Speaker 1: I like totally saw the owl and like what it
Speaker 1: was doing, and it was like a moment where I realized,
Speaker 1: this is what line this can be. It doesn't have
Speaker 1: to be the exclusion, it doesn't have to be a separation.
Speaker 1: Like there was nothing missing from that moment for me.
Speaker 1: It was me and my son enjoying this experience together,
Speaker 1: and vision was secondary.
Speaker 2: Welcome to the one you feed Throughout time, great thinkers
Speaker 2: have recognized the importance of the thoughts we have. Quotes
Speaker 2: like garbage in, garbage out, or you are what you
Speaker 2: think ring true, and yet for many of us, our
Speaker 2: thoughts don't strengthen or empower us. We tend toward negativity,
Speaker 2: self pity, jealousy, or fear. We see what we don't
Speaker 2: have instead of what we do. We think things that
Speaker 2: hold us back and dampen our spirit. But it's not
Speaker 2: just about thinking. Our actions matter. It takes conscious, consistent,
Speaker 2: and creative effort to make a life worth living. This
Speaker 2: podcast is about how other people keep themselves moving in
Speaker 2: the right direction, how they feed their good wolf. Thanks
Speaker 2: for joining us. Our guest on this episode is Andrew Leland.
Speaker 2: He's the author of the Country of the Blind, a
Speaker 2: memoir at the End of Site, which was long listed
Speaker 2: for the twenty twenty three Andrew Carnegie Medal for Excellence
Speaker 2: and Nonfiction, and was named by Publishers Weekly as one
Speaker 2: of the ten best books of the year. His writing
Speaker 2: has appeared in The New York Times Magazine, The New Yorker,
Speaker 2: McSweeney's Quarterly, and the San Francisco Chronicle, among other outlets.
Speaker 2: From twenty thirteen to twenty nineteen, he hosted and produced
Speaker 2: The Organist, an arts and culture podcast for KCRW. Andrew
Speaker 2: has been an editor at The Believer since two thousand
Speaker 2: and three.
Speaker 3: Hi, Andrew, Welcome to the show.
Speaker 1: Hey, thanks for having me.
Speaker 3: We are going to be discussing your book, The Country
Speaker 3: of the Blind. But before we do that, we'll start
Speaker 3: like we always do at the Parable. And in the Parable,
Speaker 3: there's a grandparent who's talking with their grandchild and they say,
Speaker 3: in life, there are two wolves inside of us that
Speaker 3: are always at battle. One is a good wolf, which
Speaker 3: represents things like kindness and bravery and love, and the
Speaker 3: other is a bad wolf, which represents things like greed
Speaker 3: and hatred and fear. And the grandchild stops. They think
Speaker 3: about it for a second. They look up at their grandparents.
Speaker 3: They say, well, which one wins, and the grandparent says,
Speaker 3: the one you feed. So I'd like to start off
Speaker 3: by asking you what that parable means to you in
Speaker 3: your life and in the work that you do.
Speaker 1: Well. My work in my life for the last couple
Speaker 1: of years has been really focused on thinking about the
Speaker 1: experience of acquiring a disability, really in particular for me,
Speaker 1: of the very gradual process of becoming blind. And I'm
Speaker 1: still in the midst of that process. The disease I
Speaker 1: have RP or retinis pigmentosa is a very gradual one,
Speaker 1: so you know, I still have a little bit of
Speaker 1: central vision, but I've lost a tremendous amount of vision
Speaker 1: over the last you know, thirty years. And there are
Speaker 1: a lot of different ways to approach that experience, and
Speaker 1: so I think the parable suggests sort of the two
Speaker 1: paths that one can take in confronting that experience. And
Speaker 1: I do see it, you know, and I think I
Speaker 1: try to be really clear about it and honest with
Speaker 1: myself about it, that there is a certain amount of
Speaker 1: bad wolf feeding that I think is necessary, if I
Speaker 1: could put it in those terms, Like, you know, there's
Speaker 1: grief and there's resentment and there's anger that I think
Speaker 1: are natural reactions to that feeling of loss of control
Speaker 1: or just of losing something that is incredibly useful. But
Speaker 1: I think one thing that I've discovered through this process
Speaker 1: is that there is actually a good wolf too in there,
Speaker 1: which is to say that there are are ways to
Speaker 1: inhabit one's blindness or disability that are actually in line
Speaker 1: with the good wolf that Grandpa describes there, you know.
Speaker 1: And I guess if I had to name how that works,
Speaker 1: it has to do with thinking of blindness not as
Speaker 1: a tragedy, not as like an affliction, but rather as
Speaker 1: really like a constraint, a set of problems that one
Speaker 1: needs to innovate to solve in the same way that
Speaker 1: any thinker confronts problems in the world and tinkers and
Speaker 1: you know, thinks and works and researches and experiments and
Speaker 1: finds tools to work through it.
Speaker 3: Yeah, there's a couple things in there. I'd love to
Speaker 3: touch on them, And I think the first one is
Speaker 3: that the parable can give the sense that having things
Speaker 3: like grief and fear and all that are bad and
Speaker 3: they're obviously not right. They're natural emotions that you know,
Speaker 3: we need to process and work through. And then the
Speaker 3: other thing that you said there reminds me of a
Speaker 3: friend of mine and a guest who's been on the
Speaker 3: show a few times, AJ Jacobs, who's a great writer
Speaker 3: and he wrote a recent book all about puzzles. He's
Speaker 3: a puzzle guy. But the thing about it that I
Speaker 3: loved was this idea of thinking about problems as puzzles
Speaker 3: and the way you just described that, right, you were
Speaker 3: describing a puzzle mindset, right, which was like, I got,
Speaker 3: I'm going to figure this out. I'm going to figure
Speaker 3: that out. And I just have always loved that reframing
Speaker 3: of a problem to a puzzle. It just moves your
Speaker 3: right to solution, right.
Speaker 1: Yeah, that's such a great point. And you know, a
Speaker 1: blind mentor of mine has used that word puzzle. He
Speaker 1: called it a magnificent puzzle in fact. Oh and you know,
Speaker 1: and I think the importance of reframing something as a puzzle,
Speaker 1: in addition to what you said about it orienting one
Speaker 1: around solutions, is it also encourages curiosity. Yeah, and that
Speaker 1: is such a crucial idea for me, is that you know,
Speaker 1: you can approach something with resentment or grief or revulsion
Speaker 1: or fear. But almost anything in the world you can
Speaker 1: approach with curiosity, which doesn't mean that that the thing
Speaker 1: you're curious about has to be good, right or I
Speaker 1: have a positive experience or makes you feel pleasurable, but
Speaker 1: you can still instead of pushing it away, you can say, Okay,
Speaker 1: well it's there, like, what is it? Let's poke at
Speaker 1: it a little bit, let's think about it. That's the
Speaker 1: kind of spirit of the puzzle solver that I think
Speaker 1: is incredibly powerful for anyone in a situation like acquiring
Speaker 1: a disability.
Speaker 3: So something I'm going to be doing a little more
Speaker 3: often is ask you, the listener, to reflect on what
Speaker 3: you're hearing. We strongly believe that knowledge is power, but
Speaker 3: only if combined with action and integration. So before we
Speaker 3: move on, I'd like to ask you what's coming up
Speaker 3: for you as you listen to this. Are there any
Speaker 3: things you're currently doing that or feeding your bad wolf
Speaker 3: that might make sense to remove, or any things you
Speaker 3: could do to feed your good wolf that you're not
Speaker 3: currently doing. So, if you have the headspace for it,
Speaker 3: I'd love if you could just pause for a second
Speaker 3: and ask yourself, what's one thing I could do today
Speaker 3: or tonight to feed my good Wolf. Whatever your thing is.
Speaker 3: A really useful strategy can be having something external, a
Speaker 3: prompt or a friend, or a tool that regularly nudges
Speaker 3: you back towards awareness and intentionality. For the past year,
Speaker 3: I've been sending little Goodwolf reminders to some of my
Speaker 3: friends and community members, just quick, little SMS messages two
Speaker 3: times per week that give them a little bit of
Speaker 3: wisdom and remind them to pause for a second and
Speaker 3: come off autopilot. If you want, I can send them
Speaker 3: to you too. I do it totally for free, and
Speaker 3: people seem to really love them. Just drop your information
Speaker 3: at oneufeed dot net slash sms and I can send
Speaker 3: them to you. It's totally free, and if you end
Speaker 3: up not liking the little reminders, you can easily opt out.
Speaker 3: That's one youfeed dot net slash sms. And now back
Speaker 3: to the episode. Tell us just a little bit about
Speaker 3: your condition when it started, kind of what the process
Speaker 3: has been, just so listeners kind of have an idea
Speaker 3: of the overall kind of picture of what this journey
Speaker 3: has been like for you.
Speaker 1: Yeah, I have a pretty classic version of this disease
Speaker 1: from what I understand There's a lot of different experiences
Speaker 1: of RP, but mine is that when I was a teenager,
Speaker 1: I noticed that I had a lot of trouble seeing
Speaker 1: in the dark, and so I would start to do
Speaker 1: these teenage eerly things like, you know, go out with
Speaker 1: my friends, to go up walk on the hillside behind
Speaker 1: their house at night, you know, to do bed not
Speaker 1: too bad things, but you know that the things that
Speaker 1: teenagers do when they're off on their own, sure, you know.
Speaker 1: And I was just like, why is everyone so adept
Speaker 1: at picking their way up this hillside compared to me,
Speaker 1: or you know, going out to the movies, the prospect
Speaker 1: of going to get a drink or go to the
Speaker 1: bathroom in the middle of a movie. I was like,
Speaker 1: why would anyone put themselves through that stress? You know.
Speaker 1: And it took a couple of years of that to
Speaker 1: really realize, like, actually, because it's so ambiguous, you know,
Speaker 1: like it's something that I kept to myself, and then
Speaker 1: when I would talk about it, people would sort of
Speaker 1: be like, I don't know, it's dark, yeah, sure, it's
Speaker 1: hard to see. And it really took this accumulation of
Speaker 1: experiences that I thought, I think something actually is going
Speaker 1: on here. And I had self diagnosed on the early Internet.
Speaker 1: My dad bought me a modem, and then years even
Speaker 1: beyond that continued until finally I complained about it enough
Speaker 1: to my mom that when I was taking a semester
Speaker 1: off after my first year in college, she said, Okay,
Speaker 1: let's go to a rental specialist and see what's happening.
Speaker 1: And then lo and behold, I had the real diagnosis.
Speaker 1: And when that happened, when I was around nineteen, the
Speaker 1: doctor said to me, the prognosis for RP is it'll
Speaker 1: be this very gradual decline in your vision, and it
Speaker 1: goes from the outside in, so it's like this very
Speaker 1: gradual tunnel vision and then when you hit middle age,
Speaker 1: it'll accelerate a lot and you'll be blind. And that
Speaker 1: was a lot to take in in that moment. But also,
Speaker 1: you know, middle age for a nineteen year old felt
Speaker 1: very very distant, and so it's you know, I think
Speaker 1: people expect that story to have this sense of like
Speaker 1: and then my life was forever changed, and my experience
Speaker 1: of it was not that way. It really was like, well,
Speaker 1: that's a curveball, but like now I'm going to go
Speaker 1: back to college and you know, continue being an English
Speaker 1: major and you know, continue doing my college radio show,
Speaker 1: and you know, like my life continued, and you know,
Speaker 1: his prognosis was pretty accurate. I would say, you know,
Speaker 1: I went through my twenties and thirties with this very
Speaker 1: very very gradual narrowing of my field where you know,
Speaker 1: confusing moments like leaving people hanging for high fives or handshakes.
Speaker 1: You know, my night blindness increased. I realized it was
Speaker 1: not that safe to drive at night, you know, And
Speaker 1: there was just this very slow progression of milestones that
Speaker 1: I hit where I stopped driving at night, stopped driving
Speaker 1: during the day was the major one, you know, stopped
Speaker 1: riding a bike. And then about eight or nine years ago,
Speaker 1: when I moved to Massachusetts, that's when I decided, Okay,
Speaker 1: like I'm moving to this new town, I don't know anybody.
Speaker 1: I'm just going to use the white cane wherever I go,
Speaker 1: because I had had a white cane before that, but
Speaker 1: it's just so stigmatized and it just made me feel
Speaker 1: so so much like an impostor using the white cane
Speaker 1: with visions still, you know, and people look at you
Speaker 1: like you're totally blind with the white cane but I
Speaker 1: just saw you look at your phone, like, what's that about.
Speaker 1: I really had so much resistance built up to it,
Speaker 1: and then when we moved here, I said, okay, I'm
Speaker 1: just I know that it's going to help me. And
Speaker 1: then that was really the beginning of this whole journey
Speaker 1: that I read about in the book, because it kind
Speaker 1: of inserted the social aspect of blindness into every part
Speaker 1: of my life that I couldn't ignore anymore.
Speaker 3: Yeah, you turned this book in probably a couple of
Speaker 3: years ago, right, So what's your current state of vision?
Speaker 3: I'd be curious kind of what it is now and
Speaker 3: even what the change has been since maybe when you
Speaker 3: wrote the book. Yeah.
Speaker 1: I mean I went through significant changes in vision while
Speaker 1: writing the book. And I have to be clear about
Speaker 1: what I mean by significant changes of vision, because this
Speaker 1: is something I've talked about with my I doctor, you know,
Speaker 1: because my doctor it's kind of funny to use this word,
Speaker 1: but she's a scientist, right, Like she's a retinal researcher.
Speaker 1: She publishes papers on retinai's pigmentosa yep. And for her,
Speaker 1: the retinal degeneration is very much like a plot on
Speaker 1: a graph, and the lived experience of what you know,
Speaker 1: the visual field. Normal visual field I think is something
Speaker 1: like one hundred and eighty degrees or something like that,
Speaker 1: you know, and I think I'm at something like five
Speaker 1: or six degrees. I think it's different in each eye,
Speaker 1: but percentage wise, you know, it's a tiny you know,
Speaker 1: it's like four or five percent of what normal visual
Speaker 1: fields see. So I'm looking through a very small tube.
Speaker 1: And the changes that she's tracking are really like from
Speaker 1: five percent to four point eight six percent, right, So
Speaker 1: it's like for her, she's like good stuff, Andrew like
Speaker 1: this is very slow decline. You're doing great. But functionally,
Speaker 1: for me, those changes can sometimes feel immense. It can
Speaker 1: be really hard to predict, Like the change from five
Speaker 1: point one to five don't really notice it, but like
Speaker 1: five to four point nine is like I'm crying and
Speaker 1: it's overwhelming and what's going on? Yea. And so you
Speaker 1: know when I say that I'm going through big changes
Speaker 1: writing the book, like it's within that framework of very
Speaker 1: confusing subjective experience, but it's real. And so you know,
Speaker 1: like I said with the Cane, like it's not like
Speaker 1: there was any moment when my eye doctor or the
Speaker 1: state of Massachusetts or anybody was like, you are now
Speaker 1: official blind enough to need to use this cane wherever
Speaker 1: you walk, right. It was like I had like kicked
Speaker 1: enough dogs and like bruised my shin on enough fire
Speaker 1: hydrants that I was like, you know what, like this
Speaker 1: is going to make my life better if I use
Speaker 1: this thing in public. And while I was writing the book,
Speaker 1: I had a similar revelation about reading print. It's like
Speaker 1: even today, you know, if you was a weird example,
Speaker 1: but like if you poisoned me and like a mystery novel,
Speaker 1: you know, we were like the recipe to the antidote
Speaker 1: is in this edition of Moby Dick that we've changed
Speaker 1: one sentence that has a recipe for the antidote. Like
Speaker 1: I would survive. I could like make it through Moby
Speaker 1: Dick in normal print, but it would suck, Like I
Speaker 1: would just be so unhappy. And so during the course
Speaker 1: of writing the book, I started writing in twenty nineteen,
Speaker 1: and you know, it took me about three years. I
Speaker 1: retired from print, which you know, like stopping driving, like
Speaker 1: using the cane, and that is a major milestone. And
Speaker 1: even though like like I say, I still could technically
Speaker 1: find the antidote as a writer particularly, it was a
Speaker 1: sea change for me and it pushed me even deeper
Speaker 1: into this world of figuring out what a system technology,
Speaker 1: you know, screen readers and learning Braille in that whole
Speaker 1: world that changed while I was writing the book and
Speaker 1: then since I finished the book. It's so hard to explain,
Speaker 1: but I'll try. You know, it's such little things. It's
Speaker 1: like I'll walk into a room and I'm just more
Speaker 1: comfortable using other senses. They're not heightened, I should be clear,
Speaker 1: Like it's not like The Daredevil is the comic book, right,
Speaker 1: Like you don't have superhering or super touch, but you
Speaker 1: use them more. And it's kind of a two way street.
Speaker 1: Like I forced myself to do it more and then
Speaker 1: I just naturally do it more. Like if I'm looking
Speaker 1: for something, I'm just starting to get the memo that
Speaker 1: like raking my small, little five percent visual field over
Speaker 1: a table is not an efficient way to do it,
Speaker 1: so why not just run my hands over it? And
Speaker 1: it's embarrassing because I think if somebody sees me, like
Speaker 1: when I do that. First time I did that in
Speaker 1: a cafe, I felt so strange, just like wiping my
Speaker 1: hands over the table to make sure I hadn't forgotten
Speaker 1: my sunglasses or whatever. But now it feels natural and
Speaker 1: it's just like a blind way of checking to make
Speaker 1: sure I didn't forget anything.
Speaker 3: Yeah. I think what's so f fascinating about your story,
Speaker 3: and you talk about this a lot, is the gradual
Speaker 3: nature of it and the fact that you can't really
Speaker 3: be in non binaries, meaning you're not blind or sited,
Speaker 3: you're both. Yeah, you know, and I think a lot
Speaker 3: of life unfolds in that way. A lot of life
Speaker 3: unfolds in this in between state. As somebody who's studied
Speaker 3: a lot of Buddhism, you know, in Buddhism they talk
Speaker 3: about the Bardo. You know, it's the in between state,
Speaker 3: and technically it's used to refer to sort of between lifetimes,
Speaker 3: but many teachers talk about all the Bardow states that
Speaker 3: we go through in our own lives, and that's kind
Speaker 3: of what you have. There is this I can see
Speaker 3: sort of, but I also can't and I don't really
Speaker 3: fall into either camp fully, which leaves you in a
Speaker 3: weird place.
Speaker 1: Absolutely. Yeah, I think that's true. And you know, just
Speaker 1: to push the ambiguity even further, you know, one of
Speaker 1: the things that another blind mentor of mine said to me,
Speaker 1: my friend Will Butler, and I write about this in
Speaker 1: the book. He says, you know, Andrew, like, you might
Speaker 1: be going blind for a really long time, and you
Speaker 1: might be more blind, you might be less blind, but
Speaker 1: at a certain point you might just have to sort
Speaker 1: of say you're blind, even if there is one percent
Speaker 1: or three percent of vision remaining. And so even though
Speaker 1: I think you're right to say that, like I'm not
Speaker 1: blind and I'm not sighted, at the same time, one
Speaker 1: thing that I'm really pushing towards is to find a
Speaker 1: way to say, even with this site, i am blind,
Speaker 1: and I'm okay with that.
Speaker 3: Right, right, And I assume you know, given the gradual
Speaker 3: nature of this, that that position has shifted and changed
Speaker 3: over time.
Speaker 1: Yeah, Because if you're wanting a binary like this world
Speaker 1: is not for you, right, there's very, very rarely a
Speaker 1: binary that's going to be satisfying in that way. Like
Speaker 1: I write a little bit about this ancient Greek philosophical
Speaker 1: paradox of the heap, where it's like, you know, if
Speaker 1: you put a grain of sand on the table, is
Speaker 1: that a heap? No, of course not. You know, like
Speaker 1: three grains of sand. That's not a heap, you know,
Speaker 1: ten grains of sand? Like how many grains of sand
Speaker 1: does it take? Or you do it in reverse, like
Speaker 1: there's a heap of sand on the table, how many
Speaker 1: do you remove? And like this binary of like heap
Speaker 1: or non heap. It's sort of impossible. You'll never find
Speaker 1: the binary no matter how much you try to think
Speaker 1: it through.
Speaker 3: Yeah, there's another old story. It's the ship of I
Speaker 3: can't remember what it's called. You may even reference it.
Speaker 1: In your thesus, the ship of Theseus.
Speaker 3: It's the same thing, right, tell us about it. It
Speaker 3: comes up a lot on the show. I love it.
Speaker 1: Oh, it's such a good story. Yeah, so don't make
Speaker 1: me tell you. Like the names of the Greek dudes
Speaker 1: who are surely Theseus is one of them. I think
Speaker 1: it's his ship. We can agree, but.
Speaker 3: I just call him Apollo and Zeus and Frank.
Speaker 1: Yeah, Joey. But basically, there's the ship going on, as
Speaker 1: the Greek epics always tell you on epic adventures across
Speaker 1: the seas, you know, and as you do, a plank
Speaker 1: will get rotted or break off in a storm, and
Speaker 1: so you replace it, and over the years every plank
Speaker 1: on the ship is going to be replaced, and it's
Speaker 1: a similar philosophical question. We're like, well, so if the
Speaker 1: none of the original wood is there, is it still
Speaker 1: the Ship of Theseus. Maggie Nelson, who wrote a really
Speaker 1: beautiful book called The Argonauts, which is a lot about
Speaker 1: gender transition, uses that story to talk about gender transition,
Speaker 1: you know, and it really is a story about identity
Speaker 1: at its heart, and you know, like we in our
Speaker 1: lives go through these profound transitions, whether it's just something
Speaker 1: like gender transition, or acquiring disability, becoming blind, or even
Speaker 1: just aging or you know, moving somewhere or going through
Speaker 1: a divorce. You know, there you can sort of name
Speaker 1: any number of these sort of cataclysmic or transformational transitions,
Speaker 1: and you do feel utterly different, and yet there's this
Speaker 1: paradoxical sense that, like the Ship of Thesus, like even
Speaker 1: though everything is radically changed, there's still something that is
Speaker 1: coherent about you and who you are. Yeah.
Speaker 3: Well, I love that story and use it often because
Speaker 3: in Buddhism, when we talk about this sense of a
Speaker 3: self right that I am this unique distinct thing, you know,
Speaker 3: Buddhism would say, yeah, not really, right. They even use
Speaker 3: the term heaps. They're like your five different heaps of things, right,
Speaker 3: But it is identity, and I think one of the
Speaker 3: fascinating things is the identity. I want to read something
Speaker 3: you wrote. You said, I met people who said that
Speaker 3: their blindness meant nothing to them, that it was a
Speaker 3: mere attribute like hair color, and others whose blindness utterly
Speaker 3: defined and upended their lives. Say more about that, because
Speaker 3: that's what we're kind of talking about here, right, is identity.
Speaker 3: Andrew Solomon, another great writer, has been a guest on
Speaker 3: the show. In his book Far from the Tree, talked
Speaker 3: about illness or identity.
Speaker 1: Mm hmmm. Yeah. Solomon is a big is a big influence.
Speaker 1: I think that book is really important and was one
Speaker 1: of my introductions to thinking about disability and identity in
Speaker 1: the terms you're talking about. Yeah, I mean that quote
Speaker 1: that you read. There is such a spectrum of people's
Speaker 1: relationships with blindness, and I can't pass judgment, you know.
Speaker 1: I think I don't begrudge people who say they don't
Speaker 1: want anything to do with other blind people, you know.
Speaker 1: I think I think everyone has to sort of make
Speaker 1: their peace with it or or just understand it differently.
Speaker 1: And I think you see that across identity really, Like,
Speaker 1: I think there are people who have similar relationship with
Speaker 1: the race, right. There's somebody who says, like, you know,
Speaker 1: as a Jew, that's the most important thing about me,
Speaker 1: and people who are like no, like yeah, my mom's Jewish,
Speaker 1: but like, don't it's not part or gender or anything else.
Speaker 1: One of the revelations to me and researching the book
Speaker 1: was was finding this oral history with a blind bioethicist
Speaker 1: named Adrian Ash who died about ten years ago. But
Speaker 1: this oral history, it just like leaped off the page
Speaker 1: because she was wrestling with so many of these ideas
Speaker 1: about identity and blindness and sort of how central it
Speaker 1: should be in ways that I've just been searching for.
Speaker 1: And it was one of those reading experiences when you're like, oh,
Speaker 1: I found this person who has been thinking about everything
Speaker 1: and is ten times smarter than I am, and I'm
Speaker 1: so grateful. But you know, her conclusion, if I can
Speaker 1: paraphrase it, is that for her and again, this is
Speaker 1: just one person's approach, but I found it really powerful.
Speaker 1: She doesn't want blindness to be central in her life.
Speaker 1: You know, there's a there's a writer Georgina Kleigue, who
Speaker 1: I really admire, who talks about like on some days
Speaker 1: it matters less than the weather. And I've experienced that too,
Speaker 1: Like for all the focus I've put on it in
Speaker 1: writing and talking and thinking about it, you know, when
Speaker 1: I'm at home eating dinner with my family, it's not
Speaker 1: like I'm a blind man eating dinner with my family, right,
Speaker 1: it does disappear. What she says is, you know when
Speaker 1: she experiences discrimination when she applies for a job and
Speaker 1: they say, what are you talking about? We can't hire
Speaker 1: a blind person like that sponkers no, you know, then
Speaker 1: she's blind, and then it kind of gets forced on her.
Speaker 1: And I don't totally subscribe to that. I do want
Speaker 1: to reserve space for a more positive place for blindness
Speaker 1: to have in my life. I feel like that framework,
Speaker 1: it's like either disappears entirely or it's a negative trait,
Speaker 1: you know, And just the experiences I've had with other
Speaker 1: blind people kind of in community is really beautiful, and
Speaker 1: so there's that part of it too. But I just
Speaker 1: like the way that the way she describes it, it
Speaker 1: doesn't have to be in this fixed place like for me,
Speaker 1: blindness is in position a seventeen, and like it moves
Speaker 1: depending on your relations with other people and yourself.
Speaker 3: I'm fascinated by identity and also labels or diagnoses, right, So,
Speaker 3: like I'm a recovering heroin addict and alcoholic, right. And
Speaker 3: so at one point, particularly as I was getting sobered,
Speaker 3: that was a big part of my identity. And interestingly,
Speaker 3: the thing that sort of caused me to move away
Speaker 3: from twelve step programs was the fact that that identity
Speaker 3: was still meant to be central and it didn't feel
Speaker 3: central to me anymore. Right. There was this positioning of
Speaker 3: there's us, the alcoholics, and then there's the normal people,
Speaker 3: and I went, that's a false distinction. That's not true.
Speaker 3: Of course, when I drink, I have problems that Bob doesn't,
Speaker 3: But fundamentally, Bob and I are still very much the same. Yeah,
Speaker 3: And so you know where identity fits. You know, I
Speaker 3: have been a depression sufferer, and so you know, do
Speaker 3: I have depression? You know, Like, I'm always fascinated by
Speaker 3: where And this is exactly what you're saying, Where identity
Speaker 3: or diet, ignosis or whatever is helpful and when it
Speaker 3: ceases to be helpful. Yeah, And I love what you're
Speaker 3: saying that it doesn't hold a fixed position. It should
Speaker 3: naturally sort of move based on where you are, what's
Speaker 3: happening with you, you know, like I would imagine for
Speaker 3: you if you've suddenly noticed a shift in your sight
Speaker 3: for a little while, your blindness becomes more central. Of course, yeah,
Speaker 3: then as it kind of goes on, because we just
Speaker 3: adapt to anything, right, we just get used to nearly anything.
Speaker 3: So I'm just fascinated by and love the idea of
Speaker 3: like how can I use identity or diagnosis or whatever
Speaker 3: you want to call it as a tool that can
Speaker 3: be helpful like you said, and other times like not helpful.
Speaker 1: I think it's so important to the way that one
Speaker 1: defines it oneself versus having it imposed from the outside,
Speaker 1: you know. And I think there's an element t which
Speaker 1: off like I'm introducing you and I'm like, this is
Speaker 1: Eric who is a former addict, you know, Like it's
Speaker 1: like no, like you don't get to say that about me,
Speaker 1: Like that's that's yours to say, yes, And you know,
Speaker 1: I think this is a really common experience of people
Speaker 1: with disabilities, where like I'm just a guy waiting for
Speaker 1: the bus, but suddenly it's like sir, you are blind,
Speaker 1: and I allow me to. You know, the good intentions
Speaker 1: are there. But what it does is it takes me
Speaker 1: from being a guy reading the paper waiting for the
Speaker 1: bus to suddenly like, I am a blind problem in
Speaker 1: the world. And I think it's a version of that
Speaker 1: Adrian Ash sense of oppression, even though it's like a
Speaker 1: super low key, like microaggression version of it. Like it's
Speaker 1: not like being denied a job, yeah, but it's still
Speaker 1: like it doesn't let me just be a human in
Speaker 1: the world. It forces me into this identity category that
Speaker 1: for someone else has a bunch of problems that I
Speaker 1: don't necessarily feel.
Speaker 3: I think that's really an important point, right, because I
Speaker 3: can choose internally which identity I want to adopt and use,
Speaker 3: but externally I often don't get the choice, right, race
Speaker 3: being a great example, right, you know, like I can
Speaker 3: have my own internal identity around that, but in certain
Speaker 3: situations out in the world, many situations, right, it's being
Speaker 3: imposed upon me. And I love something you say in
Speaker 3: the book. You say, this is something lying people have
Speaker 3: said but really shouldn't have to over and over to
Speaker 3: the sighted world around us. We're still people we don't
Speaker 3: see or see very well. But aside from that, we're
Speaker 3: just like you.
Speaker 1: Yeah. Yeah, It's something that just comes up again and again,
Speaker 1: And I try to be careful about implicating myself here too,
Speaker 1: Like part of what I do in the book is
Speaker 1: really chronicle my own journey not just from being cited
Speaker 1: to being more blind, but also this sort of attitudinal
Speaker 1: journey of like I start the book and I'm really
Speaker 1: painfully honest in some cases about the ableism that I
Speaker 1: bring to my encounters with other disabled people. So I've
Speaker 1: heard from readers that that's useful in part because they
Speaker 1: feel like it's not like I'm letting them off the hook,
Speaker 1: because I don't let myself off the hook. But it's
Speaker 1: a way of acknowledging that we're all starting from a
Speaker 1: place of you know, like their blindness is a pretty
Speaker 1: low incidence disability. Reality is, like most people haven't hung
Speaker 1: out with a blind person, so you're not going to
Speaker 1: know this stuff, and I certainly hadn't, So I do
Speaker 1: think it's important to both make that point that in
Speaker 1: the quote that you read, and say like, yeah, it's
Speaker 1: important to think about the harm that you might do
Speaker 1: by treating a blind person as like an alien who's
Speaker 1: just been transported from another planet, but also like not
Speaker 1: just come out swinging in a way that's going to
Speaker 1: cut off any possibility of real connection or change.
Speaker 3: Yeah, and I think you know the thing about when
Speaker 3: a non disabled quote unquote person encounters a disabled person, Right,
Speaker 3: there's stigma, but there's often also compassion of a like,
Speaker 3: how do I interact in a way that is most
Speaker 3: helpful to you that feels right? And the challenge I've
Speaker 3: discovered is that every person with the disability may have
Speaker 3: a very different feeling about that.
Speaker 1: You know.
Speaker 3: Like one of my best friends has been in a
Speaker 3: wheelchair since he was like two years old, and I
Speaker 3: grew up with him, you know, and so I'm very
Speaker 3: used to a person in a wheelchair and what they
Speaker 3: might need and what they might not and where the
Speaker 3: challenges are. But even within that, I can't assume that
Speaker 3: my friend and how I treat him and how he
Speaker 3: wants to be treated is the same as Apollo his wheelchair, right. Yeah,
Speaker 3: And so that's I think it makes it hard, is
Speaker 3: because I do think there's stigma, but there's also compassion,
Speaker 3: like how do I relate to this person in a
Speaker 3: kind and decent way? But I don't know how to
Speaker 3: do that because everybody's a little different in how they
Speaker 3: want to be related to h in regards to their disability.
Speaker 1: Yeah. Yeah, One really basic but important place to start
Speaker 1: with that question is to ask rather than offer. I
Speaker 1: guess offering is a form of asking, So let me
Speaker 1: rephrase that. I think it's to ask or offer rather
Speaker 1: than intervene. And I think people have a pang of compassion,
Speaker 1: a pang of concern, or of you know, a desire
Speaker 1: to be helpful, and then the mistake is to let
Speaker 1: that feeling motivate intervention, and that's when you end up
Speaker 1: grabbing somebody. I promise you this happens every day in
Speaker 1: every city in this country to a blind or disabled person.
Speaker 1: Or like you're sitting on the street corner, maybe not
Speaker 1: even trying to cross that way, but somebody's like sees
Speaker 1: the green light, sees the blind person like, okay, you're
Speaker 1: good to go. I'm gonna here we go. Like they
Speaker 1: grab the elbow and they pull, and it's like, I
Speaker 1: can't tell you how many black people have told me
Speaker 1: like I wasn't even trying to cross the street, like
Speaker 1: I was waiting for my taxi or whatever. Yeah, that's
Speaker 1: the problem is that it's an intervention, whereas if you
Speaker 1: just say, like, heyre trying to cross the street, can
Speaker 1: I give you some help? No, I'm good, and then okay,
Speaker 1: on your way, right.
Speaker 3: I had something like that happened today. It was not
Speaker 3: even with the disabled person, but was at a restaurant
Speaker 3: and you were supposed to clear your own table, and
Speaker 3: there was a younger lady there who was holding a
Speaker 3: bunch of plates, and she clearly was struggling. And I
Speaker 3: didn't just go grab the plates and take them away.
Speaker 3: I said, can I help you? And she said sure,
Speaker 3: and then I took them. So I think you're you're
Speaker 3: absolutely right. It's probably a generally good idea in society
Speaker 3: across the board these days. Don't touch somebody just without
Speaker 3: with them. Seriously, there's very few times that's ever the
Speaker 3: right thing to do. I mean, I suppose if somebody's
Speaker 3: about to get run over by a car, perhaps grabbing
Speaker 3: them is a good idea, But in general, don't touch
Speaker 3: people without permission.
Speaker 1: One hundred percent. I have a friend who's blind who
Speaker 1: talked about how she actually loved one aspect of the
Speaker 1: pandemic and the sort of social distancing that it engendered
Speaker 1: because people just stopped touching her in the way that
Speaker 1: she was. So she lives in New York City and
Speaker 1: she was so sick of it, and suddenly, like twenty
Speaker 1: twenty comes around and people stopped like intervening into her life.
Speaker 1: And she also put it in those terms of I
Speaker 1: think kind of capitalizing in a good way on the
Speaker 1: me too movement. You know, she would say when somebody
Speaker 1: grabs her arm, like you don't have consent to touch me,
Speaker 1: which has a much different weight to.
Speaker 3: It now it certainly does.
Speaker 1: I think it's smart. I think it's a good approach.
Speaker 3: So listener, consider this. You're halfway through the episode integration reminder.
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Speaker 3: to synthesize information rather than just ingesting it in a
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Speaker 3: and reflect, what's your one big insight so far and
Speaker 3: how can you put it into practice in your life? Seriously,
Speaker 3: just take a second, pause the audio and reflect. It
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Speaker 3: Wolves together. One of the great parts of the book
Speaker 3: is you're interacting with different parts of the blind world
Speaker 3: that are out there right the blind communities. And there's
Speaker 3: a group called the NFB that you talk about a lot.
Speaker 3: I'm going to read something else you wrote talking about them.
Speaker 3: They say the NFB philosophy straddles two seemingly opposing ideas.
Speaker 3: On the one hand, the organization argues that blindness is
Speaker 3: an incid general attribute that doesn't affect one's ability to
Speaker 3: accomplish nearly anything. On the other hand, they demand accommodation
Speaker 3: and special benefits for blind people. These two ideas are
Speaker 3: difficult to hold at the same time. Are the blind
Speaker 3: equal to everyone else? Or do they have special needs?
Speaker 3: And then you go on to say, but in practice
Speaker 3: they're not mutually exclusive. In fact of the central tensions
Speaker 3: of the American way of life, say more about any
Speaker 3: aspect of that that you would like to because there's
Speaker 3: a bunch of directions you could take that.
Speaker 1: Yeah, yeah, I mean the first thing that comes to mind,
Speaker 1: and it is this very complicated idea that I'm still
Speaker 1: wrestling with, but I think one thing that comes to
Speaker 1: mind is the way that one can remove the value
Speaker 1: judgment from an accommodation. So I think in the same
Speaker 1: way that we're talking about the sort of misplaced compassion,
Speaker 1: like we tend to think about accommodations as like something's
Speaker 1: wrong with you. I mean, this is reductive, but I
Speaker 1: do think it's an attitude that we see out there,
Speaker 1: like you have a problem, We're going to give you
Speaker 1: this accommodation to help solve that problem, right, Like you
Speaker 1: have special needs, right, And I think what the NFB
Speaker 1: is saying is like they're not really special needs. Like
Speaker 1: it's not like it's like tragic loss for me that
Speaker 1: I can't read print. It's just that as a blind person,
Speaker 1: print doesn't do much for me, so I need things
Speaker 1: in braille or an accessible format. And there's like a
Speaker 1: subtle shift, but I think it's an important one to
Speaker 1: just say, Like the word that they use a lot,
Speaker 1: which I think is really useful, is an alternative, like
Speaker 1: I actually need that in an alternative form. There's a
Speaker 1: philosopher whose name I forget, but I can send it
Speaker 1: to you later. But there's a philosopher who writes about disability,
Speaker 1: who talks about mere difference versus bad difference. And I
Speaker 1: think that's a really useful idea. So, like the idea
Speaker 1: of a mere difference is like, for example, with some exceptions,
Speaker 1: like being vegetarian, that's like a mirror difference.
Speaker 2: Right.
Speaker 1: It's not like we go to a restaurant and you're like, oh,
Speaker 1: I'm so sorry to hear that you're a vegetarian, Like
Speaker 1: maybe you know, maybe it's just like, oh, you happen
Speaker 1: to have different requirements for what you're going to eat
Speaker 1: for breakfast today, And I think like that idea. They're
Speaker 1: that like seeming paradox in what the NFB is saying
Speaker 1: there in terms of needing accommodations, but also not being
Speaker 1: different than anybody else. It's that kind of mere difference.
Speaker 1: It's like, yeah, I need you to set up the
Speaker 1: streets so that I can safely cross them, But that's
Speaker 1: not like unreasonable. It's just like, if you're going to
Speaker 1: make an inclusive society, you have to also think about us.
Speaker 1: It's an accommodation, but one that like everybody gets accommodated
Speaker 1: in their own way. Like when I was interviewing the
Speaker 1: president of the NFB, Mark WRIC a bono. Their headquarters
Speaker 1: are in Baltimore, and he said to me, you know, Andrew,
Speaker 1: we pay a very high electricity bill every month, and
Speaker 1: those lights that we have on all day on for us,
Speaker 1: you know, they're for the sighted folks who come. And
Speaker 1: that's a reasonable accommodation that we make for the side
Speaker 1: of people who come visit us, you know. And so
Speaker 1: that kind of reframing, I think helps you understand that
Speaker 1: kind of argument that they're making and.
Speaker 3: I find it fascinating you talk about these mirror the
Speaker 3: central tensions of the American way of life, and you know,
Speaker 3: you say, our laws are in constant tension between personal liberty,
Speaker 3: and you make the example of the decision to live
Speaker 3: mask mandates in the middle of a pandemic and public
Speaker 3: welfare protecting the immunocompromise from a deadly virus. You know,
Speaker 3: like that there's not only a disability aspect to them,
Speaker 3: there's just a fundamental tension that we find in society.
Speaker 1: Right. Yeah. One way that I've thought about it is
Speaker 1: like there's a circle of inclusion is too squishy of
Speaker 1: a word, almost, you know, a circle of care is
Speaker 1: also a squishy word, but like a circle of concern
Speaker 1: or even regard, like how much of the population are
Speaker 1: we considering with the sort of infrastructural decisions that we're making,
Speaker 1: you know, and there are norms like it's folly to
Speaker 1: try to argue that there isn't a majority, and there
Speaker 1: isn't like you know that most people have sight, Like
Speaker 1: clearly that's true, But then the question is always like, okay, well,
Speaker 1: how far are you going to extend the circle? Like
Speaker 1: and this is where you I think can find really clear,
Speaker 1: concrete examples of inequalities where who gets to sit at
Speaker 1: that center and get the sort of norm that doesn't
Speaker 1: even feel like an accommodation. It's just like a basic
Speaker 1: obvious right versus who has to agitate to push the
Speaker 1: circle wider. Yeah, I think that's a fundamental tension in
Speaker 1: American life and probably in just civic life anywhere in
Speaker 1: the world.
Speaker 3: While we're talking sort of about societal aspects of this, right,
Speaker 3: you make an interesting point, which is you're talking about,
Speaker 3: you know, the quality of a blind person's life, and
Speaker 3: you say that one of the most important factors is
Speaker 3: their socioeconomic standing. Say more about that.
Speaker 1: Yeah, I think that when I started writing the book,
Speaker 1: I had this pretty naive sense that for me personally,
Speaker 1: you know, the book is at heart a memoir. You know,
Speaker 1: that I was becoming marginalized by blindness, and that I
Speaker 1: was using all of my privilege right, and that I'm
Speaker 1: like a economically privileged you know, white guy, cisgender, heterosexual,
Speaker 1: et cetera. Like all pretty much check all the boxes
Speaker 1: of privilege in the society. But what is me. I'm
Speaker 1: becoming blind and now like I'm going to see life
Speaker 1: from the other side, I'm going to experience life, and
Speaker 1: certainly I have anxieties about that, you know, And I
Speaker 1: look at the seventy percent unemployment figure, which is a
Speaker 1: really astonishing number that demands to be underlined. You know,
Speaker 1: seventy percent of blind people who are you know, working
Speaker 1: age don't have full time employment. And yet the more
Speaker 1: I researched and reported and hung out with blind communities,
Speaker 1: the more I realized that my privilege was kind of
Speaker 1: surprisingly intact in a lot of ways, and that you know,
Speaker 1: a lot of the inequities that we talk about in
Speaker 1: our society, like income inequality, remain the kind of most
Speaker 1: salient factors in a lot of ways. Another way to
Speaker 1: say it is that there's like an intersectional analysis you
Speaker 1: could make, right, like income and disability and race all
Speaker 1: kind of compound with each other, and so that for me,
Speaker 1: I could buy a braille display and like, I have
Speaker 1: the leisure time to teach myself braille, and that as
Speaker 1: a result, my employability is much higher than somebody who
Speaker 1: doesn't have access to braille because there's sort of there's
Speaker 1: documented studies that show that sort of employment success and
Speaker 1: brail are directly linked. And thinking about like oppression and
Speaker 1: what oppression looks like for a blind person, Like I think,
Speaker 1: just by virtue of all this privilege I've got, like
Speaker 1: I am far less likely to experience that kind of oppression,
Speaker 1: Which is not to say I don't experience like those
Speaker 1: kind of microaggressions we're talking about. Or certainly, like if
Speaker 1: I'm going to apply for a job as a podcast
Speaker 1: producer or a magazine editor or whatever, I might be
Speaker 1: applying for it tomorrow, there could very well be enable
Speaker 1: us personally. Their side of it says like, Okay, we've
Speaker 1: got three finalists, and like, are we really going to
Speaker 1: hire the blind guy? Right? You know, certainly I face that,
Speaker 1: But the more I thought about it, and the more
Speaker 1: I looked into it, the more complicated that question became,
Speaker 1: you know, and it feels not even retrospect. But I
Speaker 1: also think a lot of people do have this sense
Speaker 1: of disability as this kind of monolithic marginalization, and I
Speaker 1: think it is a lot more complicated with all of
Speaker 1: those other intersecting identities that complicate that picture.
Speaker 3: I want to talk about the relationships in your life
Speaker 3: a little bit and what blindness has done to those relationships,
Speaker 3: or maybe that's the wrong way to phrase it, but
Speaker 3: for ease of use, that's what we'll say. You know,
Speaker 3: there's a story in the book where you talk about
Speaker 3: how you've finally, at one point decided to use a cane,
Speaker 3: and when you did, you did it sort of in
Speaker 3: a way that was surprising to your wife. She wasn't
Speaker 3: expecting it, and you talk about how to her, you know,
Speaker 3: the caine made you seem very vulnerable, and I'd love
Speaker 3: to just kind of talk about Maybe we'll start with
Speaker 3: her and then we can move on to your son,
Speaker 3: but talk to me a little bit about what navigating
Speaker 3: this journey of blindness has been in regards to her,
Speaker 3: because I think when you met her you were still
Speaker 3: pretty cited. I guess for again, I don't know the
Speaker 3: right words to use here, so you from use anything wrong.
Speaker 3: Tell me, but you were pretty You were pretty cited
Speaker 3: at that point, right, I was. And over time that
Speaker 3: has changed dramatically, and that has changed with her, and
Speaker 3: of course her experience of you has changed as that
Speaker 3: has happened.
Speaker 1: Yeah, So when we met, I still drove, I didn't
Speaker 1: own a cane. I knew that I had RP, but
Speaker 1: neither of us I think had any real sense of
Speaker 1: what that meant. When I proposed to her, I said, first,
Speaker 1: I said, will you marry me?
Speaker 2: You know?
Speaker 1: She said yeah. And then you know, afterwards, we were
Speaker 1: walking back down this trail and I was like, remember,
Speaker 1: I'm going blind, right, you know, it's kind of a joke,
Speaker 1: but also not a joke, And in retrospect, I think
Speaker 1: it's really important to point out that it's not that
Speaker 1: just like she didn't have experience with blindness and didn't
Speaker 1: know what that meant, but I didn't either. It was
Speaker 1: like both of us were just sort of like, right,
Speaker 1: there's this thing that probably is going to happen, but like,
Speaker 1: what does that even mean? In the same way that
Speaker 1: when I was diagnosed, you know, twenty years fifteen years
Speaker 1: before that, I was like, right, sure something, but I
Speaker 1: don't know. And so I think the important thing about
Speaker 1: Lily and her part in this journey is that she's
Speaker 1: really had to follow my lead. And the thing that,
Speaker 1: again maybe naively I didn't realize until sort of embarrassingly recently,
Speaker 1: was that, like, she can't follow my lead if I
Speaker 1: don't communicate to her what I'm going through. And I
Speaker 1: think this is one of these kind of things that
Speaker 1: at first blush seems very specific to this experience in blindness,
Speaker 1: but in fact as like marriage one oh one. It's
Speaker 1: like if you're going through something, you have to talk
Speaker 1: about it. And I think there's just for me anyway,
Speaker 1: But I also think probably a lot of people, there's
Speaker 1: this sense that like the depth of your feeling is
Speaker 1: so profound that like, of course the person you spend
Speaker 1: every day with is going to see into your soul
Speaker 1: and get the anguish and get the anxiety and get
Speaker 1: everything and like lo and behold, Like all they see
Speaker 1: is a dude drying the dishes, right, They don't know
Speaker 1: unless you say it. And so I think there was
Speaker 1: like a really long period of me barely able to
Speaker 1: articulate to myself what I was going through, and all
Speaker 1: the agony of like do I buy a cane? What
Speaker 1: kind of cane do I buy? When do I use it?
Speaker 1: You know? All that was just in my head on
Speaker 1: this like demonic whisper level of audibility, you know, And
Speaker 1: then to expect her to like somehow tune into the
Speaker 1: demonic whispers and like be present to get it, you know,
Speaker 1: I felt resentful, like why isn't she tuning into my
Speaker 1: demonic whisper radio station in retrospect, like it was not
Speaker 1: broadcasting beyond like the micro low power transmitter that I
Speaker 1: was in my own skull only. So that's a weird
Speaker 1: way to answer that question. But the scene in the
Speaker 1: book that relates the sort of most dramatic moment of this,
Speaker 1: which is I had bought the cane, I had used
Speaker 1: it like once or twice without Lily. I hadn't talked
Speaker 1: to her at all about it, and then suddenly in
Speaker 1: this restaurant we're in this like as all cool restaurants
Speaker 1: are like extremely dimly lit plays, and I'm like, okay,
Speaker 1: I'm going to go find the bathroom, and I'm like,
Speaker 1: this is a perfect time to use the cane because
Speaker 1: like I can barely see where the tables are. I
Speaker 1: don't want to knock something over, so I produce the cane.
Speaker 1: It's like this collapsible thing with elastics or it just sort
Speaker 1: of like assembles itself as I unfurl it, and she's
Speaker 1: like put that away, Like what you don't need that?
Speaker 1: What are you doing? It was a really hard moment
Speaker 1: for us, and it took a long time of kind
Speaker 1: of parsing it out. But what I realized in retrospect,
Speaker 1: you know, and it was kind of fascinating. She's an
Speaker 1: English professor, and it's like we really like I wrote
Speaker 1: a draft of the book with a version of that
Speaker 1: scene in it, and like we really like did a
Speaker 1: close reading of my rendering of it together that you know,
Speaker 1: if you're going to be married to a critic, like
Speaker 1: that's the way to do it better than any couple's
Speaker 1: therapy is like text therapy or something, you know. But
Speaker 1: we like really parsed it out. And that's where I really,
Speaker 1: through that process realized the unfairness to her in some ways,
Speaker 1: you know, not to say that, like we both had
Speaker 1: stuff to learn, but that was my big takeaway from it,
Speaker 1: was like if I want help, I have to ask
Speaker 1: for it and I have to be able to name
Speaker 1: what I need.
Speaker 3: Yeah, it's fascinating in the book, and I do think
Speaker 3: it generalizes two relationships in general. How Like you said,
Speaker 3: I love the demonic whisper radio, right, It's a great
Speaker 3: word for what can go on in our brains, how
Speaker 3: others don't know and how often we won't talk about
Speaker 3: the really critical or important things, like you know, it
Speaker 3: seems like there was a long period of time where
Speaker 3: maybe not a long period time, there was a period
Speaker 3: of time where you guys were not discussing what was
Speaker 3: going on at the level it needed to be discussed. Yeah,
Speaker 3: and it sounds like that's been remedied, but you know,
Speaker 3: you guys were not talking about a pretty central thing
Speaker 3: that was going on and was causing tention. Yeah, but
Speaker 3: you still were like, Eh, let's not talk about that.
Speaker 1: Yeah. Yeah. I was talking to a friend of mine
Speaker 1: last night who has RP and he was just diagnosed
Speaker 1: and he's much earlier on in the journey than I am,
Speaker 1: but he said he read my book and was like
Speaker 1: thinking about getting a cane because he was recently in
Speaker 1: New York and in an unfamiliar place and kind of
Speaker 1: got turned around. He's like, God, I need a cane.
Speaker 1: And then he like immediately called his wife and was
Speaker 1: like just so you know, like I'm thinking about getting
Speaker 1: a cane. And it was like a direct offshoot of
Speaker 1: like the cautionary tail. You know. So if there's anything
Speaker 1: that made me very happy that like I'm sort of
Speaker 1: putting it out into the world, like not just to
Speaker 1: blind guys, but certainly to guys with URP, but anyone like,
Speaker 1: talk about.
Speaker 3: It, talk about it, yep, yep. So let's move from
Speaker 3: Lily to your son Oscar. There's a lot of great
Speaker 3: scenes in the book. But beautiful scene in the book
Speaker 3: where you're discussing being at maybe the Natural History Museum. Yeah,
Speaker 3: and you guys stop in front of an owl diorama.
Speaker 3: Do you want to tell that story?
Speaker 1: Sure? Yeah. This was a couple of years ago. Now.
Speaker 1: It was just me and him. We were visiting New
Speaker 1: York and I took him to the American Museum of
Speaker 1: Natural History, which has those incredible dioramas of animals and
Speaker 1: they're behind glass, and we were walking through the museum
Speaker 1: together and it was at once a visual experience, you know,
Speaker 1: like a lot of the exhibits have large print, but
Speaker 1: also they really put my blindness to the four because
Speaker 1: you know, I was worried about losing him. So it
Speaker 1: was a lot of time like we were kind of
Speaker 1: in tactile touch, and we walked in front of this
Speaker 1: one exhibit that just looked closed to me, like it
Speaker 1: looked like it was closed for repairs because it was
Speaker 1: totally dark, and you know, my low light vision is
Speaker 1: basically nil at this point. But then I heard him
Speaker 1: say he was. I think he was probably like nine
Speaker 1: at the time. He kind of was like, wow, look
Speaker 1: at that. I was like, Oh, what's what's going on
Speaker 1: in there? And he said, Oh, there's an owl like attacking,
Speaker 1: like look at its talents. And I was like, oh,
Speaker 1: I can't can't see it at all. And he was like, oh,
Speaker 1: it's talents are like this, and he held up his
Speaker 1: hand and I was like, I can't even see his hand.
Speaker 1: And I had this like painful moment of like wanting
Speaker 1: to share this moment with him, and it just I
Speaker 1: felt excluded. But then I realized like I could just
Speaker 1: like touch his hand and I like put my hand
Speaker 1: on his and I felt the like talent shape that
Speaker 1: he was making, and like it was totally natural for
Speaker 1: him and totally natural for me. I like totally saw
Speaker 1: the owl and like what it was doing. And it
Speaker 1: was like a moment where I realized, like this is
Speaker 1: what blindness can be, Like it doesn't have to be
Speaker 1: the exclusion, it doesn't have to be a separation, Like
Speaker 1: there was no there was nothing missing from that moment.
Speaker 1: For me. It was me and my son like enjoying
Speaker 1: this experience together, and vision was secondary.
Speaker 3: Yeah, I just want to read something you wrote kind
Speaker 3: of about that, because I think it's really beautiful. And
Speaker 3: you're talking about going home, you said, standing in the
Speaker 3: crowded subway on our way home, I put my arm
Speaker 3: around him to keep a tactile eye on him. But
Speaker 3: as I did, he leaned his head into me, and
Speaker 3: the gesture was at one. It's a functional accommodation for
Speaker 3: my blindness and a moment of love. The border between
Speaker 3: these two kinds of touch had dissolved. The day was wonderful,
Speaker 3: not in spite of my blindness or because of it,
Speaker 3: but merely alongside it.
Speaker 1: Yeah, that idea of normalcy really is so crucial because
Speaker 1: I think that if you go too far in either direction,
Speaker 1: like to say, like, blindness is awesome, and like, you know,
Speaker 1: a blindness gives me all these amazing things. I mean,
Speaker 1: you know, I could make that argument about certain aspects
Speaker 1: of this experience, you know, or to go in the
Speaker 1: other direction and say, like, you know, this is a tragedy,
Speaker 1: and certainly I could make that argument about the things
Speaker 1: that I've lost or am losing that are wrenchingly painful.
Speaker 1: There's truth there, But in my own experience, like in
Speaker 1: this story and also just in sort of gathering stories
Speaker 1: of other blind people. Like, the ultimate takeaway that I
Speaker 1: bring from this is that possibility of that normalcy. It's
Speaker 1: really profound and important, I think, because it gets back
Speaker 1: to what we were talking about about, you know, the blind
Speaker 1: person just being a person, right. I think when you
Speaker 1: overemphasize and you say like the blind person can only
Speaker 1: ever be a blind person, it strips them of that
Speaker 1: ability to just be a dad, or just be a pedestrian,
Speaker 1: or be a writer or whatever it is that they
Speaker 1: want to be. And so in that moment, that revelation
Speaker 1: for me was a really early and important tapping into
Speaker 1: that possibility of that normalcy. And I think there's a
Speaker 1: way in which, like when I talk about joy or
Speaker 1: I talk about like the really like joyful possibilities of
Speaker 1: living life as a blind person, it's actually in that normalcy.
Speaker 1: It's not about some like turbocharged like braille. It is amazing,
Speaker 1: you know, it's really just like the joy that everyone
Speaker 1: can feel. Yeah, and you can only access it through
Speaker 1: a sort of like getting in touch and being grounded
Speaker 1: in that basic experience of presence and joy.
Speaker 3: So listener and thinking about all that and the other
Speaker 3: great wisdom from today's episode. If you're going to isolate
Speaker 3: just one top insight that you're taking away, what would
Speaker 3: it be? Not your top ten, not the top five?
Speaker 1: Just one?
Speaker 3: What is it? Think about it? Got it now? I
Speaker 3: ask you? What it's one tiny, tiny, tiny, tiny little
Speaker 3: thing you can do today to put it in practice,
Speaker 3: or maybe just take a baby step towards it. Remember,
Speaker 3: little by little, a little becomes a lot. Profound change
Speaker 3: happens as a result of aggregated tiny actions, not massive
Speaker 3: heroic effort. If you're not already on our Good Wolf
Speaker 3: Reminder SMS list, I'd highly recommend it as a tool
Speaker 3: you can leverage to remind you to take those vital
Speaker 3: baby steps forward. You can get on there at oneufeed
Speaker 3: dot net slash SMS. It's totally free, and once you're
Speaker 3: on there, I'll send you a couple text messages a
Speaker 3: week with little reminders and nudges. Here's what I recently
Speaker 3: shared to give you an idea of the type of
Speaker 3: stuff I send. Keep practicing even if it seems hopeless.
Speaker 3: Don't strive for perfection, aim for consistency, and no matter what,
Speaker 3: keep showing up for yourself. That was a great gem
Speaker 3: from recent guests Light Watkins and if you're on the
Speaker 3: fence about joining, remember it's totally free and easy to unsubscribe.
Speaker 3: If you want to get in, I'd love to have
Speaker 3: you there. Just go to one feed, dot net, slash
Speaker 3: sms all right back to it. You also talk about,
Speaker 3: you know, there's some other stories relating to OSCAR around
Speaker 3: looking at menus and that, and it ties into this
Speaker 3: idea that you talk about primarily as you're talking about
Speaker 3: assistive technologies, right, and you say independence is essential for everyone, right,
Speaker 3: and especially for disabled people. But there's irreplaceable value and
Speaker 3: interdependence too, the feeling of shared experience that comes when
Speaker 3: two people interact in exchange. And you're sort of saying like,
Speaker 3: I could use the screen reader in this situation, I
Speaker 3: could also ask my son to read it to me, right,
Speaker 3: So say more about the sort of balancing those two things.
Speaker 1: Yeah, yeah, I mean, if you look at technology for
Speaker 1: blind people or probably disability more broadly, maybe even anybody,
Speaker 1: technology is about independence, right, It's like you can do
Speaker 1: it yourself, because I think there's this idea that the
Speaker 1: technology is not a human, Like it's one thing if
Speaker 1: I have to ask Lily to read me every book
Speaker 1: I want to read. It's another thing if I can
Speaker 1: just like hit alt a on my computer and the
Speaker 1: computer reads it to me. That's real independence. But disabled
Speaker 1: thinkers have put forward this idea of interdependence as a
Speaker 1: really important aspect of the disabled experience, and I have
Speaker 1: it with Oscar all the time. Like your example that
Speaker 1: you bring up with the menu, Like, yeah, I could
Speaker 1: have read the menu independently if I had like taken
Speaker 1: a picture with my phone or used my screen reader.
Speaker 1: But then the experience of saying to him, like, you know,
Speaker 1: I actually asked Lily, I was like, what does it
Speaker 1: say on the menus? They were like up behind the
Speaker 1: register and I just couldn't see him, and she started
Speaker 1: telling me, and he was like, let me do it,
Speaker 1: and he kind of like got excited about doing it.
Speaker 1: And then we had this like really fun exchange where
Speaker 1: we were like riffing on nachos and like I was
Speaker 1: helping him figure out what he wanted to get, but
Speaker 1: like he was also taking pleasure and helping me. And
Speaker 1: that experience was like the reason we went to the restaurant.
Speaker 1: It's not like I would have been better off with
Speaker 1: that independence. So it's not It's not like I'm saying
Speaker 1: like this technology isn't useful, but rather that I think
Speaker 1: it gets back to this sort of sense of normalcy,
Speaker 1: like having interactions with people, even if the people are
Speaker 1: helping you, creates this possibilities for like a joyful, normal experience.
Speaker 1: And I think it kind of emphasizes the way that
Speaker 1: it goes in both directions. So it's not dependence either, right, Like,
Speaker 1: so much of the way that we think about disability
Speaker 1: is like, ah, this person has these special needs and
Speaker 1: I'm going to help them then they can get where
Speaker 1: they need to go. But if you're really compassionate, I
Speaker 1: think every exchange has this two wayness to it. There's
Speaker 1: a writer Mia Mingus who has this idea of access
Speaker 1: intimacy that I think is really important. You know, access
Speaker 1: being like you know, helping a blind person access a menu,
Speaker 1: or you know, a person with a mobility disability access
Speaker 1: a building, whatever it is. There's an intimacy that's possible
Speaker 1: there where it's not just like a compliance thing, but
Speaker 1: it's like recognizing it gets back to the humanity question,
Speaker 1: like recognizing that the person who you're helping get access
Speaker 1: to whatever it is is a human and you're a human,
Speaker 1: and therefore there's going to be an interchange in exchange somehow,
Speaker 1: and like being attentive to that interchange, and that you
Speaker 1: might learn something from the disabled person and they're getting
Speaker 1: something from you. I think it's just a really important
Speaker 1: thing to bear in mind, to get away from that
Speaker 1: feeling of like a top down I'm going to help you,
Speaker 1: or the feeling of helplessness like I need this person
Speaker 1: to survive it, but rather like we're all in relation
Speaker 1: with each other and this is just another way that
Speaker 1: we're relating to each other.
Speaker 3: Well, I think that's a beautiful place for us to
Speaker 3: wrap up on that idea of yet we are all
Speaker 3: in relation and we all need each other. So, Andrew,
Speaker 3: thank you so much for coming on. I have really
Speaker 3: enjoyed this conversation. I enjoyed the book, and I just
Speaker 3: love all the themes that it kind of brings up
Speaker 3: in the really nuanced way that you handle them.
Speaker 1: Oh, thank you so much. This is really fun for
Speaker 1: me too. I love this conversation.
Speaker 3: Thank you.
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