The One You Feed - What Can Be Found When Losing Sight with Andrew Leland

Episode Date: February 6, 2024

Andrew Leland shares a deeply personal story of losing his vision due to retinitis pigmentosa. He shares some of the challenges and necessary adjustments that come with acquiring with his gradual disability. With courage and humor, Andrew navigates the complex emotional terrain of coming to terms with his changing abilities and sheds light on what can be found when losing sight. In this episode, you will be able to: More deeply understand the journey of acquiring a disability Understand the nature of identity and how it changes throughout stages of life Develop compassion and curiosity for those with with unique challenges Identify what it means to balance independence and interdependance Foster better communication for those living with differing abilities To learn more, click here!See omnystudio.com/listener for privacy information.

I like totally saw the owl and like what it was doing and it was like a moment where I realized this is what blindness can be. It doesn't have to be the exclusion. It doesn't have to be a separation. Like there was nothing missing from that moment for me. It was me and my son enjoying this experience together and vision was secondary. Welcome to The One You Feed. Throughout time, great thinkers have recognized the importance of the thoughts we have. Quotes like, garbage in, garbage out, or you are what you think, ring true. And yet, for many of us, our thoughts don't strengthen or empower us. We tend toward negativity, self-pity, jealousy, or fear. We see what we don't have instead of what we do. We think things that

hold us back and dampen our spirit. But it's not just about thinking. Our actions matter. It takes conscious, consistent, and creative effort to make a life worth living. This podcast is about how other people keep themselves moving in the right direction, how they feed their good wolf. I'm Jason Alexander. And I'm Peter Tilden. And together, our mission on the Really Know Really podcast is to get the true answers to life's baffling questions like

why the bathroom door doesn't go all the way to the floor, what's in the museum of failure, and does your dog truly love you? We have the answer. Go to reallyknowreally.com and register to win $500, a guest spot on our podcast, or a limited edition signed Jason bobblehead. The Really No Really podcast. Follow us on the iHeartRadio app, Apple podcasts, or wherever you get your podcasts. A Memoir at the End of Sight, which was long listed for the 2023 Andrew Carnegie Medal for Excellence in Nonfiction and was named by Publishers Weekly as one of the 10 best books of the year. His writing has appeared in the New York Times Magazine, The New Yorker,

McSweeney's Quarterly, and the San Francisco Chronicle, among other outlets. From 2013 to 2019, he hosted and produced The Organist, an arts and culture podcast for KCRW. Andrew has been an editor at The Believer since 2003. Hi, Andrew. Welcome to the show. Hey, thanks for having me. We are going to be discussing your book, The Country of the Blind. But before we do that, we'll start like we always do with the parable. And in the parable, there's a grandparent who's talking with their grandchild and they say, in life,

there are two wolves inside of us that are always at battle. One is a good wolf, which represents things like kindness and bravery and love. And the other is a bad wolf, which represents things like greed and hatred and fear. And the grandchild stops. They think about it for a second. They look up at their grandparent and they say, well, which one wins? And the grandparent says, the one you feed. So I'd like to start off by asking you what that parable means to you in your life and in the work that you do. Well, my work and my life for the last couple of years has been really focused on thinking about the experience of acquiring a disability really, in particular for me of the very gradual process of becoming blind. And I'm still in the midst of that process. The disease I have, RP or retinitis pigmentosa, is a very gradual one. So, you know, I still have a little bit of central vision,

but I've lost a tremendous amount of vision over the last, you know, 30 years. And there are a lot of different ways to approach that experience. And so I think the parable suggests sort of the two paths that one can take in confronting that experience. And I do see it, you know, and I think I try to be really clear about it and honest with myself about it, that there is a certain amount of bad wolf feeding that I think is necessary, if I could put it in those terms. There's grief and there's resentment and there's anger that I think are natural reactions to that feeling of loss of control or just of losing something that is incredibly useful. But I think

one thing that I've discovered through this process is that there is actually a good wolf too in there, which is to say that there are ways to inhabit one's blindness or disability that are actually in line with the good wolf that grandpa describes there. And I guess if I had to name how that works, it has to do with thinking of blindness, I guess if I had to name how that works, it has to do with thinking of blindness, not as a tragedy, not as like an affliction, but rather as really like a constraint, a set of problems that one needs to innovate to solve in the same way that any thinker confronts problems in the world and tinkers and, you know, thinks and works and researches and experiments and finds tools to work through it.

Yeah, there's a couple things in there I'd love to touch on. I mean, I think the first one is that the parable can give the sense that having things like grief and fear and all that are bad. And they're obviously not, right? They're natural emotions that we need to process and work through. And then the other thing that you said there reminds me of a friend of mine and a guest who's been on the show a few times, A.J. Jacobs, who's a great writer. And he wrote a recent book all about puzzles. He's a puzzle guy. But the thing about it that I loved was this idea of thinking about problems as puzzles. And the way you just described that, right, you were describing a puzzle mindset, right? Which was like, I got,

I'm going to figure this out. I'm going to figure that out. And I just have always loved that reframing of a problem to a puzzle. It just moves you right to solution, right? Yeah. That's such a great point. And, you know, a blind mentor of mine has used that word puzzle. He called it a magnificent puzzle, in fact. And, you know, and I think the importance of reframing something as a puzzle, in addition to what you said about it, orienting one around solutions, is it also encourages curiosity. Yeah. And that is such a crucial idea for me is that, you know, you can approach something

with resentment or grief or revulsion or fear, but almost anything in the world you can approach with curiosity, which doesn't mean that the thing you're curious about has to be good, right? Or even a positive experience or makes you feel pleasurable, but you can still, instead of pushing it away, you can say, okay, well, it's there. Like, what is it? Let's poke at it a little bit. Let's think about it. That's the kind of spirit of the puzzle solver that I think is incredibly powerful for anyone in a situation like acquiring a disability. So something I'm going to be doing a little more often is ask you, the listener, to reflect on what you're hearing. We strongly believe that knowledge is power, but only if combined with action and

integration. So before we move on, I'd like to ask you, what's coming up for you as you listen to this? Are there any things you're currently doing that are feeding your bad wolf that might make sense to remove? Or any things you could do to feed your good wolf that you're not currently doing? So if you have the headspace for it, I'd love if you could just pause for a second and ask yourself, what's one thing I could do today or tonight to feed my good wolf? Whatever your thing is, a really useful strategy can be having something external, a prompt or a friend or a tool that regularly nudges you back towards awareness and intentionality. For the past year, I've been sending little good wolf reminders to some of

my friends and community members. Just quick little SMS messages two times per week that give them a little bit of wisdom and remind them to pause for a second and come off autopilot. If you want, I can send them to you too. I do it totally for free and people seem to really love them. Just drop your information at oneufeed.net slash SMS and I can send them to you. It's totally free and if you end up not liking the little reminders, you can easily opt out. That's oneyoufeed.net slash SMS. And now back to the episode. Tell us just a little bit about your condition, when it started, kind of what the process has been, just so listeners kind of have an idea of the overall

kind of picture of what this journey has been like for you. Yeah, I have a pretty classic version of this disease from what I understand. You know, there's a lot of different experiences of RP, but mine is that when I was a teenager, I noticed that I had a lot of trouble seeing in the dark. And so I would start to do these teenagerly things like, you know, go out with my friends to go up, walk on the hillside behind their house at night, you know, to do bad, you know, not too bad things, but you know, the things that teenagers do when they're off on their own. Sure. You know, and I was just like, why is everyone so adept at picking their way up this hillside compared to me? Or, you know, going out to the movies, the prospect of going to get a drink or go to the bathroom in the prospect of going to get a drink or

go to the bathroom in the middle of a movie. I was like, why would anyone put themselves through that stress? You know, and it took a couple of years of that to really realize like actually, cause it's so ambiguous, you know, like it was something that I kept to myself. And then when I would talk about it, people would sort of be like, I don't know, it's dark. Yeah, sure. It's hard to see. And it really took this accumulation of experiences that I thought, I think something actually is going on here. And I had self-diagnosed on the early internet. My dad bought me a modem. And then years even beyond that continued until finally I complained about it enough to my mom that when I was taking a semester off after my first year in college,

she said, okay, let's go to a retinal specialist and see what's happening. And then lo and behold, I had the real diagnosis. And when that happened, when I was around 19, the doctor said to me, the prognosis for RP is it'll be this very gradual decline in your vision and it's, and it goes from the outside in. So it's like this very gradual tunnel vision. And then when you hit middle age, it'll accelerate a lot and you'll be blind. And that was a lot to take in, in that moment, but also, you know, middle age for a 19 year old felt very, very distant. And so it's, you know, I think people expect that story to have this sense of like, and then my life was forever changed. And my experience of it was not that way. It really was like, well, that's a curve

ball, but like, now I'm going to go back to college and, you know, continue being an English major and, you know, continue doing my college radio show. And, you know, like my life continued. And, you know, his prognosis was pretty accurate. I would say, you know, I went through my twenties and thirties with this very, very, very gradual narrowing of my field where confusing moments like leaving people hanging for high fives or handshakes, my night blindness increased. I realized it was not that safe to drive at night. And there was just this very slow progression of milestones that I hit where I stopped driving at night, stopped driving during the day was the major one, stopped riding a bike. And then about eight or nine years ago,

when I moved to Massachusetts, that's when I decided, okay, like I'm moving to this new town. I don't know anybody. I'm just going to use the white cane wherever I go. Cause I had had a white cane before that, but it's just so stigmatized and it just made me feel so, so much like an imposter using a white cane with vision still, you know, and people look at you like, you're totally blind with the white cane, but I just saw you look at your phone. Like, what's that about? I really had so much resistance built up to it. But then when we moved here, I said, okay, I'm just, I know that it's going to help me. And then that was really the beginning of this whole journey that I read about in the book, because it kind of inserted the social aspect of

blindness into every part of my life that I couldn't ignore anymore. Yeah. You turned this book in probably a couple of years ago, right? So what's your current state of vision? I'd be curious kind of what it is now and even what the change has been since maybe when you wrote the book. Yeah. I mean, I went through significant changes in vision while writing the book, and I have to be clear about what I mean by significant changes of vision, because this is something I've talked about with my eye doctor, you know, because my doctor, it's kind of funny to use this word, but she's a scientist, right? Like she's a retinal researcher. She publishes papers on retinitis pigmentosa. And for her, the retinal degeneration is very much like a plot on a graph and the lived experience of what,

you know, the visual field, normal visual field, I think is something like 180 degrees or something like that. You know, and I think I'm at something like five or six degrees. I think it's different in each eye, but percentage wise, you know, it's, it's a tiny, you know, it's like four or 5% of what normal visual fields see. So I'm looking through a very small tube and the changes that she's tracking are really like from 5% to 4.86%, right? So it's like for her, she's like, good stuff, Andrew. Like this is very slow decline. You're doing great. But functionally for me, those changes can sometimes feel immense. It can be really hard to predict, like the change from 5.1 to five, don't really notice it. But like five to 4.9 is like, I'm crying and it's overwhelming and what's going on.

Yeah. And so, you know, when I say that I'm going through big changes, writing the book, like it's within that framework of very confusing, subjective experience, but it's real. And so, you know, like I said, with the cane, like, it's not like there was any moment when my eye doctor or the state of Massachusetts or anybody was like, you are now officially blind enough to need to use this cane wherever you walk. Right. It was like, I had like kicked enough dogs and like bruised my shin on enough fire hydrants that I was like, you know what? Like, this is going to make my life better if I use this thing in public. And while I was writing the book,

I had a similar revelation about reading print. It's like, even today, you know, if you, this is a weird example, but like if you poisoned me in like a mystery novel, you know, we were like the recipe to the antidote is in this edition of Moby Dick that we've changed one sentence that has a recipe for the antidote. Like I would survive. I could like make it through Moby Dick in normal print, but it would suck. Like I would just be so unhappy. And so during the course of writing the book, I started writing in 2019 and over, you know, it took me about three years. I retired from print, which, you know, like stopping driving, like using the cane. And that is a major milestone. And even though like, like I say, I still could technically find the antidote

as a writer, particularly it was a sea change for me. And it pushed me even deeper into this world of figuring out what assistive technology, you know, screen readers and learning Braille and that whole world, that changed while I was writing the book. And then since I finished the book, it's so hard to explain, but I'll try. You know, it's such little things. It's like I'll walk into a room and I'm just more comfortable using other senses. They're not heightened. I should be clear. Like, it's not like the daredevil is the comic book, right? Like you don't have super hearing or super touch, but you use them more. And it's kind of a two-way street. Like I force myself to do it more. And

then I just naturally do it more. Like if I'm looking for something, I'm just starting to get the memo that like raking my small little 5% visual field over a table is not an efficient way to do it. So why not just run my hands over it? And it's embarrassing because I think if somebody sees me, like when I do that first time I did that in a cafe, I felt so strange, just like wiping my hands over the table to make sure I hadn't forgotten my sunglasses or whatever. But now it feels natural and it's just like a blind way of checking to make sure I hadn't forgotten my sunglasses or whatever. But now it feels natural and it's just like a blind way of checking to make sure I didn't forget anything. Yeah. I think what's so fascinating about your story and you talk about this a lot is the gradual nature of it and the fact that you can't really be in non-binaries,

meaning you're not blind or sighted. You're both. Yeah. Yeah. non-bionaries, meaning you're not blind or sighted, you're both. And I think a lot of life unfolds in that way. A lot of life unfolds in this in-between state. As somebody who's studied a lot of Buddhism, in Buddhism, they talk about the bardo, it's the in-between state. And technically, it's used to refer to sort of between lifetimes, but many teachers talk about all the bardo states that we go through in our own lives. And that's sort of between lifetimes, but many teachers talk about all the Bardo states that we go through in our own lives. And that's kind of what you have there is this, I can see sorta, but I also can't. And I don't really fall into either camp fully, which leaves you in a weird place. Absolutely. Yeah. I think that's true. And, you know, just to push the ambiguity

even further, you know, one of the things that another blind mentor of mine said to me, my friend Will Butler, and I write about this in the book, he says, you know, Andrew, like, you might be going blind for a really long time. And you might be more blind, you might be less blind. But at a certain point, you might just have to sort of say you're blind, even if there is 1% or 3% of vision remaining. And so even though I think you're right to say that, like, I'm not blind and I'm not sighted at the same time, one thing that I'm really pushing towards is to find a way to say, even with this site, I am blind and I'm okay with that. Right. Right. And I assume, you know, given the gradual nature of this, that that position has shifted and changed over time. Yeah, because if you're wanting a binary, like this world is not for you, right? There's very, very rarely a binary that's going to be satisfying in that way. Like I write a little bit about this ancient Greek philosophical paradox of the heap, where it's like, you know, if you put a grain of

sand on the table, is that a heap? No, of course not. You know, like three grains of sand, that's not a heap. You know, 10 grains of sand, like how many grains of sand does it take? Or you do it in reverse. Like there's a heap of sand on the table. How many do you remove? And this like this binary of like heap or non-heap, it's sort of impossible. You'll never find the binary no matter how much you try to think it through. Yeah. There's another old story. It's the ship of, I can't remember what it's called. You may even reference it in your book. Theseus, the ship of Theseus. It's the same thing, right? Tell us about it. It comes up a lot on the show. I love it.

Oh, it's such a good story. Yeah. So don't make me tell you like the names of the Greek dudes who are most, surely Theseus is one of them. I think it's his ship. We can agree. We'll just call him Apollo and Zeus and Frank. Frank. Yeah. Joey. Well, basically there the ship going on, as the Greek epics always tell you, on epic adventures across the seas. And as you do, a plank will get rotted or break off in a storm, and so you replace it. And over the years, every plank on the ship is going to be replaced. And it's a similar philosophical question. We're like, well, so if none of the original wood is there, is it still the ship of Theseus? Maggie Nelson, who wrote a really beautiful book called The Argonauts,

which is a lot about gender transition, uses that story to talk about gender transition. And it really is a story about identity at its heart. And we in our lives go through these profound transitions, whether it's just something like gender transition or acquiring disability, becoming blind, or even just aging or, you know, moving somewhere or going through a divorce. You know, there's, you can sort of name any number of these sort of cataclysmic or transformational transitions and you do feel utterly different. And yet there's this paradoxical sense that like the ship of Theseus, like even though everything has radically changed, there's still something that is coherent about you and who you are. Yeah. Well, I love that story and use it often because in Buddhism, we talk about this sense of a self, right? That I am this unique, distinct

thing. You know, Buddhism would say, yeah, not really. Right. They even use the term heaps. They're like your five different heaps of things, right? But it is identity. And I think one of the fascinating things is the identity. And I want to read something you wrote. You said, I met people who said that their blindness meant nothing to them, that it was a mere attribute like hair color and others whose blindness utterly defined and upended their lives. Say more about that because that's what we're kind of talking about here, right? Is identity. Andrew Solomon, another great writer has been a guest on the show. In his book, Far From the Tree, he talked about illness or identity.

Mm-hmm. Mm-hmm. Yeah, Solomon is a big influence. I think that book is really important and was one of my introductions to thinking about disability and identity in the terms you're talking about. Yeah, I mean, that quote that you read, there is such a spectrum of people's relationships with blindness and I can't pass judgment. You know, I think I don't begrudge people who say they don't want anything to do with other blind people. You know, I think, I think everyone has to sort of make their peace with it or, or just understand it differently. And I think you see that across identity really. Like, I think there are people who have similar relationships with the race, right? There's somebody who says like, you know, as a Jew, that's the most important thing about me. And people who are like, no, like, yeah, my mom's Jewish, but like, don't call me a Jew. It's not, it's not part of, or gender or anything else.

Adrienne Ashe, who died about 10 years ago. But this oral history, it just like leapt off the page because she was wrestling with so many of these ideas about identity and blindness and sort of how central it should be in ways that I've just been searching for. And it was one of those reading experiences where you're like, oh, I found this person who has been thinking about everything and is 10 times smarter than I am. And I'm so grateful. But you know, her conclusion, if I can paraphrase it, is that for her, and again, this is just one person's approach, but I found it really powerful. She doesn't want blindness to be central in her life. You know, there's a, there's a writer, Georgina Klieg, who I really admire, who talks about like on some days it matters less than the weather. And I've, and I've experienced that too. Like for all this and all the focus I've put on

it in writing and talking and thinking about it, you know, when I'm at home eating dinner with my family, it's not like I'm a blind man eating dinner with my family, right? It does disappear. But for Ash, what she says is, you know, when she experiences discrimination, when she applies for a job and they say, what are you talking about? We can't hire a blind person. Like that's bonkers. No, you know, then she's blind and then it kind of gets forced on her. And I don't totally subscribe to that. I do want to reserve space for a more positive place for blindness to have in my life. I feel like that framework, it's like either disappears entirely or it's a negative trait, you know, and just the experiences

I've had with other blind people kind of in community is really beautiful. And so there's that part of it too. But I just like the way that the way she describes it, it doesn't have to be in this fixed place. Like for me, blindness is in position A17 and like it moves depending on your relations with other people and yourself. I'm Jason Alexander. And I'm Peter Tilden. And together on the Really No Really podcast, our mission is to get the true answers to life's baffling questions like why they refuse to make the bathroom door go all the way to the floor. We got the answer. Will space junk

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and also labels or diagnoses, right? So like I'm a recovering heroin addict and alcoholic, right? And so at one point, particularly as I was getting sober, that was a big part of my identity. And interestingly, the thing that sort of caused me to move away from 12-step programs was the fact that that identity was still meant to be central and it didn't feel central to me anymore. Right. There was this positioning of there's us, the alcoholics, and then there's the normal people. And I went, that's a false distinction. That's not true. Of course, when I drink, I have problems that Bob doesn't, but fundamentally Bob and I are still very much the same. Yeah. Yeah. And so, you know, where identity fits, you know, I have been a depression sufferer.

And so, you know, do I have depression? You know, like I'm always fascinated by where, and this is exactly what you're saying, where identity or diagnosis or whatever is helpful. And when it ceases to be helpful. And I love what you're saying that it doesn't hold a fixed position. It should naturally sort of move based on where you are, what's happening with you. You know, like I would imagine for you, if you suddenly notice a shift in your sight for a little while, your blindness becomes more central. anything, right? We just get used to nearly anything. So I'm just fascinated by and love the idea of like, how can I use identity or diagnosis or whatever you want to call it as a tool that can be helpful, like you said, and other times like not helpful. I think it's so important to the way that one defines it oneself versus having it imposed from the outside. You know, and I think there's an element to which if like I'm introducing you and I'm like, this is Eric, who is a former addict. You know, like,

it's like, no, like you don't get to say that about me. Like that's, that's yours to say. Yes. And you know, I think this is a really common experience of people with disabilities where like, I'm just a guy waiting for the bus, but suddenly it's like, sir, you are blind and I allow me to, you know, and the good intentions are there, but what it does is, sir, you are blind and I allow me to, you know, and the good intentions are there. But what it does is it takes me from being a guy reading the paper, waiting for the bus to suddenly like, I am a blind problem in the world. And I think it's a version of that Adrian Ash sense of oppression, even though it's like a super low key, like microaggression version of it. Like it's not like being denied a job, but it's still like, it doesn't let me just be a human in

the world. It forces me into this identity category that for someone else has a bunch of problems that I don't necessarily feel. I think that's really an important point, right? Because I can choose internally which identity I want to adopt and use, but externally, I often don't get the choice, race being a great example, right? I know, like I can have my own internal identity around that, but in certain situations out in the world, many situations, right? It's being imposed upon me. And I love something you say in the book, you say, this is something blind people have said, but really shouldn't have to over and over to the sighted world around us. We're still people we don't see or see very well. But aside from that,

we're just like you. Yeah, yeah. It's something that just comes up again and again. And I try to be careful about implicating myself here too. Like part of what I do in the book is really chronicle my own journey, not just from being sighted to being more blind, but also this sort of attitudinal journey of like, I start the book and I'm really painfully honest in some cases about the ableism that I bring to my encounters with other disabled people.

So I've heard from readers that that's useful in part because they feel like, it's not like I'm letting them off the hook because I don't let myself off the hook, but it's a way of acknowledging that we're all starting from a place of, you know, like blindness is a pretty low incidence disability. Reality is like most people haven't hung out with a blind person. So you're not going to know this stuff. And I certainly hadn't. So I do think it's important to both make that point that in the quote that you read and say like, yeah, it's important to think about the harm that you might do by treating a blind person as like an alien who's just been transported from another planet, but also like not just come out swinging in a way that's going to cut off any possibility of real connection or change. Yeah. And I think, you know, the thing

about when a non-disabled quote unquote person encounters a disabled person, right? There's stigma, but there's often also compassion of a, like, how do I interact in a way that is most helpful to you that feels right. And the challenge I've discovered is that every person with a disability may have a very different feeling about that. You know, like one of my best friends has been in a wheelchair since he was like two years old and I grew up with him, you know, and so I'm very used to a person in a wheelchair and what they might need and what they might not and where the challenges are. But even within that, I can't assume that my friend and how I treat him and how he wants to be treated is the same as Apollo in his wheelchair. Right. And so that's, I think it makes it hard is because I do think there's

stigma, but there's also compassion. Like how do I relate to this person in a kind and decent way? But I don't know how to do that because everybody's a little different in how they want to be related to in regards to their disability. Yeah. Yeah. One really basic but important place to start with that question is to ask rather than offer. I guess offering is a form of asking. So let me rephrase that. I think it's to ask or offer rather than intervene. And I think people have a pang of compassion, a pang of concern or of, you know, a desire to be helpful. And then the mistake is to let that feeling motivate intervention. And that's when you end up grabbing somebody. i promise you this happens every day in every city in this country to a blind or disabled person where like you're sitting on the street corner

maybe not even trying to cross that way but somebody's like sees the green light sees the blind person like okay you're good to go i'm gonna here we go and like they grab the elbow and they pull and it's like i can't tell you how many blind people have told me like i wasn't even trying to cross the street like i was waiting for my taxi or whatever yeah that's the problem is that it's an intervention whereas if you just say like hey you're trying to cross the street can Like I was waiting for my taxi or whatever. Yeah. That's the problem is that it's an intervention. Whereas if you just say like, Hey, you're trying to cross the street. Can I give you some help? No, I'm good. And then, okay. On your way. Right. I had something like that happened today. And it was not with, even with a disabled person, but it was at a restaurant and you were supposed to clear your own table. And there was a younger lady there who was holding

a bunch of plates and she clearly was struggling. And I didn't just go grab the plates and take them away. I said, can I help you? And she said, sure. And I, then I took them. So I think you're, you're absolutely right. It's probably a generally good idea in society across the board these days. Don't touch somebody just without, without seriously, there's very few times that's ever the right thing to do. I mean, I suppose if somebody's about to get run over by a car, perhaps grabbing them is a good idea, but in general, don't touch people without permission. A hundred percent. I have a friend who's blind, who talked about how she actually loved one aspect of the pandemic and the sort of social distancing that it engendered

because people just stopped touching her in the way that she was. So she lives in New York city and she was so sick of it. And suddenly like 2020 comes around and people stopped like intervening into her life. And she also put it in those terms of, I think kind of capitalizing in a good way on the me too movement. You know, she would say when somebody grabs her arm, like you don't have consent to touch me, which has a much different weight to it now. It certainly does. I think it's smart. I think it's a good approach. So listener, consider this your halfway through the episode integration reminder. Remember, knowledge is power, but only if combined with action and integration. It can be

transformative to take a minute to synthesize information rather than just ingesting it in a detached way. So let's collectively take a moment to pause and reflect. What's your one big insight so far, and how can you put it into practice in your life? Seriously, just take a second, pause the audio, and reflect. It can be so powerful to have these reminders to stop and be present, can't it? If you want to keep this momentum going that you built with this little exercise, I'd encourage you to get on our Good Wolf Reminders SMS list. I'll shoot you two texts a week with insightful little prompts and wisdom from podcast guests. They're a nice little nudge to stop and be present in your life, and they're a helpful way to not get lost in the

busyness and forget what is important. You can join at oneufeed.net slash SMS. And if you don't like them, you can get off the list really easily. So far, there are over 1172 others from the one you feed community on the list, and we'd love to welcome you as well. So head on over to one you feed.net slash SMS, and let's feed our good wolves together. One of the great parts of the book is you're interacting with different parts of the blind world that are out there, right? The blind communities. And there's a group called the NFB that you talk about a lot. I'm going to read something else you wrote talking about them. They said, the NFB philosophy straddles two seemingly opposing ideas. On the one hand, the organization

argues that blindness is an incidental attribute that doesn't affect one's ability to accomplish nearly anything. On the other hand, they demand accommodation and special benefits for blind people. These two ideas are difficult to hold at the same time. Are the blind equal to everyone else or do they have special needs? And then you go on to say, but in practice, they're not mutually exclusive. In fact, they're the central tensions of the American way of life. Say more about any aspect of that, that you would like to, because there's a bunch of directions you could take that. Yeah. Yeah. I mean, the first thing that comes to mind, and it is this very complicated idea that I'm still wrestling with, but I think one thing that comes to mind is the way that one

can remove the value judgment from an accommodation. So I think in the same way that we're talking about the sort of misplaced compassion, like we tend to think about accommodations as like something's wrong with you. I mean, this is reductive, but I do think it's an attitude that we see out there. You have a problem. We're going to give you this accommodation to help solve that problem, right? Like you have special needs, right? And I think what the NFB is saying is like, they're not really special needs. Like it's not like it's like tragic loss for me that I can't read print. It's just that as a blind person, print doesn't do much

for me. So I need things in braille or an accessible format. And there's like a subtle shift, but I think it's an important one to just say like the word that they use a lot, which I think is really useful as an alternative. Like I actually need that in an alternative form. There's a philosopher whose name I forget, but I can send it to you later. But there's a philosopher who writes about disability, who talks about mere difference versus bad difference. And I think that's a really useful idea. So like the idea of a mere difference is like, for example, with some exceptions, like being vegetarian, that's like a mere difference, right? It's not like we go to a restaurant and you're like, oh, I'm so sorry to hear that you're a vegetarian. Like maybe, you know, maybe it's just like, oh, you happen to have like different

requirements for what you're going to eat for breakfast today. And I think like that idea, that like seeming paradox in what the NFB is saying there in terms of needing accommodations, but also not being different than anybody else. It's that kind of mere difference. It's like, yeah, I need you to set up the streets so that I can safely cross them. But that's not unreasonable. It's just like, if you're going to make an inclusive society, you have to also think about us. It's an accommodation, but one that everybody gets accommodated in their own way. When I was interviewing the president of the NFB, Mark Riccobono, their headquarters are in Baltimore. And he said to me, you know, Andrew, we pay a very high electricity bill every month. And those lights that we have on all day aren't for us, you know, they're for the

sighted folks who come. And that's a reasonable accommodation that we make for the sighted people who come visit us. You know, and so that kind of reframing, I think, helps you understand that kind of argument that they're making. And I found it fascinating. You talk about these mirror the central tensions of the American way of life. And, you know, you say our laws are in constant tension between personal liberty, and you make the example of the decision to lift mask mandates in the middle of a pandemic, and public welfare, protecting the immunocompromised from a deadly virus. You know, like there's not only a disability aspect to them, there's just a fundamental tension that we find in society. Right. Yeah. One way that I've thought about it is like, there's a circle of inclusion is too

squishy of a word almost, you know, a circle of care is also a squishy word, but like a circle of concern or even regard, like how much of the population are we considering with the sort of infrastructural decisions that we're making, you know? And there are norms, like it's folly to try to argue that there isn't a majority and there isn't like, you know, that most people have sight. Like clearly that's true. But then the question is always like, okay, well, how far are you going to extend the circle? Like, and this is where you, I think, can find really clear, concrete examples of inequalities where who gets to sit at that center and get the sort of norm that doesn't even feel And this is where you, I think, can find really clear, concrete examples of inequalities, where who gets to sit at that center and get the sort of norm that doesn't even feel like

an accommodation. It's just like a basic, obvious right versus who has to agitate to push the circle wider is, yeah, I think that's a fundamental tension in American life and probably in just civic life anywhere in the world. I'm Jason Alexander. And I'm Peter Tilden. And together on the Really No Really podcast, our mission is to get the true answers to life's baffling questions like why they refuse to make the bathroom door go all the way to the floor.

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or wherever you get your podcasts. While we're talking sort of about societal aspects of this, right, you make an interesting point, which is you're talking about, you know, the quality of a blind person's life. And you say that one of the most important factors is their socioeconomic standing. Say more about that. Yeah. I think that when I started writing the book, I had this pretty naive sense that for me personally, you know, the book is at heart a memoir, you know, that I was becoming marginalized by blindness and that I was losing all of my privilege. Right. And that I'm like a economically privileged white guy, cisgender, heterosexual, et cetera, like all the, pretty much check all the boxes of privilege in

the society. But what was me, I'm becoming blind. And now like, I'm going to see life from the other side. I'm going to experience life. And certainly I have anxieties about that. You know, and I, I look at the 70% unemployment figure, which is a really astonishing number that demands to be underlined. You know, 70% of blind people who are, you know, working age don't have full-time employment. And yet, the more I researched and reported and hung out with blind communities, the more I realized that my privilege was kind of surprisingly intact in a lot of ways. And that, you know, a lot of the inequities that we talk about in our society, like income inequality, remain the kind of most salient factors in a lot of ways. Another way to

say it is that there's like an intersectional analysis you could make, right? Like income and disability and race all kind of compound with each other. And so that for me, I could buy a Braille display and like, I have the leisure time to teach myself Braille. And that as a a result my employability is much higher than somebody who doesn't have access to braille because there's sort of there's documented studies that show that sort of employment success and braille are directly linked. virtue of all this privilege I've got, like I am far less likely to experience that kind of oppression, which is not to say I don't experience like those kinds of microaggressions we're talking about, or certainly like if I'm going to apply for a job as a podcast producer or a magazine editor or whatever I might be applying for tomorrow, there could very well be an ableist person on the other side of it that says like, okay, we've got three finalists and like, are we really going to hire the blind guy? You know, certainly I faced that, but the more I thought about it and the more

I looked into it, the more complicated that question became. And, you know, and it feels naive in retrospect, but I also think a lot of people do have this sense of disability as this kind of monolithic marginalization. And I think it is a lot more complicated with all of those other intersecting identities that complicate that picture. I want to talk about the relationships in your life a little bit and what blindness has done to those relationships. Or maybe that's the wrong way to phrase it, but for ease of use way that was surprising to your wife. She wasn't expecting it. And you talk about how to her, you know, the cane made you seem very vulnerable. And I'd love to just kind of talk about, maybe we'll start with her and then we can move on to your son. But talk to me a little bit about what navigating this journey of blindness has been in regards to her, because I think when you met her, you were still pretty

sighted, I guess, for, again, I don't know the right words to use here. So if I'm using anything wrong, tell me, but you were pretty, you were pretty sighted at that point, right? I was. Yeah. And over time that has changed dramatically and that has changed with her. And of course, her experience of you has changed as that has happened. Yeah. So when we met, I still drove. I didn't own a cane. I knew that I had RP, but neither of us, I think, had any real sense of what that meant. When I proposed to her, I said, first I said, will you marry me?

You know, she said, yeah. And then, you know, afterwards we were walking back down this trail and I was like, remember, I'm going blind, right? You know, it was kind of a joke, but also not a joke. And in retrospect, I think it's really important to point out that it's not that just like she didn't have experience with blindness and didn't know what that meant, but I didn't either. It was like both of us were just sort of like, right, there's this thing that probably is going to happen, but what does that even mean? And it's way off. In the same way that when I was diagnosed, you know, 20 years, 15 years before that, I was like, right, sure. Something, but I don't know. And so I think the important thing about Lily and her part in this journey is that she's really had to follow my lead. And the thing that again, maybe naively, I didn't realize until sort of embarrassingly recently was that like, she can't follow my lead if I don't communicate to her what I'm going through.

And I think this is one of these kind of things that at first blush seems very specific to this experience in blindness, but in fact, it's like marriage 101 was like, if you're going through something, you have to talk about it. And I think there's just for me anyway, but I also think probably a lot of people, there's this sense that like the depth of your feeling is so profound that like, of course the person you spend every day with is going to see into your soul and get the anguish and get the anxiety and get everything. And like, lo and behold, like all they see is a dude drying the dishes, right? They don't know unless you say it. And so I think there was like a really long period of me barely able to articulate to myself what I was going through and all the,

all the agony of like, do I buy a cane? What kind of cane do I buy? When do I use it? You know, all that was just in my head on this like demonic whisper level of audibility, you know, and then to expect her to like somehow tune into the demonic whispers and like be present to get it. You know, I felt resentful. Like why isn't she tuning into my demonic whisper radio station in retrospect? Like it was not broadcasting beyond like the micro low power transmitter that I was in my own skull only. So that's a weird way to answer that question. But the scene in the book that relates the sort of most dramatic moment of this, which is I had bought the cane. I had used it like once or twice without Lily. I hadn't talked to her at all about it. And then suddenly in this restaurant,

we're in this like, as all cool restaurants are like extremely dimly lit place. And I'm like, okay, I'm going to go find the bathroom. And I'm like, this is a perfect time to use the cane. Cause like, I can barely see where the tables are. I don't want to knock something over. So I produced the cane. It's like this collapsible thing with elastics, which is sort of like assembles itself as I unfurl it. And she's like, put that away. Like what? You don't need that. What are you doing? It was a really hard moment for us. And it took a long time of kind of parsing it out. But what I realized in retrospect, you know, and it was kind of fascinating. She out. But what I realized in retrospect, you know,

and it was kind of fascinating. She's an English professor. And it's like, we really, like I wrote a draft of the book with a version of that scene in it. And like, we really like did a close reading of my rendering of it together that, you know, if you're going to be married to a critic, like that's the way to do it better than any couples therapy is like text therapy or something, you know, but we like really parsed it out. And that's where I really, through that process, realized the unfairness to her in some ways, you know, not to say that like we both had stuff to learn, but that was my big takeaway from it was like, if I want help, I have to ask for it and I have to be able to name what I need. Yeah. It's fascinating in the book. And I do think it generalizes to relationships in general,

how, like you said, I love the demonic whisper radio, right? It's a great word for what can go on in our brains, how others don't know and how often we won't talk about the really critical or important things. Like, you know, it seems like there was a long period of time where maybe not a long period of time, there was a period of time where you guys were not discussing what was going on at the level it needed to be discussed. And it sounds like that's been remedied, but you know, you guys were not talking about a pretty central thing that was going on and was causing tension, but you still were like, eh, let's not talk about that. Yeah. Yeah. I was talking to a friend of mine last night who has RP and he was just diagnosed

and he's much earlier on in the journey than I am. But he said he read my book and was like thinking about getting a cane because he was recently in New York and in an unfamiliar place and kind of got turned around. He's like, God, I need a cane. And then he like immediately called his wife and was like, just so you know, like I'm thinking about getting a cane. And it was like a direct offshoot of like the cautionary tale. like a direct offshoot of like the cautionary tale, you know? So if there's anything that made me very happy to like, I'm sort of putting it out into the world, like not just to blind guys, but certainly to guys with RP, but anyone like talk about it. Talk about it. Yep. Yep. So let's move from Lily to your son, Oscar. There's a lot of great scenes in the book, but there's a beautiful scene in the book where you're discussing being at maybe the natural history museum and you guys stop being at maybe the Natural History Museum. Yeah. And you guys stop in front of an owl diorama. Do you want to tell that story?

Sure. Yeah. This was a couple of years ago now. It was just me and him. We were visiting New York and I took him to the American Museum of Natural History, which has those incredible dioramas of animals and they're behind glass. And we were walking through the museum together and it was at once a visual experience, you know, like a lot of the exhibits have large print, but also they really put my blindness to the fore because I, you know, I was worried about losing him. So it was a lot of time, like we were kind of in tactile touch and we walked in front of this one exhibit that just looked closed to me. Like it looked like it was closed for repairs because it was totally dark. And you know, my low light vision is basically nil at this point. But then I heard him say,

he was, I think he was probably like nine at the time. He kind of was like, wow, look at that. I was like, Oh, what's, what's going on in there? And he said, Oh, there's an owl like attacking, like look at its talons. And I was like, Oh, I can't, can't see it at all. And he was like, Oh, its talons are like this. And he held up his hand and I was like, Oh, I can't even see his hand. And I had this like painful moment of like wanting to share this moment with him. And it just, I felt excluded. But then I realized like I could just like touch his hand and I like put my hand on his and I felt the like talon shape that he was making. And like, it was totally natural for him and totally natural for me. I like totally saw the owl and like what it was doing. And it was like a moment where I realized like, this is what blindness can be. Like, it doesn't have to be the exclusion. It doesn't have to be a separation. Like there was no, there was nothing missing from that moment for me. It was me and my son, like enjoying this experience together and vision was secondary.

Yeah. I just want to read something you wrote kind of about that because I think it's really beautiful. And you're talking about going home. You said, standing in the crowded subway on our way home, I put my arm around him to keep a tactile eye on him. But as I did, he leaned his head into me and the gesture was at once a functional accommodation for my blindness and a moment of love. The border between these two kinds of touch had dissolved. The day was wonderful, not in spite of my blindness or because of it, but merely alongside it. Yeah. That idea of normalcy really is so crucial because I think that if you go too far in either direction, like to say like, blindness is awesome. And like,

you know, a blindness gives me all these amazing things. I mean, I, you know, I could make that argument about certain aspects of this experience, you know, or to go the other direction and say like, you know, this is a tragedy. And certainly I can make that argument about the things that I've lost or am losing that are wrenchingly painful. There's truth there. But in my own experience, like in this story, and also just in sort of gathering stories of other blind people, like the ultimate takeaway that I bring from this is that possibility of that normalcy. It's really profound and important, I think, because it gets back to what we were talking about, about, you know, the blind person just being a person, right? I think when you overemphasize and you say like the blind person can only ever be a blind person, it strips them of that ability to just be a dad or just be a pedestrian or be a writer or whatever it is that they want to be. And so in that moment, that revelation for me was a really early and important tapping into that possibility of that normalcy. And I think there's a way in which, like when I talk about joy or I talk about like the

really like joyful possibilities of living life as a blind person, it's actually in that normalcy. It's not about some like turbocharged, like Braille is amazing. You know, it's, it's really just like the joy that everyone can feel and you can only access it through a sort of like getting in touch and being grounded in that basic experience of presence and joy. So listener, in thinking about all that and the other great wisdom from today's episode, if you were going to isolate just one top insight that you're taking away, what would it be? Not your top 10, not the top five, just one. What is it? Think about it. Got it? Now I ask you,

what's one tiny, tiny, tiny, tiny little thing you can do today to put it in practice, or maybe just take a baby step towards it. Remember, little by little, a little becomes a lot. Profound change happens as a result of aggregated tiny actions, not massive heroic effort. If you're not already on our Good Wolf Reminder SMS list, I'd highly recommend it as a tool you can leverage to remind you to take those vital baby steps forward. You can get on there at oneyoufeed.net slash SMS. It's totally free and once you're on there, I'll send you a couple text messages a week with little reminders and nudges. Here's one I recently shared to give you an idea of the type of stuff I send. Keep practicing, even if it seems hopeless. Don't strive for perfection. Aim for consistency,

and no matter what, keep showing up for yourself. That was a great gem from recent guest Light Watkins. And if you're on the fence about joining, remember it's totally free and easy to unsubscribe. If you want to get in, I'd love to have you there. Just go to oneufeed.net slash SMS. All right, back to it. You also talk about, you know, there's some other stories relating to Oscar around looking at menus and that, and it ties into this idea that you talk about primarily as you're talking about assistive technologies, right? And you say independence is essential for everyone, right? And especially for disabled people.

But there's irreplaceable value and interdependence to the feeling of shared experience that comes when two people interact in exchange. And you're sort of saying like, I could use the screen reader in this situation. I could also ask my son to read it to me. Right. So say more about sort of balancing those two things. Yeah. Yeah. I mean, if you look at technology for blind people or probably disability more broadly, maybe even anybody, technology is about independence, right? It's like you can do it yourself. Because I think there's this idea that the technology is not a human. Like it's one thing if I have to ask Lily to read me every book I want to read. It's another thing if I can just like hit

alt A on my computer and the computer reads it to me. That's real independence. But disabled thinkers have put forward this idea of interdependence as a really important aspect of the disabled experience. And I have it with Oscar all the time. Like your example that you bring up with the menu, like, yeah, I could have read the menu independently if I had like taken a picture with my phone or use my screen reader. But then the experience of saying to him, like, you know, I actually asked Lily, I was like, what does it say on the menus? They were like up behind the register and I just couldn't see him. And she started to tell me and he was like, let me do it. And he kind of was like, got excited about doing it. And then we had this like really fun exchange where we were like riffing on nachos and like, I was helping him figure out what he wanted to get,

but like he was also taking pleasure in helping me. And that experience was like the reason we went to the restaurant. It's not like I would have been better off with that independence. So it's not, it's not like I'm saying like this technology isn't useful, but rather that I think it gets back to this sort of sense of normalcy, like having interactions with people, even if the people are helping you, creates this possibilities for like a joyful, normal experience. And I think it kind of emphasizes the way that it goes in both directions. So it's not dependence either, right? Like so much of the way that we think about disability is like, ah, this person has these special needs and I'm going to help them,

then they can get where they need to go. But if you're really compassionate, I think every exchange has this two-wayness to it. There's a writer, Mia Mingus, who has this idea of access intimacy that I think is really important. You know, Mia Mingus, who has this idea of access intimacy that I think is really important. You know, access being like, you know, helping a blind person access a menu or, you know, a person with a mobility disability access a building, whatever it is, there's an intimacy that's possible there where it's not just like a compliance thing, but it's like recognizing, you know, it gets back to the humanity question, like recognizing that the person who you're helping get access to, whatever is is a human and you're a human and therefore there's going to

be an interchange an exchange somehow and like being attentive to that interchange and that you might learn something from the disabled person and they're getting something from you i think it's just a really important thing to bear in mind to get away from this feeling of like a top-down i'm going to help you or the feeling of helplessness. Like I need this person to survive, but rather like we're all in relation with each other. And this is just another way that we're relating to each other. Well, I think that's a beautiful place for us to wrap up on that idea of, yeah, we are all in relation and we all need each other. So Andrew, thank you so much for coming on. I have really enjoyed this conversation. I enjoyed the book and I just love all the themes that it kind of brings up and the really nuanced way that you handle them.

Oh, thank you so much. This is really fun for me too. I love this conversation. Thank you. If what you just heard was helpful to you, please consider making a monthly donation to support the One You Feed podcast. When you join our membership community with this monthly pledge, you get lots of exclusive members-only benefits. It's our way of saying thank you for your support. Now, we are so grateful for the members of our community. We wouldn't be able to do what we do without their support, and we don't

take a single dollar for granted. To learn more, make a donation at any level, and become a member of the One You Feed community, go to oneyoufeed.net slash join. The One You Feed podcast would like to sincerely thank our sponsors for supporting the show. I'm Jason Alexander. And I'm Peter Tilden. And together, our mission on the Really No Really podcast is to get the true answers to life's baffling questions like why the bathroom door doesn't go all the way to the floor, what's in the museum of failure, and does your dog truly love you? We have the answer. Go to reallynoreally.com and register to win 500 a guest spot on our podcast or a limited edition signed jason bobblehead the really know really podcast follow us on the iheart radio app apple podcasts or wherever you get your

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