Oct 14, 2021
[MUSIC PLAYING] - You're listening to "That Real Blind Tech Show" with Brian and Ed.
BRIAN FISCHLER: I have a name for my chronic pain. It's called Ed.
REBECCA ALEXANDER: I wanted to say first we've met in New York.
ED PLUMACHER: I've read your book. I found it to be brutally honest and very straightforward.
REBECCA ALEXANDER: I think that the most important thing that I can tell people is that you want to find a therapist who specializes in grief and loss.
ED PLUMACHER: Hey Brian before we move on, I just have one question. I'd like to have your definition of inspiration porn?
REBECCA ALEXANDER: Oh my God. Ed, you are a doll to take this. Oh, man. I just-- I am just tickled. I wish I had popcorn here
BRIAN FISCHLER: I don't wake up anymore and think of myself as a blind person. It's just life. It's what it is.
- Here is Brian and Ed.
[APPLAUSE]
BRIAN FISCHLER: Welcome back to another "That Real Blind Tech Show." With me today as always or almost as always is my partner in crime, Ed Plumacher. How are you doing today, Ed?
ED PLUMACHER: I'm doing well there, Brian. How are you today?
BRIAN FISCHLER: I am fantastic 'cause the weather is getting ready to turn. And you know, if there's one thing I like it's cold weather and everything. I'm one of those freaks.
- You guys are freaks.
BRIAN FISCHLER: That likes it cold and everything.
ED PLUMACHER: Yeah. From a boy-- a boy from Florida loves a cold. That's interesting.
BRIAN FISCHLER: Hey, born in New York. It wasn't my fault. My parents dragged me kicking and screaming to Florida at four years old and everything. But I've been back in New York since 2000 though. So it's been a pretty long time.
ED PLUMACHER: Yeah, but you're still a Gator at heart.
BRIAN FISCHLER: When it comes to football. That's about at football, Florida Gators fan. That's right we got-- we got a game tonight and everything. But we're not here to talk football today because joining us today is a friend of mine who has Usher syndrome. But she's much more than that. She's a best selling author. She's an extreme athlete. She's also a psychotherapist. And if you listen to this show you know two things. I'm definitely a psycho who's in need of therapy. How are you doing today Rebecca Alexander?
[LAUGHTER]
REBECCA ALEXANDER: I knew there was something like that coming. I was just waiting to figure out what it was going to be. And, of course, I couldn't have predicted it. I'm doing well and I'm very happy to be joining you guys today. So Thanks for having me.
ED PLUMACHER: Well, thanks for joining us, Rebecca. It's great to meet you.
REBECCA ALEXANDER: He is well.
BRIAN FISCHLER: So Rebecca, let's start at the beginning. It's like, welcome to your life on "That Real Blind Tech Show." Take us back to when you were first diagnosed with a vision loss.
REBECCA ALEXANDER: Right. All right. So yeah. So I was diagnosed actually with retinitis pigmentosa, RP with the age of 12. I had difficulty seeing the blackboard at school. I was in the sixth grade. I told my dad. He took me to an optometrist. The optometrist said there was something in the back of my eye that his equipment wasn't sophisticated enough to identify what it was. So he sent us to an ophthalmologist. I was born and raised in the San Francisco Bay Area. So we went to UCSF and, you know, they did all of the different tests that they did. I guess this was in the early '90s. And you know, the contacts with the wires coming out of them, the Goldman.
BRIAN FISCHLER: Mh-hmm.
REBECCA ALEXANDER: You know, field of vision that we all know and love. And you know, for me at the time, I was just like, Oh, Jesus. All of this to get glasses. But-- so they, you know, told my parents that I had RP. We decided, I guess, to get a second opinion. We Went to Stanford and came up with the same information. So, you know, I was 12 years old. I don't know how you tell a 12-year-old that they're going blind when for all intents and purposes, at the time I could see relatively well. I grew up with dogs, so I tripped over them constantly.
You know, there were various things I had difficulty seeing at night. All of the usual symptoms you would expect. But I was also scared of the dark. So maybe I thought that, you know, it was just me being scared of the dark. And yeah. So that was my original diagnosis with RP. And so when we started getting involved, you know, with the Foundation Fighting Blindness and everything. At the time, we only knew that I had RP, that I had retinitis pigmentosa. I was told at a young age that I had what was called a cookie-bite of hearing loss. And they thought that it was from having frequent ear infections. There was not a connection made really between the two.
I used to watch TV out of the side of my left eye. And you know, what we came to deduct over time was that my left ear was always my stronger ear. So I think it was sort of this superimposed wave that I created to adapt to my hearing loss by, you know, cocking my ear, or my left ear, or my better ear forward to watch TV.
BRIAN FISCHLER: You know, it's funny Rebecca, you mentioned that afraid of the dark thing, and it reminds me when I was a kid. You know, what movie scared the bejesus out of me?
REBECCA ALEXANDER: Can't wait.
BRIAN FISCHLER: "ET."
- Elliott.
- What?
- Elliott.
REBECCA ALEXANDER: Oh, yeah. So scary.
BRIAN FISCHLER: And my mom said to me like 10 years ago, she said, "Brian, do you think that you were afraid of "ET" because you had a vision loss problem?" And I said, no mom I think I was just a giant freaking pussy.
[LAUGHTER]
REBECCA ALEXANDER: Yeah. That day, you too was scary. And when the whole scene with him with the stuffed animals. Ay-yi-yi.
BRIAN FISCHLER: That glow in the dark finger freaked me out. Elliot.
REBECCA ALEXANDER: Oh, no. Hold on it.
BRIAN FISCHLER: Elliot. Yeah. I believe it freaked me out, man.
[LAUGHTER]
REBECCA ALEXANDER: Toddler of young age, I went to like, a friend's house, and her mom just did not supervise us, and I think we had "Freddy The 13th" on. And I must have been in like, the second grade. So needless to say, I slept in my twin brother's room for good. I don't know when did I stop sleeping in this room. Like, a year ago.
[LAUGHTER]
Now-- but I always slept in his room for a good four years or so. Because I was just absolutely scared shitless.
BRIAN FISCHLER: Yeah. This movies will do that to you and everything.
REBECCA ALEXANDER: Yeah.
ED PLUMACHER: Aside from, you know, being diagnosed with retinitis pigmentosa, later on, I guess, usher syndrome, reading your book, I read about this your devastating accident which had a major impact on your life as well. Can you tell us a little bit about that?
REBECCA ALEXANDER: Yeah. You know, it's interesting because I wrote a memoir as you know. And thank you for reading it. And I know that generally, I assume that it usually ends up in people's bathroom as wonderful toilet reading. So I appreciate your taking the time. But what people oftentimes don't know is they think, Oh, yeah, here's a woman who wrote a story about-- her about her life living with a condition that causes death blindness. But a huge part of my life and to this day was impacted by this very serious accident I was in at the age of 18. I went out with some friends after, I guess, we were maybe celebrating graduation from high school or 18.
We stopped at a school playground, and just pounded alcohol, and made it to some nightclub for 18. And you know, I don't know whatever it was we made it there. I was OK to get in and soon after was too drunk. And so we had to go home. And my friends brought me home and put me into bed. And, of course, I don't remember any of this. But at some point, I got up to go to the bathroom, presumably at about maybe four or something in the morning. And I was still so, you know, delirious and intoxicated that instead of going from my bedroom door I went from my bedroom window.
BRIAN FISCHLER: Oh my God.
REBECCA ALEXANDER: And I fell out and onto our-- yeah, flagstone patio. I fell about 27 and 1/2 feet. So it's about almost three storeys. And I broke just about everything in my body. And I was supposed to be going to college in the fall. But, of course, those plans were pushed off. And I had just about every part of my body casted. Shattered my left foot, shattered my left hand, broke my right hand, broke my back. And the only thing that wasn't casted or broken was my right foot or my right leg. And so after, you know, many surgeries and bone graft from my hip to rebuild my foot, I was only allowed to leave the hospital when I was able to get myself out of a hospital bed into a wheelchair and out of the building in the event of a fire. That's how they determine whether you're ready to go home.
But the problem was the only thing I could use was my right leg. So I spent a lot of time, you know, in the hospital just figuring out how to get myself out of the hospital bed using just my right leg. And so I was home and recovered for a long time. And I still look back at that time as probably the point of really where I developed resilience and strength, not knowing that I would need as my diagnosis would be realized a little bit later on. Yeah.
BRIAN FISCHLER: That's incredible. I can't imagine the state of mind you must have been in while all that was going on. What was that like? Do you recall what it was like? I mean, was it just depression, mass depression or--
REBECCA ALEXANDER: You know, it's interesting because I was in-- so there is a combination of things, right? I mean, it forced my life to absolutely slow down. Everybody, including my twin brother who does not have RP or usher syndrome, they were going off to college. You know, my high school boyfriend, everybody was leaving. And it wasn't, like, I was staying home and I had some cool internship or that I was working. I was literally relegated to a bed and a wheelchair. I had visiting nurses that came to bathe me. And they couldn't bathe me in a shower or even a tub because I had so many casts. So I literally sat on a closed toilet seat with a visiting nurse in my birthday suit with--
BRIAN FISCHLER: Hmm.
REBECCA ALEXANDER: You know, a washcloth and soap. And we would just pass it back and forth. And-- and so it was an incredibly humbling experience, to say the least. You know, I had like, a calendar and I would cross off each day. And the one thing I look forward to were those doctors appointments or the physical therapy appointments that I had to put my body back together again, one bone at a time. And it was incredibly painful physically. But I think the drive and the motivation I found then was just to feel like I was going to be human again.
So yeah. It's a good question. I mean, you know, one of the biggest things that I contend with now is, yes, the vision and the hearing loss. But like many of us, I live with chronic pain. And I've lived with chronic pain for the last 20 something years since that accident. And that's another piece of life that I think we don't often hear people talk about.
BRIAN FISCHLER: I have a name for my chronic pain. It's called Ed.
[LAUGHTER]
ED PLUMACHER: There you go. Heard it.
REBECCA ALEXANDER: Oh, man.
ED PLUMACHER: When I read about your rehabilitation, the one thing I did come across with Rebecca is that you were able to get through that because you just had this incredible determination and-- and an awful lot of grit. Just reading that story was one of the most incredible things I've read about someone overcoming a tragic accident like that.
REBECCA ALEXANDER: Yeah. You know, I will tell you that the simplicity that you have to minimize your life to and how chaotic our lives have become, we create problems for ourselves, we create drama. I mean, to me, as wonderful social media is-- and this is how, you know, this podcast is likely going to be disseminated and get out there, it also can be sort of the bane of our existence. You know, and where people really sort of, create so much more than they knew to.
- Hi. This isn't real. You know what it is? It's St. Elmo's Fire. Electric flashes of light that appear in dark skies out of nowhere.
[GASPING FOR BREATH]
[BANGS]
[CRIES]
Sailors would guide entire journeys by it. But the joke was on them, there was no fire. There wasn't even a St. Elmo. They made it up. They made it up because they thought they needed it to keep them going and things got tough.
REBECCA ALEXANDER: For themselves. So needless to say, it was an incredibly trying time. But I was told by doctors, you know, at 18 that I was never going to walk properly again. That I was never going to be able to do a lot of things. And I could either accept that or I could say, you know what? Let's see. Let's see what I'll be able to do. And I think that. What's interesting is, you know, as I was growing up before they knew what my diagnosis was-- and I should mention as many of us have experienced, it wasn't just my diagnosis with RP, my parents were getting divorced at the same time.
- We're dealing with a lot of shit.
REBECCA ALEXANDER: And that really did a number on me, you know. So it's like, my parents told us they were getting divorced. It was a very difficult divorce and experience. And then I get this diagnosis. And it's not I never felt like I was the reason why my parents got divorced. I know that, that sometimes is a misconception. But I did feel like there was just a lot going on. And so I think that when all of this was happening before I got my official diagnosis. I was in the fourth grade when they separated and soon later divorced. I think that the teachers told my parents that I was going to be a cheerleader, that I had my head in the clouds, you know. They didn't know about my hearing loss and vision loss so much. And those were the messages I received.
And my brother, my twin brother was just like, killing it. You know, I was such a great athlete. And I was a good athlete, but I wasn't like you know the star of the team or anything. I mention this because it's amazing. How I think that having all of these messages that I received early on, how I came to use them and be like, yeah, no, I think I'm going to be the one to determine what my life is going to look like and what I'm going to be able to accomplish. And I think that when I got, you know, this information from the doctor that I wasn't going to be able to walk properly again, I will always have a little bit of a limp with my left foot-- But you know, I've climbed Mount Kilimanjaro, I've swam from Alcatraz to shore. There's a lot of things that I've done since that accident that I was told I would never be able to do. So there's sort of, interesting parallels between the two.
BRIAN FISCHLER: That's awesome. Now this next question it's kind of, I guess, a two-parter now. You've always been very athletic, I guess. One, what do you like most about competing? And two, do you think your drive for competing is what helped you get through everything you were going through?
REBECCA ALEXANDER: Yeah. You know it's interesting. I think so. I grew up with brothers. Right. So I was always like the designated referee for whatever we were was playing. Which was basically like, you know, just sit on the sideline, we don't really need you, but we'll let you play. And I think that I felt to a certain extent, like, in order to keep up. I kind of, had to, you know, really-- I mean, try to be a good athlete. I wanted to emulate what my brothers were doing. I wanted to fit in a bit. So I think, sort of, started there. But the computing thing is actually less about other people and more about myself. I'm highly competitive with myself of just wanting to prove myself to myself. If that makes sense.
But what I will tell you is that I do like competing. I do like being one of the stronger people in the room, or in the class, or on the team. I loved being picked first or early when they would pick teams for PE or whatever. But it's more about the way that it makes me feel. You know, that when I'm actually being physically active, I am so aware of the things that I can do and not focusing on the things that I can't do.
- Every man dies. Not every man really lives.
REBECCA ALEXANDER: And so that feeling of just being so alive, so present, so in the moment. Because we are incredibly capable of getting lost in-- in our own minds.
BRIAN FISCHLER: That's very true.
ED PLUMACHER: I know that having competed, and been very athletic, and everything, and then, you know, gone through your rehabilitation, and gotten older and things, you took up big classes and even took that as so far as to become a spin instructor. So is that a major part of your life today?
REBECCA ALEXANDER: Yeah. You know, so I became a spin instructor for a couple of reasons. First of all, I was in graduate school and I obviously was paying a ton of money to go to school. I was doing work-study, but Lord knows how much that pays. And so I figured, well, if I'm going to join a gym, I might as well get paid to use the gym. So part of it was just, you know, for financial reasons of just wanting to have this side income and also be paid to work out. And on the other hand, what is more ideal than being in a dark noisy room than being the one to control the lights and the music.
[LAUGHTER]
It wasn't like, I had to worry about hearing what the person was saying, or what music they were playing, or choosing, or how loud it was if I was the one running the show.
[MUSIC PLAYING]
- I thought of being an instructor, sir.
- Top Gun.
- Yes, sir.
- God help us.
[LAUGHTER]
REBECCA ALEXANDER: And that was really a part of why I became an instructor. I've always loved music from all different genres. And so I thought that really what makes a spin class good is not how hard the person works you but where they transport you in terms of the music. So music selection was a huge piece of that. Yeah. It's-- it's a good question. And it's still very much a part of my life today. Not necessarily-- not definitely spinning but I also do a lot of high intensity interval training. So yes.
BRIAN FISCHLER: And you've been doing this more over Zoom since the pandemic hit, correct?
REBECCA ALEXANDER: Yes. It's fantastic. I mean, there's nothing better for people who are low vision than to control the space that they exercise in and what are their obstacles are. And so I had to acquire a lot of exercise equipment during the pandemic in order to be able to work out from home. But secretly I love it.
BRIAN FISCHLER: Ed and I, are only a fan of the 12-ounce curl exercise, correct Ed?
ED PLUMACHER: No. Mine's are 16. I do pints.
BRIAN FISCHLER: Oh. OK.
[LAUGHTER]
So yeah. We're-- were not known for exercise on "That Real Blind Tech Show." I may have to change a few things here once we get back to, you know, post [INAUDIBLE]
ED PLUMACHER: Well, you'll have to join one of Rebecca spin classes, Brian.
BRIAN FISCHLER: I'd have to get a bike, and I don't know where it would go in this apartment and everything.
ED PLUMACHER: Brian, two things. You have to get a bike and then you have to get an insurance policy and made me as the beneficiary.
[LAUGHTER]
BRIAN FISCHLER: Now along with obviously teaching spin, we've mentioned that you're a psychotherapist. Now, I imagine with therapy-- and maybe I'm completely wrong, that a lot of therapy-- a therapist job is observing their clients and listening. As somebody who lives with ushers, how do you get over those two things? How do you as a therapist view your patients?
REBECCA ALEXANDER: Yeah. You know, it's interesting. We live again, in a time and place where you can Google anybody and everyone. So I don't know when people come in to see me, whether they've googled me and they know who I am, or whether they just think that I'm a psychotherapist. And they don't know that I wear cochlear implants, that I'm low vision. The environment for me to be in one on one in a quiet room is ideal particularly for somebody with-- you know, who lives with Usher syndrome. So that-- that's sort of, one piece of it. And I have my central most vision. I don't know where I'd say. Maybe I'm between 10 and 12 degrees. I'm not really sure it's probably closer to 10.
So-- but I don't hide it. I mean, I don't. If it's not relevant to the work that I'm doing, I won't necessarily volunteer and like, here, I know you're here to talk about your stuff, let me tell you what mine is. Because the reality is this isn't about me, it's about somebody else. But I will tell people when they come in immediately that I wear cochlear implants. And so if I don't hear them and I ask them to repeat themselves, it's not because I'm not listening, it's because I may have missed what they said. Because I want people to know that I'm tuned in. And I think it's important to know that the people we work with are human and have their own stuff.
One of the things I remember when I was doing my psychoanalytic training, I was applying for further education and advanced training at the American Institute for Psychoanalysis, and one of the analysts who ran the program, sat me down. I had to be interviewed. There's all this pomp and circumstance, and nonsense, and this hierarchy. And she basically just flat out said to me, so what are you going to do? How are you going to treat people when you're blind? And I wanted to say, fahrvergnügen you.
[LAUGHTER]
BRIAN FISCHLER: Good for you.
REBECCA ALEXANDER: I mean, but I literally-- and that was it for me that less than-- it was so offensive to me and hurtful. If I'm being honest, it was just so hurtful. Right?
BRIAN FISCHLER: Yeah.
REBECCA ALEXANDER: But like, as soon as I went blind that I would be useless?
BRIAN FISCHLER: Mm.
REBECCA ALEXANDER: But what more importantly, it wasn't about me. This to me said, this is someone who's incredibly narrow minded. This is somebody who doesn't have the ability-- and even someone as a psychotherapist. As someone who's the head of this program that, that was the first question she thought to ask, it was deeply disappointing. And that was the deciding factor, this is not the place where I'm going to receive further training. And not to mention everything I went through before then to try to let them know that the accommodations I needed for reading materials. You know, these are reading materials that came from like, the '70s that were in like, a six-point font.
BRIAN FISCHLER: That's what we call a shitty psychotherapist.
REBECCA ALEXANDER: Yeah. Yeah.
- I am handicapped. I'm psychotic.
ED PLUMACHER: She skipped the lesson plans on empathy.
[LAUGHTER]
BRIAN FISCHLER: Yeah.
REBECCA ALEXANDER: Right. I know. I mean, it's like, I didn't know if I could say, like, I'm not sure if you're serious or not, right now but it's very concerning.
BRIAN FISCHLER: So 30 years ago, Ed, she would have been a multimillionaire as a psychotherapist because A-L-E-X-A-N-D-E-R would have been pretty close at the front of the yellow pages.
[LAUGHTER]
REBECCA ALEXANDER: Fair enough.
ED PLUMACHER: Unfortunately half our audience doesn't even know what yellow pages are.
[LAUGHTER]
BRIAN FISCHLER: Well, that's because they're blind.
REBECCA ALEXANDER: Your blogging made me feel old.
- That's funny.
ED PLUMACHER: What was it that inspired you? What made Rebecca Alexander even want to become a psychotherapist?
REBECCA ALEXANDER: Yeah. That's a great question. You know, it's interesting. I originally you know, I went to Columbia and did a dual degree in public health in clinical social work. And part of the reason why I did two master's degrees was not because-- but while I was always interested in doing work abroad. I applied for the Peace Corps when I got out of college.
- It'll help you. Better prepare storing foods for the up and coming monsoon months. Also Tupperware products are ideal for storing leftovers to help stretch your food dollar. This too-caught seals and right container keeps hot dog buns fresh for days.
REBECCA ALEXANDER: I basically threw that application process realize, like, wait a second. You know, I grew up speaking French and I wanted to go to a francophone part of Africa. I was always fascinated by developing countries and Africa in particular. So I thought, all right. I'll go do the Peace Corps for a couple of years. And when I went through the application process, I started to realize just how remote some of these places and villages were. And it wasn't like of my hearing aids broke down, like, all right. Let's just go hop over to the audiologist and get these bad boys fix. Right.
BRIAN FISCHLER: There was no Costco?
REBECCA ALEXANDER: No, yeah. No Costco. And so I had to sort of, re-evaluate what it was that I was interested in. But I was always fascinated. I was medical sciences health promotion, disease prevention. So I had a lot of interest in that. But after I got out of school, I had to really think about what was sustainable for me for long term. And what I really enjoyed and what I really enjoyed most was learning about the human condition. You know, because I think that's what I've been most fascinated by is how people do what they do? How we become who we are? How we manage to face the challenges we face? You know. And what adversity does to us?
And so you know in my own process of coming to terms with the condition that causes death blindness, I do go through a lot of therapy myself. Going through parents who divorced at a young age for me that again that really did a number on me. So I found that it was incredibly useful for me in developing my own sense of identity. When I graduated from Columbia, I actually worked as a school social worker at the School for the Deaf in Brooklyn. And that's where I mastered my sign language. And later became well versed in tactile sign language, which is the language of the deafblind.
And I think that partially for me, a lot of doing this work of being a psychotherapist, and also learning sign language, and then becoming more immersed in the blind and the DeafBlind, and the deaf communities is developing tolerance with the discomfort. Because I think that so many people will be, like, yeah, you know I started reading your book. And I'm, like, hey, way too close to home. I couldn't do it, just couldn't do it.
- "Not gonna do it," wouldn't be prudent at this juncture.
And I'm, like, all right, you know, but I also think that we are so afraid to go there. And I think developing distress tolerance you know being in that position of really facing the stuff that makes us most uncomfortable as part of how we develop that resilience and empathy.
BRIAN FISCHLER: I'm one of those people that doesn't like reading books or watching movies about people that are-- I guess, when I was first going blind, I didn't like it. Now it doesn't bother me, I'm so used to it and everything. But do you see a lot of deafblind or just blind clients?
REBECCA ALEXANDER: You know that's interesting, isn't it? Because I have more deaf patients than I have blind and/or low-vision. And you know, there's a lot of people who have asked me why that is. Interestingly, I do think that the deaf community is a very social community. It's a very gossipy community in many ways. And so I think that partially, there have been people I haven't been able to take on because they know each other. And so I've had to refer them out. I also when I've had deaf patients, I've had to spread them out so that they're not in the waiting room together or anywhere close to each other.
But I have found-- and I'm curious to hear your thoughts from both of you on this. I have found that it seems that there's a tremendous amount of shame that can go into going deaf and going blind. But I have found that, that shame seems to be more pervasive among the low-vision community, the people losing their vision than even the deaf community. And I don't know. It's been very sad for me to see. But even coming to terms with using a cane, I found that people will not start using a cane until anywhere between about 5% to 15 years after they have been recommended to start using a cane. And so I think there's a lot of shame around it. There's a lot of-- I don't know I'm curious to hear your thoughts on that.
BRIAN FISCHLER: I think it's just that blind people are more--
- Favored moving.
BRIAN FISCHLER: Up than deaf people. [CHUCKLES] Ed, do you have a--
ED PLUMACHER: Yeah. Well, I think part of it too is Rebecca is our exposure to low-vision and blindness comes from the retinitis pigmentosa side. In the blind community, those with RP I've often heard it referred to as the death of 1,000 cuts. Because for most of us, not all, but, you know, 'cause some-- some of the progression is very rapid. It's just this long protracted degradation of vision that you just seem to adapt to certain levels and then next thing you know, all of a sudden, you know, it's gotten worse again and it's gotten worse again.
So-- so yeah. It could be this part of shame, this part of denial, my vision hasn't changed for a while, maybe I'm going to beat this thing. Or maybe-- maybe I'm one of those few people that can be in my late '60s, early '70s and still have 2020 central vision, even though it's only three or four degrees. You know, I could maybe have that just night blindness. So you know, all those things come into play. So people spend more time trying to figure out how to slow down the degradation than they do about moving on with their lives and living life, you know.
And that was part of the experience I had as well. And it wasn't until I finally came to terms with my loss of vision and then dealing with that. And just moved on, and embraced the cane. And embraced all the rehabilitation training I got and technology training I got after that to really go on and live a fulfilling life again, that I just overcame. That I'm comfortable in my skin today but it was a long, long process.
BRIAN FISCHLER: Yeah. And getting back to being more serious about it, Rebecca, I was working in Hollywood when I first started losing my vision-- and it was interesting that you used the word shame. It wasn't anything I could control. But thinking back, I did feel a lot of shame. I remember I wasn't walking with a cane. You know, this was the '90s where people weren't as understanding in corporate America as they are today. Where I had to keep hidden that I was losing my vision and everything. Because it was viewed as a weakness, as a skill set almost. Not something that I was living with and could thrive with.
And I was in my '20s, I was 21, 22. So mentally I don't think I was capable of really saying, you know, I'm going blind, does it affect me? Yeah, we're driving. That sort of, thing. But I'm still capable of performing at an extremely high level. And I wasn't the person I am now. So I think with going deaf or blind, and deaf blindness, everybody deals with it differently. I mean, it depends on your economic situation. It depends where you are age wise in life. It depends how mature you are and everything.
And yeah. It's great nowadays that there are so many services and psychotherapists like, yourself. That people who are dealing with this, whether it's somebody that's new that's dealing with it or somebody that's been dealing with it their whole life, It's great that there are so many resources to help people cope and deal with things. 'Cause everybody deals with traumatic issues throughout their life when they're younger as well as older.
REBECCA ALEXANDER: Yeah. You know, I think that one of the most important things people often will reach out to me and ask me, you know, if I am taking new patients, clients, whatever. And/or they, you know, live in some part of the country-- you know, this is pre-COVID. During COVID, I definitely took people on in all different parts of the country, because we could. And the HIPAA laws were alleviated, so that we could work across state lines. But when people ask me, like, what type of therapist they should look like-- because we do need more therapists who are low vision or not just people who are actually born blind. Because we all know that that's a spectrum, too, right? People who are born blind, versus people who have progressively lost their vision.
I think that the most important thing that I can tell people is that you want to find a therapist who specializes in grief and loss. Because one of the primary things I think we don't really talk about just in general, in life, is how much grief and loss is a part of our lives, not just when you lose a significant other, a loved one, or a close friend, or for my case, a beloved pet, but when-- just the experiences of grief and loss, as they come in all different forms.
And it may be a stage of life. It may be hearing. It may be vision. It may be just mobility functioning. There are so many different ways in which we experience loss. And we don't talk about it as though it's a part of the human experience, a human condition. And yet it is an integral part of our lives. And we have to allow the room and the space for it, so that we can alleviate that shame and so that we can be more open about what we go through, right, and share the experience with others.
BRIAN FISCHLER: You know it just hit me do you think that Tony Soprano seeing a therapist made therapy- because, you know, there was a time where therapy was looked down upon, not on the therapist, but on the individuals that were in therapy. Do you think like a macho movie TV character like Tony Soprano regularly seeing a therapist has helped maybe more people go out and seek a therapist for help?
REBECCA ALEXANDER: You know, I think it would be an excellent case study for someone to study and maybe media and psychology to see whether the impact was there, certainly. I certainly think that it didn't hurt.
BRIAN FISCHLER: Yeah.
REBECCA ALEXANDER: But I think that it was absolutely fascinating. People love movies or shows where there's therapy involved. They want to know what goes on in there, right? I think that there's probably a good chance that it had an impact on the number of men--
BRIAN FISCHLER: Yeah.
REBECCA ALEXANDER: --who go in and seek therapy. I mean, the number of men that I have in my practice now is far greater than it ever was at any other point in time.
BRIAN FISCHLER: Yeah. Yeah, I'd be curious to know that. That'd be an interesting case study.
ED PLUMACHER: Well, I have a question for you, Brian.
BRIAN FISCHLER: Yeah?
ED PLUMACHER: Going you with your media genre and everything-- so what came first, Tony Soprano seeing a psychotherapist or "Analyze This," with Robert De Niro and Billy Chris?
[AUDIO PLAYBACK]
[POURING SOUND]
- You know, normally, a patient wouldn't have a vat of Scotch during a session.
- That's an interesting fact I'm going to have to remember if I'm ever on "Jeopardy."
[END PLAYBACK]
REBECCA ALEXANDER: [CHUCKLES]
BRIAN FISCHLER: "Analyze This," I believe, came out first. It came out like six months before the "Sopranos" aired, I believe. I'd have to double check that. But I remember thinking, wait a minute. Didn't they just do this as a movie and everything? But that was more a comedy.
But it was interesting the timing. I believe "Analyze This," the first one, came out about six months before "The Sopranos" aired, and everything. So it was very close, though, and everything. A lot of ideas-- I mean, look at "Tombstone" and "Wyatt Earp." The same exact story came out six months apart and everything. So just because one person has an idea doesn't mean another person has it. Sometimes Hollywood runs with both of them.
Now, we know you can't get into too many specifics about specific clients, Ed Plumacher. But is there a more--
REBECCA ALEXANDER: [LAUGHING]
BRIAN FISCHLER: --humorous story?
REBECCA ALEXANDER: Oh my God, Ed, you are a doll to take this. Oh man. I just-- I am just tickled. I wish I had popcorn here. Anywho. So is there-- oh, man, how many do we-- I mean, how much time do we have? That might be another show.
BRIAN FISCHLER: One or two [INAUDIBLE].
REBECCA ALEXANDER: Yeah, OK. Well, so, listen. You know, there are certainly the number of fetishes that I see out there, unlike anything I've ever known before. We walk right into that. This is-- what is this? PG-13?
BRIAN FISCHLER: Ish.
REBECCA ALEXANDER: But--
ED PLUMACHER: You can't talk about Brian's fetishes. [LAUGHING]
REBECCA ALEXANDER: Right.
BRIAN FISCHLER: No peanut butter and the dog, no, no, no, no.
REBECCA ALEXANDER: Yeah, no, we NDA'd that one. So here's what's interesting. I mean, you know, to stay on theme with this and not to become that therapist that ever discloses anything that could be seen as immoral or unethical, I will tell you that I have had many people come in, you know, who have googled me. I've had people tell me-- someone who-- I could barely hear her speak.
[AUDIO PLAYBACK]
- [INAUDIBLE]
[LAUGHTER]
- What's that?
- Excuse me?
[END PLAYBACK]
REBECCA ALEXANDER: And so I had to say to her-- because she was talking about a lot of things. And this is not someone who are vision or hearing issues.
BRIAN FISCHLER: Mm-hm.
REBECCA ALEXANDER: But I could really hear her speak, because she was talking about a lot of things she hadn't talked about out loud with anyone before really, let alone a stranger or therapist. And I finally said to her, listen, unless you want me to come over and sit on your lap, I--
BRIAN FISCHLER: [LAUGHING]
REBECCA ALEXANDER: --I can't-- I can't hear-- I can't hear you. And I certainly can't help you, if I'm not able to hear you. And ultimately, I ended up having to terminate with this client, because I really felt-- it was so weird that I felt this tremendous sense of, you know, just lack of ability in helping her. Because clearly, even me asking her to speak up and even at some point jokingly saying, "unless you want me to sit on your lap, we're not going to make any progress."
[AUDIO PLAYBACK]
- Oh, excuse me, your honor. Well, what is the point of this testimony? This woman is a low talker. I can't hear a word she's saying. So I had to get some other kind of microphone up there. Well, let's move on.
[END PLAYBACK]
BRIAN FISCHLER: You didn't have to end up wearing a puffy shirt like Jerry Seinfeld, with--
ED PLUMACHER: I was thinking the same thing.
[LAUGHTER]
REBECCA ALEXANDER: Oh, my goodness. No. But maybe that would have saved me.
BRIAN FISCHLER: Yeah.
REBECCA ALEXANDER: But I've definitely had many people ask me if I can see them. I've had many people say that they don't know if I'll be able to help them, because I'm going blind, you know. And I get caught off guard here and there by people who ask me questions that are like either-- partially, it makes you think, at least initially, really, in your mind, you thought that was the way you should have asked that question or make that statement?
[AUDIO PLAYBACK]
- That was the biggest load of crap I've ever heard.
[END PLAYBACK]
REBECCA ALEXANDER: But you know, people are human. I mean, they're flawed characters. We all are, right?
BRIAN FISCHLER: You know, I'm thinking about it now. And I would also have to think there's a certain segment of society that would like going to a blind therapist. Because you're not judging them visually at all.
REBECCA ALEXANDER: Yeah. You know, there's so much that we pick up for visual cues in terms of whether someone's holding a pillow in their lap, because, you know, in some ways, they're guarded, or they're trying to sort of protect themselves, or block themselves from me really seeing them. Or maybe they're repeatedly tracing over the lines of the texture of a pillow. There are so many different visual cues that we get from people that also occur, actually, in terms of the way that-- in the way that they speak and whether their speech is pressured, and whether they're speaking loud or whether they are speaking or softly, and how long it takes them to be able to process a question and respond.
And so it is interesting how, I think, we're able to adapt our abilities as they continue to change and start to have to rely on other cues to process or try to help someone understand why they may be communicating or handling things the way that they are.
BRIAN FISCHLER: Now, does it mean something different if they're closely holding a pillow, compared to closely holding a Japanese sex pillow on their lap? [LAUGHING]
REBECCA ALEXANDER: You know, that is an excellent question. I'm going to leave that one to Ed.
BRIAN FISCHLER: Ed?
ED PLUMACHER: [LAUGHING] Gee, thanks. You'll have to tell me your experience, Brian. I don't have a lot of experience with Japanese sex pillows.
BRIAN FISCHLER: Hold on. Let me lay down. Let me lay down.
REBECCA ALEXANDER: [LAUGHING]
ED PLUMACHER: [LAUGHING] I'd like to know what situations you've run into. I mean, you moved to Manhattan. You've lived in New York City for a while now.
BRIAN FISCHLER: Yeah.
ED PLUMACHER: Being a woman in New York, how often would you have somebody come up to you, a guy in a bar-- Hey, how are you doing? You just start talking. What do you do?
REBECCA ALEXANDER: Right.
ED PLUMACHER: What do you do? All of a sudden, you mention, oh, I'm a psychotherapist. And you just see them, like, fade away. [LAUGHING]
REBECCA ALEXANDER: Totally. Well, and this is what's funny. I don't know if you guys-- you know, it's a show. It's not a movie. But I don't know if you guys remember on "Saturday Night Live," I believe it was Will Ferrell who was playing Alex Trebek. And he was one of the candidates. And I think it was what's his name, the wonderful comedian--
BRIAN FISCHLER: Sean--
REBECCA ALEXANDER: --that just passed. It was Sean Connery. You're right. Sean Connery was playing it. And I think it was--
BRIAN FISCHLER: It wasn't Norm MacDonald. No, he played Burt Reynolds.
REBECCA ALEXANDER: He played Burt Reynolds.
BRIAN FISCHLER: One of my favorite-- I'll let you tell it.
REBECCA ALEXANDER: OK, but-- so it was Will Ferrell. And he said, yes, I will take "The Rapist" for 200, please.
BRIAN FISCHLER: "The Rapist."
[AUDIO PLAYBACK]
- Mr. Connery, why don't you pick?
[LAUGHTER]
- It looks like this is my lucky day. I'll take "The Rapists," for 200.
- That's "Therapists."
[LAUGHTER]
[END PLAYBACK]
BRIAN FISCHLER: Yeah. [LAUGHING]
REBECCA ALEXANDER: "The Rapists." And I have to tell you, to this day, it's one of my favorite jokes of all time. When people say, so you're a psychotherapist? And I say, excuse me, I'm a psycho, the rapist.
BRIAN FISCHLER: Psycho the-- the-- that's therapist.
ED PLUMACHER: [LAUGHING]
REBECCA ALEXANDER: Oh my God, it is fantastic.
BRIAN FISCHLER: It is. It is so funny.
ED PLUMACHER: Absolutely. Absolutely.
REBECCA ALEXANDER: Totally. But to answer your question, Ed. When I was coming to terms with using my own cane, I remember years ago-- and then, let's be clear. The first four or five times, six times I used my cane in public, I cried, which fortunately, when you live in New York City, if you're using a blind person's cane, and you're walking down the street and crying, it doesn't draw that much attention.
But I do remember walking down the street. I must have been in my, like, mid to late 20s. And I was practicing with the cane. Wasn't psyched about using it. And I see there's this group of, like, hot guys walking towards me. And I'm like, well--
[AUDIO PLAYBACK]
- Fahrvergnügen.
[END PLAYBACK]
REBECCA ALEXANDER: Great. I'm sorry, fahrvergnügen great.
ED PLUMACHER: That's correct.
REBECCA ALEXANDER: I mean, [LAUGHING]. But you know, just like-- and I mean, it was-- at the time, of course, it was just like, of course, you know. All I could think-- I was like, these guys aren't looking at me. All they see is this cane and like, completely dismiss me as a potential girl that they'd want to-- forget about date, want to hook up with.
And you know, I think being able to face that and have to kind of keep walking-- because so much of what we go through, whether it's with vision loss or hearing loss or both, or whatever our circumstances are, is a lot of trying to cover up or mask whatever it is we're contending with to the general public. And I wasn't able to mask it. It was something that I was, like, quite literally facing my fear of using my cane and having this group of guys walk towards me and just having to sit with that.
And it was wildly uncomfortable, and yet it was so crucial to my own ability to just come to terms with it. Like, this is what it's going to feel like, and it doesn't feel good. And guess what? Life has a lot of that in it.
BRIAN FISCHLER: Yeah.
ED PLUMACHER: Yeah. Yeah, you know, you have a-- you have a lot of great experience that you've put together throughout your life. You wrote a book, "Not Fade Away." You mentioned earlier that some people have told you it hits too close to home. I've read your book. I found it to be brutally honest and very straightforward at times, yet it was hitting very close to home. What inspired you to write this book and tell your story?
REBECCA ALEXANDER: Yeah. You know, that's a good question. There was a piece written about me for "New York Magazine." I want to say it was like 2008. And it was-- I think it was called "Going Blind and Deaf in a City of Noise and Lights."
And so a literary agent came across it. And he approached me. And I must have been 28. And he said, you know, I think you should write a book. And I was thinking-- we met for lunch at a diner. And I'm like, nobody wants a 28-year-old writing a memoir. Like, you've got to be pretty full of yourself to think that you have things to say that someone's going to want to hear.
So some time passed. And I started doing more work just with various organizations, just to raise awareness. You know, my brother is a NBC White House correspondent. And he's an anchor of the "Today Show" on the weekends and does NBC "Nightly News."
And so he had a couple of stories about me on the "Today Show," which I was tremendously grateful for. Because for us, it was about getting awareness out there and letting people know that they're not alone. And so after a fundraiser I did-- a spin-a-thon, actually, to raise money for Usher syndrome, it was written up in the "New York Times," the Nostalgia section. What do they call that-- the ladies' sports section?
BRIAN FISCHLER: [LAUGHING]
REBECCA ALEXANDER: And where all the wedding announcements are, or whatever. It's probably not PC now to say that.
ED PLUMACHER: That's Brian's favorite section. [LAUGHING]
REBECCA ALEXANDER: Oh, naturally.
BRIAN FISCHLER: Hey, a guy can have dreams about his big day.
[LAUGHTER]
REBECCA ALEXANDER: So the same literary agent approached me again. And I must have been, I don't know, 31 or so. And I figured, you know what? All right, let's do this. Because at the very least, I want people to know, that what they go through, that they're not alone, you know? So it's a very lonely experience to go deaf and blind, especially in your 20s and even in your 30s.
And so I used a lot of my journal writing. And it was very cathartic. It was incredibly cathartic to write.
BRIAN FISCHLER: While putting your book together, what technologies did you use to write your story?
REBECCA ALEXANDER: Large font. And I had my literary agent's wife, she co-wrote with me. So I would literally go there to their apartment in Brooklyn twice a week, and she would ask me questions. And at times, when it was just too much for me to be typing and rechecking it, she would ask me a question. And she would type up what I responded with. And then we would review it.
So this was-- I'm 42 now. I think it came out when I was 34. 34? Or 35-- I don't even remember. But it's funny now, when I think back on the book. It's a little cringey, because I feel like so much more has happened, and then I've grown up a lot--
BRIAN FISCHLER: Sequel.
REBECCA ALEXANDER: --since that time.
BRIAN FISCHLER: Sequel.
ED PLUMACHER: Sequel. [LAUGHING]
BRIAN FISCHLER: The best thing about using a large font when writing a book, you're like, God, I feel like I only wrote 20 pages. And then you read it in large font, and it's, like, 234 pages. [LAUGHING]
REBECCA ALEXANDER: I wrote a chapter and I'm like, so, I guess this'll wrap it up, huh? 300 pages. Great. Yeah. So you know-- and now-- I think I told you, Brian. But we're-- they're in the process of making my book into a movie. And so dealing with all of that has been just nothing shy of a total headache and dealing with the anticipation of how much feedback you're going to get. Because as you know on social media, people-- there's nothing people like more than being offended. They're like waiting--
BRIAN FISCHLER: Oh God.
REBECCA ALEXANDER: --to have commentary and be offended.
BRIAN FISCHLER: Has the actress followed you around at all yet or not yet?
REBECCA ALEXANDER: We're getting there. Yeah, we're just-- Yeah.
BRIAN FISCHLER: Can you say who's going to be portraying you? I believe I read it online.
REBECCA ALEXANDER: Yeah. So I think we're-- we're in transition now, luckily. But you know, this is another debate and probably a subject for another podcast conversation, as-- and people are saying, well, we want authentic representation.
BRIAN FISCHLER: Oh God, yeah.
REBECCA ALEXANDER: Yeah.
ED PLUMACHER: That's why when they do the movie, Rebecca, and they do the segment on your appearance on That Real Blind Tech Show-- because we know it's going to be a pivotal point in your life--
BRIAN FISCHLER: [LAUGHING]
REBECCA ALEXANDER: Naturally. Naturally.
ED PLUMACHER: You know, I expect when Brad Pitt follows me around to play me, that it won't be too disruptive at work.
[LAUGHTER]
REBECCA ALEXANDER: Well, you know, we may have to speak to his agent about that.
BRIAN FISCHLER: I get that whole debate. They want authenticity. But it's gotten a little out of control. And was Emily Blunt going to play you initially? Was that who it was?
REBECCA ALEXANDER: Yes. Yeah, that's who they announced. And you know, it's funny. I mean, this is the way this goes, that people-- I mean, I found out as everybody else did. I guess it was posted to whatever online website or social media. And I just had a slew of text messages, like, Oh my God, that's amazing. And I was like, what's amazing? I mean, I really didn't know--
BRIAN FISCHLER: Really?
REBECCA ALEXANDER: --earlier than the rest of the world. And we've come a bit further now. Netflix bought the rights to it. I actually am not against authentic representation. But I will say that I agree with you.
What's interesting is that you need to find someone then. And you know, they have asked me many times, because there are all of these different types of organizations who, in my opinion, have capitalized on disability, who claim to be sort of in an effort to increase awareness and representation of people with disabilities. But I actually think that, in some ways, they take advantage of it.
And disability is so broad, that you guys know-- I mean, people-- I'm a disability rights advocate. And oftentimes, people will say, well, you know, I have a friend with cerebral palsy, or I have a friend who uses a wheelchair. And I'm like, listen. I have plenty of friends who use a wheelchair or maybe have cerebral palsy, but I'm not an expert. Because that's not my disability.
BRIAN FISCHLER: Yeah.
REBECCA ALEXANDER: You know, I'll stick to the blind and the deaf thing. That's kind of my jam. But so-- so basically, when they ask me about it, I have found that historically, people with vision loss are just as ignorant and uninformed about hearing loss as the sighted community and the hearing community. It's just so-- it's just complicated. And we'll see what happens.
BRIAN FISCHLER: Yeah.
REBECCA ALEXANDER: See what happens.
ED PLUMACHER: When your book became optioned, was that something that-- did you pitch the book to them, or did they come knocking at your door. Or how did this whole process start?
REBECCA ALEXANDER: Yeah. You know, I was actually about to give a book talk when my book came out in Los Angeles at a Barnes and Noble there. And-- do Barnes and Noble still exist? They do, right? I don't know.
ED PLUMACHER: Yes. Yes.
REBECCA ALEXANDER: Anyway, so-- OK, that's good news. I'm glad that people are still able to read, not simply just what's posted online. Anyway, so I was heading into the Barnes and Noble. And I got a call from my literary agent. And he asked me if I was sitting down, and I said, no.
So I found a seat on a bench next to a homeless guy in Santa Monica. And so he just told me-- I did not mean to sit down next to a homeless person, but you know that vision loss thing, how that goes. And he just told me that they-- there were two different producers, or directors, who were interested in purchasing the rights.
And so I had to go-- I interviewed both of them and ended up going with the movie option. Because I was told TV never-- I don't know. In the whole-- listen. Every time I talk to Hollywood, I feel like I need to take three showers after I've gotten off the phone with them.
BRIAN FISCHLER: Well, after this podcast, you only need two. So we're--
REBECCA ALEXANDER: Oh, that's good news.
BRIAN FISCHLER: --one step above Hollywood. Well, we'll be keeping our fingers crossed and following along to see, you know. Hopefully, it makes its way to the big screen or the streaming string or some kind of screen, and everything. Because it's a phenomenal story. But what advice might you have for other deaf-blind writers out there as far as getting their story to the page? Even if it's not going to end up in a big Hollywood movie, would you encourage others to share their story?
REBECCA ALEXANDER: Absolutely. You know, I think that these days, there's so many options for self-publishing. The publishing world has really been hit hard because of digital media, right? And these days, sadly, it seems that one of the primary factors or what helps people decide whether they're going to sign someone to write a book is even how many followers they have on social media, which I think is too bad. Because I think there is an authenticity that comes with not having to follow so closely in the mainstream.
But more importantly, everyone has a story. Everyone has their experience. And I've found that reading memoirs throughout the years has been incredibly helpful to me, even if it's somebody who has been through a totally different experience than I have, that has nothing to do with losing the vision or hearing. There's always pieces in their book that resonate with me, that really, again, amount to being just human.
And so I encourage people to write. I think that if you are trying to do something more ambitious and write and be published, that when we start writing for an audience, that's when we lose our voice, that you really need to write for yourself. You need to write thinking that you're not writing to a mass audience, but maybe to someone who is like your best audience.
In my case, I'm my older brother's best audience. He's so funny. And so people often say that I'm his best audience. But who is your best audience? Who is someone that you feel most comfortable sharing your stories with? And so maybe write as though you're writing to that person or write it as though your journaling. And I think that when we try to be too specific in terms of writing a book and wanting to let it go to the masses, that we lose the integrity and the authenticity of our voice.
BRIAN FISCHLER: I think that's excellent advice.
ED PLUMACHER: Yeah, if we ever write a book, Brian, we could use That Real Blind Tech Show audience, you know, because it's only three people we have to worry about.
[LAUGHTER]
REBECCA ALEXANDER: Well, now it's four, Ed. You've got four people now.
ED PLUMACHER: Excellent. You've accomplished so much. And you mentioned that you were 42 years old. And wow, you've done so much in those 42 years. What does the future hold for Rebecca Alexander?
REBECCA ALEXANDER: That's an excellent question. You know, hopefully, the future holds for me more dogs in my life. One thing that makes me happier than anything is our dogs. But people say, like, what's next for you? Like, you've climbed Mount Kilimanjaro, and you swam from Alcatraz to shore. What are we going to do next?
And for me, I think a lot of what I would love to be able to do is just be able to sit with the things that I have accomplished and continue to work with organizations and people individually to improve their accessibility. I mean, for people with vision and hearing loss, one of the things that I think my biggest goals right now is, is to take this age-old idea of disability as inspiration-- I mean, we all know what inspiration porn is-- and to move away a bit from the inspiration porn and start moving towards less about what people have overcome in spite of their disability and more of who people are and "oh yeah, they have a disability."
BRIAN FISCHLER: Yeah.
REBECCA ALEXANDER: I just think it's become a little bit too inspiration porn. And we need just to start making things more mainstream. Accessibility needs to be more mainstream.
BRIAN FISCHLER: There's nothing I hate more when it's somebody that I've just met or I barely know, and they give me the you're my hero. I'm like, you don't know me.
[AUDIO PLAYBACK]
- Come on, you little party girl. That's it. Come on. Fun little games-- you want to play the fun little games? Come on, you nasty little, cute little baby. What are you doing? Mike, Mike, Mike, Mike, stop. Don't-- don't, don't.
She's smiling at me. She's playing fun little baby games. She don't know me. She doesn't know my address. Do you know my address, you little [INAUDIBLE].
[END PLAYBACK]
BRIAN FISCHLER: You know, it's just insulting and everything. I can't stand that, and everything, because--
ED PLUMACHER: Well, if they knew, they wouldn't say that.
[AUDIO PLAYBACK]
- Whatever. I don't have to be like everyone. Some people don't like me. I don't like certain people.
[END PLAYBACK]
ED PLUMACHER: [LAUGHING]
BRIAN FISCHLER: I'm pretty guarded. I live a for-- I live a fairly private lifestyle, not--
ED PLUMACHER: Yeah.
REBECCA ALEXANDER: [LAUGHING]
ED PLUMACHER: Hey, Brian, before we move on, I just have one question. I'd like to have your definition of inspiration porn.
BRIAN FISCHLER: Me?
ED PLUMACHER: Yeah. [LAUGHING]
REBECCA ALEXANDER: Yeah, we want to know your definition, Brian.
BRIAN FISCHLER: Well, I can't. [LAUGHING] Ed wants me to tell us-- he's been trying to get me to tell the-- I could tell Rebecca. This part will not make the show. Basically, I would sum it up in two words-- Ed's sympathy f--
[AUDIO PLAYBACK]
- Fahrvergnügen.
[END PLAYBACK]
[LAUGHTER]
REBECCA ALEXANDER: Oh, man. I don't know why that won't make the show. That's fantastic.
BRIAN FISCHLER: Yeah. It-- I don't know. We'll see. Maybe-- maybe I'll edit it and put it-- I'll have to hear how it sounds. But--
REBECCA ALEXANDER: Yeah.
BRIAN FISCHLER: --there's a story behind that that definitely can't make the show, but--
ED PLUMACHER: [LAUGHING]
REBECCA ALEXANDER: Well, then by all means, I got to hear that story.
[AUDIO PLAYBACK]
- We interrupt our program at the request of the White House. This is the emergency broadcast system. All normal broadcasting has been discontinued during the emergency.
[END PLAYBACK]
REBECCA ALEXANDER: That's different.
[LAUGHTER]
You said, I get them all the time?
BRIAN FISCHLER: Yes. Yeah.
REBECCA ALEXANDER: That's fantastic.
BRIAN FISCHLER: So Ed loves bringing up that story, and everything. And he--
REBECCA ALEXANDER: That's fantastic.
BRIAN FISCHLER: But now getting back to, though-- seriously, though, Rebecca, what's your definition of--
REBECCA ALEXANDER: Yeah. [LAUGHING]
BRIAN FISCHLER: --inspiration porn?
REBECCA ALEXANDER: Well, so inspiration porn is people get these, like, videos. First of all, inspiration porn happens at the end of NBC "Nightly News." It happens at the end of, like, the whatever the nightly news story is. It's not just NBC. It's ABC. It's CNN, as other stupid news broadcasting has it, where their end story is the "make you feel good" story about the family who's--
The husband and father, he became an amputee, because his Humvee was hit when he was in Afghanistan. And look, they've retrofitted his house. And so now he can live like every other person. And he has just all of the retrofitting to live a comfortable life, which is incredible, which is wonderful.
But the fact that this is something that we do so that people can say-- here's how I explain inspiration porn. When I was being trained, an analyst once said to me, that when someone calls you an inspiration, what they're saying is better you than me.
BRIAN FISCHLER: Hm, yeah.
REBECCA ALEXANDER: And that always stuck with me. Because what it is is that that makes me feel so much better, knowing that this person-- his quality of life is not just reduced to having a disability. Or when sometimes, we see the video clip of someone who been cochlear implanted, and they're activated for the first time, and let's say it's a child. And that child's face lights up the first time they're given access to sound.
And then the video clip stops. And the person watching it, who has no experience with hearing loss, is like, oh, I'm so touched. This deaf kid now can hear again, and life has gone-- everything is, like, just improved for them. And it's nothing like that, you know, that it's just sort of a way that we try to create this us and them, that somehow, people who have disabilities are people we should really feel sympathy for, or that we should pity in some way, or that we should hold in different regard than we do anybody else.
BRIAN FISCHLER: So Ed, would do you say my definition as sympathy--
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BRIAN FISCHLER: --was way off?
ED PLUMACHER: [LAUGHING]
BRIAN FISCHLER: I like that we can all have different definitions of it.
ED PLUMACHER: You know, every perspective is your own reality. So-- [LAUGHING] But I love-- I love Rebecca's definition. It was awesome.
BRIAN FISCHLER: And I do, too. I do, too.
ED PLUMACHER: Now that we've exhausted that, can we move on to perspiration porn?
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BRIAN FISCHLER: Rebecca, in my opinion, you deal with everything so fantastically well. If I was somebody out there that's newly dealing with Usher's or losing my hearing or vision, what advice might you have for somebody that's new to this journey?
REBECCA ALEXANDER: You know, I think that we have a tendency in general, whether, again, it's Usher syndrome, RP, [INAUDIBLE], whatever you're-- whatever you're facing, whether it's disability-related or not, we just macro everything. We look at the bigger picture, and we overwhelm ourselves. We become incredibly anxious, because we think way too far ahead.
And we don't think about the here and now. What are you to do to get through today, what I need to do this week? And I think that when we start to think too far ahead-- you know, if I were ever to think of myself, when I was younger, as being as deaf-blind as I am now, I definitely would have said, I'd rather die.
BRIAN FISCHLER: Yeah, me, too.
REBECCA ALEXANDER: And I mean, hands down, no question-- I mean, when I gave a TED Talk, that was, I think, the first line of my TED Talk, is that if someone told me 20 years ago that I was going to be deaf and blind, or whatever, I would tell you I'd rather die.
And the irony is that my life is far more meaningful and more fulfilling now than it ever was at the time. But we can't quite wrap our heads around that, when we get an overwhelming diagnosis, because I think we have to allow ourselves to go through the process of whatever stage we're in, when we're in it, and not think further ahead than that. You have to be where you are.
And I think sometimes, when I've spoken on panels, and they say, what advice would you give to a parent whose kid, whatever the case is? And people say, well, you just have to teach them to be self-confident. Like, you guys both said, we didn't get here overnight.
There's a lot of grit. There's a lot of tears. There's a lot of discomfort. There's a lot of humanity in the process. And unfortunately, you have to really allow yourself to just be where you are.
BRIAN FISCHLER: Yeah. Yeah, it's-- Ed and I, we've both all, like yourself, Rebecca, have gone through our trials and tribulations. And I've been to my own hell and back in everything. And I think everybody's experiences are different. And it's how you handle it.
And the one thing that you could take away from this, you're going to get through it. You're going to get through it. Things can change for the positive. And I don't wake up anymore and think of myself as a blind person. It's just life. It's what it is, and everything.
REBECCA ALEXANDER: Yeah. Yeah, and I also think it's important for people to know that there are-- there is hope out there, you know, that yes, you're right. I mean, socioeconomic status has a lot to do with what we have access to. But there are tremendous resources out there that are not costly, too.
And there are a lot of people in the community who are doing a lot of important work and that can be supportive and helpful. And so I think part of our biggest issue of reaching out to that is not wanting to admit or acknowledge that we're a part of it, that maybe that-- that we ourselves live with whatever that community lives with. And you can go and reach out to those people and also, still not accept that that is something you feel comfortable acknowledging as something you live with. They can coexist.
ED PLUMACHER: Yeah, that's the one thing that I wanted to say, too, is that in this day and age, there's no reason to go through this process alone.
REBECCA ALEXANDER: Yeah.
ED PLUMACHER: In the age of internet and social media, the number of agencies and organizations and government agencies that are involved in helping people with disabilities, whether-- regardless of what it is-- that's why I really enjoyed your book, Rebecca. Because, like I said before, it was brutally honest.
And yes, it is close to home. And the reality is, people think that they're experiencing all these feelings and that they're unique to them. And when you get exposed to whether it's a support group or therapy or you read a book like yours, you realize, oh, this isn't unique. Other people feel this way. Other people overcome these things. And that could be the start of a path to just overcoming your obstacles and just leading the way to a fulfilling life.
REBECCA ALEXANDER: Mhm. And you know, to add to that, Ed, one of the things that I really try to focus on in my practice, and just sort of generally as my message, is that, to me, I think we have to also turn a little bit away from overcoming obstacles and talk more about living with them. Because I'm not going to overcome blindness.
I mean, sure, listen. I told Brian at some point when we were having a conversation, that I was told, when I was 12, that in 10 years, there would be treatment. I'm 42. So if I was hanging on that, there would-- it would-- and simply sitting around waiting for that, imagine how unfulfilling and simple and not in a positive way my life would be, that I would be missing out.
So I think that people really also have to learn to live with these things, not just think about, how do I overcome this? How do I live with it and incorporate it into my life?
ED PLUMACHER: Good point.
BRIAN FISCHLER: I've got one last question for you, Rebecca.
REBECCA ALEXANDER: Yeah?
BRIAN FISCHLER: So your life story turns into this huge film, Academy Award winner. And what's it going to be like when people, like, know you, and they want to come to you, and they're like, wait a minute. Your story has been told. It's so big, everybody knows who you are. Isn't it going to be a little strange, when-- at least, I imagine your hourly rates will skyrocket, and everything, for therapy, and everything. What's that going to be like, when people actually know you before they come through the door?
REBECCA ALEXANDER: You know, that's an excellent question. Because I'm not there. I have no idea. And it's one of my biggest fears, actually. I think that living those-- as you know, Brian, you have a pretty public life. I don't think that having a public life is something that I have aspired to, which sounds like, really? Well, then why are you doing all this?
For me, all of this has just been to raise awareness and to really let people know that they're not alone, because of how isolating it is. So it scares me. The more you put yourself out there, the more you put yourself out to scrutiny and to other people's criticism. But what I can say is that I am not the therapist for everyone. And thank God.
Because I think that-- I remember somebody asked me a long time ago, when I wrote my book, well, who's your audience? And like, at the time, I was like, I don't know. Everybody could read my book and find something that they relate to.
And I remember this guy saying, that's the kiss of death, that no, you want to know who your audience is. You want to know who the people who are touched by your story. And so the same is true, I think, for being-- finding a therapist, that there are likely, people out there who will not want to see me for exactly what you describe. Like, now I know too much about her.
Or maybe people will see this about me and say, I didn't want to read it, and I didn't want to see it, because I don't want to know this. But I'm touched by the very little that I know about your story. But I think that being an open book has been one of the most freeing things that I've ever done. Not hiding my disability has been one of the most relieving and freeing experiences that I've ever given myself.
BRIAN FISCHLER: That's awesome. And where can people find you? I think-- I know you're on Instagram, I believe.
REBECCA ALEXANDER: Yeah. Facebook. Yeah, so my Instagram and Facebook, I believe-- and full disclosure, I have a have a social media assistant, A, because I suck at it; B, because I don't particularly enjoy it that much. But I do think that it's very important. So @Reb_Alexander, @Reb_Alexander. And on Facebook, I am Rebecca Alexander, author, I believe. But @Red_Alexander is my social media handle.
BRIAN FISCHLER: Cool.
REBECCA ALEXANDER: And my website is RebAlexander.com. And my psychotherapy practice is RebeccaAlexanderTherapy.com-- a lot of options.
BRIAN FISCHLER: I'm going to check as soon as we hang up here if the @inspirationporn is taken on Twitter.
REBECCA ALEXANDER: No, you-- if--
BRIAN FISCHLER: [LAUGHING]
REBECCA ALEXANDER: Wait a second. Wait, Brian. You have to tell me. If it isn't taken, or even if it is, you have to tell me. Because if I can change my social media handle, I think that would be the one that would make me make the switch.
BRIAN FISCHLER: You'll probably have to be, like, @inspirationporn204, or something, because there's that many.
REBECCA ALEXANDER: No, I'm just going to say, I'm going to be @inspirationporn99999999999--
BRIAN FISCHLER: There you go.
REBECCA ALEXANDER: --something like that, yeah.
BRIAN FISCHLER: There you go.
ED PLUMACHER: I just want to say, Rebecca, I've really enjoyed this afternoon. It's been so much fun to meet you, to have you on the show. I thoroughly enjoyed your book, and I'm looking forward to the movie and the sequel.
REBECCA ALEXANDER: Likewise. Thanks for having me, guys. You're a lot of fun.
BRIAN FISCHLER: Yeah. Yeah, we don't take disability that serious. But anyway, for now, we are That Real Blind Tech Show, and we are out. We are That Real Blind Tech Show. You can email us in Thatrealblindtechshow@gmail.com. Join us on the Facebook, in our Facebook group, That Real Blind Tech Show. Tweet us at blindtechshow, or leave us an old school phone message at 929-367-1005. And for now, we are out. There you go.
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