[Doug]: Welcome to Episode 38 of Feeling Through Live. I have the pleasure to be joined by my dear friend, Rebecca Alexander who's far overdue, and joining us, I've been, we've been playing like Zoom tag for quite a while now, but it's a, it's really an honor to have you here. And before I have you maybe introduce yourself, I'm going to start off by doing an image description of myself in the screen. And then if you, once I pass it over to you, if you could start off with the image description, that would be great. I am a white male in my mid thirties, short dark hair, little Scruff on my face. I'm wearing a blue button up shirt. And the screen that we have today in the top left corner says Feeling Through Live Episode 38, Deaf-Blind representation in film top right corner is our interpreter who will be signing throughout and in the bottom right corner. Rebecca, if you take away your image description there.
[Rebecca]: So hi everyone. I am Rebecca Alexander and I am coming to you live from New York City in my apartment where I've been for the last, it seems 10 years, but maybe it's been just over a year given COVID. So I am wearing a green sweater. My hair is dark Brown and long I am of the Caucasian persuasion. And my mini Goldendoodle monkey is sitting behind me. I believe for you guys. It is on your, it's on my right it's on your left. And she could not look any less impressed. She's looking away from the screen. I have my gray couch behind me, and a framed photo behind me of sort of like a brick door. It's not entirely clear what it is, but it was a picture I really liked because it had different colors that I could see, pretty well when I, when I bought it some time ago. So, and I'm really happy to be here with all of you.
[Doug]: What, what do we have to do to impress monkey enough to have monkey like, be more jazzed about our conversation?
[Rebecca]: I mean, as soon as you find out, let me know.
[Doug]: Okay, well, in that case, as long as monkey's not barking at us, but you know, there's one of the reasons I'm been so excited to have you on is because, you know, we got a chance to connect a few years ago now, before Feeling Through was ever a thing that people were able to see. And, you know, you've been such an amazing, you know, first like mentor in this space when we first met each other, but really just become a really great friend. And we've had the opportunity to talk about so many different topics. And I feel like I've benefited so much from being friends with you and just learning about all different types of things in the world. So there's so many things we can talk about and certainly we'll get to today, but you know, one of the things that I thought through the context of, you know, what Feeling Through platform is, and obviously something that's been a really notable thing in your life as of has been the topic of representation in film and specifically Deaf-Blind representation in film. And, you know, can you explain to everyone a little bit about your memoir and why we're also connecting it to film in this case?
[Rebecca]: Sure. So, I wrote a memoir that I think it came out like 2014, 2015, and the memoir was about living with Usher Syndrome type three, which is the leading genetic cause of DeafBlindness in this country and around the world. But I decided to write a memoir. Actually I was approached some years before when I did a big fundraiser for just, raising money for vision research. And some people found, found out about it and they said, Oh, that's interesting Deaf-Blindness, what my thought be like living in New York city. And I was approached by a literary agent and I was what, 28 at the time. And I was thinking, I was almost embarrassed at the idea of writing a memoir at 28. Like it felt very sort of self-indulgent and then some time passed. And I realized my own process of coming to terms with my own identity as not, not a sighted hearing person and not a blind deaf person, but somewhere in this great area where people are most uncomfortable in the gray, right? I found that reading other people's memoirs, no matter what their circumstances were, whether they were a prisoner of war or whether they were someone who had, you know, were raised in a cult that there were all of these sort of commonalities, there are these similarities that I think we all have that really boils down to simply being the nature of the human condition. And so I decided that I, you know, some years later when the same literary agent approached me again, I said, all right, let's, you know, let's do this. And so I did it and in 2016 or so, I was approached about making my memoir into a film and of course, you know, better than I do in Hollywood, that that takes a long time. And every time I would speak to somebody in Hollywood about what progress was being made, I felt like I needed to take two or three showers afterwards. Cause it just felt sort of very Hollywood icky. And so here we are. And, and recently now, since COVID the movie has been the rights of insult to Netflix and it's in development now, so I thought this might be an opportune time, and more importantly to talk about Feeling Through and just, there's nothing that I felt sort of more inspired and encouraged by that you did the more difficult thing by really searching out someone who would be most appropriate to play Artie and going to Helen Keller national center and, you know, sort of making this more of a movement instead of just a movie for people to go and see, be maybe touched by and then leave that you actually are giving a voice that you're actually creating this sense of inclusion for so many of us with Deaf-Blind. So I can't tell you how meaningful that has been for so many of us in this community.
[Doug]: Well, thank you, Rebecca. I really appreciate that. And you know, I'm excited to get into talking about the nuances of what your experience has been in Hollywood so far and just around the topics of representation. But before we do that, just to kind of touch on your memoir a little bit more and what you, so, you know, beautifully brought up is that ultimately, and by the way, I'd like to note, I believe there's people like Justin Bieber that had like memoirs or films about their lives when they were like half that age. So I don't think you should feel weird about that. I think there's like 10, 12 year olds out there that I've met more. So maybe no need to feel weird about that, but what I think that's so great about what you were just saying is that, you know, ultimately, and I think it's something that people are starting to have more awareness about, but identity is not this like thing that you can very cleanly fit into, like a handful of boxes. It's something that there is it there as many people as there are in the world, you'll find as many unique ways to identify. Obviously it's a little bit more I think a parent that diversity in some people more than others, but in your case, you know, as someone who with, you know, obviously you can speak much more in-depth about this than myself, but with usher syndrome and just the Deaf-Blind community, a whole Deaf-Blindness can manifest in any number of infinite number of ways and happen in any number of stages that your identity it's very proof that your identity is this ever evolving thing. It's not this fixed thing that you're like, Oh, this is just who I am. And this is who I'm always going to be. It's something that evolves. Can you speak a little bit more about the evolution of like your identity in any way, you'd want to talk about that?
[Rebecca]: Sure. So, you know, I was raised in a, I mean, hearing and cited family. And I was diagnosed when I was, I think, 12, with RP, which is the vision part of what I had. And then later I think that we knew I had what they called, like a cookie bite hearing loss when I was maybe, I don't know, 13 or something like that. I can't even remember now. It kind of all blends in, but it wasn't until later when I was in college, I was at the university of Michigan. And I, one day I just woke up and I had really loud ringing in my ears. And the feeling was that I couldn't hear people sort of speak to me over that. I had hearing aids at the time, but I don't know if it was because I was like a teenager still, or if I just really wanted to not about these like two senses being connected, I don't know. But that, that day that I woke up the sensation was that the ringing was so loud. It was almost paralyzing. I couldn't hear any, it felt like I couldn't hear anybody speak to me over it. It felt like I couldn't get away from it. And I couldn't because it was in my head. Right. And I, I felt like I was going insane. And so after about, and the only thing that helped it was when I put my hearing aids on. And so I, you know, after about a week or so, it wasn't sort of getting better. So I went to the Kellogg Eye Clinic, which is at the university of Michigan and they did a lot more testing. And they said, you know, Rebecca, you have usher syndrome. We've never seen it as it sort of presents itself in you, but because you have, you know, both progressive vision and hearing loss, it can't be anything else. So it was a long process of, you know, the human genome project was helpful. My, my mom was very dedicated to figuring out what this genetic mutation was because Usher type three had not yet been identified. And we happened to find the researchers in Helsinki, Finland, who had this very small population of people. And we overnighted my family overnight at our blood work to these researchers. This was about 10 years after my diagnosis. And it turns out that our blood work was that missing link. And the Dasher syndrome type three had been identified. But I mentioned this long boring story because it really means that there was no roadmap. You know, it wasn't like, you know, I was told I was going to be blind by the age of 30 I'm 42 now. And I think I have probably about 10 degrees of my central most vision. I have donut vision, many of us with vision loss experience, very different types of vision. I see everything on a spectrum. And as you mentioned, people like to sort of put something in a very neat and tidy box and nothing is neat and tidy. Nothing about life is neat and tidy and the more neat and tidy it is, the more uncomfortable I am because to me, it's just a sort of a covering up or a facade of something much deeper and more complicated. So I think going through this process of having to figure all this out on my own of not being, in some ways, the pioneer of Usher Syndrome type three really sort of gave me the opportunity to get to know myself and figure out what it was that I needed to do to feel a greater sense of confidence and a greater sense of ability to accept myself. And it was a very long process and it all it still is. But I can tell you that the level of intimacy that I have with my friends and my life and my now is absolutely because of my deaf-blindness. And I don't know who I would be if I was a fully sighted hearing person, being Deaf-Blind is a very, very difficult thing to live with. Not because being Deaf-Blind is particularly a problem it's that everybody else is sort of, you know, the world itself is not cut out for people like us. So, you know, we are constantly having to adjust ourselves in ways that are not even possible. And so I think for my own coming to terms, it's, it's, it's been a huge process in me learning to use my voice and not speak up for myself from a place of anger, but speak up for myself from a place of confidence and from a place of wanting other people to understand so that they can communicate, and do better in terms of how they interact with the world. And particularly with people who have disabilities and Deaf Blindness.
[Doug]: And I think, you know, in getting to know you both personally, and, you know, the more public figure side of you, I think that's something that you do so beautifully knowing that basically all environments that you find yourself in are these extremely nuanced ones, ones, where there are a lot of people who don't really have the language and understanding of them, which can lead to a lot of pretty severe, misconceptions and erroneous, you know, understandings about them. And I think if what you're able to navigate it so well, because you, you come off so genuinely is having such a strong sense of self connected to identity and having, as you described, it sounds like the, the journey of what, what you've dealt with in your life has, that's been the benefit of it, of you having to almost be forced to really understand yourself in a, in a more intimate way than maybe some people, have been, have not necessarily had the same necessity at certain times in the way that you have, but I think that's something that's so apparent in, you know, knowing you a lot of different sides of view. And I think that is a interesting segue to, you know, talking about how we deal with these topics in storytelling and in film, because I think something that is happening right now, and it feels like a pretty recent thing is that there is, I, again, largely out of a little bit of bending the arm of, of Hollywood, if you will, more of a, more of a, being more receptive, the industry being more receptive to starting to understand and listen to, you know, authentic casting and what that means and why it's important and maybe follow through on it a little bit more than previously, but there's still obviously a long way to go. And the language in that space, um, we haven't really necessarily, we're still working towards the nuance because I think there's a lot of people who are in positions of power in that space who, who are very new to a lot of these understandings. So, you know, with that said, I guess, what has this process been like for you so far knowing that you couldn't have something more intimate and personal to you than your own life story and your self being portrayed on screen, dealing with, you know, any number of people, some of which who are probably learning about Deaf-Blindness for the very first time, you know, whoever you've been dealing with on the Hollywood side of things. What's that process been like for you so far?
[Rebecca]: Yeah. So that's a good question. You know, I think that sometimes when, so I don't represent the entire Deaf-Blind community. That's not possible, it's not, it's not possible for someone to represent the entire trans gender community. It's not possible for someone to represent the Asian-American community. You know, African-American anything, there, we are all sort of individuals and we may share similar experiences. And I think that we share some more similar experiences than we ever allow for ourselves to recognize. And I think that one of the gifts of having something like Usher Syndrome is that I often try to see what the similarities are that we have, or more importantly, I love to go somewhere. And because we all have preconceived ideas of who a person is or where they come from or what their education level may be, or their income level or whatever it is based on what, wherever we come from. I love being proved wrong. I love being aware of my first impression and not saying this is who this person is, but saying, I can't wait for you to be proved wrong. And I do that with myself. Because I think that we are all sort of conditioned that way. And to say that we aren't, I think is completely dishonest, but so, you know, here's what I'll tell you. It's interesting because when you know this a couple, a few years ago, and I can't even remember how many years ago, because 2020 like feels like 12 years. So I don't remember what time looks like anymore. But a few years ago there was an announcement that was made on, on social media. And it was that Emily Blunt was going to be playing Rebecca Alexander and not fade away. Now I got this news just as everybody else did. And I was in session with patients. And like all of a sudden I was in between sessions running to the bathroom. I looked at my phone and I like pointing text messages. And people were like, congrats. You know, like, I'm so excited for you. And I had no idea what they were talking about. Right. And so then someone told me this was announced now I don't know that Emily knew any than I did, but this announcement was made for whatever reason. And by whomever. And I sort of felt like, okay, you know, this is, it was, it was so surreal. It was strange. And in addition to that, you know, a little bit later I was asked by a big disability organization to MC an event that they were, you know, putting on and they were going to be recognizing a famous person. And so I wanted to see what this organization was about. And so I just went online to look at it. And my assistant at the time told me, I think you need to go to that website and see what they have there. And it turns out that on their home page, they had an entire campaign of actresses who were low vision or who were blind or whatever, who were like auditioning to play Rebecca Alexander in this role. And it was like this whole disability rights movement, and that there needs to be representation. And I was so taken aback because both communities disappointed me, right? Like there's a saying in the disability community. And, you know, it's a very large community, it's the largest minority community in the world, as we know, and made up of a very diverse group of people. But I was disappointed because of the saying that goes on in the disability community, nothing about us without us. And the fact that I was not asked about how I felt about this. Nobody approached me from this, even from this organization and that these women were going on and sort of doing this audition and like, listen, I can appreciate that. It was, you know, maybe just for a, to catch attention or to really sort of make a point, whatever the case was. I was disappointed and I told them, and that was the last I've heard from that organization. And you know, what I, what I can tell you is that historically many of my Deaf-Blind friends had told me and have experienced that even with their Deaf friends, that losing their vision, becoming Deaf-Blind has been a very difficult process for them in communicating with their friends as well, because when you're signing your hands, that's your voice. So when people are covering your hands to feel what you're signing, that's a transition, that's a process that you need to sort of adapt to. Right. And so I didn't necessarily think that a visually impaired woman was necessarily the most appropriate because a visually impaired woman, or may not understand the Deaf world any better. So the point is there was no conversation with me first. And, um, so it's sort of this weird gray nuanced place. And I it's made me have to sort of think a lot about this whole sort of situation and
[Doug]: what representation looks like. Yeah. You know, I have one other friend whose memoir was made into a movie, a big movie star played him, and I was equally shocked to hear how little he was ever consulted about any step of the way at all. And so I just find that like a bizarre thing in general, that why you wouldn't want at at least at some points to go to the source and talk to them when, when they're readily available in this case. But that aside, you know, I'm wondering, cause because you started to point out how, you know, authentic, just to talk about authentic representation for a moment and like what it has meant, at least in Hollywood, as of late, is that, you know, through the lens of disability in this case, the disability community, it means casting actors who are disabled in roles that are written as disabled characters. Historically, there's been very, very few roles written as a disabled character, even though, as Rebecca, as you pointed out the disability communities, the largest minority group in the world, and by any accounts constitutes as many as a fifth to a quarter of people in the United States alone historically that's been something like, you know, 5% of characters and in major TV shows and movies are written as having a disability and more problematic than that is of those that small percentage. Historically very, very, very low percentage have actually been played by actors with disabilities. They've often been played by actors who don't have disabilities. And the, and the real issue here is the fact that there are obviously a lot of people who have great talent, who are, who have disabilities, who deserve to have opportunities like anyone else would. And certainly when it comes to a character that's written as a disability, not even getting to the fact that characters with disability, actors with disabilities should be considered for any role, you know, I'm really, or like most roles at least as we kind of ripple that out and get better with that. But with that said your specific life story highlights a really unique, unique things around what, what authentic representation means in this specific case. You know, again, as you well described earlier, you know, identity is not something that fits in a neat box and Deaf-Blindness Isn't something that fits in a neat box. It's, there's such a diverse manifestation of it, yours being its own unique one compared to anyone else, who's a person who's Deaf-Blind. So it's not just about again, Oh, this person is deaf and blind. They're perfect fit for this. There's, there's a lot of things to consider. How would you talk about, you know, now that you've had some time to, with this, and obviously it's probably, it may be something that's still evolving, what comes up for you as kind of the right way to go about this, or kind of best practices as we start to talk about where authentic representation fits in specifically with your story, your memoir being option and the best way to go about thinking about casting that role.
[Rebecca]: Yeah. You know, I think that there's a lot of changes that have happened in the time since the op the REITs were first option. I think I'm now on the fifth option. So it's been over five years since they first optioned it. So a lot of kind of change and new characters and people who've come and gone and whatever. I've never had my story told even though, you know, New York magazine and these various stories have various outlets have told my story, none of them had ever really gotten it right. So to speak because they always have their angle, their lens. And I have to assume that that is going to happen again here, right? I mean, remember, this is my life that they're going to be representing that I'm almost 42 years old. So this was the time when I was in my early thirties. I'm a much different person. My vision and hearing loss is much different now. I mean, in the book, I was cochlear implanted on one side, I'm now cochlear implanted on both sides. My preference is to be, is to not have my ears on. There is nothing I love more than being deaf because it is my religion. It is sort of my, my safe space. And when I first started losing my hearing, there was, it was so difficult for me to be with myself and my own head because of how loud the tinnitus and the ringing and the auditory hallucinations and all that stuff was. So, and I know I sort of sidetracked here, but to get back onto the point, I think I'm really eager for, I want people to have be more flexible with their minds. So maybe this movie, and we've talked about this, you know, I think people are like, Oh, we want to get the best director and someone who's famous and has done all this work. I don't care if you're famous. I don't care if you like won six Academy awards. I mean it, and I know that we don't have the budget for that anyway, but I want someone who has that willingness to see outside of their, themselves, outside of their vision. I want someone who is comfortable being incredibly uncomfortable and sitting with that. And that's exactly what you did when you went to Helen Keller, right. And when you had to learn and be a part of, you know, communicating and creating this space for an authentic after. So, you know, one of the things, the director that they've chosen, I really like we've gotten to know each other and she seems to have this flexibility. I mean, we're still a ways off, but one of the things we've talked about is starting the movie and having someone who is a cited hearing actress, and then as the movie progresses and the vision loss and hearing loss that the main actress is a totally different actress who does have vision and hearing loss, or who does, you know, we don't know yet, but even that willingness to have that flexibility and to ask the viewer to sort of suspend their, you know, reality for a moment to try to really kind of capture what it's like. I don't know. I really appreciated that. And, so yeah, so I, this is something that I'm really going through it, and I have to tell you one of my like biggest concerns really is the backlash that I'm going to get. We are so quick to judge and to criticize and, you know, social media. I think I understand how incredible it is that we can all be together today and have this conversation, but people have no, I mean, they have no qualms about just attacking anyone for any reason because of their own shit in their own lives. And so I'm really eager for people to sort of maybe be open-minded and to really start having this dialogue. And I'm really hopeful that this will continue to open that dialogue and less sort of criticism.
[Doug]: And, you know, I think such a great example that you just brought up again, whether it happens or not is, you know, that example, the possibility of, you know, switching actors at some point in the story to more, accurately exemplify in a, obviously in a poetic way, but more accurately exemplify the transformations and changes that you were going through in your personal story. You know, again, as we get back to this point about the fact that we are, you know, we are very young in our, under on our, in our, like the general public's general, society's understanding and language around these nuanced topics. I mean, for people who aren't part of the community, and in this case, even like a specific part of the Deaf-Blind community, they're not, they're probably have never thought about any of the things that that are needing to be thought about in representation, in your story. Let alone anything that even comes close to relating to it. Oftentimes, so as we, as we understand that film is meant to be shared with lots of different types of people to come together and have some sort of communal experience and obviously have our own takeaways from the story, ultimately, knowing that you can't appease all people all the time, what's kind of the, what is kind of the best solution ultimately, and what are ways which we can be creative knowing that we're working in this context where maybe we can't do the things we really want to do yet, because we're not there yet in the language and the, and the, and the mass understanding around it. And how do we work with the context that we're in right now and the resources we have and the understandings we have to do the best possible job we can. And it's such a, your, your story in particulars highlight, like brings kind of exposes where we w you know, where we need to really dig deeper. I think it's such a great because of, because of the intersectionality there and the, and the very, you know, unique journey that you've been on personally. It really does expose kind of like the, where we need to grow and evolve. I'm gonna hold for just one moment while we do an interpreter switch. All right. We're continuing here, but yeah. You know, I'm wondering, you know, you said that there's been an evolution of even within the time that, that your, your story was first optioned. I'm wondering, you know, as best as you can define that, how, what would you, from your own perspective, what do you feel like that evolution is, and kind of, where does it feel like we're headed with these topics?
[Rebecca]: That's a good question. You know, I, what I'm most hopeful for is that my story will just continue to open up this space in this dialogue. You know, one thing that I think about, and I'm sure I'll get backlash on this too, is that, you know, what's interesting, is it now when you have like a zoom or if you have an email, you know, signature or whatever you have to include she, her, or they them, or he, him. And part of the reason why I think that that has been able to sort of catch on so quickly is because people have a voice, literally they can speak, they can communicate their needs, but when you're a Deaf-Blind person, or when you're a deaf person, your, your voice is always being interpreted. It's always, you always need to find someone to help you communicate your needs. So the fact that today we're able to say, even for, you know, the Low-Vision and Blind community, we're able to do the audio description. I honestly think that that would be a requirement and it would catch on as quickly as the, she, her, they, them, he, him, if we had that type of access, if we had the ability to communicate that freely and easily and comfortably with the world, right? And so that I think is something that I hope will continue to progress with even sharing my story. Now, I know so many people who have a very different, you know, Deaf-Blind experience than I do. I mean, I think if you ask me, I mean, for example, so, you know, one person that we all know very well and sort of this community Maricar has an incredible story I would love. And her, her story is so different than mine. I would love to see a movie about her story. I would love for this not to be sort of like the only story. And now we, can't a movie about that. Why? Because it's been done before. I really hope that this sort of brings this more to the forefront and that we're not focusing on this being about someone with Deaf-Blindness we're, we're focusing on who we are. It's people the same way that you look at a hearing sighted person. Who's very complicated who has their own sort of experiences that really make them resilient that make them vulnerable. And so I really hope that they can capture more than just the Deaf-Blindness that, you know, I'm someone who's very snarky. I'm someone who has a very, you know, dark and juvenile sense of humor like that. There are so many parts about me and that this is simply a part of what makes me who I am. If that makes sense,
[Doug]: I get, well, I can definitely attest to your dark and juvenile sense of humor for sure. Which is one of the things I certainly love about here, but no, that makes that beautifully put, and, you know, just from my own experiences, I can definitely relate to a lot of what you talked about as far as being a storyteller in this overall space, obviously coming at it from a very different angle. But, you know, as far as with Feeling Through is really interesting. I mean, there's a whole nother discussion that we can have, and certainly get into today, or another time around me being someone who's sighted and hearing representing someone who's Deaf-Blind in a film, you know, and obviously I did all the homework I could do and connecting with Helen Keller services and the Helen Keller national center, and also just really getting to know the community as much as I could not, and not to be out of obligation because I wanted to, because I was curious and then got to connect with awesome people like you and many other people who became good friends of mine too. But I think something that was really interesting and taking the film around and, you know, thankfully we've, we've gotten a really great universal response, you know, from the general public, from a lot of people we've been able to share it with in the Deaf-Blind community and other disability communities, but, you know, something that has come up sometimes, and it never has, honestly, there's been very little pushback or a backlash on anything, but there have been a lot of times where people go, Oh, you know what, there's a lot of Deaf-Blind people who do this, or do that. You should have done that in the film. And I'm like, you know what? There just needs to be more films about people who are Deaf-Blind, because this was about one very specific person. Who's, you know, I mean, it's ultimately not about Deaf-Blind is it's about two different people connecting, but this was representing one very specific person who's Deaf-Blind that wasn't meant to represent all people who are Deaf-Blind and you're. And I would say to these people, your point is so well taken because there needs to be more stories that include people who are Deaf-Blind so that we can get the breadth of diversity within that community. And that no singular story, has the pressure to, to encapsulate an entire community through like one character or one story. So that's, again, you know, as we get to the fact that with storytelling, particularly that's meant to capture, you know, something very current and be told to lots of people you're always operating within a very specific context. And that context also means that when I go to make a film that includes a Deaf-Blind character played by a Deaf-Blind actor. I have to be aware it's not the driving force of all the decisions I make, but I have to be aware that this is a first that a Deaf-Blind actor is starring in a film. I have, there's a responsibility to being aware of that context. I mean, if we're, if we go like a thousand years in the future for all still here on planet earth and altogether, and there's been, and movies are still a thing or whatever form they're in, and there have been a million movies with people who are Deaf-Blind and everyone else in them, you can, there's a different language. There. There's a different way of telling those stories at that point. But right now, you know, you talked before you used the word of, in certain ways of like pioneering, Usher Type 3, but it's also pioneering in a way storytelling, very specifically storytelling that deals with the Deaf-Blind community, because there's been so few stories, particularly movies that, that deal with that experience. So it's like, you know, you talked about, you know, how, how the internet can be in social media, like as just a person, you know, how do you juggle because you do it so well. How do you juggle being who you are and showing up as who you are, and knowing that as a public figure, who is Deaf-Blind, that always, whether you want it or not carries a degree of responsibility, how do you juggle those two things?
[Rebecca]: It's a good question. You know, I think the amount of work that I've done on myself and remember I'm a psychotherapist. So this is what I do all day long is just sort of evaluating emotions and, and kind of really trying to get the root of whatever it is that I'm feeling or anybody is feeling for that matter. And I think that what I've found is that no matter what your situation is, the more confident you are, the more comfortable you are with whatever your circumstances are, the more comfortable other people will be communicating with you in whatever form that is, the more comfortable people will be in having some sort of interaction with you. And I've also recognized that, you know, part of being in this, in this Deaf-Blind space means that I go to every, every place and everything, knowing that it is likely not going to have be accommodating for me, that I'm going to have to be creative, that I'm going to have to think outside of the box, that I'm going to have to make it work. And all of these things that don't have that sort of accessibility or inclusivity, that, that it doesn't drag me down. Because if I were to focus on everything, wasn't, you know, able for me to, to access, I think it would be a very depressing way of living. And so I do the best that I can to try to create awareness and comfort in other people. But part of that is living in discomfort. And maybe it's sort of the sick, I don't want to say a sick pleasure, but I have learned to be in credibly comfortable in discomfort, you know, whether it's climbing Mount Kilimanjaro or swimming from Alcatraz to shore without being able to hear or see, you know, these are things that it's like developing that resilience and that comfort with being uncomfortable. I think that when we see people who a are different than us, but who we see with any type of different ability, we immediately assume that maybe they're no, that we can't communicate with them that, and that they're not entirely human. That there's something that like is unreachable. And I don't agree with that. I think that we all have to be incredibly uncomfortable in order to make progress in order to sort of continue to develop this comfort with, with discomfort. So I don't know how great I am at it, but I'm certainly comfortable with other people being uncomfortable with my situation. And I don't take it personally, you know, that's kind of their stuff, not mine. And, but it has been a process of, you know, getting to that place.
[Doug]: You know, as you mentioned in that, you're, you are a therapist, psychotherapist, you are also an extreme athlete. You were starting to kind of talk about those in that beautiful response, but you know, how, how did I guess, to not to try to make connections for you there, but I can't help, but feel like that both of those aspects of yourself are directly connected to, you know, a lot of what you detailed in your memoir of, of kind of your experiences as, as a, as a girl and a young woman, and then a woman coming into her own identity and, and needing to, you know, both understand yourself really intimately and also really get comfortable being uncomfortable. Was that was the therapist side and the, and the extreme athlete side, like kind of directly birthed from that experience or what's the connect. What, if any connection is there, there?
[Rebecca]: Yeah, so, you know, I think that the, um, so one thing again, that people likely don't know about me and if they read my book, first of all, thank you. I always assume that my book is either sort of sitting by the side of someone's toilet is toilet reading, or maybe it's been donated to Goodwill, but at any pace, I think that for me, so I was in an accident when I was 18 and I broke just about everything in my body and I fell out of a window and it was a very, that was my first real sort of experience with having a disability. I was in a wheelchair for four months. I've lived with chronic pain ever since. And so it's funny that, you know, the, the Deaf-Blindness is part of it, but this is another part of me that, and I had to quite literally rebuild myself. And I think that so having to rebuild my body after all of the injuries I sustained, and then getting this diagnosis, what sort of evolved was me not only taking care of my body because I had to, but that I don't have control over the fact that I'm losing my vision, but I do have control over how I take care of myself. There no treatment for the vision loss. And, you know, I know that that's even a controversial topic itself, but I can control what I eat and how I nourish my body and how I take care of myself. And I can also control my exercise and meditating and practicing yoga and the things that give me a sense of empowerment. And there is something that gives me this sense of taking the power back in some way, when there's so much that so completely out of my control. It's also how I manage my anxiety and stress. That's just for me, exercise has been a key part of that sort of thing. Repeat for me now, therapy has been a huge part of my ability to come to terms and really analyze my identity and my experience in the world and learn to become comfortable with myself. And so I think that it was, I love listening to people's stories. I love being able to share in very difficult and painful, and also in joyful times in people's lives. One of the things that I love about being a psychotherapist and even a Deaf-Blind psychotherapist is that if you were to see me on the street and I were standing there with my cane waiting for the light to change, I think that I would be the last person that anybody would ever assume that they should go to for help. I think I would be the last person that someone would point to, to say, Oh, she must be a psychotherapist. She would be someone who would be able to help me with whatever the emotional stress stresses or the trauma that I'm dealing with in my life. And I love that as weird as that sounds, because it's just another Testament to the way that we sort of judge and preconceive who someone is or what they're capable of or whether they can help us. We're not, not. And, so, the fact that I am standing there and if it is sort of a very busy, noisy, crazy street, and now, because there is less traffic, you know, we, those of us who have hearing because of assistive listening, we rely on the traffic to tell us when we can cross, right. So I may need more help from someone and that reciprocity of someone who can really help others, and yet also needing tremendous help from people really is incredibly humbling. It is just a very humbling experience.
[Doug]: Yeah. There's been some really great articles that I've seen, um, written recently about specifically in New York city, people who are blind or low vision. And I'm sure there's been some also about the Deaf-Blind community, but I've just happened to see more about blind or low vision navigating the city during the times of COVID is a very different experience. You know, normal cues that are there, like you were describing are not, not there as much or in a different way. And kind of learning to re navigate is something that I've, I've read some really interesting articles on that. I'm wondering, just being specifically being a therapist during the last year, you know, where I'm sh there's been tremendous challenges for basically everyone, in a number of ways, you know, what's it been like for you this last year? And I'm also curious to you find yourself as someone who, that, that people with disabilities or people who are Deaf-Blind seek out because of that, like other level of understanding of their experiences, that's something that happens for you.
[Rebecca]: Yeah. So it's interesting because you know, when COVID started, one of the things that happened is that they sort of lifted some of the laws about being able to practice in like different States. So I have more people with either vision loss or, you know, who are hard of hearing or Deaf or Deaf-Blind who have reached out to me to do therapy because we're all in this virtual world, right. And we now have sort of the legal jurisdiction to work with people outside of our, our States. So it has actually provided that opportunity to work with more people who have, you know, either similar types of disabilities or different disabilities than I do, because I think that I often hear the biggest struggle is finding a therapist who really gets it. I think that sometimes we think that therapists are like these all knowing people who have done all of the research and the studying and the clinical work, and they know the best answers. And I find that actually the best therapists are the ones who have been through some serious stuff themselves and have that vulnerability and humility. But so I, yes, I have the number of people I work with who have Deaf-Blindness or who have disabilities in general has increased during COVID. COVID has been tremendously difficult on all of us. It's been even more difficult, I think, on the Deaf-Blind community. And I think that this, this time, like everybody else for me has been exhausting, but this is why now more than ever having this self care practice has been so important. I think we hear a lot about, and self-care and whatever, but it's something that I have to do because there's such a thing as what we call compassion, fatigue, where you hear so much of people going through so many different things that at some point it's like, I'm dumb. Like I can't even hear anybody else, you know, suffering or whatever. And so I definitely make sure that I meditate every morning and I, I exercise, but I I'm human like everybody else. And I have my limits. So I really try to not become a therapy factor. I really try to do more meaningful work with the people that I work with.
[Doug]: Yeah. That's definitely now more than ever, those practices are definitely a needed and important. You know, as being that we are in a new year, with some pretty significant changes that have occurred, just recently with, you know, the, obviously the inauguration being a very specific sign of it and a little bit more right. And more of a prospect moving forward of, you know, obviously vaccines are getting administered albeit slower than we'd hope, but that there are a lot more people getting vaccinations. What, what are you hoping to see over the next year?
[Rebecca]: Well, I think one of the hardest things that we have had to deal with is a lack of expectation management that, you know, it's funny because I was talking with a friend maybe like last weekend and she was saying that she and her husband were laughing hysterically because they were thinking about last, last year in March, when they, you know, when we were told that we would have to stay home for three months and how brave they felt. And like, we can do this, you know, having no idea that we were going to be here a year later, you know, and just laughing at the bravery, they thought they had at the time. Right. And I mean, listen, a whole other conversation is about the last administration we have, it's deplorable. I never knew that I was somebody that was capable of murder until Trump was in office. I never had such visceral, such a visceral response to anyone in my life. But I will say that our, our expectations were not managed. And, you know, I sort of think that with this new administration, I think that we're all very hopeful, but it's sort of like having a breakup with a really abusive, significant other, and now we were not ready to trust again, like we need to recover and how do you do that? And yet move into this new era. So I guess what I'm really hopeful for for this year is that people will have the room and the time and the space to heal from the tremendous betrayal and loss that we have experienced on such a grand scale. And I really, you know, personally, I really hope that people will get vaccinated soon, but I think that we're really going to be in this space for, for most of this year. And I think we all need to be prepared and manage our expectations and learn to stop looking so far into the future for when things finally open up and actually take the time and space now to think about what it is that we need to do to keep ourselves going during this incredibly trying and difficult time, and also write about the things that were we maybe took for granted. And that we're very much looking forward to once we do, have a greater opening of sort of, you know, our communities and the world. So I don't know if that answered your question, but I think that one of the things that we need to continue to do now, which is very difficult, we need to continue managing our expectations that it's going to take us time. We didn't get into this mess overnight.
[Doug]: You talked about how this time, you know, through the lens of being a therapist, how you've been able to work with people remotely, that you wouldn't normally have the opportunity to work with. There's also been some things that I've heard in specific cases of the fact that, you know, one of the silver linings of this time has been certain things are a lot more accessible for certain groups of people that hadn't been excessive in ways that hadn't been accessible before. Have you come across that in your own life? Not just necessarily personally, but people that you're work with or connected with that, like some of the potential benefits of accessibility during this time and, and how that might, you know, look moving forward, even as we at whatever point emerge from this and kind of get back to whatever normal is.
[Rebecca]: So I don't think so. It's a good question. I don't think we will ever go back to normalcy going through something like this that we've gone through. There's no way to ever go back. We will never be able to sort of return to something it's just like when somebody has any type of, you know, if they have, you know, a psychotic break or if they have any type of, you know, real serious illness you don't ever come out of this and not be sort of permanently affected now, that's not necessarily always in a negative way, but it will be interesting to see how we, as, you know, as in communities evolve, I think that the accessibility there's been more of a focus on creating more accessibility because we do find ourselves in this virtual space, but I will tell you that, like everyone else, I think in this community, I still struggle and constantly am trying to, you know, technology is very flawed. It's made tremendous progress, but we still have a very long way to go. And so I I'm eager, you know, for, I still have to constantly invert from, you know, they have smart invert now, but I constantly have to invert colors from white on black or yellow on block to, you know, just for so many different things. And so I'm really eager and encouraged and hopeful that we will be able to continue making progress. I think that there's a lot of really promising stuff that has changed, but I think we still have a, I want us to work more from a place of momentum and not from a place of, okay, we've created this, you know, that's all done. I think that there's so much that we still can do. So I don't know if that's quite the answer you're looking for, but I do think that this has created an opportunity for people to really be aware of the access that we need. And I think more importantly, I think we've all realized that at some point in our lives, we will all end up with some form of disability. Right. And so creating this access now will really help so many people even down the road.
[Doug]: Yeah. There's so many other things aspects to your life. We can't get to today because of time. So I'll obviously twist your arm and have you come back on here another time, you know, you're, you know, you're public speaking, you know, more into, you know, as a trainer and extreme athlete and many other things that you do. But you know, just kind what the final few minutes we have here, are there any, is there anything we didn't talk about today or any kind of like closing thoughts that you'd like to ruminate on?
[Rebecca]: Oh man. Where do we even start? I mean, I'm very, I don't know. I know we don't have time for questions. I'm so curious. You know, I think that part of what's been so difficult about this time is, you know, even just like not being able to embrace people, not being able to sort of touch them. And I know we all talk about this when we hear it, but I think in the beginning I was used to it, but now I really feel that deprivation and as part of why monkey and I sort of, you know, she gets way too much love for me for thing, but I do feel like this community because we are such a calf cow community that we really have been tested at, during this time. And so I really hope that to all of my sort of Deaf-Blind compatriots out there that just to let them to say that you're not alone, that we're in this together, even though we were very separate during this time. So, I mean, listen, there's plenty of things we could ruminate about. So maybe I'll leave that to you. Yeah.
[Doug]: Oh, that's, that's a beautiful sentiment to end on. And, you know, I encourage all of you watching, if you haven't already to read Rebecca's memoir, not fade away. It's really, you know, I was, again, just, I think just you right with such a, the, the, the way in which you, you tell your stories, I think really accessible and universal for anyone, in anyone's experience. And that's what I took away from it. And, you know, I'm excited to see what happens with this movie. I'll certainly be, be following along closely and definitely like bugging you for on it. But you know, it's going to be, it's going to be an interesting journey. And I think whatever happens from it's an important step along this journey. It's an important step along the journey of, you know, representing communities and individuals within those communities that haven't been represented before and finding ways to do that. And I'm sure there'll be, you know, successes from it and things that will be looked at to, to improve upon in the next one. And that's inevitable with anything we do, but it's definitely, I'm really excited and happy for it to be happening because it needs to happen. Like there needs to be more stories like yours, being told in film. Yeah,
[Rebecca]: I want it, you know, Doug, you just saying that reminded me of one thing that I think is important that I wanted to bring up. And that is when, when my book first came out, I went to Barnes and noble or various stores just to see if they carried it. And when I went there every time, even though it had just been released, they said, Oh yeah, they looked it up in the computer. Yeah. We have one copy. It's in disability. It's downstairs to the very back of the store. And that to me was, I was so disappointed that it was sort of, again, pigeonholed into disability, that this was a book that came out that was just as worthy. And I think that the human condition and the human experience is universal, no matter what your circumstances are. And so I was so frustrated that as soon as my book came out, it's like, yeah, let's throw this in disability in the back of the store were, you know, very few people, you know, look because I do think that that's another way in which representation needs to come out. You know, we have to have more people represented on the front tables of the store and not be sort of typecasted because it falls into this category.
[Doug]: I love that. Well, I, you're already a part of that evolution and I'm sure we'll, we'll continue to be so, so excited to see how that unfurls and again, so happy we were we're long overdue for this, but it was well worth the wait. You're just such an exceptional person and become a really great friend. And I'm very much looking forward to getting back to New York so that we can hang out again. And you know, I'm going to believe me, I'm going to need one of your workouts when I get up
[Rebecca]: Right. Every time. So every time you come to New York, I dragging for a workout and he was like, ah, geez, how am I going to get out of this full time? And you're such a doll.
[Doug]: Well, no, I need it this time. So I'm looking forward to that and thank you for, for all of you tuned in today. And, yeah, we'll be back next week, I believe at our normal time. And looking forward to it and yeah, again, Rebecca, I'm going to twist your arm and have you back on here at some point in the future. You got it. Thanks so much.