there anything else that you would like to convey to those watching today or those who will find this later on.

SUE RUZENSKI:  I think we're all really grateful.  I just want to express my gratitude across the board to everyone, so the consumers who have stood there with us and gone through this journey of learning how do we make this work, how do we make ourselves accessible so we can have an inclusive remote learning opportunity in you know we couldn't do that without that exchange of support with consumers working with us and coming to join in with their peers.  It's been a great experience.  I have to thank the staff who have really stepped up.  Just their ingenuity, commitment to figuring out how can we in the best interests of the people we work with make this a viable and a meaningful time not just throwing up our hands saying we're kind of stuck here.  We're not at all.  And everyone is giving it their all which is wonderful.  I have to say we've received a lot of support in addition through our VR partners and service providers coming together, exchanging, really everyone is caring about each other and trying to make the most of this and even our funders have tapped on our door and said how can we support you?  Where are you now?  What do you need?  You know how can we re‑purpose this grant so it will work for you at this time with an earnest interest in support.  It's really made a difference during this time.

DOUG:  Sue thank you for that and I think one of the themes that keeps coming up throughout the broadcast today is the team and the family that makes up the organization and the willingness to use this time to be able to continue to provide services and think of new ways to provide services in the future and I think you've done such a good job in describing that.  I want to before we sign off to thank you personally for welcoming me into the Helen Keller family several years ago at this point and it's been an honor to get to know you and the organization in this process.

SUE RUZENSKI:  The feeling is very mutual Doug thank you.

DOUG:  Sue thanks for joining us today and we'll have to talk again soon.  Take care, Sue.

SUE RUZENSKI:  Bye.

DOUG:  Great words from Sue there and again if you are watching this is the Helen Keller Services virtual telethon.  Thank you to everyone who has donated thus far.  We still have a little ways to go and certainly would love to continue to see those donations to come in so if you have been moved or informed or inspired by anyone that's joined us today both on the consumer side or the staff side sharing personal experiences and connection to this organization please consider making a donation right now.  We have a donation button connected directly to this live stream.  All you have to do is click donate and you can use PayPal or credit card.  Any size donation goes a long way.  As Sue and so many people have put it, the reality of COVID has created a real need for an organization like Helen Keller Services to rely on the generosity and support of people like you who are watching so please know that every dollar that you donate will go toward serving the consumers who you have heard from today.  I certainly have been moved and inspired by what I have heard.  Thank you Judith Roland for your donation and thank you also for being my mother and giving birth to me.  I feel like I have to mention that.  Thank you to everyone else who has donated.  Jen Roman, Jamie, thank you so much for your donations.  Zac, thank you so much we really appreciate seeing those donations popping up in the box there.  If you haven't donated thank you for doing so now.  We're going to be going for another hour and 20 minutes or so and we can really use all the support that we can get.  So with that said I'm bringing in Simon here.  Simon's getting set up here.  Let's see.  Simon is coming into the Zoom room here.  And Simon is still connecting audio perhaps so while Simon is getting set up there, again if anyone has questions feel free to write them in the comments.  I know we're moving through a lot of segments here but if we can answer your questions we'll certainly try to.  Thank you for everyone who has participated in the telethon here, for donating and just watching this is really great.  This is also an opportunity for everyone who is a part of Helen Keller Services to let you all know more about what the organization does and the people that make it up.  So it's in addition to a fundraiser it's an opportunity to learn more about the organization.  So let's see, Simon, if you can hear me, let me know.  Perhaps you're still getting set up over there so Simon, can you hear me and if you are able to connect to the audio and put your camera on, we'll be able to chat.  I think I see your audio coming on.  Can you hear me Simon?

SIMON G.:  Yep.  Hi Doug.

DOUG:  If you are able to turn on the camera there it would be great to see you.  There you go.  Hello!

SIMON G.:  Hey, how are you doing Doug?

DOUG:  Very well.  Thanks for joining us today.  Why don't you tell me and everyone who is watching who you are and how you are connected to Helen Keller Services.

SIMON G.:  My name is Simon, I am a former student at Helen Keller National Center.  I went through their resident program.  I was there from January 2010, no I'm sorry, January 2009 to like June 2010 almost a year and a half.  And I have Usher's Syndrome too so my hearing is stable but I am completely blind at this point in my life.

DOUG:  Can you talk a little bit more about what, what you learned while at Helen Keller National Center and how that's served you in your life now?

SIMON G.:  Sure.  At the time just before I joined Helen Keller I already had a degree in computer science, but I was struggling with my vision.  So, you know, my family member found out about Helen Keller and what Helen Keller National Center provided me was you know adaptive technology.  When I used to code write I used to program with my eyes.  You know, I could see the lines ever code and stuff like that but they taught me how to use JAWS, a screen reader, it reads out whatever is on the screen along with the application accessible, it reads perfectly out loud, everything I need.  My screen reader is pumped up pretty fast.  They taught me mobility at orientation.  You know I have a goal to live on my own, which I am now you know.  I never used a cane before.  You know they taught me how to use a cane, how to travel safely, how to listen to the traffic cycle so I could know when to cross safely.  You know, another big thing that I don't think a lot of people realize being in the resident program therapy being there, through all my life I've never been with a DeafBlind person or a [inaudible] hearing person or being with people just like you, you know, with really good therapy, you understand, you are not in it by yourself and with the, you know the social workers like Lisa Honan, my case manager and Susan, Autumn you know, really encourage you to be you know, just learn from the other students and you know we learn from each other and it was just very therapeutic to understand it's not the end of the world being DeafBlind.

DOUG:  That's really, really well put and I love how you hit on the fact that you are not only able to get a lot of really useful skills from a place like Helen Keller National Center but it's also a place of community and it's a place to come together with other people in a similar position and really, and really get to support each other through community and I'm really glad you hit on that.  Unfortunately we don't have too much time here but with the last minute we have here, I understand that you are a computer programmer now and that you took the skills that you learned at the Helen Keller National Center and applied it to your life as a programmer, if you could take 30 seconds or a minute to talk about your professional life.

SIMON G.:  I currently work for Deco.  I have been working there for seven years, I'm a senior programmer there.  I go to work on my own, I use paratransit, I get around with a guide dog now.  You know with all the skills I got from Helen Keller and with my job I'm able to own a place of my own, a condo, a little condo, you know, and I just live, I'm able to live my dream.  My dream is the American dream, and I'm living it you know thankful for Helen Keller.

DOUG:  Well thank you.  That's really well put and thank you so much for joining us today Simon.  It was really a pleasure speaking with you.

SIMON G.:  Okay.  Thank you, too.

DOUG:  Okay.  Take care.  All right.  Thank you, Simon for sharing all of that.  If you are tuning in or if you have been watching for a while and thinking of donating now is a great time to do so.  Click that donate button and every dollar donated is going to go a long way in helping essential services Helen Keller provides and that they continue to provide during this time.  Giving Tuesday is an annual day of giving usually at the end of the year but Giving Tuesday Now is because of the need COVID has presented for Helen Keller to be able to provide the services that they do.  We've had a pleasure of hearing from a lot of the staff and also the consumers today from Helen Keller Services as to how the organization has benefited their lives.  We appreciate any donation that you can make and sharing this broadcast goes a long way in reaching people.  So thank you so much for that.  Let me go to the schedule here.  We're going to bring in Nohemy here.  Let me get situated.  It takes a moment to bring somebody into the room.  Hello!  Welcome.  Hi, how are you doing?

NOHEMY VIZCARRONDO:  Hi.

DOUG:  I think Diane is here as well so let me bring her into the room.  Getting situated here.  I think we're connecting to the audio Diane if you can hear me I think you are still connecting to the audio so just one moment.  Let's see here.  So in the meantime while we're waiting for Diane to get connected Nohemy maybe you can tell us a little about the day orientation program and who you are.

NOHEMY VIZCARRONDO:  You are going to start with me?

DOUG:  Yes.

NOHEMY VIZCARRONDO:  I my name is Nohemy, I am a [inaudible] provider at Helen Keller Services for the Blind.

DOUG:  Hold on is there music playing.

NOHEMY VIZCARRONDO:  My daughter was making a phone call.

DOUG:  I wanted to make sure where that was coming from.  Please continue.

NOHEMY VIZCARRONDO:  I work in one of the programs, it is Without Walls.  We basically connect our individuals in the community, working in the specific goals and their personal interests.  So it's like a mix of everything.  So my group ages are from 26 to 80.  So it's a beautiful group.  They're very upbeat, willing to go to places and be part of the community.  We also volunteer in the community so we try to be in everything we can.

DOUG:  That's great.  And can you just tell me a little bit more about maybe how your program has been affected by COVID and what's happening and maybe some ways that you have tried to work with those circumstances and continue to provide services?

NOHEMY VIZCARRONDO:  Well, since the whole pandemic started we basically stopped operations and we couldn't like, the beginning of kind of awful because we couldn't really reach out but now with getting more structure like we doing phone calls and we're doing face time with them and trying to do activity package for them and sending activities in the mail.  We are trying to later on connect with them if the house is permitted you know maybe to go and visit them and at least from the distance and with all precautions just to say hi and let them know we're still here for them and being supportive to them.

DOUG:  That's great.  That's something we've heard throughout the telethon today is the ways in which the organization has found ways to continue to support the consumers that really rely on the services that are really essential services in a lot of ways.  Essential services is something, an essential has been a key word during this time and really what it is that you do and a lot of people throughout the organization do is essential to a lot of people so it's really nice to hear that you are finding ways to make adjustments and still connect with people.  So with the last minute or so we have here I am just wondering if you are speaking directly to people watching right now, maybe people coming to this and maybe don't know much about Helen Keller Services and the services they provide prior to tuning in today is there anything you would like to say to anyone watching today.

NOHEMY VIZCARRONDO:  Well we are doing all this together.  We're trying to maintain our distances and you know, wearing the masks.  I mean our individuals are the most important thing in our jobs.  And we are trying to be there for them and protect them.  So if everybody put some of their time to protect themselves and you know, do their part then we have to do in this pandemic we're going to be like be able to control this and go back to our more normal selves you know?  That's the best part you know, then we can try to work on this together for our guys, for ourselves and families.

DOUG:  Absolutely.  That's really well said.  Well, thank you for that and on that note I think that's a good place to end this conversation.  Thank you so much for joining today.  We obviously have a pretty packed schedule today.  Thank you for sharing everything that you did.  It was really informative.  Thank you for joining.

NOHEMY VIZCARRONDO:  You're very welcome.

DOUG:  Well thank you Nohemy for sharing that.  I'm going to take another moment, I see new donations, let's see if I can identify these new ones.  Thank you so much Erin Quinn who is also interpreting on this broadcast.  Thank you for being able to interpret and donate at the same time.  That's amazing.  We appreciate that.  Thank you Brenda Barencelli.  We appreciate every donation that's come in today.  We have an hour left and certainly a long way to go with where we would like to get to this fund raising effort.  You've heard from some of the amazing people that make up Helen Keller Services on both the staff and consumer side.  Speak in really beautiful ways about what the organization means to them personally and the essential services that they're able to provide.  So if you are able to, if you are able to support please do now.  I know there are so many places in need and so many ways in which you can be spending that money.  I guarantee if you choose to click that Donate button now it would be money well spent going to services people rely on.  I know it can sometimes be a lot.  You are inundated with so many requests.  It can be a lot to take the moment and click through and put in a credit card and attach your PayPal but know it will be very appreciated by the people you've heard from so far.  Please do click that button connected to the live broadcast and donate.  So with that said, we're going to bring in Lorain.  Hello, Lorraine.  Can you hear me?  I think you are connecting your audio there.  She's the Executive Director for Helen Keller Services for the Blind and will be telling us more about that in just a moment when she is connected.  I want to say thank you so much Cari Benson for your donation.  We really appreciate it and it's so nice to see your name pop up here.  So thank you very, very much for that.  I think we've got you connected.  Are you able to adjust the camera down a little bit so we can see a little clearer?  That's great.  Thanks for joining us today.  So if you could just start off by introducing yourself and speaking a little more in detail about the services that Helen Keller Services for the Blind provosts.

LORRAINE LOCURTO:  I have worked there 42 years.  Before I get started with our services I would like to thank everybody who is participating today and thank you for spending part of your day learn more about us at Helen Keller.  Helen Keller has been around for more than 125 years.  And we have a very wide range of services that we provide to folks of all ages starting with young children in our early intervention program and going up to the seniors in our out program that Charnora and Dwight spoke about so eloquently.  We have location in Brooklyn and Hempstead and Islandia and in most of the facilities we provide the full gamut of vocational rehabilitations services.  Those include things like low vision services.  We have a low vision clinic in all of our facilities and the low vision specialist there will help prescribe low vision aids and devices to individuals to maximize whatever residual vision they might have.  We provide rehabilitation training there, it covers how to make yourself more empty in your open home, management skills, laundry, cooking skills, basic communication, the use of apps to make yourself more independent in your own home.  We offer orientation mobility which is to help someone learn to move safely within their own environment whether that be in their home, community or having to take the railroad and the subway to get to work.  We provide individual and group counseling to help people adjust to blindness and to navigate the vast resources that are out there and people have sometimes trouble accessing.  We have a placement department.  We do employment skills starting off with diagnostic vocational evaluation and moving on to job seeking skills, resumé writing, interviewing skills, job development and then eventually to working with someone in placements and actually placing them in the job and giving them the support they need in order to be successful.  We have a similar prevocational program we do with teens, letting them know what is possible for a visually impaired person to do, pretty much try to teach them that the sky is the limits if that's what they want and often help them get their very first job which is always very rewarding.  We have our OUP program that you saw with Charnora and Dwight which is helping older seniors remain independent in their own home and then we have our technology programs that operate in our facilities which is really teaching somebody the adaptive software to make the computer efficient for them whether that be through a speech program or a large print program, a braille program because in this day and age if you don't have the technology skill you're probably going to struggle to find some kind of employment.  We have an advanced technology program and customer service program which Marcia and Phillip talked about earlier that's been a boon to a lot of people who have participated in that so those services exist across all our facilities and then we have specialized services in some locations.  In Brooklyn we have our Children's Learning Center, early intervention and preschool for multiply handicapped children.  On Long Island we have the program that Naomi talked about a little bit ago a day habilitation program a service to disabled adults within that variety of programs we also have community habilitation which provides services to developmentally disabled folks who may live at home, give the families some help and relief and we have a respite program and we have a residential program.  Doug if I could take a minute to give a shout out to the staff that worked in the group homes they've become the essence of an essential worker working 24/7 supporting people who have been in their houses since mid March.  No visitors allowed that's a state mandate right now, they can't go to their programs, work or visit their families so that staff that have been working there have really been angels there.  Also on Long Island we have camp Helen Keller a beautiful summer camp for visually impaired children that we're crossing our finger and hoping against hope that we'll be able to run that some summer.  The book club, our health and wellness program that's running remotely and providing stress reduction to a lot of folks who I think need that right now.  That's pretty much the services that we provide.

DOUG:  Thank you for that very thorough run down.  With the last couple moments we have here obviously this fundraiser's happening very much in the context of COVID and additional needs created during that time.  For those watching right now or people who might be coming to this later is there anything you would like to say directly to them as far as the potential donors out there or people who are considering giving to this?  Is there something you would like to say directly to them.

LORRAINE LOCURTO:  We're all in this together.  We have all been affected in some ways.  Being able to provide the services in this time is very challenging and very expensive particularly like I said in our residential programs, we've had to you know employ many, many staff round the clock shifts that we've never had to do before so many expenses that are new to us but we're managing them.  So any help from the community is always very appreciated.

DOUG:  Absolutely.  Well thank you so much Lorain for that and for sharing more details about Helen Keller Services for the Blind and all the services they provide.  It was a pleasure speaking with you.

LORRAINE LOCURTO:  Thank you Doug and thank you for putting this all together for us.  Thank you.  Bye‑bye.

DOUG:  Bye.  Well thank you so much Lorraine the Executive Director of Helen Keller Services for the Blind for sharing more information about the services they provide and thank you for all of you watching so far.  We really appreciate everyone who has tuned in and donated.  Thank you to Julie Mandelbown and to Barbara Fineman, my aunt, thank you so much.  Thank you to everyone who has donated and I'm excited to bring on Holly right now.  Holly, thanks for joining us today.  Holly, I got to, so Holly, I will allow you to introduce yourself in just a moment but to give a little context Holly normally participates in Helen Keller Services run walk fundraiser which unfortunately was not able to happen this year but she still wanted to find a new way to support in the way that she always does every year.  I was actually sent a really moving letter that she wrote sharing the sentiment that she really wanted to still help raise money for Helen Keller Services and support them even in the wake of not being able to do the run/walk so with that introduction Holly if you could tell us about yourself and how you are connected to Helen Keller Services.

HOLLY STERNLICH:  Hi, my name is Holly, my mom is an interpreter so obviously I have been around sign language since I was little.  In fourth grade she told me about the Helen Keller run/walk.  I used to go at the end for the food and stuff but I wanted to be in it.  I started a team in fourth grade called Holly's Homeys.  We walked it, I didn't think much about it, I did it every single year, I did it fourth, fifth, sixth and seventh grade and I would have been doing it now and in sixth grade my mom started the Helen Keller youth club.  It was more of an interactive way to be involved because the run and walk I wasn't really around anyone who was deaf or blind.  It was just me and my friends but the youth club I was able to interact with students there.  It would start with a guest speaker or someone would talk about their story and then we would do activities.  You would feel like an obstacle course, they were fun activities but it gave you a new perspective and appreciation for anyone who is DeafBlind.

DOUG:  If you recall some of what you shared in the letter, you were speak that a little bit but maybe if you could share some more of the sentiments you expressed in that because you did such a great job of expressing why this resonates with you so personally.  Maybe if you could speak a little bit more on that.

HOLLY STERNLICH:  I feel like they closed their doors for the first time since 1969.  I feel like the DeafBlind community is already isolated because it's hard to communicate if someone doesn't know sign language or something like that and now they're even more isolated because they rely on touch and braille.  People don't want to touch them because of corona right now.  I feel someone who is already isolated is even more isolated.  Right now Helen Keller is not open and they can't learn how to do that stuff.  So someone like me has the, like the privilege of having a phone and a computer and I can know what's going on in the world but someone who doesn't know how to use that stuff right now doesn't know what's going on, they don't know if it's better or worse or what's going to happen and I think that can be really scary for someone.  I couldn't imagine going through that.  I think they need help right now.  And anything that I can do to help them is like, important.

DOUG:  So well put.  What grade are you in right now Holly?

HOLLY STERNLICH:  Eighth grade.

DOUG:  It's so great, we've been trying to talk to so many people that day.  It's great for you to come on today and represent a more youthful voice today.  It's great what you are talking about is obviously Helen Keller Services services all age groups including youth as well.  But for you who perhaps aren't directly connected to the DeafBlind community I think there's a real value as a younger person to have a connection to an awareness of all different types of people and having in the way that you have expressed and the way that just enriches your own life and gives you a much greater understanding of the world around you.  So it's so nice that you are able to get involved in this at such a young age.  Could you tell us about the HKNC youth club.

HOLLY STERNLICH:  It's mostly targeted for middle schooler, high schoolers, Helen Keller is in Port Washington but people have come that are not from Port Washington.  There are chairs in a circle and a student will come and speak and they'll share their story and sometimes they'll share technology, how they use their phones, and this and that.  They'll take questions that anybody has.  Usually we'll go into some sort of activity like I said before.  We all had blind folds on, reach into a basket and try to guess what stuff was.  We did the conference bike, there's a track there, one person steers the bike and it's six people, everyone has to pedal and that moves the bike.  We did a bunch of fun stuff like that.  Sometimes we'll learn some sign language, stuff like the alphabet, numbers, things like that.  Just basics.  And then sometimes we'll do another activity or something or just have our project, things like that.

DOUG:  How many people are, partake in the youth group?

HOLLY STERNLICH:  It started really small like 10 people but every month it gets bigger.  It's not a commitment so it kind of depends but maybe 30 people.  It's definitely growing.  It's getting a lot bigger.

DOUG:  Someone like yourself who has been there from the start seeing new people join in from time to time and watching their journey from maybe someone entering into the group for the first time and being connected to the DeafBlind community and seeing their evolution is there anything interesting that you have seen witnessing people coming into the group their evolution throughout the process?

HOLLY STERNLICH:  People start off a little uncomfortable and unsure and as they come more times they're more excited to come and they're more familiar with some of the students, someone who has been there a few months they're like oh hi, how are you?  I think that's really cool to see, people are really starting to open up and making the change and becoming more aware and stuff like that.

DOUG:  That's so great that you mention that.  And part of what Helen Keller Services does and what we hope this broadcast does is to bring awareness to the DeafBlind community that Helen Keller serves.  There are many people throughout the country that are part of those communities and certainly a lot of people who aren't directly connected to someone who is but there's also plenty of people out there who may not have a connection to the communities.  It's important to understand still communities of people that you might not be directly connected to but we still benefit from understanding more.  We are certainly interconnected with each other and really need to be able to understand and communicate with each other.  So with the last few moments here obviously a lot of what we're doing today is centered around the virtual telethon aspect and we are raising money to help support Helen Keller Services and the services they provide.  So Holly speaking directly to the people watching now and people that will come to this later is there anything you would like to say about what this organization means to you and how important it is for them to donate if they can.

HOLLY STERNLICH:  I think it's really important.  It's important to me that I am lucky enough to have my full sight and my full hearing.  And I think that if you are in a position to be able to give, it's really important.  Especially in times like this where not everyone is doing as well as we want them to, that you need to give, like if you can give back like that's really important.  It can help someone more than you think it could.  And anything you could give could be beneficial and thank you to anyone who did give today.  We're thankful for everyone who did give.

DOUG:  Thank you so much Holly for joining today and also for everything that you do both with the HKNC youth club and your participation in the run walk every year.  Again I was genuinely moved by the sentiments that you shared in first the letter and what you have spoken about today and I think you really are a great role model for a lot of other people your age that you know, hopefully you'll inspire them to learn more about the community and get involved as well so thank you for joining us today.

HOLLY STERNLICH:  Thank you so much for having me.  Thank you.

DOUG:  Thank you Holly for sharing that.  Thank you to all of you out there who have donated so far.  We are really happy to see any donation of any size come in.  We have about 45 minutes left in this broadcast so if you have been sitting there thinking about donating now would be a great time to do that.  If you are able to reach out to other people and have them join us on this broadcast for the last 45 minutes or so that would be amazing as well and really helpful.  And thank you Deb Harlan for your donation and Lorain who just joined us and donated shortly thereafter and Nicole Roth and if I have missed anyone who has donated please write something in the comments.  I would love to give you a shout out.  Thank you to everyone who has participated in the telethon so far.  I want to bring Stephanie Trollo into the room.  I see you are connecting.  Thanks for joining us today for the HKS virtual telethon.  I know we heard toward the end of what Lorain was talking about we heard her mention Camp Helen Keller.  Introduce yourself and your connection to that.

STEPHANIE TROLLO:  Sure my name is Stephanie Trollo.  I have been the director of the Camp Helen Keller for nine years but I worked as the music director before that and even before that my grandmother was the camp coordinator so I have been around Camp Helen Keller since birth.  It's a fabulous program, a day camp for children 4 through 16.  We get about 50 kids a summer.  We have a very small staff to camper ratio.  For every three campers we have one staff member.  Our camp is actually an intervention program designed to help children who have vision loss catch up on those developmental gaps that vision loss can lead to.  Most of our campers go to regular public schools during the year where they are the only visually impaired child that they know.  Then they have five weeks over the summer where they get to be with 49 other kids that are just like them and that in and of itself say pretty meaningful experience.  Then beyond that we have our staff who are trained to support really key parts of development that sometimes classroom teachers are not aware of or these things are easily overlooked and we use these five weeks to try to really help those kids catch up.

DOUG:  You know I can't help but think of are you familiar with the documentary Crip Camp?  It's a really great documentary, it goes back to a camp in the 70s the first camp for kids with disabilities.  What resonates with what you just said and why I thought of that is what was really echoed throughout the documentary by the kids part of the camp and what you just shared is the importance of kids being able to come together and feeling like they're really a part of a community and a community they feel like they fit in better than other communities in day‑to‑day lives and really the importance of being around other kids that can relate much more closely to their experience and I imagine that's one of the most valuable elements of the camp.

STEPHANIE TROLLO:  Absolutely.  And as wonderful as it is to think about that there's been a fair amount of research showing that there are measurable psychological benefits to kids being around other kids who are like them.

DOUG:  Absolutely.  So I understand that we have a video clip.  Can you introduce that while I get that ready?

STEPHANIE TROLLO:  Sure.  Two of our campers, they were both adopted from China, they're sifters, they both have Albanism which means they're legally blind.  They have been attending here for five years and they have some pretty great things to say about the program.

DOUG:  If you could do me a favor Stephanie, if you could let me know that you are able to hear the video when I start it, that would be great.  Okay.  So let me see here.  Okay.  All right so give me a moment here.  Okay.  Great.  Share.  All right.  I'm just going to pull that up here.  Give me one moment.  I can tell you it's certainly worth it.  I'm just connecting here.  Sorry it signed me out of connecting to my Google Drive so I have to go back in here.  Of course what would be a virtual telethon without some technical snafus.  You know what?  I'm not sure this is going to pop up now.  It's not letting me connect.  Maybe Stephanie while I try to troubleshoot this, if you could share a little bit more about, you know I understand that you know the camp this year is hanging in the balance a little bit depending on what's happening.  Maybe if you could talk about how things have been affected by COVID and maybe some alternatives that you are thinking about or hopes that you have in terms of that.

STEPHANIE TROLLO:  Sure.  So I am waiting as long as possible to make any calls.  There's some evidence saying warm weather and humidity will have an impact on the virus so I'm holding out for that.  I'm also waiting to see what kinds of things school districts come up with for the fall in terms of social distancing.  Our program has always mirrored schools in lots of ways and this could be another way where we could benefit from schools setting up something first but for now we're considering bumping the program back a week so starting later to buy ourselves more time and beyond that we would have to unfortunate cut maybe one week off the program.  If that's not enough we might have to consider split sessions, some kids come one day and some on another.  We're waiting as long as possible and things in New York seem to be changing every week or so.

DOUG:  When traditionally does the camp start?

STEPHANIE TROLLO:  We usually start the Monday after fourth of July and run for five weeks.

DOUG:  I see.  Well unfortunately, Zoom is not letting me connect to my Google Drive but I will share the video on our page later today.  We look forward to sharing that later today and Stephanie, thank you so much for joining us today and talking about Camp Helen Keller and fingers crossed that all works out for that.  We're hoping you are able to do that.

STEPHANIE TROLLO:  Thank you.

DOUG:  All right take care.

STEPHANIE TROLLO:  Bye, thank you.

DOUG:  All right.  Thank you so much Stephanie for joining us.  We are going to bring Cari Ford into the room now and Cari thank you so much for your patience today.  I know the schedule got a little bit wonky so we'll let you just get connected there.  Looks like you are connected.  I know on your end the scheduling got switched around a little bit so thank you for your patience and we're happy that you are able to join us today.

CARI F.:  Not a problem.

DOUG:  If you could introduce yourself and talk about how you are connected to Helen Keller Services.

CARI F.:  My name is Cari and I was introduced to Helen Keller Services via my regional rep.  I had a meeting with her, she discussed the services that Helen Keller provides.  Plus she told me about the professional learning leadership intern program, and that was right up my alley.  So I went through all the process to get there, had some training and then went through the internship program.

DOUG:  And could you talk a little bit about what you feel like I gained from your experience at HKNC in your personal and professional life.

CARI F.:  Wow, well, to, I have to summarize because there so much I can't mention it all here.  Of course my internship was in the independent living department.  So, I have to say that the instruction I got personally was you know, very helpful and invaluable for not only my internship but for my professional teaching as I am a rehab teacher.  And the other personal impacts that blew me away was audiology, because I didn't know that there were other choices of hearing aids.  So I got a chance to try some out and I picked some hearing aids that really helped me personally, and professionally.  I gained some tools as to how to make communication cards for when I get into situations where I can't hear I can use those cards.  And so that blew me away.  I have some basic sign language that I still practice just to keep it up.  And also mobility.  I have some tools for street crossings, when I'm not comfortable I can use the street crossing signs, and also the Lyft and Uber cab signs so I can be easily identified.  I use all of these tools in my personal life.  Professionally, PLLI, professional learning leadership internship I was on was absolutely what I needed.  It gave me some hands on teaching experience.  You know I had a lot of instruction, and then I actually work with students under the supervision of you know the instructors, and for three months.  And it taught me a lot about myself, a lot about my teaching and made me face some of the challenges that I needed to face and think about.  And when I got back to my home and went on the job interview I was able to talk about those experiences and demonstrate some of the skills that I was able to learn.  And I think that really helped in gaining my rehab teacher position.

DOUG:  And can you talk more about your professional life now as a rehab teacher and tell us a little bit more about that?

CARI F.:  So I'm a rehab teacher for the state of Missouri so I'm working in the field when the virus isn't around, and so I teach people, my clients are mainly seniors, senior citizen adults who are blind and are losing their vision.  Some of them also have hearing losses so there's a variety.  I have been working for about six months and I have been learning all the way, and I am still loving my job even though we're remotely can be frustrating.  But I'm still loving my job and I still love all the people that I work with.

DOUG:  And you know obviously as we've been managing throughout this broadcast we're certainly operating very much in the context of COVID and obviously additional needs that have been created during that time particularly for you know today the theme is for certainly raising funds for Helen Keller Services as a result of some of the extra additional challenges from a funding standpoint and really needing people to participate and help support Helen Keller Services so it can continue to provide the essential services it does.  I am curious, how is the recent happening with COVID‑19 affected your life?

CARI F.:  I am working remotely so I am still working and I am very grateful to be working so I am, you know rehab counselors and teachers are essential so we still have to provide service even though we do it remotely.  I'd say it's more positive, because I've gotten kind of spoiled on the remote side of it.  You know, I don't have to get up so early and worry about transportation and you know, all that stuff.  I don't necessarily have to dress up.  I can still do and I do.  So that's been a positive.  And I've also had more chances to do some more professional development, a lot more readings and additional trainings that I wouldn't have time to do if I weren't in this situation.  So it's actually been more positive than you know, than negative.

DOUG:  I'm really glad to hear it's provided you time to learn and you know, further your development in other places that you might not otherwise have that time so that's a really great positive outcome from something that wouldn't otherwise necessarily have been the most positive thing but it's, you are able to find some positive outcomes in that.  That's really great.  You know with the last minute or so of our conversation here knowing that there are people watching this live right now, people who will be coming to this later as someone like yourself who has obviously been, benefited from services at Helen Keller National Center and someone who is a thriving professional yourself I'm wondering if there's anything that you would like to say directly to people watching about why it's important to support an organization like Helen Keller Services.

CARI F.:  Well as far as the National Center, which is what I'm familiar with, it's important to keep the programs going.  All the instructors are absolutely superb.  Very supportive, everything is individualized, which I think is extremely helpful that it's all individualized.  It's all one on one.  Which is important for a DeafBlind person to have that one on one.  And also there's supports after, you know there's different seminars.  Right now they've got Zoom meetings going on so I am involved in three Zoom conference groups to continue sharing and continue gaining knowledge and continue staying in touch.  So it's not only just like during when you are there.  It's before.  It's during, it's after that you have all the continued support and resources at your disposal.

DOUG:  Well, thank you Cari.  That was so well put and thank you for sharing what you did today.  I think a lot of people will benefit from what you were able to talk about today.  Thank you for joining and thank you, I know there was a mixup in the schedule.

CARI F.:  I'm glad too and we all have to be flexible.

DOUG:  That's very true.  That's a good note to end on with this conversation and thank you again for joining us Cari.

CARI F.:  You're welcome.  Thank you.

DOUG:  Okay.  Well everyone, I see Beth Jordan just joined us, hello Beth, nice to see your name pop up.  And thank you to everyone who has donated today.  We have about 25 or so minutes left.  I think we might have one more guest joining us if he can get things set up but in the meantime it's a great opportunity to reflect on some of the conversations we've had today.  We've had the distinct pleasure of hearing from many people throughout the Helen Keller Services family and the divisions that make it up including Helen Keller National Center and Helen Keller Services for the Blind to be able to hear directly from the staff and consumers that really are the face of the organization.  A lot of what we wanted to do today certainly is raise money for Helen Keller Services.  COVID has created a really fund raising need and that's why we are fund raising today.  Also this was an opportunity for Helen Keller Services to pull back the curtain and let all of you in to be able to get a more personal understanding and direct connection to the organization and the people that make it up.  And you know for those of you that have been able to join us for any part of this and perhaps the entire broadcast I'm sure you would agree that there are some amazing people that make up this organization and certainly many more that we were not able to connect with today but hopefully we'll be able to talk with in future live streams.  But with that said if you are watching and able to donate right now there's limited time left in this particular virtual telethon event so now would be a great time to click the donate button that is attached to this live stream.  It makes it very simple to donate whatever amount you are able to will certainly go to good use.  So whenever you are able to please donate.  Thank you to everyone.  I hope I haven't missed calling out any names.  I know some of you may have donated directly to the website or prior to this broadcast so if I haven't been able to call you out feel free to type in the comments.  It's been great to see familiar names pop up.  Chad Hunt, Barbara Fineman, Mary Fu, I am seeing some great familiar names and good friends of mine and everyone has written comments, you know we may not have gotten to address everything that you have been writing but we appreciate all the supportive comments that you have been writing.  With that said we have Mark Armstrong joining us now.  I am going to bring Mark in.  Hello Mark I see that you are connecting to the audio right now.  We'll give you a moment to get situated.

MARK ARMSTRONG:  Hello Doug.

DOUG:  Thanks for joining us today.

MARK ARMSTRONG:  I had a little bit of technology issues getting on today.

DOUG:  We're glad you made it on.  It wouldn't be a live broadcast and Zoom call without having some sort of technical challenges.  I am facing a wood table and I have been knocking on it through the entire broadcast.  Fortunately we've been able to have a long and fruitful live stream so far and I'm so glad to have you join me.  With that said I would love if you could start off by introducing yourself and speaking about the role in the organization.

MARK ARMSTRONG:  I am mark Armstrong and I live in North Carolina and I work remotely for Helen Keller from North Carolina.  I am the senior adult programs specialist for Helen Keller and what that really means is I work with senior adults 55 and older who have combined vision and hearing loss.  A lot of seniors I work with who are seniors who had vision or hearing or one or the other during their life and now they're losing one or the other or a combination and now it's hectic for them to try to live as they did before.  So it's great work and I enjoy working with the seniors.

DOUG:  That's such an interesting thing to bring up.  I think certainly for a lot of people watching today there's a lot of people directly connected to Helen Keller Services or the community as well as some people tuning in today who will be watching this later who maybe are coming to Helen Keller Services for the first time and maybe don't know much of anything about the DeafBlind community, perhaps don't know anyone personally, might be surprised to know that one of the largest portions of the DeafBlind community is the elderly and that you know people who perhaps lived most of their lives with vision and hearing and are as they get older are losing it and are becoming part of the DeafBlind community.  I think that's a helpful thing to point out because I know a lot of people don't necessarily know that without having some context.

MARK ARMSTRONG:  That's right.  And to be honest Doug it goes so unreported and a lot of people, they are people who have issues with admitting they have a hearing loss or a disability but particularly seems that people tend to hide that fact or they're not comfortable with wearing the hearing aids.  And a lot of it they feel like they're going to be treated differently if people find that out.  So it is a very good thing and those seniors are really, it's a growing population as we know.  And it's more and more so it is a very, very large group if not the largest group of what we would now call DeafBlind.

DOUG:  Right.  And you know I went obviously COVID has affected all facets of life and certainly of the organization.  I know obviously, it's great that we've reiterated throughout the broadcast that many of the services Helen Keller Services is still able to provide.  I understand with the population that you work with there's some additional challenges during this time.  Maybe you could speak a little bit on that topic.

MARK ARMSTRONG:  Well, you mean the challenges right now during our current climate?

DOUG:  Right.

MARK ARMSTRONG:  It's very difficult.  And Helen Keller is doing such good things with you trying to go with the remote training and things like this.  But the seniors who are not necessarily technically savvy that's more challenging.  And plus if they, you know, if they don't have the braille, the ability to access the information tactilely or anything like that so they're still depending on the hearing many of them.  So when I do training it's very hard for them to, actually some ever them to hear and to really have that access to the information.  So is that what you are asking Doug?

DOUG:  I think again it's important to note that for many people you know technology is obviously a regular part of our lives and during these times where it becomes more important, for certain people it's seamless to switch over to Zoom calls and technology but for certain populations where technology is maybe not as much of a part of their normal lives this is an even more challenging time in that sense.

MARK ARMSTRONG:  May I add that a number of seniors they don't live inside the cities, don't have access to the technology.  Some states are pretty far out there so to speak and they just don't have the infrastructure for that connectivity.

DOUG:  I am here in Los Angeles and any time my wi‑fi gets skittish I'm really upset by it but there are certainly parts of the country that wi‑fi is hard to come by so it's a reminder to not take the wi‑fi that I have for granted or rather other things that are provided for granted.  But no, absolutely.  So I'm wondering for those watching today, obviously we've been doing the Helen Keller Services virtual telethon and we're raising money for Giving Tuesday Now is Giving Tuesday bumped up from its normal slot to today because of the need that's been created in the wake of COVID.  I am just wondering speaking directly to people watching now and those who will watch later, the value of them, those who can contribute financially today why it is so important.

MARK ARMSTRONG:  It is so important because the states do not have a lot of money to spare.  It's very tight and I have a feeling it's going to get even tighter now.  But you know, people need access to the information they actually, wait a minute I'm getting confused about what you are asking.

DOUG:  Just talking to the people able to donate today.

MARK ARMSTRONG:  Yeah donations.  It costs a lot of money for training and it cost a lot of money for equipment and it costs a lot of money for me to go places and to teach people if I want to do it live if that opportunity presents itself again.  But there's not a lot of money for seniors through states because if there's no employment the money is harder to let loose for seniors.  You know a lot of money is going toward educational goals and people who want to work.  So if you are a home maker or at a point where you need to not work longer then it's harder to get the funding so donations are very well appreciated particularly for my program called the Confident Living program, we do it twice a year for five days each at the center but I have the opportunity to do that across the country and we call that on the road and I do work throughout the country everywhere so it's very expensive for me to go and to provide these trainings and to bring in the seniors.  There's always the cost of bringing them to the location which is usually taken on by the state so that's very difficult as well.  So definitely any funding people can share is great.  It's a great cause, Helen Keller National Center as well as Services for the Blind does such an excellent job.  Always looking forward to move forward and advance our skills and our ability to serve consumers.

DOUG:  I know you touched upon this a little earlier with the population that you work with, the hesitancy to show their hearing or vision loss.  Speaking to the awareness side of this, because on the one hand we're certainly raising money today.  If you are able to donate today please click the donate button and do so.  I think it's important to pull back the curtain and let people see the faces that make up this organization, both the staff and the consumer side showing the needs of the DeafBlind communicate in various spaces of media.  In this case Facebook live and another case the film where I casted a DeafBlind actor.  Can you speak of the experience of the awareness of the community and the integration of DeafBlind into the main stream community.

MARK ARMSTRONG:  It's a little strange because I myself am DeafBlind.  If you think about it, because the vision loss I have.  I have very severe vision loss, I have hearing loss in one ear and the other one has its challenges.  But you know, if you look at me you don't think hey he's DeafBlind because I function as a fully sighted and hearing person for so many years and now that I'm experiencing this it's quite different.  So I wasn't, before coming on board with Helen Keller National Center I wasn't aware of what it meant to be DeafBlind to be honest.  I thought you had vision and hearing loss or you had to be completely vision and hearing loss, either one but that's not the case.  So the awareness is that it's out there.  People may not understand.  Maybe you are talking to someone and they don't quite understand what you are saying.  You are thinking something is not quite right but in fact it is the communication between the vision and hearing that's causing the issue.  And also it's just good to know because the awareness needs to be there because families often don't understand it and it creates so many communication issues and hard feelings within the family, a lot of stress even with the abilities I have it's stressful for my wife and I at times when we're trying to communicate.  We go through it as well.  So for me having you know, being a part of the community so to speak, it's really made me more aware of people's needs out there and particularly for those who are DeafBlind or have combined vision and hearing loss.

DOUG:  Thank you so much Mark that was wonderfully put and thank you for joining us today as part of the virtual telethon.  I appreciate hearing your side of things and I hope we can talk in the future.

MARK ARMSTRONG:  I would not mind sponsoring one of the Feeling Through movie premiere.  I haven't done that yet so at some time I would like to talk to you about it.

DOUG:  Hopefully we'll be able to work that out soon.

MARK ARMSTRONG:  Thank you, sir.

DOUG:  Thank you, Mark.  Have a great rest of your day.  All right, folks that was mark Armstrong with Helen Keller National Center sharing some really great information about the senior population that he works with and also just some more information about the diversity of the DeafBlind community and that it is a community that includes quite a spectrum of people spanning all ages, many different degrees of vision and or hearing loss, and, but a community that we've really gotten to hear from today and gotten to hear from some really great consumers connected to Helen Keller Services as well as a lot of the amazing staff that make up Helen Keller Services.  And with our final five or so minutes here, we're still raising money for our virtual telethon so if you are watching and you are able to donate please do so.  All you have to do is click the donate button attached to the live stream and it will connect to the place where you can use PayPal or a credit card.  Perhaps you have been watching the broadcast and aren't in the best financial situation even if you are able to donate a dollar or giving us a like today, if you are watching and maybe are financially more secure during these times I can guarantee that every dollar you donate today will go toward the services that Helen Keller Services provide throughout the country.  Thank you to everyone who has donated.  I think I've gotten a shout out to most people who have done so through Facebook.  If I missed you please message us right now.  I'm just scrolling through to see if I have missed anyone.  Thank you to everyone who has been writing amazing comments throughout this broadcast.  We love to see your name pop up and be able to hear from you as well.  And again just on a personal note, again I had an opportunity to introduce myself at the beginning of this but now that we're closing out here, I want to say I'm someone who had no connection to the DeafBlind community whatsoever going back a few years prior to connecting with Helen Keller Services and being able to work along side them now for the last two plus years.  And it has been such an amazing experience to not just intimately connected with a ton of people in the DeafBlind community but to work closely with the Helen Keller Services and Helen Keller National Center and Helen Keller Services for the Blind because for the simple fact that it's made up of a bunch of incredible people who I have the pleasure of call friends now and people that really inspire me on a daily basis in the work that I do and just in my every day life.  And I can really just say from a personal note that it's an incredible organization not just for the reasons that we've mentioned in the essential services they provide but also that it's made up by a bunch of amazing human beings who are committed to the work they do and support the consumers that rely on a lot of services they provide.  So just on a personal note I can say it's an amazing organization.  It's been an honor to work with them and be connect with them in the ways that I have.  So in the last couple minutes I want to state that we will, once the broadcast ends it will continue to live on our page so if you want to continue to share it then I will make sure in the comments section that there's still a direct link to donate.  Certainly today Giving Tuesday Now is a day we draw folks to donating but it doesn't need to stop now.  We welcome donations any day of the year, today, tomorrow or any other day following because we really, really could use the support.  And again I think it's been demonstrated really well through the amazing people we've had on today just where those dollars go and specifically, the specific programs they support, the specific individuals they benefit and impact in an amazing way and I hope you were able to get a sense of that today and get a little bit better sense of the organization that this I've had the pleasure to get to know over the last couple of years as well.

Some of you watching might already be familiar with the weekly live stream series that we do called Feeling Through Live which is a collaboration between The Feeling Through Experience and Helen Keller Services.  We do these live streams every Friday at 2:00 p.m. eastern time and they're an opportunity to speak with individuals from the DeafBlind community or the blind community, individuals that are directly served by Helen Keller Services and talk about timely topics that are really prescient right now.  We've talked about the way individuals and services have been affected by COVID but it's an opportunity for individuals who are part of those communities to engage with other people in the community that are given the platform to speak more about the community and for those of you out there who are just being introduced to the DeafBlind community or blind community and are learning something as a result of tuning in.  We will have our next broadcast this Friday at 2:00 p.m. eastern time.  We'll be announcing it tomorrow.  It will be an amazing couple from the Helen Keller National Center that we are really excited to talk about.  You can also go back and watch our previous videos on this page on the videos section.  It's an opportunity to acquaint yourself more with the people who make up Helen Keller Services and the community at large.  Again in my closing remarks I would like to thank the interpreters who have joined us today and made this an accessible live stream, Alyssa, and Jamie and thank you to our captioner Laura who has been live captioning this conversation.  Again accessibility is really important to Helen Keller Services and The Feeling Through Experience and creating an environment where everyone can participate.  In the closing moments here we'll do a little count down.  You've got 10 seconds if you want to donate now to this specific live treatment broadcast.  Please click now and donate.  Otherwise please continue to donate throughout the day and share this video once it is reposted as a non‑live video in a few moments.  Share it with anyone else who you think will be able to financially support Helen Keller Services and who might find this of value.  Thank you so much for everyone who tuned in, everyone who donated, thank you so much everyone who was a part of this broadcast and shared all the valuable information and personal experiences and we're wishing you all the best during these challenging times.  And if anything, if this broadcast brings so many people together throughout this 3 hour broadcast has exemplified anything it's the importance of community and coming together during these times.  We hope you've enjoyed this broadcast so without further adieu we're signing off for now and thank you for joining us.  Bye.

Feeling Through Live • Episode 3: Rebuilding After Sudden Blindness

DOUG:  For those of you joining us on the topic today, the it is sudden blindness and rebuilding life after that and the various services that Helen Keller network provides in order to walk through each step of that process.  So Phillip will be sharing his personal experience and Marsha will be filling in about the specific services provided in order to aid in that experience.  So let's hop into it.  Phillip, if you could introduce yours? 

PHILIP:  I am Phillip did you think an and I am a student at Helen Keller. 

MARCIA:  I am a vocational instructor for the teen program and Phillip is a part of that. 

DOUG:  Great.  Thank you so much for that.  Again, I encourage anyone watching right now to ask any questions you have throughout.  But Phillip, let's start with, why don't you take us back several years and kind of walk us through your personal experience. 

PHILIP:  Sure.  So, personally, I had my vision my entire life.  And back in 2010 I had a headache.  It wouldn't go away.  And that caused me to go to the doctor.  And after a couple of days of having this headache, the doctor ran some tests, did a CAT scan, found out I had a brain tumor but they just monitored it because they said there was no growth at the time so they were just monitoring, keeping a close look on everything and had me coming in quite often, every so often, every couple of months for an MRI just to see what was going on.  Finally a year later it grew.  And they said the direction it was going in could cause me to go blind so I had to do surgery and. 

DOUG:  So I could give you a pause real quick, from the moment that you first learned of this diagnosis of a tumor can you kind of just let me know what your life was like at that moment, like what you were doing professionally and give us a sense of what your life was like at that time? 

PHILIP:  Sure.  When I found out about this tumor in 2010, I was working for Geico full time.  I was working in their, no fault medical department, but of course it wasn't bothering me.  I mean I literally went to the doctor because this headache lasted me like three or four days and it wouldn't go away.  So yeah, so they just monitored it after a found out.  I was doing that.  I was also going to school, to finish up my bachelors, and I was also playing tennis.  And pretty you know, kind of like semi, I would say I was playing tennis a lot, pretty much every day, so that was the big, that was what I was doing at the time.  So now a year later, when it did grow, and they said it could cause me to go blind if I didn't have surgery for it, I went in.  I had the surgery and I came out and I was fine.  You know, I had my recovery, and at that time I kind of, the recovery was, let's see, it was radiation.  I did some radiation and just some basic recovery and I was back to, I feel after maybe like a couple of months I was back to work and doing everything I was doing prior.  And yeah.  It brought me you know, now I was going fine.  At that point. 

DOUG:  So that moment there was this initial scare with this diagnosis it was addressed medically and at that point do you feel like you are in the clear in that moment once you are back in the rhythm of your life? 

PHILIP:  I would say so.  And as a matter of fact, correction I was not working at Geico at that time.  I was working somewhere else for family residences.  Assisting with disabled adults.  That was at that time.  After going to my life and continuing and everything was fine, this is now years later, 2016 I'm going for my follow up because I continued to go to follow-ups, every six months, they started to push it out a little bit more.  Then 2016 out of nowhere this tumor came back and now they said it was sitting on my optic nerve and I had to go into emergency surgery that same day I found out. 

DOUG:  So just at that moment you weren't necessarily experiencing symptoms.  It was a routine follow up that you discovered that? PHILIP:  Exactly.  That's exactly what it was.  No symptoms at all.  They were asking me if I was okay, what was I doing that day.  I told them I played tennis this morning.  I went to work the day prior.  And I said you know, at that time I was with Geico at the time.  So now that's why I was like okay.  I really didn't understand.  So I had to go through the surgery and they took me into emergency surgery.  After coming out I recovered in the hospital and then I was released.  And now after being released, and at home recovery, maybe a couple weeks in I woke up one morning and you know, you are in your house and it's normal with the lights off, you know where everything is at so you are maneuvering your house and you are going, I went to the bathroom, I did my thing in the morning and that's when everyone was telling me, how come you're not saying anything to me and that's when I realized after I told them to turn on the lights they said it was on and I said I'm not seeing anything at all.  And that was definitely a scary feeling.  I think my knees buckled and I had to sit down for a little bit and just take everything in. 

DOUG:  When you had gone in for the procedure, and by the way if you are joining us right now I'm speaking with Phillip Duncan and Marcia Hamilton.  Phillip is a student at Helen Keller Services for the Blind.  Phillip at that moment that you realized you can't see anything, I'm wondering, just prior to that, when you went in for the procedure, was that like brought up as a potential outcome or risk of the procedure?  [inaudible] as a possibility? 

PHILIP:  You know, I do believe so.  That was always a concern just with the tumor of itself and the surgery, they always talk about that that was a possible result.  But, I mean at the same time, I kind of feel like I went into the first surgery and I came out and I was okay and I had the second surgery and I came out and I was okay and now I'm home recovering.  I don't think anyone was thinking during that recovery that you know, this was something that was going to happen. 

DOUG:  How long was it into the recovery, that day that you woke up? 

PHILIP:  I would say maybe two and a half weeks. 

DOUG:  And otherwise you hadn't experienced symptoms like that?  It was that sudden? 

PHILIP:  It was that sudden.  Afterwards, my family, my mother was here and she was pretty much the main person helping me the most.  And she called the hospital and told them.  They rushed me in, and after I would say after maybe I had one or two surgeries again after that, and they were able to get back some vision.  So in actuality, it brought me to where I'm at today and I'm thankful that I have some sort of vision. 

DOUG:  Can you describe now what your vision currently is?  Can you describe that? 

PHILIP:  I can make out distinct colors and objects.  But it's still very blurry.  So I am still considered legally blind like no driving and things like that.  But I mean if something is really close up, I can make it out.  Kind of like for example right now I know I am speaking to you.  I can see there's the image of someone but I can't see the details of it. 

DOUG:  Going back to that moment.  You've woken up.  You just realized you can't see anything.  You go through those couple procedures.  You get some of your vision back.  But what's it like now at that moment going back to post those couple procedures that you got back the vision that you have now.  What was it like re-entering your life and you know, describing what it is that you no longer felt like you could do and you know the first steps of figuring out how to move forward with that? 

PHILIP:  I will be honest with you at that moment, very scary feeling and I couldn't believe that I didn't have my vision or my vision was partial even after they got back some of it.  You know of course there's always the hope that I hope that it's going to come back and even when I had the surgery I was hoping that it was going to come back a hundred percent but it didn't.  And it was really hard to deal with.  You know, being able to see your entire life and then in you know, the flash of the moment it's like boom there goes your vision, it's really hard to deal with that sort of reality.  So of course there was a lot of rehab, and a lot of like, I would say like a lot of therapy. 

DOUG:  As far as going, like day one you know, what is day one like of like, I imagine, I'm just thinking from my own experience, I guess I'm in a little bit of a different category because I have been speaking to people at the Helen Keller Services for the Blind and the National Center for a while but if I go back prior to having any connection to the community I certainly wouldn't know where to turn or what to do.  How did you start to even learn about where to seek help. 

PHILIP:  I would say for me personally, I don’t know what to do or where to go.  And I was very thankful that my mother was there at the time.  She was a nurse so she had stopped working and she was pretty much there helping me throughout this entire process and she pretty much reached out too and did some research and reached out to Helen Keller and found Helen Keller for the blind and set it up where I was able to go and meet with them.  I met with my commission counselor Addy Hampton who set me up with everything.  First was vision rehab where I had a specialist Lisa, she's great.  Her patience level is amazing.  I have to put that out there because it wasn't easy dealing with me and my emotions and some days wanting to do more and other days wanting to be left alone. 

DOUG:  I want to pick up there in just a moment.  Again if you are joining us now we're with Phillip Duncan and Marcia Hamilton, Phillip is taking us back several years to where he suddenly lost his vision after a brain tumor procedure and those initial steps of reorienting to the world.  We're at the step where you are just starting to learn about those services.  Marcia, now is a good time.  Can you just give us an overview from the organization's services side of what it's like to have someone like Phillip at that moment in time coming to the organization, having just gone blind and learning about kind of like how to move forward?  Can you talk about the structure of the organization and how you field those people. 

MARCIA:  Sure.  He mentioned that his mom contacted the New York state commission for the blind.  And that's the first step.  And I have their phone number where they can be reached if anyone needs that service.  That's the first thing.  You are assigned to a councilor.  He had Addy Hampton.  She reached out to Helen Keller.  There was vision rehab, we had Lisa Carson who he just mentioned.  She's so patient, can you imagine not being able to move around in your own space or environment?  So there's vision rehab.  After that we have orientation and mobility.  That's with Sherry Wheatley, another wonderful member of our team.  He had the opportunity to move safely within his home and his community.  After that process we have adjustment to blindness with Lasergy and Alana.  Getting comfortable with this new norm.  Phillip will tell you what happened after that.  Because based on the place where he is at emotionally, maybe they're ready to get back to work.  They'll be introduced to [indiscernible] ATC, another program I will speak to later on.  But the first step is starting the process of being able to now live in this new environment.  So it's vision rehab, orientation and mobility and then adjustment to blindness. 

DOUG:  Thank you so much for that overview.  And again for those watching right now feel free if you have any questions, write them in the comments section and we will try to address them throughout.  So please feel free to ask any questions you might have whether it's personal questions for Phillip and his experience or more services questions for Marcia, we're happy to answer questions that you might have.So let's go back to, we're now at step one Phillip, you were walking us through your personal experience of step one.  I imagine that you know, from a little of the conversation we had the other day I understand the entire world it's a completely different experience at this moment when you are learning to readjust essentially to almost like an entirely new world.  That first step, you know I imagine just being in your home and navigating your home, can you kind of take me through that experience of what it's like to relearn your own space before you even go outside. 

PHILIP:  Yes.  No problem.  So I would say that in home experience was, it was tough, you know.  I had my mother, who was a nurse, and she was trying so hard to help as much as she could and trying to get me acclimated to being at home.  And it was still tough.  You know, having that, such a major loss of vision and walking into things, learning how to cook, to use the bathroom, just everything.  It was tough and I was glad that she took that step and reached out to Helen Keller.  Because meeting with Addy and her setting up these services and just everything in general, she was just great.  And then the first step like I said was with Lisa Crossen and Lisa came into the home and she was definitely the rehab specialist that kind of helped me get acclimated to being at home again.  And it's actually, it was amazing when I think back to it now, because it's just like little things that you wouldn't even think of that made such a big difference, you know?  She definitely maneuvered and showed me where things were at and gave me a mobility cane and we did a lot of mobility training in terms of that, using the cane and as far as now like using appliances in the home, something simple, she put these little sticky bumper dots on things that you wouldn't think of something on the microwave that showed me the stop and the start button.  Same thing with the stove.  And just basic things that just made me get acclimated again to being at home and getting adjusted to life as a blind person. 

DOUG:  Were there any other specific details other than the bumper dots on certain objects or appliances, did you like reorient your home in any different way or did you set things up differently in your home as you were kind of relearning your space? 

PHILIP:  I'll be honest with you.  She did recommend maybe things can be moved around, but my mother was kind of a stickler and she said no so you know it was just a little more training to have to go into that. 

DOUG:  That's fair.  There's always the interpersonal dynamics too right?  Not just when you are talking about a space and multiple people living there, there's always a negotiation no matter what the situation. 

PHILIP:  Yeah.  So yeah, it wasn't too bad.  Things were okay.  I mean as far as my personal space, I was able to move things around and adjust it but for the major house appliances and rooms, those pretty much remained the same.  So as far as just a little bit of detail in terms of things that she showed me is something like cooking.  There were different cooking utensils, maybe something like a double spatula, like a thing to but on both ends it was a spatula.  That was helpful in terms of cooking.  Another thing that was good was, here's like the, I don't know what you call it but it's basically like a little stick with a hook on it that allows you to pull the oven rack in and out.  And that was something that was so simple but was so helpful at the same time.  And my personal favorite was this little sensor.  Now the sensor had two metal hooks on one end and that hooks on to the cup.  And as you pour the liquid into the cup and it touches the sensor it notifies you, it beeps.  That helps especially when you are dealing with making a cup of coffee especially.  So those were really little things for people that may not have vision issues but for somebody with vision issues, that's a very big help. 

DOUG:  Right.  I'm going to some of the questions.  The first question is from Judith.  It's a two part question and we'll focus on the first part now.  The first part of the question is Phillip how long did it take to adjust mentally and emotionally after the initial shock of losing your vision?  And speak a little bit more on if that's still part of the process for you. 

PHILIP:  To be honest with you, adjusting to it, it was, I don't feel like it took me as long as you know, as maybe the statistics say.  I mean I had a really good support system that was pushing me and that was a really big help in terms of that.  Plus for me and myself and the type of person I am, I wanted to get back out there and work.  And you know I was in the process of doing my masters.  I wanted to try to get back and see if I can get into that, get that done, which that's still a process getting to there.  But you know, as far as getting to this point where I'm at Helen Keller and being able to maneuver the computer and all the different things they taught me was, it's been amazing.  And I know for others looking in and seeing that they're probably thinking wow it took me, you know for me to get here, and I know for everyone it's different but for me I had a really good support system. 

DOUG:  As far as that support system specifically what was the core of that support system. 

PHILIP:  The core of my support system was definitely my mother.  You know, for her being a nurse and working and she stopped working to stay home and be with me 100†percent.  After everything in the hospital with me losing my vision, they talked to me about possibly going to like an agency where I would be living and getting the support that I needed.  And my mother disagreed and she said that she is going to be there and my family is going to be there and they're going to help me as much as I can.  She didn't want to put me in that position and I really appreciate that. 

DOUG:  Uh-huh.  I have another question here from one of our viewers.  The question is for Phillip.  Do you feel any of your senses have sharpened because of your vision loss? PHILIP:  Absolutely.  My, definitely with the vision loss I'm going to say my hearing is amazing.  I mean I thought it was but definitely when I actually went to the doctor and I had a hearing test, the, one of the doctors told me that he's been doing this for over 30 years, and he said he can't, he said I have Apple like hearing.

DOUG:  Wow! 

PHILIP:  And it is.  Pretty much in my house my room is in he back of the house and I will tell you I can hear when people pull up and their car doors are closing before they even come to the door.  So I would say the hearing is amazing. 

DOUG:  Another question we have here, let me see.  Oh the question is from Barbara.  What were you studying for your masters? 

PHILIP:  My masters, I was studying public administration.  I got my bachelors in that.  The concentration field was information management.  I was working with public administration and going to John Jay at the time which I got my bachelors with them, I started to do a little work with them and then I positioned to Excelsior College. 

DOUG:  So we talked about reorienting and we're going to hold for one moment for an interpreter switch here.  Great.  We're all set there.  Excellent.  We talked about the ways in which you had to relearn your own space.  And you know, before, I would love to talk about getting outside of the house and navigating the world outside of the house but before we move there Marcia is there anything that you want to comment on the services side as far as kind of that first step of relearning your own space. 

MARCIA:  I think Phillip spoke so well to that.  We actually have someone that comes into the home to get the person rehabilitated in their own environment.  After that then we move to orientation and mobility, which is now focusing on helping you to move safely outside within the community.  So that's the next step.  So we're building, putting the building blocks down to independence.  So it's starting at home, the community then we're going to move into other services which will involve vocational training, foundations which is really a holistic work program which is going to concentrate now on self-career exploration and other areas.  So we're ensuring that our students are completely prepared for the next step in their life. 

DOUG:  So let's talk about now that next step of getting out of the house and readjusting to life outside of the house.  Phillip can you kind of go back to kind of those first moments of you know, relearning the outside world and what your experience was like? 

PHILIP:  That experience, it was, it was really an emotional experience to be able to get back outside and now start maneuvering around and getting used to my environment now from a different look, you know, without having my vision and I would have to say that was also Lisa Crawson that helped me with that.  So from the vision rehab in house we then transitioned to the mobility aspect, and we started to do a little bit of things outside.  She showed me how to use the cane and the walking cane and navigate the stairs as well as we took some walks around the block.  I mean, it was really simple things.  It was simple but it was very helpful.  And then from the walking up and down outside and maybe the backyard and the stairs, then we actually started to transition into other things like going to Helen Keller now.  And now I'm actually coming inside and meeting with everyone there and taking the SCAT Bus.  So it was a heavy experience for me, still it still kind of gets me.  You know at that point just when she said we were going to be going outside I was like wow I can't believe I'm getting back to this point you know, after so long of being between the hospital and home and all this rehab now I'm to this point where I'm actually going to Helen Keller.  It was a good experience. 

DOUG:  Did you feel as far as like when you are starting to navigate, you are now at this point you've learned how to use a cane and you are navigating the outside world.  I'm wondering what it's like to cross the street for the first time and not being able to necessarily see the traffic coming.  Do you feel at that point that you are confident and like really know how to do that or is there still initial fears of what if a car is coming and things like that.  What is that like? 

PHILIP:  I will be honest with you even after all this time I'm still not comfortable crossing the street.  I have all of the teaching towards it and Lisa showed me and just to, you know especially you are using your senses, you are listening and the lights, it's still tough because you never know.  You know, even though it may say the light is red you don't know if someone's running the red light or if someone's riding a bike so you never know what's happening.  I am still a little uncomfortable with crossing the street so I try to limit those environments where I have to cross the street.  It's good when, now personally it's good taking the SCAT Bus because they take you to and from your destination so it limits you having to walk and cross the street in terms of that. 

DOUG:  Just to clarify, you are saying that's called the SCAT Bus? 

MARCIA:  It's transportation. 

DOUG:  Can you describe for those who aren't familiar what that is? 

PHILIP:  So the SCAT but for Suffolk bus, it's SCAT, it's basically a bus for people with disabilities or maybe the seniors, things like that.  It's not too bad.  They take you to and from your destination.  Now, that's specifically only for Suffolk County.  I believe Nassau has their own ride service called Able Ride I think the boroughs have Access-A-Ride. 

DOUG:  It's one of several different transportation services depending on where you are located. 

PHILIP:  Yes. 

DOUG:  I have a question from Matthew and it is for Phillip.  Do you welcome assistance from people you don't know where you are outside, in stores, et cetera or is that uncomfortable for you? 

PHILIP:  So it depends on what type of assistance.  I mean of course you have people that want to try to help you, oh take my hand and let me walk you to the aisle.  That I pretty much, I try not to do that too much.  But if someone is guiding me and tells me you could follow me to maybe like the deli section, I can do that.  I can see the image.  I would tell them to walk in front of me and I would just follow them that way. 

DOUG:  Is there ever a time where you are crossing the street and someone kind of like unprompted comes up and like without necessarily asking kind of helps you?  Does something like that ever happen or is it usually someone or how often does someone even ask you if you need help unprompted I'm wondering. 

PHILIP:  I guess it's based on where you are at.  I've had it a lot.  Someone asked me to help, but as far as people just doing it, I haven't really had too much of that, someone just helping me without asking.  Most of the time people will ask.  I feel like they're kind of nervous to assist in that sense.  So I haven't really had too much of it.  But people ask, and I feel like the community, they're very open to helping you especially when they see the cane, they see you maneuvering, they're very willing to, oh let me assist you with the door or maybe getting something off the shelf at the grocery store.  So I've even had someone helping me put groceries in the car not thinking my mom was in the store, they were helping me to load the groceries.  So it all depends. 

DOUG:  Let's go to, again, we walked through what it was like to first lose your vision, to have that first step of people coming into your home and helping you re-navigate your physical space, then the next step of mobility, getting outside, learning to use a cane and navigate the world outside.  Now we're at the step of you coming to the center.  I would love to go to you Marcia to describe what that step is. 

MARCIA:  We have a adjustment to blindness.  Here we're helping the individual emotionally, sometimes in a group or sometimes individually.  Talking about how you are handling your adjustment.  We have social workers who are equipped and ready and extremely caring and patient to help you through this process.  After that we have a program called Foundation which is structured to concentrate on self-exploration, career, for example, Phillip was in the middle of school.  So more than likely if he wished to go continue on to college based on whatever the needs are, we have services where we start preparing them for that.  But the main thing is to help the person to become self-aware, to get ready, are you going to go back to work?  Back to school?  Just to be able to live life normally.  So we have these services in place at Helen Keller services for them. 

DOUG:  Phillip described that you had a really good support system anchored specifically in your mom.  I'm wondering Marcia from your side of things, I'm sure you get quite a spectrum of people coming in, where they're at emotionally and the support systems they have, can you give us a sense of people who may not have as strong of a support system as Phillip initially and what that is like fielding those people as well? 

MARCIA:  First of all Phillip has a counselor, a Commission for the Blind counselor who is there with them every step of the way.  Providing all the services they'll need.  There's also a social worker assigned to them. So there's a lot of support.  So if you don't have personal support at home you can count on Helen Keller.  What I find is we become like a second family to our students.  They can call us at any time.  We have services for them, you know, just to make sure they have the support they need to move on to the next level.  This is what makes our program so unique and special. 

DOUG:  We're at the step where we've covered in home and mobility outside.  We're at the center.  Phillip once you started regularly attending what were you doing there and what were you learning and what was the continued education there? 

PHILIP:  So the first thing I did when I came into Helen Keller after getting some training at home was I attended this group called Adjustment to Blindness with Alana Corone and Liz Surgy, I believe they're the social workers.  They were great as well.  Very helpful.  And basically that, it was, it wasn't a big group.  It was a small, small group, but everyone was getting adjusted to losing their vision in whichever way their situation took them.  And it was good hearing other stories and hearing how everyone else was dealing with it.  You know, or maybe the challenges someone was having and it gave you, gave me motivation to say you know what?  My situation, even though it's similar at least I have some vision, you know.  Maybe I have a little bit more vision.  Excuse me, than others.  So it was a good group.  They also gave us some skills you know, toward helping us to cope you know, emotionally especially. 

DOUG:  So in addition to the services being provided there, there was something kind of like a built in support system meeting other people in a similar situation as you and getting to connect with them? 

PHILIP:  Exactly. 

DOUG:  On that note I'm curious, I imagine now at this stage of our conversation it's still fairly fresh, fairly new for you but you've also gone through some stages and acclimated a little bit more.  But I'm wondering what is it like with former relationships that you had with friends and people in your life prior to losing your vision and then at this stage?  Do you feel like a lot of people, like you are still close with some people or do you feel like it was harder for you to connect afterwards or how would you describe that experience? 

PHILIP:  You know in terms of friends and family, I mean I still connect with some people.  I feel like the relationships, some of them are a little more distant and I think that's just based on the, maybe the educational aspect of them not knowing how to deal with it.  And I think that's the hardest thing for them per se.  But I still try to connect with old friends and distant family members and you know, but the relationships, some are there.  Some are not.  It's definitely, I would definitely say it's not the same, though.  It's not the same.  It was kind of, some of them I felt like you know it was even like, what's the word I can use?  Like basically like starting a relationship all over again you know?  Them getting to know me and me just explaining to them that you know, me losing my vision doesn't change who I am.  It just changes how I look at things. 

DOUG:  Uh-huh.  Have you felt times where you really needed to like, make almost make other people feel comfortable with your, like, you know, being blind, people who knew you before that, like do you feel like you've had to speak to their discomfort almost?

PHILIP:  Absolutely.  I would definitely say some people I've had to make them feel more comfortable than me getting comfortable with it. 

DOUG:  So you know, Marcia please let me know if I am skipping any steps but I'd love to get to the part where your class and Phillip being a part of your class.  That's obviously your direct connection to each other.  Could you tell us in detail about what that class is that you are an instructor for and walk us through that. 

MARCIA:  Sure.  And before I get to that let me interject here that Phillip mentioned the groups.  I was blessed to get a group of students from that group Foundation where they all met in the group where they work on adjustment to blindness and they have such a tight bond, that they're like family.  So it's amazing to work with this group of people.  They care so much about each other.  Lunch time they have it's like a pot luck meal at lunch time.  So it's amazing the relationships the friendships that have developed out of this program and especially out of a program called Foundation, which is the program where they're dealing with social aspect of their lives and getting ready for vocational skills.  Out of that group I inherited the most amazing group of people and they're now in a program called TEAM, technology, employment, achievement and mastery, a work readiness program where they gain computer skills, skills that prepare them for the world of work.  It's amazing.  They're a phenomenal group of people.  Even during this time of corona we're having classes on Zoom.  You can understand.  We're just using audio.  And they do not miss a session.  We're having an amazing time.  They're so motivated and hard working and I have all the confidence in the world that they're all going to go off to work at the end of this program. 

DOUG:  That's amazing.  Obviously it's hard to have a conversation these days without talking about COVID.  It's obviously affecting all of us in every aspect of our lives.  So on that topic, Phillip if you would like to start, how has COVID affected your life personally and also in the context of being in class. 

PHILIP:  So as far as COVID I would say personally and in class, I mean just connecting the two, I would just say it mainly affected me by just being able to get out the house.  Being able to go to program two or three times a week and attend this TEAM program as well as the friends they met at Helen Keller and became close with, we also get together from time to time and do different things.  And that's from maybe bowling to just having dinner, or you know, so I would just say in that aspect.  But as far as the being at home aspect, it's not affecting me too bad because it's the norm for me, you know.  I'm at home most of the time aside from just dealing with Helen Keller. 

DOUG:  So it's mainly just actually physically attending the center and those occasional meetups, those social meetups are the primary things.  And Marcia you were just talking about this but what has it been like having to move everything on the services side and you mentioned that everyone is not missing a beat and adjusting well but is there anything you have to say about having to pivot everything virtually or anything else around that topic. 

MARCIA:  It was a major adjustment because in the beginning we basically just had to do reviews to make sure everybody was acclimated to a whole new environment, Zoom, not having an instructor with you in the room, using your voice as a guide to guide you through the lessons.  But just the camaraderie of the group having everybody in the class.  Sometimes we forget that we're not in the same room because we have the same kind of interaction and fun that we usually would in the classroom.  It's been amazing.  We all look forward to the days when we have our classes.  We get together in one huge virtual community. 

DOUG:  I'm glad to hear things are going so smoothly for you because in general I hear a lot of hiccups, I am glad it's going smooth for you. '

MARCIA:  So far we've not had any problems. 

DOUG:  I don't want to jinx you there.  Glad its going smoothly.  That's the beauty of technology and how it can assist and things.  I know obviously technology Phillip I'm sure has served your process.  Is there anything you would like to talk about around technology or certain technology that you use now that you weren't using before?

PHILIP:  I would say definitely technology has been great.  I mean I was always good with the computer and using the phone, but now pretty much just, well, dealing with Helen Keller, they showed me how to use a lot of the assistive technology and the different, there's so many different tools.  There's like for me what works best with me is Zoom Text and there's JAWS as well as Fusion.  There are different things you can use as far as the computer-wise that can assist you in that aspect.  Then for everyday use is mainly the phones.  You know, prior to joining the TEAM program with Marcia I was in Foundations with a couple of instructors and they brought in some individuals from like maybe, that deal with android as well as Apple and they talked about using the smart phones and the type of technology that's already pretty much built in.  Now, for someone like me that doesn't really you know, like I have some sort of vision I would say, I find it easier just using like the Google assistant or maybe just like I have a Samsung so they now have their own assistant called Bixby.  So between those two I am able to navigate with my phone and tell the phone what to do in that aspect.  So the smart phone is what I pretty much use for everything and then aside from that, I still have my computer. 

DOUG:  Right. 

MARCIA:  Doug there's a very important step they missed.  After Foundation we have ATC training and ATC is what Phillip was referring to just now where we're introduced to adaptive technology that they can use.  He mentioned Zoom text and JAWS, so of course that's another training that's also done at Helen Keller to make sure that you are able to use your computer, your iPhone, android, it helps you identify what is best suitable for you based on your particular need.  We have an amazing instructor Joe Danera, quite a few of the students in my group were his students before they came to the TEAM program. 

DOUG:  As we move into the last few minutes of our conversation here we really did a great job of walking through step by step this process.  But now that we've walked through the entirety of the process, do you want to take a moment to reiterate you know all of those steps together so that we can just put all those pieces together that we've talked through. 

MARCIA:  Sure.  So if you need Services for the Blind the very first thing we need to do is reach out to New York State Commission for the Blind and other states have different ones.  In New York the office is in garden city.  (516)564-4311.  After that you refer to Helen Keller, and at Helen Keller based on your particular needs, that are varying services that you will be provided with.  Our office in Hempstead you can reach out to our director there.  516-485-1234, extension 6606.  Of course, just like Phillip, you will have someone come into your home to deal with vision rehab where you will get bump dots and special equipment that will help you to maneuver using the devices that your, appliances in your home.  You will have orientation and mobility services where you will learn to move safely within your home and also within the community.  You will of course learn how to get to Helen Keller where you will start working on adjustment to blindness with our phenomenal social workers Liz and Alana.  If you will need to learn to keyboard which is vital, we have keyboarding classes which are taught, we have different instructors who will teach you to keyboard, you need it before you get into Foundations and TEAM and ATC which is a big part of the process before you get into any kind of work readiness program.  So that's basically the steps that are involved and the services that we provide.  If I have forgotten any be sure to go to our website and you can see what we have to offer, wwwhelenkeller.org. 

DOUG:  Thank you for walking through that.  I think it's helpful to hear all the pieces together when you articulated so well there.  So with our last couple minutes here, I have two questions for you Phillip.  First, what are your goals for the future? 

PHILIP:  Wow.  Well my goals, my major goal is to get back into my masters program and see if I can continue and finish that.  I know I had a couple courses left in that prior to me losing my vision.  So that definitely is a goal.  And then of course getting back out there and working you know.  I worked for a long time.  I worked from since I was 13.  I started off doing summer programs and then as I was 18 I pretty much started working full time and throughout my high school and college career I worked.  So just getting back out into the workforce is definitely my biggest goal now. 

DOUG:  And the final question is, you know for anyone who is maybe watching now or someone that might come to this conversation later who may be in a similar boat to you.  Maybe they're in the early stages of losing their vision, what advice or what would you like to say to them directly, specifically to those people? 

PHILIP:  Well, the best advice I can give to anyone that is losing their vision or having any vision issues at this time, if I could, if I had, if I was in a situation where I was having vision issues, I would definitely have reached out and started getting some sort of assistance prior to it, prior to me losing my vision completely.  But I mean for me I know my situation is different and it was kind of just sprung on me.  But definitely if you are having vision issues, don't be afraid or ashamed in any way.  Reach out.  There's help everywhere.  You know, you have a lot of options out there, and definitely if you are here you can reach out to Helen Keller.  There are a lot of different things that can assist.  It could be something as simple as maybe you just need a stronger prescription or going as far as to say coming in to Helen Keller and getting the assistance that you need.  But don't be ashamed.  There's assistance out there. 

MARCIA:  I think you muted yourself. 

DOUG:  If you could say that last couple of sentences if you want to just say the last couple of sentences. 

PHILIP:  Definitely if you need the help, it's available.  It's out there.  Don't be ashamed.  You know, there's no shame in getting assistance.  You know, I'm seeing it now.  I was always the type of person that never really needed help to do things.  I could always handle it on my own or I will find a way.  Now, pretty much it's okay to accept help.  You know.  Especially if it's going to get you to the next step in life. 

DOUG:  That's a really great message and definitely a perfect message to end this episode on.  And I think you know, that certainly applies to specifically to the sudden blindness that you experience said or anyone experiencing vision loss and I think it's a resonant thing for everyone who is collectively dealing with a world that has changed and not being afraid to reach out if you need help.  Sometimes we're gifted with a support system and sometimes we need to be more active in seeking it out.  So on that note, thank you so much for joining us today.  Again, thank you so much to Marcia Hamilton from Helen Keller Services for the Blind for joining us and filling in the details of the process, the steps of the services that the organization provides and for Phillip joining us today and I really want to thank you for speaking so openly about your personal experience.  I think that really it's the honesty and openness with which you tell your story that not only resonates with people who are going to watch this and who are watching live but also I think what really helps anyone who is coming to this who might be in a similar position to you so thank you so much for sharing in a really open and honest way.  Thank you to our interpreters Jamie and Erin and to our captioner Laura.  And that concludes episode three of feeling through Live and we look forward to joining next week.  Again anyone who is watching, if you have questions that you weren't able to ask during this broadcast feel free to write in the comments and thank you everyone, I look forward to coming back next week.

Feeling Through Live • Episode 2: Life Inside a DeafBlind Residence During COVID.

DOUG: Hi. Welcome to Feeling Through Live. My name is Doug Roland from The Feeling Through Experience. I'm joined with Richard Pierre and Tanisha from Destiny Home, a DeafBlind residence in Long Island and today we'll be talking about how life there has changed since COVID has been happening. Before we go into that a quick intro, for those of you who caught our last episode Feeling Through Live is a weekly broadcast. Right now it's on Fridays. We might investigate adding other days in the future but Fridays 11:00 a.m. Pacific time, 2:00 p.m. Eastern Time where we're hosting a list of topics that pertain to the DeafBlind community and beyond. We're very focused now on topics that pertain specifically to what's happening with COVID since that's a timely and important issue to discuss. So without further adieu, Richard is the supervisor of Destiny Home. If you can give an overview of what it is for those who aren't familiar.

RICHARD: Destiny Home is a group home on Long Island that houses dual diagnosis of deaf and blind. Some of our clients do have vision which two of them do. Five residents here, three girls and two boys. The three girls have no vision. They live here and go about basically life just like everybody else. They go to work, they don't have school but they have chain building where they perform activity and learn new skills if need be. They have access to different technologies there, staff [inaudible] but our residents don't necessarily use those, just they're offered to them there. As far as the home, they engage in like I said almost everything else anybody else would engage in, just a regular day. Our staff here who are so amazing they help them with their daily activities, if they want to order things on line, go shopping on line, go to the bank, whatever it may be we're here for them but it's at their discretion, it's what they request. We don't try to impose anything on them as far as options. We give them options but it's always their decision and we just really like to provide anything they need that they ask for.

DOUG: A question for Tanisha, how long have you lived at Destiny Home? It.

TANISHA: First I wanted to introduce myself. My name is Tanisha Verdejo. I've been living here at Destiny Home for [inaudible] I have staff that work with me to go out into the community. I do go to work. I am employed by Helen Keller National Center. I supply all their vending machines as well as I do some portioning of soap for the laundry services, as well as I teach sign language as HKSB. I'm a sign language instructor and I do that with the help of my staff members. I go out, I do a lot of different types of activities every day. We go out to eat at restaurants, I go shopping. We're pretty busy. Just trying to think of what else I do. Sometimes, you know I really enjoy surfing the web as well as now with new technology I'm actually able to order food, get my groceries on line and have it delivered. I still commute back and forth to my family's home, so sometimes I go back to visit family just for a vacation. But unfortunately when I go to vacation with family I'm kind of bored. I don't have much to do. A lot of times I spend my time reading. I love arts and crafts. I make different types of pictures. And I just wish…Well, I always go out. I go out to hang with friends, socialize. Just to go out with my interpreter or SSP to check out things, explore new things I’m curious about. I do travel. I always go on vacation. Every summer I go on vacation And in order to do that a lot of times the staff members here will actually drop me off and then pick me up.

DOUG: Great. Well thank you for that really great introduction. You know, let's just hop right into it then. You've given, Tanisha you've given us a good overview of what life is traditionally like there. How have things been different over the last number of weeks since Coronavirus has been happening? What changes have happened to your life at Destiny Home over that time?

TANISHA: Really I didn't [inaudible] work. I have to stay at home now and I just have to stay here. I just have to just constantly be here.

>> Just getting some clarification.

TANISHA: So, I have staff as well as interpreters help me. My interpreters help me just, they interpret everything that's going on around me, what's happening on the news. I actually love watching the news and know what's going on in current events. So the staff here are able to interpret the news for me because I can't hear it myself.

DOUG: So another question for you Tanisha, you know ‑‑

TANISHA: But you know I'm still going out for my walks. I still enjoy working out so I get outside and walk around. I actually really enjoy going out for walks.

DOUG: So another question, during this time, you know there's been a lot of messaging around social distancing and not being able to touch each other. You or someone who communicates through tactile ASL so I'm wondering how that has affected your life or how you feel about a time where touch is being said to be not allowed but you personally rely on it in order to navigate the world and communicate with other people. What's that been like for you?

TANISHA: Right. For me it's hard because I can't really social distance because I am dependent on tactile sign language and to have access I have to touch that staff member. So I really can't go out and do things on my own or avoid other people. I know that's what's happening right now and they're telling me that you're not allowed to do that. But you know because they say people can get too close and now I have to do things a little bit more on my own.

DOUG: So question for Richard. From the staff's standpoint, you know obviously again we're being told across the country to stay at home. To wait this out for further information as this develops. But obviously at a place like Destiny Home staying at home is not necessarily an option or not the same decision to be made by staff who work there and support the residents that live there. Could you talk a little bit about what this time has been like for your staff?

RICHARD: For my staff I know that it's a big change. The days are a lot slower because of the fact that they're not going out to work and engaging in the activities like they normally do. Just like it's difficult for Tanisha because she's using tactile sign same thing for our class keeping social distance is literally impossible. The girls have no vision compared to the guys downstairs. And for precautionary measures we have a great nurse here who goes through all the guidelines because I believe there are updates every day and she's always updating and put on an in service. When staff enter the building we have a vestibule that they take their temperature from the moment they enter the house before they can interact with anyone. They are asked do you have shortness of breath, are you coughing, do you have diarrhea or anything like that. Not questions we would normally ask somebody but just to be on the safe side because we have clients here who are a little older, and we want to keep them as safe as possible. After those questions, the staff members goes and washes their hands, they don't touch door knobs or anything like that. After they wash their hands we give them a new mask every day because they wear them for 12 hours throughout the entire day and usually the residents don't always have their masks on, they don't necessarily like it but for precautions we wear them. That's one of the main things that's changed as far as entering work, something staff have never had to do before the steps before you can even start your work day. Then after that, as far as throughout the day like I said usually staff would go to work but because there's no work we're coming up with schedules, we finally opened up the track for your program, we're going to be going for walks there now. We recently bought patio furniture so the residents can enjoy hanging out outside on a nice day. As far as paperwork, not much paperwork to do for the staff because usually we would document what they did at work and how they did at work for the day but unfortunately that's not something we're doing so now we're keeping daily logs of what they did at home and we're trying to brainstorm on ideas together as to what they might want to do in the household during this time. We thought the COVID‑19 thing would be over by May, and first we thought April then May so now we're hearing June so we're trying to hunker down and be safe as possible. Staff have been very mindful to let us know if they've come in contact with anyone who might be positive. We have them stay on quarantine for 14 days, if they don't show symptoms they can return. We're trying to be as safe as possible because their safety is of utmost importance to us.

DOUG: We're going to take a quick paws to do an interpreter switch. For those of us who are with us who aren't familiar with interpreter switching it's customary to have interpreters switch off signing which is what we're doing right now. So are we set on each end for our switch? Yeah? Great. So continuing, thanks for breaking that down Richard. It obviously sounds like your team is taking the necessary precautions to be safe as possible knowing that you know, you can only do so much during this time. I'm wondering you know, has any of the staff expressed to you any sort of concern around coming in? Given what's happening or have you had discussions around that?

RICHARD: Fortunately honestly all the staff here, even the staff that are, we have backup staff, all staff are more than willing to come in. I guess they feel comfortable with the cautionary measures the nurses have set up. I haven't had a call out really. The vacations, they all cancelled vacations, they're all here for us. They're the real heroes. They have been here every day doing what they have to do taking care of the guys. I, no one has expressed like hey how are we going to, or I don't feel comfortable because I'm scared of getting it. All the staff have been comfortable. I have had texts from other people saying if you need anybody let me know. It's been a blessing how much the staff care for the guys. Some are willing to come in for extra shifts if need be. Fortunately we haven't had the need for that. It's even better than it was before COVID started happening.

DOUG: That's a great case of a challenge like COVID happening that actually in this case is bringing people together and really bringing the best out of your staff it sounds like which is certainly really amazing to hear and definitely want to recognize what a tremendous job it is that it sounds like they're doing over there and really commend them for continuing to do their work during a time where that's obviously a lot more challenging for a number of reasons so that's really great to hear that your staff has been so game to continue providing the services they normally provide and sounding like they're going above and beyond as well given the circumstances. That's really great to hear.

RICHARD: Definitely.

DOUG: From your standpoint Richard we're talking about the procedural changes that have been implemented to create as safe an environment as possible but are there any other really discernible changes since COVID has been happening you know, whether, please go ahead.

RICHARD: Okay. Besides procedural changes the main changes I guess are some moods, we have a fairly young male resident in the home and he is very savvy with technology and he likes to set up new clocks and stuff like that. He has an iPad, he keeps up with the news. Someone like him has become a little bit more aware of everything going on. He's become a little bit more reserved because he's afraid of exposure. Even when we first started wearing masks in the house. He was like are you sick? Are you sick? He shied away from staff and the residents but as of recently he's noticed that we're only wearing masks for cautionary reasons. He actually came up here a few minutes ago before we started and he came up to say hi to the girls and the female staff up here. I would say he went through a change as far as when it first started and now he's going back to normal to how he normally is. Now the other male resident, he's very adamant about going to work. Extremely adamant. He's very stuck on a routine. I would say for the month of March he had a lot of trouble dealing with the fact that he wasn't following his weekly routine of movies, IHOP. Every day he would wake up and not a tantrum but he would be upset with staff that he wasn't going to work. What we did that was different is we had to find ways to educate him on how Coronavirus is affecting the world. We had to show him pictures of like back in March we would show him pictures of what was going on in China. We were showing him pictures of body bags. It was a bid morbid but it was the only way to hit home for him to understand you can't go to work, I understand that you are upset but this is for your safety because if we take you out and you have underlying health conditions you are more at risk than everyone else. It took about three weeks for us showing the pictures and what was going on in the news for him to get it and understand that hey this is the situation that we're in. Now that he knows he can order IHOP and Dunkin' Donuts he's fine now. He has plenty of DVDs, we put on movies for him all the time and he gets movies on line so he's become more accepting of it. He may not be happy about it but he's definitely in more of a jovial spirit, he's engaging with the staff and his demeanor is becoming more amicable now.

DOUG: Tanisha you were getting at this earlier but what has been the most challenging part of, since Coronavirus has taken hold? What has been the most challenging part of that for you personally.

TANISHA: Not being able to go out. That's been a challenge. Staying home all day is boring. Staying in the house is boring and all of us, we want to go out but we can't. I stay home, we play cards. I read. Those are kind of the activities I do. I knit as well. I read on my iPad with braille. That's how I access it and that's what I do all day with my braille display. I'll chat with some of the staff here and we do funny kind of conversation and activities while we're here in the house. We also get food delivered that we've ordered as well. And I place orders over the internet and then the food is delivered here.

DOUG: So Tanisha, another question for you. I've read during this time that people from various disability communities but including the DeafBlind community are sometimes a little bit, even more concerned from a health standpoint when something like this is happening because there's a concern that you know, if something were to happen health‑wise that the communication with a doctor or a hospital might be more challenging, and there are certain fears around that lack of clear communication leading to more complications. Is that something that is a concern of yours personally or anything that you have had to deal with personally in your life?

TANISHA: No. When I normally go to the hospital, you know, I go with staff. I'll have an appointment and there will be an interpreter available. So, that's typically for all of my appointments I'll have an interpreter at the doctor's office.

So again, I will go with my staff person, an interpreter will meet there and we'll use tactile communication at the appointment.

>> Just getting some clarification here.

TANISHA: To communicate I use tactile sign. And sometimes I can use print on palm which is abbreviated POP. That's when someone writes information on your hand they write out the letter so I can get information that way but I really use tactile sign language mostly so writing with print, I can't access print visually, so if there was a piece of paper that I was given you can use print on palm to give me information or tactile sign language so that I can access it.

DOUG: Richard.

RICHARD: I don't think she understood the question. As far as, I can help with her answer because she only gave you an overview of how appointments went prior to corona. A lot of appointments have been cancelled because doctors aren't necessarily seeing too many of their patients right now because of the COVID‑19. Fortunately our nurse is amazing and she's been keeping up with all of the appointments. She speaks with the hospital their primary care physicians are. She does updates with them. She did one yesterday over the phone. If there were changes of course those hospitals would have to open up so that they can see their patients. But we've been blessed that the guys have had great health for the time being. Some are losing weight because they haven't been going out to eat. There hasn't been much change in appointments because the fact that they're not going there in person.

DOUG: I see. Another question for Tanisha. You said you have been at Destiny Home if ever quite a while now. Can you tell me about how life has changed being in Destiny Home as opposed to how life was before you were at Destiny Home?

TANISHA: I have been here for 10 years. And the interpreter is just going to finish the question.

>> We're pausing for interpreting to catch up here.

TANISHA: Staff have let me know that things out in the community are closed, that I need to stay home and that is one way my life has changed because of COVID. I can't go to work. There's nothing to do there. There's no work to be done.

>> And interpreting just needs to re‑clarify Doug's question.

TANISHA: Before I was a part of a program called FAGES. There was a lot of hearing people part of that program. I was the only DeafBlind person. It was difficult to communicate. It was really difficult to communicate in that program.

DOUG: So could you speak more about what has been different about now being in Destiny Home versus the previous residence that you were living at?

TANISHA: There was really no similarity between Fages and Destiny Home. They are very different. Fages really there's more hearing consumers there a part of that program. I was the only, I was the first actually DeafBlind person a part of that program. And again that was quite sometime ago. I really didn't like that program because it was such a challenge to communicate because everyone there was hearing. So there was just, communication was just constantly unclear and would constantly break down because there was only hearing people there that didn't sign.

DOUG: I see. So it sounds like Destiny Home and the services they provide are a lot more geared toward helping you and living, having you live a more enjoyable life than your previous home, is that correct?

TANISHA: Yes. I really enjoy Destiny Home. It's much better. I have access to communication through tactile sign language. Again, as I said, Fages was a challenge for me because of communication.

DOUG: Tanisha I'd like to talk a little bit more about your employment. You were telling us a little bit about it before. I would love if you would go into a little bit more detail about when you are able to work, what work do you do, tell us a little bit more about that.

TANISHA: I work at the Helen Keller services for the blind. And I teach sign language. I teach sign language to their hearing staff and to their consumers. And I make sure the class is fun and enjoyable for everyone. The staff and the students learn sign that I teach them. And again, they're all hearing. I also go to the Helen Keller National Center where I refill the vending machines with soda, I check the vending machines, I collect the money that's in them, I give the money to the accounting department. I also make sure the soap dispensers are filled, if they're not I refill them. So I do a lot of stocking type work.

DOUG: There are, I know something that's important to the Helen Keller National Center is employment for the DeafBlind community. And I know that there's a lot of people who may not be familiar with the DeafBlind community that would make assumptions around the community not being able to do, to be able to work or do jobs that you are describing so I think it's really great that you are able to share your personal experience so that people that might not be familiar with the community can hear directly from you what it is you do for work and the many things that you like to do throughout your day. Tanisha, can you tell us a little bit more you mentioned your hobbies and other things you like to do. Can you tell us a little bit more about how you like to spend your time on an average day?

TANISHA: I enjoy being busy. I enjoy working with my hands knitting, reading, going on the internet and different sorts of things like that. I also like to make collages and decorate and be crafty. I also like to make cards, where I will draw things and then I will send them to family and friends. So those are some of the things, I really enjoy giving people things for their birthday or when they retire or what have you. So I like to make sure things are decorated and giving nice things to people I know. I also love reading Harry Potter. I love it. I can't get enough. I love reading it on my braille display. I connect my braille display to my iPad and that's how I read Harry Potter.

DOUG: I get made fun of all the time because I've never read Harry Potter. Everyone says I'm really missing out so you are making me want to start reading it.

>> And Richard signed that Tanisha is smiling under her mask.

DOUG: Thank you Richard for clarifying that. You are doing the right thing wearing masks.

RICHARD: I can see it in her eyes. I see a big smile.

DOUG: Richard, a question for you: You know I'm wondering if you could talk a little bit more about how long you've worked at Destiny Home and if you have had any prior experience with the DeafBlind community before working there.

RICHARD: Honestly I've only been working at the Destiny Home for eight months. I started off as assistant manager and within two months I got promoted to the supervisor. The only experience I have with the DeafBlind have been my great grandmother she was blind. The oldest I got to see her till was five or six so I wouldn't say that was real experience but I do have experience working in the OPWD field, I've worked with multiple different diagnoses. I worked at the center of developmental disability where there was a range of disabilities then I focused on CP for nine years and then I started working with autism and then I ended up getting an RBT license doing therapy, and I did that for four years and during that time while I was doing like independent contracting through that I found out about Helen Keller national because it was in the field of OPWDB and I didn't enjoy independent contracting, I preferred to work for a company. I was blessed by Laura [inaudible] and she gave me an opportunity for a management position and I did everything I could to prove to her that I was capable of handling it. I picked up the sign fairly quickly. I'm not fluent but I can hold a conversation and can understand people who are speaking to me. I will have the staff assist me because I also have deaf staff such as Raiza here. She's deaf and communicating with her, they prefer me to use ASL instead of spelling because they want me to become more familiar with it so I have another staff, Natalya, she's one of our hearing staff that has been very good at assisting with interpreting for me. She teaches me a lot. There she is. This is Natalya one of our other staff will.

>> Hi! And this is Raiza the deaf staff interpreting for Tanisha here. So the staff have assisted me becoming familiar with sign. No one has been hesitant to assist anyone else as far as if you don't understand something. I do have a staff member coming in shortly who she's the main staff members who says do not spell! You have to learn ASL. It's become a point to learn the ASL and make sure I can communicate with them on their terms so they get the sense that I actually care about what I'm doing and actually care about their community.

DOUG: And on that note you know as someone who has been at the Destiny Home for eight months now, obviously, you know, you work very closely with everyone there. I know there's only five residents there so I'm sure you have a lot of personal contact with everyone that's there. What have you learned about the DeafBlind community or what's your experience been like acquainting yourself with a new community over time.

RICHARD: That's been very, it's not challenging but it was very new to me. The fact that I can't necessarily wear dark clothing so if they have low vision that they can see what I'm signing to them against my clothing. Another thing is being sensitive to the fact that being that I'm someone who grew up around speaking and hearing people at times when you are having a conversation another staff might come in who is speaking staff they might interrupt staff who are signing to me not knowing we were having a conversation, you have to be mindful of those things to avoid being rude or feeling like you are discriminating against. Even far as contacting management it is not just about calling. Some staff need to video call or text. It was so different to me because if I needed staff I would try to call them and wait a minute, what am I doing? They can't pick up the phone and answer. I would have to figure out different ways to communicate with them and which ways are preferable for them. There's a new app for Sorenson, it allows video chatting 24/7. There's always an interpreter there. We'll probably be implementing that for staff and I so if I need to communicate something to them via phone and text wouldn't be the best way that's probably something new we'll be implementing. But as far as for me as I said I've work with so many different diagnoses as far as disabilities I'm open to learning. It's never a culture shock for me dealing with different groups of people and communities because everybody is different all over the world and you have to be mindful to respect their customs and stuff and just be as respectful as possible for the most part.

DOUG: Well said. Well, we have about a minute or so left here. Before we part ways, Tanisha, is there anything that you would like to say before we wrap up our conversation today?

TANISHA: Yes. I always love being with my staff. I love all their help. I love chatting with them. I love that they give me information about what's going on out in the news and in the world and they come to work to help me. They can communicate with me and help take care of me and you know, communicate and chat with everyone. So I really have to say thank you to them.

DOUG: And Richard, before we conclude this conversation is there anything that you would like to say.

RICHARD: The main thing I would like to say is that although I'm the one in the video I feel my staff should be on the video. They are amazing. I can sign and interact with the residents just as much as they can but in all honesty without them what I do wouldn't even matter. I think that everyone should be aware that the ESPs and all the life coaches that are out there right now during this COVID virus they should be praised just as much as nurses and doctors because if they weren't coming in to work who would be there for these guys and that would be a horrible situation if they were left out by themselves you know what I mean? I can be gone for a month and the house would still run. I have no words to express how much I appreciate them.

DOUG: Thank you so much for stating that and thank you both for joining us today for this conversation. I'd like to extend my thank you to the rest of your staff as well for the amazing job that you have told me they're doing. And as you just put really beautifully, what they're doing is so important, and you know, though it may be cliche to say it's very true but those are the real heroes during this time, people that are out on the front lines so to speak providing really necessary services. And quite frankly taking a risk to do so but one that obviously has a great reward and is very necessary to many people. Tanisha thank you so much for joining us today and sharing your experience. It was really nice to meet you and I hope I get to speak with both of you again soon.

TANISHA: Thanks for having me. It was very nice to meet you Doug and thank you.

DOUG: That concludes our second episode of Feeling Through Live. Again apologies for the technical difficulties. I will certainly be having another long correspondence with Zoom to figure out why that's happening but we'll continue to provide these conversations on a weekly basis so continue to follow our page for new conversations. They'll be every Friday and we might even be incorporating some other days as well. Thank you so much as well to our interpreters and our captioner for making this accessible and we look forward to bringing you another episode next week. Have a great weekend. Bye.

Feeling Through Live • Episode 1: DeafBlind in the time of COVID

DOUG: Hello. My name is Doug Roland from The Feeling Through Experience. I'm speaking with Ryan Odland today from the Helen Keller National Center. We're using the virtual space as a platform to continue our collaboration with Helen Keller services in addressing timely topics connected to the DeafBlind community and beyond. Today there's isn't a more timely topic to discuss than COVID. And we will be speaking on how the DeafBlind community is dealing with COVID, a community that relies largely on touch, and how that community is dealing with a time where touch is pretty much prohibited. So we're going to just go to you Ryan, if you would give a real quick introduction of who you are and what you do and we'll jump right into that topic.

RYAN: Hi, everybody. I am Ryan Odland. I work for Helen Keller National Center. Often referred to as HKNC. I am a regional representative responsible for the mid western region. I am a DeafBlind individual. I was born deaf. My vision was good. As I got older I started to lose my vision and it's progressive so now I'm almost completely blind. I can see very little just right in front of my face. I use American Sign Language to communicate. As I've lost my vision I've transitioned into using tactile American Sign Language. I have a master's degree in deaf education and I work with DeafBlind individuals to provide support and access and different resources in their will home communities. I am married, I have two kids, my children are almost 6 and almost 2.

DOUG: Just to jump right into it as a man who is DeafBlind yourself and is used to relying on tactile communication, how has recent times with Coronavirus impacted your life personally?

RYAN: This is Ryan. My life has changed quite a bit since Coronavirus has started spreading. I can't get close to people like I normally would because of physical distancing so because we have to stay six feet away from each other I can't communicate through tactile sign language. Instead I'm using email, face time, Zoom, texting people whether I can. Instead of going to stores I have been ordering things on line a lot. I have been heavily reliant on Amazon and DoorDash for food delivery. We've been ordering a lot of takeout. Instead of going food shopping at the grocery store we've been ordering groceries to get delivered to our house to cook at home. In my home I can get close to people because we're a family unit so I'm having no issues with my wife and kids but I'm very limited to what I can do out of the house now. And as far as work goes that has been pretty much a complete 180. My whole job is to work with people and meet people and have conversations with them. I travel a lot for work. I attend a lot of meetings in person with other DeafBlind clients and now I can't. I am working from home the best I can and that means using technology a hundred percent of the time. But we don't benefit fully from using technology. We have to come up with creative solutions in order to make technology accessible to the DeafBlind community so it's been a transition.

DOUG: Yeah it definitely sounds like it. I know as a regional representative at the Helen Keller National Center that you have a lot of contact with other DeafBlind people that you service and I'm wondering in communicating with other people what stories you've heard or you know what other challenges some other people in the community are dealing with right now from communicating with them that you have heard.

RYAN: It's been a very varied experience. Some of the people that I work with it's great because they're very skilled using technology and some are not skilled at using technology and that's been quite a challenge. Some people because their vision loss is very recent haven't learned braille yet and that's how they would have been able to access technology, so we're a little bit stuck there. You know hopefully they have somebody who can support them at home, who can assist, whether that's a family member or you know sometimes a roommate or someone who can go over and be with them in that location. But before I was able to visit them, meet them one on one. Now that's not an option, we've got to come up with other solutions for it. Some DeafBlind people are not comfortable with using technology just because it's isolating. They prefer to talk to people in person. Sometimes it's, they may not have all the equipment they need because of financial or other reasons and that can be very isolating. So the technology that they're reliant on they may not be able to have access to. So I'm doing my best to support all the individuals that I work with but it's been a challenge because the experiences are so varied.

DOUG: On the topic of solutions that people have been finding, there was a story that was shared a lot this week in the DeafBlind community and beyond, a news story about a DeafBlind specialist in Kentucky named Kareem Miller who found a [indiscernible] and has been teaching one of her DeafBlind students through a glass window in front of that student's house. So I really loved that article and it's something we can share later with everyone who is going to watch this. Because it was such a great example of a really creative way to work with current circumstance.

RYAN: Yes. Absolutely. And that's a very unique example, too. But that's an example of the kind of approach that we're trying to come up with. You know, we're trying to come up with ways to still be in person without being physically close to one another. Like right now we're using Zoom to talk. That's an option for people who can access it and can see well enough to use it. There's also the chat feature in Zoom some people can use. Some people will benefit from that but some won't so each person needs to find the accommodation that suits them best. And like I mentioned some people are really uncomfortable using technology. Sometimes remote support is an option. You know for people that can remote into computers. That's a huge benefit if people have that available to them. But not everybody does. So we need to figure out ways to still stay in touch with each other without being physically close because obviously health and safety in the time of COVID‑19 is the most important thing. We don't want this virus to spread amongst us. Gloves and masks are recommended but you can't really support somebody with a glove and mask and even still you are supposed to be six feet away from them. So how to communicate without touching somebody who heavily relies on touch is the biggest question.

DOUG: You know you've mentioned that there are some people who aren't as tech savvy who rely on touch. I wonder if you have had conversations with DeafBlind individuals who are pretty much completely isolated right now being that they're not living with a family like you are and maybe aren't as tech savvy as you. Have you heard from anyone who is in that position right now.

RYAN: Yes, I have. I have an example of somebody who can't really communicate through braille because of certain neuropathy, has numbness in her finger tips so can't really feel a braille display because braille is a series of raised bumps that you feel in order to read. But if somebody doesn't have that feeling in their fingers then they can't read braille so they rely on tactile sign language but we can't do that because we're not allowed to be that close to each other right now. So she's inviting interpreters into her home, but you know it's very, very limited as far as getting access to and it's very unfortunate because every mode of communication is inaccessible because of physical distances required.

DOUG: So you are talking about interpreters coming into that individual's home. I'm wondering of the interpreters that you have been able to communicate with during this time particularly the interpreters that are tactile interpreters, have you had any discussions with them about their willingness or reluctance to continue to do their job at a time where them and everyone else is being advised to not be that close to people? Have you had those discussions with interpreters?

RYAN: The problem is that we don't have enough PPE. Interpreters don't have access to personal protective equipment that's required. There are some interpreters that are willing to go and support somebody who is DeafBlind. You know, they can gown up, glove up, put on a mask. But if that protective equipment is not available to them then they're putting themselves at much higher risk and because they can't get the equipment they're less willing to go so a lot of services and appointments have been put on hold for the time being so there are few options left for DeafBlind tactile sign language users.

DOUG: I'm going to take a quick paws for an interpreter switch and we'll pick up from there. And for those who will be watching this later and don't know what interpreter switch is, we have two interpreters joining us who are taking turns signing and voicing and it's customary for interpreters every 20 or so minutes to switch those roles so that is an explanation of what was happening there.

So Ryan to pick up on where we were, that was, yeah I can imagine that that's a very challenging position to be in for everyone involved. But you know, for obviously someone who relies on touch and is not able to get the same type of support and to be able to communicate in the way that that person is used to and then on the side of an interpreter who is also stuck in a tricky position to have to make the decision of abiding by the various rules that are being implemented right now as far as physical distancing but also wanting to service the community that really needs that service right now, so I can imagine that that's a very difficult position to be in. You know, I want to make mention of the op ed article that you wrote recently. There was an article in the Washington Post this past week very much about what we're talking about now which is the ways in which Coronavirus has affected the DeafBlind community, and I know that you wrote an op ed article in response to that and I would just like you to, what inspired you to write that and what are some of the things you talked about in that op ed?

RYAN: This is Ryan. Sure. The article that was in the Washington Post really emphasize connectedness. Now with this physical distancing it has really impacted connectedness because you're not allowed to be physically around other people but you are still able to maintain social connectedness. So we try to come up with different ways to communicate despite that. And I noticed in reading this article that I did agree that this connectedness is important. How the Coronavirus has impacted our world is drastic. And we're having to find other ways to communicate with the people around us. How can we maintain being connected? How can we still be present and not be overlooked and not be isolated? How do we maintain being connected in our communities? So I wrote my article to kind of come up with ways to, that you can have solutions in different situations that are current specifically in my life. You know, I know the author of that Washington Post and I both have similar parallels in our articles.

DOUG: Yeah and I think it's a really necessary topic to make more public to everyone else. You know, I think during these times it's easy to just kind of focus on one's own situation and how they're getting, how ones self is working through this time but I think it's valuable to hear how other communities and other people are dealing with this current time, and the specific challenges other people face because I think that understanding creates empathy and connection in a time where that's a really valuable thing. So I think it is really helpful to consider other people's experience during this. And I think in a way that does create connection. So I'm really glad that you were able to share your thoughts as well. I know they benefited from reading that. And that's something if your op ed is something that you would like to share you know, with our audience here just let me know and I would be happy to share that with other people as well.

RYAN: And this is Ryan. Absolutely. Please do.

DOUG: So we have about four minutes left in our conversation here. Again, sorry, it got cut a little bit short but I'm glad for the time we have had. You've said some really great things that I think people will find valuable. As we wind down here but still have time left, is there anything that you would like to share as we close out this conversation?

RYAN: This is Ryan. What our community is going through right now in terms of communication break down is understandable given the times. Many people are going through a lot of challenges right now and they're all understandable. We are working through it. We are making progress. We are being persistent and it's important to be persistent. We are finding solutions, finding different strategies to break down these barriers that we're encountering. This is a new experience for everybody, myself included. How we're approaching these topics and figure out how to navigate this if it was to occur again in the future. This experience is going to help to prepare us for what's down the road and that's important. That's really the key here.

DOUG: That's so well and such a great perspective. As we get adjusted to what's happening right now and really accept the reality of it, a really helpful thing is to also understand how we cannot just deal with what's happening right now but prepare better for the future like you just said so I think that's a really, really valuable way to frame what's happening right now and a really useful one so thank you for sharing that. Again as we approach closing out, if I were to ask you for the DeafBlind community that's going to be able to see this conversation if you could speak directly to them, what are some closing words you would like to say speaking directly to the DeafBlind community that you are not only a part of but also serve through the Helen Keller National Center.

RYAN: I would say we'll get through this. We'll be fine. We are all in this together.

DOUG: Well said, Ryan. Thank you. I hope we're able to have another conversation in the future when we work through some of the technical difficulties we have with the live stream. I'm sure we'll be able to solve that very shortly. So I hope you can join us again. I know where to find you at least for the time being. It will probably be sitting right there in that room because it doesn't seem like we're going anywhere quite yet but I would love to speak with you again in the near future. I also want to say as we close out here there's a lot more we want to share about what Helen Keller services and the branches of Helen Keller services in Helen Keller National Center and Helen Keller services for the blind are offering right now. You can go to HelenKeller.org and that will provide information in ways in which the organization is dealing with what's happening right now and having proactive approaches to helping the community that they serve. I know that they're offering various courses right now virtually and all of that information will be on the website so I encourage you to check out their website again, that's Helenkeller.org you will be able to access all branches of Helen Keller there. We were unfortunate not able to continue our Facebook live for this conversation but if you have any questions once we post this conversation, please feel free to reach out, send messages to our Facebook. We would love to hear from you. We will certainly figure out whatever technical difficulties happened this time around so next time we can bring you the live stream that we were hoping to bring you today without any glitches. So again, thank you so much Ryan for everything that you shared today. Thank you for everyone who watches this and we look forward to bringing you more episodes in the near future. As of right now the plan is to continue on Fridays. It's possible we might add other days as well but we will certainly be back soon and we're looking forward to it so thank you so much.