Show Notes
In this episode of the Inform and Connect podcast, Melody and Tony welcome Andrew Leland, author of the recently released book The Country of the Blind: A Memoir at the End of Sight, available through Penguin/Random House. Leland’s book, which is part memoir and part cultural breakdown of blindness throughout history, shares his experiences losing his sight from Retinitis Pigmentosa, commonly referred to as RP. From the publisher: “A witty, winning, and revelatory personal narrative of the author’s transition from sightedness to blindness and his quest to learn about blindness as a rich culture all its own.”
Andrew breaks down the driving themes throughout his book, and embarks on a discussion with Melody and Tony on the many shared experiences that others who are blind or low vision face each day.
View Andrew's website at www.andrewleland.org for more information on his creative and informative endeavors.
Enjoy this episode! Be sure to like and subscribe from wherever you listen to podcasts. Inform and Connect is a production of The American Foundation for the Blind (AFB). Consider making a contribution today to help AFB create a world of no limits for people who are blind or have low vision.
For questions about this podcast, email communications@afb.org.
Inform & Connect Podcast Transcript
Intro Music:
Tony: You are listening to the Inform and Connect Podcast, a production of the American Foundation for the Blind. To learn more about AFB, visit our website@www.afb.org. And now your host, Melody Goodspeed.
Melody Goodspee...: Hey everybody, welcome to the Inform and Connect Podcast of the American Foundation for the Blind. We are so excited to have you here. As usual, I'm here with Tony.
Tony: Hello.
Melody Goodspee...: We have a lot of burning questions today for our guest, so we kind of want to hop right in, right, Tony?
Tony: Most definitely. I'm ready to nerd out on all things blindness today.
Melody Goodspee...: I am ready to nerd out on all things as well. We are so excited to have the author of the Country of the Blind, Andrew Leland with us today. Hey, Andrew, how are you doing?
Andrew Leland: Hey, I'm good. How are you?
Melody Goodspee...: We are super fantastic. We're so excited to have you here with us today on this podcast.
Andrew Leland: Wow. I'm happy to be here. I'm excited to nerd out on all things blindness. It's a three-way blind convention or something like that.
Tony: It seems like you would be... A question would be, and so for folks that don't know, so the Country of the Blind, a Memoir at the End of Sight. Love those colons for the [inaudible 00:01:20].
Melody Goodspee...: Yes, yes. Forgot about the colons.
Tony: Through Penguin Press Random House books. Right?
Andrew Leland: Yep.
Tony: Yep. And it's gained a lot of attention. This is hands down, one of the more mainstream accepted books of a memoir on blindness. We get a lot of, obviously whenever someone writes a memoir telling a story, their experience overcoming challenges with blindness. But you've done something new, which has been fantastic, and it's just been... I had a chance to listen to it on Audible. I paid for it, very much have enjoyed that.
Melody Goodspee...: So did I. I'm in the middle of it.
Andrew Leland: Thank you guys.
Melody Goodspee...: Yes. And I also want to add that Tony has burning, burning questions here for you.
Andrew Leland: Whoa.
Melody Goodspee...: But the first one, the first burning one is coming now, I know.
Tony: Because in the memoir, it's a great book. We'll have a link to it in the podcast description for folks to the Penguin page for the book, but I've also been a nerd for audio engineering over the decades, and listening to the audiobook on Audible, well done, sir.
Melody Goodspee...: Yes,.
Tony: I love... Here's a question, the first question out of the gate
Andrew Leland: Yeah.
Tony: As you share openly about the experience of learning braille, and the challenges of adapting with just reading and everything like that, but you did an excellent job narrating your own book, and I'm dying to know how that experience was like.
Melody Goodspee...: Yeah, you're pretty flawless,
Andrew Leland: Man, thank you guys. I mean, first of all, I've had a lot of experience. I worked in radio, and so I've had a lot of experience reading scripts aloud, and stuff like that. But I definitely felt like a fraud throughout the process of writing this book. And even just after publication, because I have a bunch of residual vision that I still use to look at all kinds of stuff, even as I increasingly identify as blind, and experience life as a blind person. And that kind of was very pronounced during the audiobook process, because what I decided to do was, first of all, I had to OCR my own book because the only... At that point in the... It hadn't come out yet. There wasn't a Kindle version or whatever I could download or book share. But so the only version that sort of existed with all the final corrections was a PDF that was not super accessible. And so, I OCR'd my own book, which I thought was funny, using Kurzweil, and then I reflowed it into a typeface that I found, that I heard about really just a couple of weeks before I had to do the recording through the Braille Institute in LA. They released this font called Atkinson Hyperlegible that is designed for low vision readers, and I found it really effective. I like it a lot. And it basically helps distinguish letter forms that are often confused in normal fonts. And I cranked it up to probably, I don't know, 30 point type, and zoomed it in. But when it was that big, white text on a black background, but when it was under those conditions on my laptop screen, I could really only see half a sentence at a time. So I was like, "Well, this is fine. If I scroll constantly, I'll be able to read fluidly." And then I got into this fancy New York recording studio, where Penguin had booked me for a couple days to record it, and 10 seconds in, the engineer said, "Oh, actually, we're picking up the sound of your finger on the track pad, scrolling, so you can't be scrolling and speaking at the same time." And I was like, "Well, then I'm doomed because I don't know how else I'm going to be able to do this." And they were like, "No, no, no, it's fine. Just pause at natural places and we'll stitch it together." And so it was really a matter of me being like, "I'm going blind as I write this," scroll, scroll. "It sounds more dramatic than it feels." Scroll, scroll. And I basically felt like I was leaping from comma to comma, like a desperate person trying to cross a raging rapid or something, just like they were little lily pads in the river for me to rest on. And I was convinced it would sound terrible, but they're pros, and they cut it together. And the other funny thing about that, just back to my feeling of fraudulence, is I was like, "Oh, who do I think I am, writing a fancy book about blindness, and here I am reading the print on my screen?" Not print, but whatever, reading the words on my screen. And then as I read the book to myself, and to the audiobook engineer, so much of the book is about that feeling of in between, and that sort of question of, when am I no longer sighted? When am I actually blind? That it was soothing myself, and it was like I'd written the exact book to reassure myself that I was not a fraud, and that what I was dealing with was indeed part of the world of blindness, and that includes reading a book out loud in 30 point type.
Tony: Well, one of the great things in the book that you talk about is throughout the experience about this, you're very honest about this idea of feeling a fraud. And I think most people in the community, we remind ourselves, and you bring this up in the book, most of the community that we say are legally blind even, have some sight. Right?
Andrew Leland: Yeah.
Tony: It's not the binary. And so, excellent job in really presenting it, as most people's experience is that those that have no light perception is a very small number within the larger. I mean, it's a significant number, don't get me wrong.
Melody Goodspee...: 10%
Tony: [inaudible 00:06:58] or two. But yeah.
Andrew Leland: Yeah. Yeah. And I think that statistic is a really important one, I think. The other thing that I encountered was just from talking to so many blind people, going to conventions and so on, that idea of the hierarchy of sight comes up a lot, I think, whether explicitly, or just implicitly in group situations, where you've got a range of different visual levels, but everybody there is blind. And for me, the times when everybody just sort of can hang together as blind people, whether or not one person's low vision, and one person's no light perception, and one person is acuity, there's something so powerful about the idea that we can all be blind people together, regardless of what the level of acuity is. And you don't have to throw like, "Well, actually I'm visually impaired, or I'm legally blind, or I'm low vision." And there's just something that I really love about the feeling of just being in community with blind people, regardless of those distinctions. Not to say the distinctions are pointless. There are certainly times when using your usable vision if you have it makes sense. But I do want to push back against that feeling of hierarchy there, where the low vision people are somehow better off than the people with no light perception. And I think the way to do that is to say, "You know what? I'm blind, and you're blind, and we can just both be blind, and we don't have to obsess over the level of acuity that we might still retain."
Tony: Yeah.
Melody Goodspee...: I am so glad you brought that up. I literally just got back on Saturday from getting my third guide dog, and when you're working with so many people of different... Blindness is a spectrum, and we all worked together, because we had a couple of low vision, no vision like myself, and we all just sort of did it. And there was not that hierarchy. And we worked together, we were all shopping together, and we just started laughing in the middle of Target. It's like, "I'm pretty sure that no one else is having these discussions that we're having." It is so great. But no, I'm so glad that you brought that up.
Andrew Leland: I mean, the thing that I think is really important for me, and I hate to call this person out, I don't [inaudible 00:09:09] to name them, but I remember there was one interview I did with a blind person who also has RP like me, and she was just telling me about how every 10 years she thinks to herself, "I thought I was blind then, but I'm really blind now." And then she said something like, but there's still people who... She has no light perception in one eye, and basically no acuity in the other, but still has some light perception. And she was like, "But there's some people who don't even have that, and I don't know how they manage." And I just thought to myself, "Wow, if you're at that point in your vision loss journey, where from where I'm sitting, that is capital B blind, to me you're on the other side of it," what I'm obsessing over, obsessively tracking every little loss. And I just thought to myself, "I don't judge her." I sound like I'm judging her a lot, but I totally understand that impulse to continually obsess over where you're at, and how useful it is. But also to me, it just felt so counter to where I wanted to be with blindness, to just say, "Well, there but for the grace of God, go I. I don't know how they manage." Because it feels so much more powerful to say, "No, we all are managing in different ways, and we can all use some of the same skills." And so I think for me, pushing back against that hierarchy, and accepting... And pushing back against my own feeling of fraudulence has to do just with that desire to accept the condition as it is.
Melody Goodspee...: That goes into my burning question actually. So, thanks for segueing. We talk a lot about the... I'm going to call it the blindness mechanics. I don't know if that's right terminology, but for me, I lost my eyesight very suddenly in my adulthood. Blindness was not in my wheelhouse. I lost it due to trauma and I'm totally blind, and I got a lot of that. "How are you going to function? How are you?" And then so I myself in turn am asking myself, "How am I going to function?" And then I, to be honest with you, looked at it and said, "Okay, well, the spunky, free spirited Melody is dead, and now I've got to be this person that's going to have to either be super cool like Stevie Wonder, or I'm going to have to be nothing." And there was no middle ground. And can we talk a little bit of that emotional component, because that's something that even now these days, I still kind of struggle with, I know with all those things that you kind of brought up that we are battling. Do you have any thoughts on that?
Andrew Leland: Yeah, that's such a good question. I've thought a lot about that. And this book, the project of this book was really like, "Okay, I'm going blind. There's no question about that. RP is this gradual loss of sight, and I don't know when it's going to happen, but it's happening now, and it's going to continue to happen. What does that mean for me? What kind of blind person should I be?" And so I was asking that same question of like, "Is it Stevie Wonder, or living in mom's basement? What are the options here, and what's the pathway to that goal that I want to reach?" And really, explicitly just, I sought out cool blind people, and that includes whatever successful blind people, but also just blind people who seem to be living lives like the one... Not even as blind people, but just who are the people that I'm already hanging out with that happen to be blind? And the thing that I found in talking to them, and reading their accounts, like there's a woman I wish I had a chance to meet, but she died about 10 years ago named Adrian Ash, who was a professor at Wellesley, and Yeshiva University, and was a bioethicist, and she's thought a lot about disability rights, and abortion, and prenatal selection. Just really brilliant intellectual, and was blind from birth. And she, along with a lot of other people, has this really interesting argument where basically she's like, "Blindness..." I mean, and this is a very NFB argument too, right? Like blindness is an incidental characteristic, but I found her example so powerful, because she really embodied it, I think. And the idea is just that blindness largely for her didn't matter. And she really, I think, made a really convincing case for, it's, "I am Adrian Ash. I love music. I love hanging out with my friends." And blindness for her really only became an issue when she experienced depression, when she applied for a job and they were like, "I don't know how on earth a blind person would do this job. Go away." Then blindness was an important part of her identity. But for huge swaths of her life, she was an intellectual, she was a professor, she was a classical music aficionado. And I think that's easier said than done, but I also think that when the rubber meets the road, it is possible to lead a life as a blind person in that way, of just saying, "Yeah, it comes up. Obviously it's relevant in certain situations, but it does not need to be," as the writer, Elizabeth Salmon said to me, "Blindness is not the main character in her life." Or there's another really lovely blind writer, Georgina Kleege, who said, "On some days, it matters less than the weather." And to me, that's sort of what I aspire to, I think. It's an important part of my identity, and I'm obviously super immersed in it now, having written this book, and going on podcasts and talking about it. But at the end of the day, when I'm eating dinner with my family, I'm not blindly eating dinner. I'm not blind man eating dinner. I'm just hanging out with my wife and my kid, and we're having fun. And I think that's what I aspire to.
Tony: That's a good place to be, I think, in a lot of sense. I mean, understanding that there's a reality. For me, I've been legally blind since birth, but then when total when I was 15, and then eight years later, they were able to get a pinhole back, that I don't really use, but it's still, I'll take that over no light perception. But it is that sense where I often feel, it's a compliment when my friends forget that I can't see when I'm left in the parking lot going, "Guys."
Melody Goodspee...: Yes. I agree with this.
Tony: "Hello.” I'm with my kids and it's just I'm their dad. And yeah, they'll stop and describe something that's going on, or grab me if I'm about to plow into something. But there is that nice cruising altitude. And a reminder too, that, I mean even going to parenting, because you're a parent as well,
Andrew Leland: Yeah.
Tony: That's a hard job, where it's, life hands us these things that oftentimes are... They maybe don't define us, and are this sort of gadfly that constantly is nagging at us. But there's still going to be bad days, even though you can say, "Oh, it's just incidental," or, "It doesn't define me." You still get frustrated when you get on the wrong subway train and end up in the wrong part of town, or little things like that.
Andrew Leland: Totally.
Tony: The same way that you get frustrated parenting, when maybe you do something that you're like, "Oh, that was a dumb thing to tell my kid. What did I just malform in a child for future or something?" But I mean, it's a give and take, I feel like, in a sense.
Andrew Leland: Yeah, no, I definitely wrestled with that, because I do think, in both good and bad ways, it's not totally neutral. It's not totally incidental for me, and that I think even if I aspire to that, it matters less than the weather, condition, like Adrian Ash argued, there are times when it's going to be the source of oppression and then it becomes this sort of central part of your identity. And then on the flip side, I think there's a really positive part to disability, and blindness, that you lose if you only dismiss it as a neutral characteristic that has no bearing on who you are, which is to say, when I'm hanging out in a room with my friend Will Butler, for example, who lives in LA, who's one of my favorite people, we're not just two guys hanging out. It's definitely about blindness, when we're taking pleasure in talking about the ableist thing some coworkers said to us, or just some ridiculous story of getting lost in a bathroom or something. That feels like joy that comes directly out of this experience, which also gets lost if you try to dismiss it as purely incidental. Tony: It's great you mentioned joy, because, so AFB will have a documentary that we're producing. We've been doing some private screenings right now, but it'll come out next year called Possibilities, which is kind of like looking at Helen Keller's life 100 years after she came to AFB in 1924, when she first came to AFB, but it follows 33 people who are blind really in their experience, and shows the diversity. But at the same time, it kind of taps into this identity that we talk about in the documentary about blind joy. That I could be in Europe, and there's going to be shared experiences that I know I'll be able to talk with someone, or in Latin America, wherever I may be, or the getting lost in a bathroom or trying to find an Uber driver.
Melody Goodspee...: People really understand how tricky public restrooms are when you can't see, I just want to throw that out here right now. I mean, can we just... Yes.
Andrew Leland: Yes, indeed. Yeah, yeah, totally.
Melody Goodspee...: Thank you that we're talking about bathrooms.
Tony: The last place you want to be putting your hands on everything.
Melody Goodspee...: I know. It's just-
Andrew Leland: And it's kind of weird that this is coming up in the conversation about blind joy, but yeah, and I also think that the idea of joy is important because of the stigma around blindness, and joy is the last thing that anybody would associate with the experience of blindness. But the reality is, if you talk to 100 blind people, you are going to have a hundred stories of joy in their lives. Even very sad blind people are capable of finding it.
Tony: And the ability to laugh it off. I mean, humor is such a great thing to have towards coping with anything in life.
Andrew Leland: Yeah.
Tony: But those awkward experiences, knowing that, everybody loves tragedy in a sense in stories, and you know the old saying that, "Oh, well, someday you'll laugh about that." You actually can do that when you're with someone else.
Andrew Leland: Totally.
Melody Goodspee...: Yes. Yes.
Andrew Leland: Yeah, I think that I feel lucky that I've been trained rigorously from a young age to find absurd humor in the suffering, and the obnoxious difficulty of life.
Tony: Well, share a bit about, as well, talking about how well you've been able to navigate the world, but so much of that comes out of where we come from, and our identity before we have to tackle this mountain that we're entering into with sight loss. And what was it that... The fact that you come from a good tradition of mixing comedy and tragedy and humor from a writing perspective with your grandfather, who you talk about in the book, but also too, just your rich experience and being able to break things down as an editor, for both print and podcasting, what is it that you think has really helped lay the foundation towards being able to enter into this world, to be able to navigate it with that sense of blind joy?
Andrew Leland: Yeah, so you mentioned my grandfather, who was the playwright, Neil Simon, who definitely was known for writing plays and movies that were comedies, but that had a lot of heart, or emotion in them. And I think that did trickle down to me through my mom, who's also a writer, this idea of finding absurdity in situations, but also not just finding absurdity to defang them, or soften them, but really pushing, by burrowing into a difficult experience, the joy, and the hilarity, and the comedy is in it, sort of inextricably bound up with the pain. The sort of pathos, and the comedy are geologically fused, like rocks kind of twisted together, almost. And I write a lot about Samuel Beckett in the book kind of randomly, but it's not random because Beckett, for my money, is the best writer in all of literature at identifying that both terminally desperate, and gut busting funny, and joyful blend. My parents met in an ashram in India, and I think there's probably also some element of that in my approach to blindness, which is a similar... Not a lot of people would mark out Samuel Beckett as a Buddhist, but I do think that there's something in the kind of very straightforward confrontation with suffering, and with difficulty, but also an ability to wear it very lightly, and say like, "Okay, yeah, this is horrible, but also hilarious, and maybe actually quite normal in the end."
Tony: And you do a great job of just in the book, walking through that sort of experience that you have, and the identity that you had growing up, and all the things that influenced you, that really helped sort of carry you the way you did through this experience, where a lot of people would probably just be shut in their basements, like you mentioned earlier, sitting on their couch. I mean, here you're talking about Samuel Beckett, and there's so much great history throughout this, from Oedipus Rex all the way to present day. You mentioned Francis Kessler's book, which is on our website, and what was the experience of just diving into this, like it's a doctoral dissertation almost, [inaudible 00:22:51] story?
Andrew Leland: Yeah, I mean, that to me is part of the... I think different people approach difficulty in their lives in different ways. And a friend of mine, how did he put it? He had a really great way of saying, I think he said something like, "You and I both think with our hearts," or was it, "Feel with our brains?" I forget which one he said, but maybe it's six of one half dozen the other, which is to say that if there's something that is difficult in an emotional way, approaching it intellectually, again, not as a way to be like, "Oh, I'm going to put on my lab coat here, and make it not feel so bad." But actually to say, the way to understand this difficult experience is to understand it, to really figure out what it's component parts are. And I used a metaphor early in the book that still resonates so powerfully with me, which is from when I was doing sleep shade training, I went to the Colorado Center for the Blind for about a month in researching the book, but also so much of the book, it was like I was researching it, but I was also getting blindness training as a blind guy. But, sleep shade training, and learning, particularly travel, and cane training, you enter into a room, which is just a constant experience at that center. They're like, "Okay, your next class is Braille, which is downstairs. Go find it." And you're just like, "All right." It's a former YMCA, so it's just these wide carpeted halls, where they're twisting off into twisty little passages all alike. And just that experience of what at first was this totally overwhelming, emotionally devastating, almost feeling of being lost, and thinking I'm going towards the room, and then finding a brick wall that I had no idea was there, and just like nobody is there, and I feel like I must look like an idiot. All that very quickly gives way to just like, "Oh, here's the braille room. I found it." That experience is very similar to one of writing for me, where you start out, and it's like blindness is like, there's like a thousand books, and they all disagree with each other, and you can't find them. And it is just this very confusing, overwhelming experience to like, "Oh, you know what? I've kind of mapped out some contours here." And there is Francis Kessler's Unseen Minority, but then there's also this new disability justice movement that really emerged decades after Kessler wrote, and really trying to map out the territory until it feels more manageable, and you can wrap your arms around it.
Melody Goodspee...: I think that's such a great lesson for everybody to learn when you are going through a hard time. That's something I think is universal, and going back to people that... You know in our blind community, with such a high unemployment rate due to the fact that there are a lot of people that sit at home, I mean, I did that. The depression is real, that the sadness and what you're saying, and this overcoming is real. But I think getting curious about picking it apart, and also saying to yourself, "Life is just going to go on, and I've got to either join it, or sit here." And it's something that I think a lot of us struggle with. Can we talk about maybe how maybe that struggle of going into a club of disability that you don't necessarily want to go into, you don't join that one because you want to, is different from having... I mean, because life still works. All of us are parents in this little chat. All of us have dealt with losses, all of us have dealt with... Normal life still happens. Can you kind talk about what is the difference between that, because I think that is huge when it comes to the psychological, with depression, and anxiety and all those things.
Andrew Leland: The difference between what? Between disability, the experience of becoming disabled, and a different-
Melody Goodspee...: Yes, like entering the disability club, with something you don't want to be doing. I mean, it's not like everybody raises their hand. Although we are the most welcoming group.
Andrew Leland: Right. Yeah, no, I think that's a really important question, because I do think that it's tempting to draw parallels between disability and other identities, certainly like marginalized identities, like race, or gender, or class. But there's this really difficult difference, which is that disability almost seems to have inherent in it, the idea of a diminishment or a loss, as opposed like to certain races have been historically painted in those terms, to say it's a less desirable trait to have this racial marker, or whatever, but for disability, it almost seems foundational. It's like, "Well, obviously it's worse to be blind than sighted." And so, there was a really interesting writer, I think her name is Alison Kafer, who I quote in the book. She says, "I've found immense joy and solidarity and community in disability, but that's not to say I want to become more disabled." And so I think it's an important, and kind of almost paradoxical feeling to be like, it's totally possible to embrace and celebrate disability. At the same time, if you're being honest, it's okay to be real about the fact that you don't want to court more disability, or you wouldn't necessarily want to wish it upon loved ones, or anything like that. And that can be confusing, but I don't think it's actually a paradox. And I think it's something, it's kind of like what we were talking about earlier, where there are parts of it that are inconvenient, and even worse than inconvenient, that can be profoundly frustrating, and limiting, and marginalizing, but those don't negate the parts that are joyful, and normal. And it's sort of this Jedi mind trick I feel like as you have to be able to hold both at once, and also accept the fact that some days you're on one side of the coin, and some days you're on the other.
Melody Goodspee...: Oh, yes, 100%.
Andrew Leland: Yeah.
Melody Goodspee...: Well, with that too, dealing with that some days, and realizing that some days, I call it, "I'm having a blind day," which pretty much tells my friends and family, "I can't
take any big questions or big emotions today. I just can't." I'm going to do that Jedi mind trick. But going back to when you went to the NFB training for a month, and all of us have done this, right? Go through VR training, we learn how to do it like it's a checklist. Okay, we're learning how to use a cane. We're learning to find the braille room, we're doing all this. But the emotional aspect is rarely talked about. The thing that I think we do need to do a lot of healing with, the getting to that acceptance, because it is a loss, right?
Andrew Leland: Yeah.
Melody Goodspee...: It's a change. Do you have any thoughts you can put on that, for people that are going through that?
Andrew Leland: Yeah, it's interesting. So I read a lot about the NFB in this book. In part, because I just think as a writer, they're incredibly fascinating, and a lot of the sort of debates get crystallized, and I wish I had another 400 pages so I could write equally about ACB. And honestly, I didn't write so much about AFB because Francis Kessler did such an amazing job, and that book exists already. But the interesting thing about the NFB is, and particularly the training centers that they have, that I found, is that unlike my vocational rehab training that I got from the Mass Commission for the Blind, which didn't really have that emotional component, or if it did, it was with a sort of frowning sighted person who was like, "Yes, this is certainly difficult." At those NFB centers, I would say even more valuable than the top-notch braille instruction you're getting, is the off hours when you're sitting in the apartments with eight blind people of radically different causes of their blindness, levels of blindness, backgrounds, but you're all kind of... Some people who've just lost their sight in a trauma one month earlier, to people who've been blind from birth and are really struggling to find their way to a college, and just being immersed in that world, it can be really challenging, but nothing that I've experienced has been as powerful either, in terms of feeling like my experience is connected to other people's experiences. And those NFB centers aren't for everybody. And I write about in the book the sexual misconduct allegations, not allegations, there's well-documented sexual misconduct that have happened in those places. And also, I think a lot of ableism within blindness communities, where folks with multiple disabilities have had really tough times there, and microaggressions, like racist microaggressions, all that stuff is very real. And definitely, I would say it's not just an automatic thing for anybody to go to, but I also think the model of those, the sort of core idea of those training centers, which is get really competent blind people to teach other blind people how to do the basic stuff that you got to do to be successful, and then let blind people hang out for long periods of time, and have philosophical discussions about ableism and blindness. There's nothing that holds a candle to that for my money. In terms of just giving people... And it doesn't have to be an NFB center, but that model of just hanging out with other blind people who have kind of made it to the other side of figuring out how to live their lives is just like, I can't recommend it enough for people who are thinking about how to do this.
Tony: That's a huge thing you bring up, because I am on my fourth guide dog. I went to The Seeing Eye, where I got mine from, and you go away for three weeks, not a whole month, but it is that experience of, we've got CEOs of companies, and we've got somebody that lost their sight like two years ago that's in college.
Andrew Leland: Yeah.
Tony: It was such an inspiration just to be around other people. And I know you mentioned the challenges with the federation's centers. Look, they're a reflection of just society. I'm an ex Jesuit, and we had our shares in the Catholic Church of reflecting society in mal ways, as well, in the Catholic Church, but just you can't escape society and all the goods in the bads that come with it, no matter where you go. But the huge strength, or when I was 15, I think the thing that instilled me that sense of just independence, and knowing I can tackle the emotional side, was I went to a camp for children who are blind, and it's just like being by so many other people that have had those different experiences, and have kind of walked ahead of you. Right? It is kind of like Jedi training school. You mentioned Jedis earlier.
Andrew Leland: No, I mean, I went to-
Tony: You find your Jedi, and they inspire you to get over your depression.
Andrew Leland: Totally. And I think the thing that really struck me about that training was I went there thinking I was going to be getting a lightsaber, and ninja stars, and it was all about the gear, and the skills, and, "Oh, okay, they're going to show me how to chop in a way where I'll be able to chop onions just as fast as a sighted person." And they totally do teach techniques. Obviously there are basic techniques that you've got to learn, but again and again in every subject, whether it's tech, how to figure out how to use a screen reader, or cane training, where they're just dropping you off in downtown Denver, and you have to find your way back, it really is about attitude, and confidence, and that you're like, "Okay." Like this guy, Brian Bashen said this quote that I like him, quoting him every day because so true and so powerful, where basically, it's about a belief in yourself to figure it out, and that you can reframe it as a puzzle, rather than as like, "Okay, I'm lost. I'm doomed. I look like an idiot. This is horrible." To being like, "Okay, I know that there is a door in this room somewhere. How do I figure out where it is? Let's just use logic, and take a deep breath, and figure it out." And again and again, that is the skill that I want to cultivate, and that I return to, way more than like, "Oh, if I have this type of cane tip, it resonates in this way." That stuff is important and fun, but it's really about a faith in yourself to solve the problems that blindness tosses at you.
Tony: We need to figure out how to word all this stuff for our LinkedIn pages for employee.
Melody Goodspee...: Yes.
Tony: I've heard you, Melody, talk about, look, if you run across someone who's blind or has low vision, you've said it best, where it's like they have [inaudible 00:35:17]. Melody Goodspee...: They have worked hard to get where they are. And I love the fact you're bringing that up in the sense of, Tony, I mean, like I said, [inaudible 00:35:27] just got back from blind school. I mean, not blind school, geez, Leader Dog is where I get my dogs. And that camaraderie that we had running around, I really use those three weeks away to say, "Okay, I need to get better at this, this, and this." And you can just get raw and vulnerable with these people. And I think that relationships really grow out of vulnerability. And I have learned, came back with so many... Like I want to be a faster typer on my iPhone. So, a friend of mine gave me a link for something, how she talked. She was so wicked fast doing it. And I'm like, "Wow, that's impressive. How do I do that?" That sharing is so important, and I love the fact of talking about mental mapping. My strong suit is definitely not orientation. I get so... Even when I could see it, sometimes I would drive and be like, "Okay, I got to go back to my house and figure this out." But, really sitting, when you're working with your dog, and just saying, "Okay, I've got to give this dog directions. I can't let this emotional... What is going on in my heart right now has got to take a backseat." And no, I think that if we all kind of... I mean, in the documentary, there's someone mentions we as blind people are the original life hackers, hashtag, but I think that's true. I mean, what you just said is pulling it down. Like, "Okay, you know what? There is a door here. I'm going to find it. It's fine. Everything is fine." Andrew Leland: Yeah, yeah. No, and I write about in the book, the really literal hacker, not literal hacker with a meat cleaver, but I just mean the actual digital- Melody Goodspee...: Oh, yeah, definitely. We're not really hacking the world, guys. Andrew Leland: Right. Yeah, yeah, yeah, yeah. But if you look at so much technology, from the typewriter, the original patents for typewriters, were as blind writing machines, to the first LPs, the long playing records were designed through AFB, and Robert Irwin, working with Bell Labs to say, "Okay, well, we want to make talking books more... So we don't have to have 100 records to have a novel on them. How can we cram more information onto this?" And that's the first LPs, blind people were using them like a decade before sighted people were for that reason. And there's example after example that I go into about that, and it all comes back to, Melody, what you're saying, which is that, yeah, we are the original life hackers. And that when you... That's the definition. Ask any Silicon Valley founder about what drives innovation, and it's constraint, right? It's like, you're up against some problem. You have these tools, these resources, how do you fix it? And that's the disabled experience, right there. Tony: Well, you mentioned earlier, like OCR, optical character recognition and Kurzweil, you mentioned... Who's kind of prophetic person in the world talking about technology, and those things that we were thinking were helping us decades ago. Andrew Leland: Yeah. Tony: Is a world that is just constantly scanning everything, and translating everything, and it's interesting. I love some of the stuff you talk about in the book too, for folks that are reading it, on just the tech side. We run our Access World, which is a magazine around access technology, and assistive technology and things like that, and dive into that stuff. And you did a great job, I think, too, of just sort of talking about the evolution as well with some of the technology that's out there. A thing I want to... And as we're starting to move toward our third act of the podcast, if you will, is looking at how much has advanced over the past 10 years, since you've really started this real diehard journey, other than just knowing that you had RP, but when things started to get real. Andrew Leland: Yeah, yeah, yeah. Tony: What's happened this 10 years, and just how everything's accelerating. And also too, just with RP on the genetic side, Foundation Fighting Blindness is posting stuff all the time. I read something this morning in Ophthalmology Times, because that's a great read. Page turner. But they're always doing something in terms of... Or even if retinitis pigmentosa has some sort of solution that can render it mute, what does that do to our culture? What is the technology going to do to our culture too, where we all become Geordi from Star Trek, essentially? Probably sooner than we thought. Andrew Leland: Yeah. Tony: Can you put on your visionary hat and think 20, 30 years from now? Andrew Leland: Yeah. Or my visionary hat is actually called the Apple Vision Pro goggles that Apple is making. Did you guys hear about these? The augmented reality? Tony: Don't tell me you got them. Andrew Leland: No, no, no, no. Tony: [inaudible 00:40:04]. Andrew Leland: But that's what I picture the vision [inaudible 00:40:06]. Tony: No, a lot of us are thinking this could be Geordi. Yeah, I hear. Andrew Leland: Totally, totally. I mean, it's weird, because when I was researching the book, I really kept a bright line between these two different categories of tech, where on the one hand you had things like screen readers, and OCR, and machine vision, and this happened after I finished the book, but I would certainly include the Be My Eyes. It's not called the Virtual Volunteer anymore. What's it called? AI... You know what I'm talking about. Tony: Yeah. Andrew Leland: Be My AI, right. Where you can basically point your phone at your fridge and it'll say, "You have seven bananas, and two of them are moldy." That stuff on the one hand. And then the other hand things like the Argus II, which is the retinal prosthesis where they implant a chip in your eye, and that communicates wirelessly with a camera that artificially stimulates the retina. And there's sort of more recent versions of that, where there's folks who have been blind from RP with very little, if any light perception, who are suddenly tracing a big white glowing X on a screen, in a dark room. And it was striking to me, because as I was sort of reporting and researching this stuff, like the screen reader stuff, and the OCR stuff, I found so exciting, and just geeking out about it, and wanting to get my hands on it, and figure out how to use it, and be a cool blind hacker, info warrior dude. And then the optogenetic stuff, and the sort of biomechanical interventions, the prosthetics, in a word, turned me off completely. And I was just like, "That bums me out." And I always imagined my son, who's 10, his high school graduation as a sort of benchmark for I'm probably going to be totally blind by then, and how will I experience that big milestone event? And for me, I was like, do I really want to be Robocop there, and seeing some weird prosthetic vision? Or would I rather just be hanging out, and maybe hearing a description of it from Lily, my wife? And it's hard for me to put myself in that position, and I'm sure I might feel differently when I'm actually doing it, but from where I'm sitting now, I find myself much more drawn to the kind of assistive technology than I do to the cure technology, like the medical interventions that will "cure blindness." And we can talk more about why I have those different feelings. But for me, I think part of my journey in writing this book, and just becoming more blind is, yeah, if the good people at the Foundation Fighting Blindness find a cure for RP, more power to them. But, if I'm putting blindness charities in my will, I'd much quicker to give my whatever's left to Book Share, so that blind people can have access to books, than to try to find a cure for RP, to the people who happen to have my genetic mutation. Melody Goodspee...: It's kind of like we have to live in the now. Right? And I think for me, seeing all these things coming out, maybe that's just because I just had a whole new world of technology opened up to me these past three weeks, and just a whole new mindset. I tend to agree with that. I think there's things about even becoming blind, back to what... Original question I asked you is saying, okay, the Melody of who had died. I think the Melody now is the same, but better in most respects, in understanding how to manage emotions, having to navigate the world. And more than that, just being so incredibly grateful for what I do have, and knowing that people are in my life because they want to be. It's been a wild ride. I mean, definitely, don't get me wrong, you said that, like I said, the blind days are still there, but I think that there's a level of enhancement that comes with exactly everything that you're saying in your book, which I am really into, and I haven't finished it yet, but I'm on my way there. Andrew Leland: Thanks. Yeah, no, I mean, it's important to also point out, I'm not against cure, right? Melody Goodspee...: Oh, me neither. Yeah. Andrew Leland: Yeah. If somebody said, "Oh, here, just take this pill, or get this injection, and you'll be fully sighted." I don't think it would make a lot of sense for me to reject that. But this is sort of the sort of contradiction, or the seeming contradiction that we've been sort of circling around this whole conversation, which is like they could both be true. You could accept the cure if one came along, but that doesn't mean that you're living your life as a broken person, who just is wandering the streets, and praying for a cure, and that until one comes, your life is incomplete. You can be complete in this moment, and then like, "Hey, medical breakthrough. Great." Melody Goodspee...: Yes. And then you can take everything you've learned with you. Andrew Leland: Yeah. Tony: Would it be nice not to run into signs? Yes. But... [inaudible 00:45:08] happy man. Melody Goodspee...: Or to go to a bathroom and not freak out. Andrew Leland: Just to complicate things further, there are examples, very rare ones, but there's a wonderful book, if you guys haven't read it, called Crashing Through, about Mike May, who lost his sight as a kid, and then lived basically his whole life, grew up as a blind guy, and then had this experimental procedure that restored a lot of sight. And it is not at all clear at the end of that book that he's better off for having the sight, or that he's happier. And there's... Oliver Sacks has written about this, other examples of folks who've been blind their whole lives, who get their sight back, or who get sight for the first time, and it's like, "What do I do with this?" That they have trouble telling men from women, and shaving. There was a guy who was just like, "You know what? It's so much easier to just shave the way I've always shaved," turns the lights back off in the bathroom, because he is accustomed to being a blind person. Reading is super difficult. So it's not at all as obvious as most sighted people assume it is, or even blind people, that getting the vision is going to solve all the problems, and make life easier. In some ways, a blind brain is happier being blind. Tony: There's no way I would ever drive a car even if I [inaudible 00:46:23]. No, not a fan. Oh, man. Well, Andrew, this has been incredible. What's on your horizon as you're doing this, I guess, a book tour? I know this will go up the last week of September. Melody Goodspee...: He's gaining a lot of traction. Tony: Yeah. You've been gaining huge... I mean, congratulations just on that. Melody Goodspee...: Yes. Andrew Leland: Thank you. Thank you. Yeah, it's been really amazing, just to see folks respond to it, and blind people and sighted people alike, I think, are finding something in the book. So, that's been a writer's dream to have that kind of response. Tony: All those [inaudible 00:46:53] at McSweeney and everything else, it's just paying off, because I don't know if it's you're thinking like an editor when you write, but it's a great narrative arc, and great information, so hats off. Andrew Leland: Thank you. Well, I had an editor of my own who helped me a lot with that. She really pushed me hard. I rewrote the book. It took me like three years to get this thing done. So, yeah, credit due to her, as well. But yeah, I'm really glad you guys enjoyed it. And as far as what's next, while I was writing the book, I did a couple of freelance pieces. I wrote a piece about deaf-blind communication, and the emergence of this movement called protactile, that these linguists at the University of Chicago are saying is actually the world's first tactile language. And I did a piece for Radio Lab about disabled astronauts, and the sort of case for disabled astronauts with a really wonderful blind linguist named Sherry Wells Jensen. And doing stories like that, and that story was... Sherry's blind, but there was a bunch of other folks with different disabilities, and it made me excited about the possibilities of being a journalist on the disability beat, and not just doing sort of breaking news stories about legislation, or protests, but to really do more long form, immersive deep dives into the issues that I kind of cover around blindness in the book, but finding out where they exist in other corners of disability space, whether it's neurodivergence and autism, or deaf blindness, or deafness, physical disabilities, mobility disabilities, all of that stuff is radically different from blindness. But also, it's kind of fun to find the connections too. And so, right now I'm sort of at the beginning stages of thinking about what stories I might want to tell in that world. Tony: Amazing. Well, and it is, blindness aside, and knowing that you're now the chief nerd on all things sight loss. Melody Goodspee...: Yes. Andrew Leland: On all things what, did you say? Tony: Chief nerd on all things sight loss. Andrew Leland: Oh, sight loss. Yeah, yeah, yeah. Tony: But no, it's just a great book. I felt like I was reading something from The New Yorker, which is my go-to publication when I just want to- Andrew Leland: Oh, awesome. Tony: Good writing, right? And so, it's exciting. Anything you want to plug, other than the book? Any upcoming book tour dates, or anything like that, Andrew Leland: You can find those on my website, which is andrewleland.org. I have got a little events tab there, and I'm doing various things around the country in the coming year. Going to the Midwest in the spring, going to New York next week, probably two... I don't know how soon you'll be putting this out, but... Tony: Last week of September. Andrew Leland: Oh, okay. Yeah. So yeah, October 4th, I'll be it NYU in New York. You can register for that on my website. But yeah, my website has whatever I'm up to, latest, although I update it, not as much as I should. But yeah, you can find all my social media through there, and my email address is on my website too. I've been getting lots of emails from cool blind people who are psyched to nerd out further about this stuff, so I invite anyone to drop me a line.
Tony: Thanks for nerding out with us today.
Melody Goodspee...: Yes.
Andrew Leland: Oh, it's such a pleasure. Loved it.
Melody Goodspee...: I did too. It was good times. I want going to keep going, but I know we all have to... It's fun to get paid to do a podcast, I have to say. It's kind of fun to do that, and nerd out with people that make me smile.
Andrew Leland: Heck yeah.
Melody Goodspee...: Yes. Well, guys, thank you so much, Andrew, thank you for being here with us today, and we are going to look forward to following you, and keeping this up. And if you want to keep up with what we're doing at the American Foundation for the Blind, please visit www.afb.org. Thank you so much for being with us today. Have a good one, guys.
Andrew Leland: Yeah, you too. Thank you. Music fades up and under.
Tony: And thanks to Andrew for joining us for this episode of Inform and Connect Podcast. You can learn more about Andrew and where he'll be by going to his website, andrew leland.org. You're listening to the Inform and Connect podcast, a production of the American Foundation For the Blind. Questions or comments on this episode, email communications@afb.org. Feel free to visit our website as well, where you can make a donation to help support the work of AFB by going to afb.org/donate. AFB, creating a world of no limits. Music fades out
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