What's it like to slowly go blind?

Hi, this is Search Engine.

I'm PJ Vote.

Each week I answer a question I have about the world.

No question too big, no question too small.

This week, I asked someone to explain to me what it's like to slowly become blind.

In the process, I learned a lot about how to survive worry, about how to survive being stuck in a state of not knowing.

All that after some advertisements.

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We changed the name of the show.

What's the show called?

Now it's called Search Engine.

Oh, nice.

I like that title.

It's good, right?

Yeah.

Yeah.

Weekly felt a little noozy and grown up.

Yeah.

More so than we feel.

Like we come out less frequently than the daily, but we're still great.

Yeah, I think that's a good call.

Okay, so let me read this intro.

And if I say anything dumb or wrong, I'm going to trust you to tell me.

Okay.

I read this book recently, which I really loved.

It was called The Country of the Blind.

It's by the writer Andrew Leland.

Leland has a particular disease called retinitis pigmentosa, where the cells of his retina break down over time.

What that means is that since he was a teenager, he's been losing his vision.

Peripheral vision first, losing sight outside in.

So the effect is that his field of vision becomes smaller and smaller over time.

Each week on this show, we try to ask and answer a question, but humans are a mystery to themselves.

I don't think we always know why we're curious about something.

I picked up the book to learn about blindness, what blindness is like right now in our tech-heavy present, how blind people use the internet.

And I liked learning about that.

But I think I was actually secretly more curious just about the emotional experience of blindness, how people accept loss that they didn't choose, how we perform the magic trick of finding a way to accept things that might at first feel unacceptable, and make peace with lives that other people might not understand or regard with pity.

Leland writes that when Americans are polled about what disability they'd like to not have, blindness is consistently pretty high on the charts.

But among blind activists, there's blind pride, the idea of finding not just acceptance, but really embracing blindness as a way of existing in the world.

So this week on Search Engine, we're going to talk about both things.

The mechanics of blindness right now, blind internet podcasts, the surprising schisms in blind activist circles, but also just the human experience of losing something slowly and making as much peace with it as you can.

Andrew Leland, welcome to Search Engine.

Thank you, PJ.

That was lovely.

I really did.

I really enjoyed the book.

One of the things I actually wanted to ask you is like, I have a theory about why you may have written it.

I would like to know why you wrote it, it, and then I'll tell you what my theory was and if I was close.

I think I've never actually articulated why I wrote it, although surely I know.

I think it I wrote it because

I was going through this experience and

I increasingly had the feeling that my ignorance about blindness was

making my life worse and was making my future as a blind person worse.

And I think most of us can get along pretty well being ignorant about blindness or disability.

But as I began to experience the reality of it more, all the fears that so many people have about it were just like completely overwhelming me.

And I had this inkling, it began as an inkling and it grew into, you know, the book, that those fears were not just unfortunate, but like actually their premises were wrong.

And that the thing that I was afraid of could be grappled with so much more effectively if I kind of understood what it was.

And so I wrote it, you know, fundamentally as a kind of survival mechanism, but I think also like as a, as a way of following a hunch that I had that blindness wasn't as like terminally scary as it seemed to be.

My instinct was

that we might have like some similar makeup where I'm both an avoidant person, but also a curious person.

And so if I can find a way to like wonder about the intellectual history of some problem I don't want to think about, then I can start thinking about the problem.

And I felt like maybe some of that was happening in the book a little bit.

Definitely.

You know, and I feel like one thing that I ran up against is the reaction from some other people where they kind of accused me of doing exactly what you just said, but as though that were a bad thing.

Like, oh, you're hiding from like the terrible reality of what you're going through by intellectualizing it.

And like, sure, it's cool that you're discovering all these interesting ideas about interpretation of visual images and, you know, like the entwined histories of the internet and blindness and so on.

But like, really, aren't you just super scared?

And like, those things are all a distraction.

But I think what you're saying is very much in line with how I felt, which is that those two activities, like the researching of these histories and the emotional engagement with it are actually really tightly lashed together.

Yeah, I think some people feel with their brains.

And I think for people that don't feel with their brains, they're confused by those people and they think they're not feeling at all.

That's a really good way to put it.

Yeah.

Okay, so just to do sort of the origin story of it all, like, can you just tell me, like, how old were you?

Where were you?

Like, when did you, when did you first discover that there was something unusual about your just actual site?

I was a teenager, and my mom and I had moved to New Mexico when I was in fifth grade.

And when I started to hit middle school, I started to hang out with some bad kids, you know, and we were there, like the main activity became going up onto the hillsides of Santa Fe, New Mexico, where we were living and smoking pot and, you know, perhaps doing other drugs.

And it was around that time when I suddenly, you know, went from like elementary school kid who's like, you know, the darkest experience I had was like going to the movies with my mom.

And so suddenly when you say darkest experience, you don't mean emotionally darkest experience.

You mean literally how much light is it?

The lowest light situation.

Yeah.

I mean, obviously, like everyone experiences dark all the time, but like, it's a very different experience, like being in your room when it's dark and being like on an unfamiliar hillside, right?

Yeah.

And then, yeah, so suddenly I was like hanging with these older kids and trying to keep up, you know, in every sense and just really confounded by how much more difficult it seemed to be for me to follow them up the hill, you know, to go sit on the hilltop and smoke weed.

But like, you know, then it just like extended to the movies where I would just be like, why on earth?

Does anyone ever go to the bathroom in the middle of a movie?

Like, it just seems like the worst thing you could ever do to yourself.

But then I would look around and people would just be like cheerfully coming back with like a second soda.

And I'd be like, huh, this seems harder for me.

But it was like, my mom, you know, I don't want to like make my mom sound bad by saying this, but like she was also like,

it's dark at night, man.

Like, what are you talking about?

You know, of course you have trouble seeing at night.

Didn't really make a big impact in my life, you know, except for in these isolated incidents.

But then as I got older, like around 18, 19, it just like wasn't going away and it was getting somewhat worse.

Not during the day at all, all, but still at night, it was like, it went from like, I can drive at night, but like, it's not great when there's not that many street lights to like, I wonder if I should be driving at night.

And so then I had sort of self-diagnosed myself around then.

My, my dad had bought me a modem and on like, you know, Lycos web crawler or something, like Googled night blindness.

And, and I don't think there's a lot of causes of night blindness, like sudden night blindness as a teenager other than retinitis pigmentosa or RP.

And then when I finally did go to a retinal specialist when I was 19 years old and they told me it was RP, it was intense, but it was also kind of like a relief.

Because just having a diagnosis, putting a name around it, there's like a little bit of relief and just like, okay, well, I know what's going on.

Yeah.

And, you know, not even like, I know I have a disease and I have a name for it, but more like, I'm not.

fooling myself here.

Because it was like, it was really like a, like, I don't know, like, was I gaslighting myself or was the the disease gaslighting?

I just, I felt like I was going crazy a little bit.

Like, what is wrong with my eyes?

And why is nobody else recognizing this?

Because it's a rare thing.

And so not many people have heard about it.

And it was funny when I was researching the disease to write this book, there was a funny line in like a medical journal that was just sort of like the dictionary of rare eye diseases.

And it was like, the RP is often first detected in the teenage at evening parties.

And I was like, there I am in the medical book, like teenage parties.

yes

and how did you feel that

well

along with the sort of relief of a diagnosis there also came with it the prognosis from the doctor where he in very frank and direct terms said you'll be blind by middle age kind of very matter of factly and So that was the thing to contend with.

And, you know, people don't believe me when I say like it didn't have this like devastating impact on me when I learned that.

Partially maybe because I had like read it on Lycos, you know, like for the last couple years.

But also I think it just felt like learning that I was mortal, you know, like going blind in middle age when you're 20 or 19, like it sounded scary, but it was also like, what even earth am I going to be on in 2023?

You know, like it didn't even make sense to me.

So I was just kind of like, my mom seems sad.

Let's move on.

You know, I got, I got a college radio show to attend to here.

Like, I got cigarettes to smoke.

Like, let's get out of here.

So it was sort of like the thing that was saving your mental health at the time was just the feeling of like,

I'm young.

I'm going to be young forever.

The things that happen to some like impossibly old version of me don't matter to me

right now.

Yeah.

And so were you able you were for a while, it was just sort of like.

You're a person who like has a slightly more difficult time when you're high in the woods and you're a person who drinks a little bit less soda at the movies, but like it was not a huge deal.

Exactly.

Yeah.

Yeah.

And, you know, through my 20s, that was true.

Like, you know, I would go out with friends and I just, I, you know, in my sort of like deadpan way, I would just say to people who I was meeting for the first time in a dark bar, like, I have severe night blindness.

And they would be like, is that a joke?

Like, what does that mean?

And then my, my friends, I noticed started to be like, no, no, no, he's serious.

Like, he can't really see it in the dark.

But then it became like, it was like a

quirky thing about me, you know, like it didn't really, it didn't like stop me from getting a job or making friends or having relationships.

It was just like, I have severe night blindness.

You know, know, I just, I said that phrase probably like 10,000 times during that decade.

And then it started to bleed into the day a little bit.

But even then,

it like, you know, in my office, I was, I worked in this open plane office and we would all wear headphones to sort of like distract ourselves from the chaos around us.

And, you know, somebody would come up to my desk and I would be facing my computer and they would be standing next to me.

And then I would like suddenly hear one of my coworkers being like, he really can't see you.

Like, you got to tap him on the shoulder.

You know, and that was like, I remember thinking like, oh, interesting.

Like, this is a well-lit room and I still, you know, because the way the disease works is it's your peripheral vision gradually contracts until you have just a very, very narrow tunnel vision.

So there was a period in my life where it started to intrude, but that really wasn't until my early 30s, I would say.

It's such a weird,

if you don't mind my saying so, like,

I think a lot about loss and how people accept different kinds of loss.

And there's just something so strange about like,

I don't want to exaggerate it, but but it's almost like a glacial pace of this thing happening.

And like,

you're like, you just really like, you know, losing something by very, very subtle degrees, even if those degrees add up to something larger.

Absolutely.

Yeah.

I mean, I've had, you know, writing the book, I got to talk to dozens and dozens of blind people and more than one totally blind person who lost their vision.

in an accident or like, you know, very suddenly said to me, I think what you're going through is harder.

And I would always just like not believe them because it's like what you went through, you know, and often those people are like people who had like a gunshot wound or, you know, some intense trauma.

But the reality is that as traumatic as that experience is, they kind of get to go through it, you know, and they're like, their life is completely turned upside down and they have to reinvent how they do so much of their daily activities, but then they kind of go through that crucible and they're on the other side.

And whereas with me, it's like, huh.

I think like I've noticed over the course of the last six months that reading has gotten significantly harder, but I can still do it with magnification, but I'm getting slower.

Like, do I switch to text to speech and listen or not?

You know, and like all those like imperceptible glacial transitions are confounding.

And I think, I don't want to say that it's harder than going blind suddenly, but it's definitely its own particular set of challenges.

Well, it also seems challenging because it's like, and maybe I'm just restating what you said, but like, I think anything that's difficult.

At least there's this part where you're like, okay, well, that sucked.

And it's in the past.

And now I'm in the present.

And the present is different because of the past, but it's the present.

But, like, if the metaphor is like turning a page, just like imagine a page turning

very slowly.

You're just like, what do I do?

Like, what do I do?

Did you have a moment?

Like you described, you said that when you were a teenager, it's like, this is a thing that's going to happen very far away from now.

At some point, presumably, it became like much more immediate.

Like, did you have a moment of just like,

ah, like just like existential, like, screaming, or did you not have that?

I think

I've had it several times, and I know I'm going to continue to have it.

I mean, it's the transition points, and it's hard to say, like, it's such a gradual and steady thing that, like, it's a little bit like,

I don't know, if you think about like sinking into quicksand, it's like really scary when your ankle's in there, and you might freak out then, and then you might calm down and just like coolly watch your leg go down, and then suddenly when it hits your hip, you're like, not my hip, fuck my hip, you know, and like, but it's like kind of arbitrary, like when you freak out, and I feel like that's been my experience where there's just like various body parts are disappearing, and I'm just like, no, not, not that.

But like one recent one,

I don't know, the one that like stands out in my mind the most of like the last couple years,

it like wasn't even what you would expect, like milestone-wise.

Like it wasn't like where I was like, ah, yes, I can no longer see this object.

It was like I was reading this memoir by John Hall, who had lost his vision, and I had a cold.

And so my nose was really stuffed up and my ears were kind of stuffed up.

And I had like tinnitus.

And like, we turned off the lights.

And this is, that was back when I was still reading visually because I remember I was reading just like a good old-fashioned print book.

So, this must have been like six or seven years ago.

But, like, yeah, like the lights went out, and I had just been reading this book, which was like very honest about that terror that you're describing.

And then I kind of like got infected with it.

And I just like, I felt like I couldn't breathe.

Like, it was just like my ears were stopped up.

My eyes were, I couldn't see anything in the dark.

And like, I, it was like, it was a very claustrophobic feeling.

And I think, you know, I have flashes of that where I'm like, blindness will be that that kind of like claustrophobic, like buried alive feeling.

How do you talk to yourself in the moments where you feel the like screaming dread?

Like, what do you say to get

either to get back to okay or just to pass the time until you're okay?

Um,

I don't know how to say this without sounding like a hippie, uh, but

it's

just to like

return to the present moment and like follow my breath and kind of like meditate.

and the power of that is extremely helpful in situations like that because basically every day you're practicing like something unpleasant is happening to your mind and like you remind yourself that like there's like a place you can return to that has nothing to do with any of those other feelings It's so funny.

I don't know how many more years of my life I'm going to do where I ask people how they do difficult things and they say meditation.

I'm like, cool, cool, cool.

I'll go try to find another answer, I guess.

Like, I really avoid it.

And it really, really, everyone I know, it's like the two categories of people are like, I haven't tried it.

It's a little bit too challenging and it's immensely helpful.

I'm like, yeah, okay.

Well, I'll just wait until someone gives me another answer.

Hopefully it's like a medication.

It's embarrassing to say for me because I feel like it's a little bit like being like, you know what the secret is, friend?

It's goji berries.

Like you just got to buy, there's a special place you get them because you got to get the right varietal, but take the goji berries.

And like it's just like, it's just like a little too specific.

But it really does help.

It does.

It's like,

you know, and I think you can cut through the like whatever new age woo-woo stigma about it.

Cause like if you just look at it like functionally,

it's a practice, just like lifting weights or whatever, but the practice is like settling the mind.

And if that's what your goal is, like it's like a pretty well researched and carved out practice of like, how can you just let your mind settle?

And so you practice that every day, and then eventually you get better at doing it.

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Welcome back to the show.

You wrote this sentence that I really liked, and it made me think about blindness slightly differently.

You said that the primary problem of blindness is access to information, which I just like hadn't thought of it that way.

And it also made me think because I'm a person who spends my entire professional, most of my recreational life, just trying to access information.

But you also talk about

your story of losing your sight and just the rise of home internet kind of happened at the same time.

And I guess I just want to ask you if you can talk about like how those things have interacted, like what it has meant to

how you use the internet and how other blind people use the internet.

Yeah.

So, I mean, a big thing in blind culture right now has to do with audio description and basically making that unimaginably vast ocean of information that is not accessible accessible to blind people.

And it's kind of like, it really does boggle the mind when you think about what we're talking about here that isn't accessible, like basically the entire visible world right like the entire visual world so

there's a podcast called talk description to me

this is talk description to me where the visuals of current events and the world around us get hashed out in description-rich conversations

and each episode they pick something that blind people wouldn't have access to and it really runs the gamut and there's also kind of an interesting divide here in blind culture more broadly between people who are born blind and people who go go blind later in life.

Because people who are born blind in particular, there are these like major visual touchstones of world culture that not only have they not seen, but like probably nobody has described it to them unless they ask for it, right?

So like Day of the Dead, like sure I've heard of Day of the Dead, but like having like grown up in the U.S., like Day of the Dead,

you immediately see like the skeleton sculptures and like a vote of candle or whatever.

But like for somebody who's born blind, like Day of the Dead might just be a phrase and you just don't have any of those associations because they're all visual.

And so, this podcast is like, okay, this week we're talking about Day of the Dead.

Like, what are the main visual components of it?

Like, well, okay, like, so I'm seeing

skeletons and top hats, smoking cigars, Katrinas, and beautiful gowns.

You know, and they just go through the whole thing.

But then it's like they do that.

And then the next week, it'll be like the president of Ukraine, what he's doing and what he looks like.

He's a fairly small, fit white man, about five foot seven.

He has dark hair, often cut quite short.

And then like the moon, there's like an episode about the moon.

And is the episode just what does the moon look like?

Or is it like the moon in like memes?

Oh, well, so there's a different podcast called Say My Meme that partic is explicitly devoted to memes, where they just are like, okay, so this one is SpongeBob and he's kind of like puffing out his cheeks.

And he's doing, he's clearly doing this like long, slow exhale.

You know, that like exhale you do when you're like really milking the moment.

And then like in the white meme font, it says, me when I put the fitted sheet on the bed by myself.

And they just kind of like go through and like explaining the joke.

And there's a whole other sort of army of blind people who are really passionate advocates for alt text, which is the practice of if you post an image on the internet, you add a tag that's called alt that basically is an image description.

So if you're going to post that meme on Twitter, you should take the extra second to Twitter has it built in to write in the alt text and basically write in that quick description.

I've seen that, and I've always wondered when I see people doing it, having like a brain that argues with everything.

The two things I always wonder is: I'm like, is this useful?

Like, are people using it?

And then also sometimes I'll read the alt text itself, and I'll be like, I kind of quarrel with this description of this image.

Like,

like, I'll just feel like I'm not sure.

I don't know.

I've seen like selfies of people where they characterize how they're dressed.

Not like in terms of is it good or bad, but I wouldn't call that that color.

And it just makes me think about like

how,

I mean, I'm curious how it is used and if it is useful, but it just makes me think about the subjectiveness of description.

Yeah, absolutely.

I mean, I think there's two things there.

One is at a very basic level, even if the description is imperfect, there is such a feeling of exclusion that comes when you're surfing the internet and there's like 823 comments on an image and all it says is like 4.jpg and you're just like

i got nothing so even if it's like susie in a funky dress at least that gets you some

amount of the way there right

yeah it's i used to i in college i dated someone who her family their first language is not english and the the definitive thing would be being at the dinner table and they'd say something and everybody would laugh and even if she could just lean over and be like funny

it was just like thank you i'm still here I'm not like participating exactly the same, but I'm still here.

Yeah, totally.

So I think, I think that's exactly right.

It's just like, we, we care about you a tiny bit and like you can be in on it even if, you know, and then it also gives the blind person the chance to say like, Susie in a funky dress, like, got it.

I don't care.

I'm moving on.

Or like, oh, actually, like, I'm writing a thesis on funky dresses.

I'm going to like pursue this now, you know?

And so it's kind of like, it just like throws the ball back into the blind person's cord a little bit.

It's like, you know, it's agency and it's inclusion.

Yeah.

I feel like I'm being convinced into it.

i have i don't think i've posted an image on the internet in a long time but where i would probably do it now um

the other place i saw it was in your book you're at the back of your book there's a there's like an author photo and then you've done alt text for your author photo and i was reading your alt text and it was like too personal to say but like you like described yourself hold on i have it here

is it the faintly chubby thing that

yeah you described yourself as faintly chubby and i was like i don't think this man's faintly chubby but it's interesting to me I was like, had I not read the alt text,

he's telling me something about himself and like both how you see yourself and a level of like honesty that you want to communicate about how you see yourself.

And I was like, that was just, it's an interesting choice that would not have existed without that alt text.

I entirely, entirely agree.

And that's not a coincidence.

You know, I think I was thinking about that.

And I think there was a really great project called Alt Text as Poetry, where a couple of artists

basically just like make work in support of thinking about alt text not as like a compliance-based approach where you're like if you think about like a restaurant that's like, we don't want to get sued, we got to have a wheelchair ramp.

So like build the damn wheelchair ramp.

And it's just this like ugly concrete thing.

And that's compliance, right?

Or like a website, like, damn it, we have to do alt text for our website.

So we're just going to like get an intern to write alt text for everything.

And often that alt text will be very dry and boring.

But you know, it's kind of exciting to think about like the creative possibilities of it, like all these interesting interpretive things that you learn.

And I think that's like a general principle that the more I've kind of thought about and engaged with disability culture is a really important and powerful and real dynamic where, like, the thing that you think is

just like the crutch, right, or the wheelchair ramp actually can like give rise to like interesting, exciting incidents, like the fact that I conceive of myself as faintly chubby, maybe not the most exciting insight, but like, I think there's examples of that all over the place.

You um you described like kind of a fight you had with your wife in your book about you expressed to her that one of the things you were sort of

mourning was being able to see the butts of strange women.

I don't know if exactly that's how I put it to her, but that was how I read it.

Do you want to characterize it the way you characterized it?

I mean, it's kind of like a joke that I made to a lot of people that my wife was present for, where people would just be like, every once in a while, like once a year, somebody would be like, what are you going to miss the most when you lose your vision?

And I just found that question so obnoxious that I would be like,

you know, like that kind of denim that stretches like yoga pants, like people's like butts when they're wearing those pants.

And, you know, it's kind of like just like being deliberately provocative, but also, you know, if I'm like being super honest with myself, like, why, why is it wrong for me to admit that like the pleasure that one takes in looking at attractive bodies is like included, right?

Like there's a whole giant list, but that was included.

And then Lily, my wife, was reading

that book that I mentioned by John Hall, the one that gave me like the claustrophobic terror, where he has the whole long thing about like, how he apologizes for it, but like he's still acutely curious about like what women look like when he meets them.

And then she had sort of, she like put the book down at that point and was like, not cool.

And then I was sort of like, why not cool?

Like, isn't that allowed?

Yeah, I just found it, it was like a moment where I felt

the feeling that I think I most look for these days, which is like, I have no idea how to feel about that conversation.

Like, I don't, I feel like her being like, the fact that this man is asking me to sympathize with his inability to

look at women in a way that I'd prefer not to be looked at, I don't want to sympathize with.

And him saying like, I totally understand this is an inappropriate feeling for a lot of people, but like it's something everybody else gets to do.

And it makes me sad that I don't get to do it.

And I'm not saying like that the male gauge should be celebrated, but like it's a part of the human experience and I miss it.

I was like, I just felt like,

man, what a tricky, honest moment for everyone.

And I liked it because of that.

Thank you.

I mean, I, yeah, like several people told me not to write about that.

You know, like, I think it was originally my book proposal and they were like, this is great, but don't go there.

And I just like, I kept on coming back to it, not so much because I'm like obsessed with butts or whatever, but more just because like it got at this contradictory, but like very present

feeling that I associate with the experience of vision loss, which is like people have this very reductive sense of like sunsets and your child's face, but like the loss is so much greater than that.

So like, I think what I found from thinking about it is like, of course, the male gaze doesn't get extinguished with blindness.

And there's like all these stories of like totally

male gazey blind guys who are just like finding other ways.

Like you can still sexually harass people and you can still like have, you know, the positive side is like you can still appreciate the beauty of your partner and you can still like date and evaluate your sexual partners in the way that everybody does.

And I think, I think the reason why I pursue the question is in part to like

make space for that reality, you know, and you know, going back to like my own personal journey, like there, it doesn't feel like existential for me to like have access to visual descriptions of butts, but like it did feel existential for me to like, you know, feel like I could still be a sexual being and like, like, participate in desire in that way.

While we're speculating about the trajectory of the internet and the blind experience on it, auto-generated description is

advancing.

And so, right now, when I use my screen reader and I'm on Facebook and I look at a photo, it will tell me that a picture of my sister may contain the image of fruit or or something.

It's like ridiculous and doesn't work that well.

But soon, I think you're going to see like with the with the advance of AI, like a and you already have seen it actually.

There's like an app for blind people called Be My Eyes that basically like it connects you.

So like if you have the app on your phone, your phone will suddenly ring and it'll be like, oh, blind person needs help looking at something.

And so if you answer it, then you're, you've got access to their phone's video feed and they can be like, does my shirt match my pants?

Or like, what does this brownie recipe say?

And they have like a, just like in the past month or two, like a GPT related rollout where there's like auto AI does that instead of you.

So

it's interesting.

Yeah, I actually, I installed that app on my phone.

I read about it in your book.

And I was like, it seems like an interesting experience to have.

The first thing I noticed that made me.

happy is they say when you log in, they say like how many blind people are using it and how many helpers are using it.

And it's so many people helping almost like more, like so many people are curious about trying to help.

Like they actually, I think, need more people who need to help, right?

Interesting.

Maybe.

Which I was like, that's great.

That says like something nice about the world, maybe.

Totally.

You know, and this is like, there's like a sort of bigger philosophical idea that we could touch on here too.

But like, I think it's good to have both.

Like, I think it's going to be really useful to have an AI that can like reliably describe an image for you, even if it's just like a bare bones, like this is a picture of a bunny rabbit.

And kind of like covering that like huge swath of the internet that even with good intentions and good publicity, like people will not write alt text.

But then also I think we're always going to need people like the people who sign up for BYIs and are like

taking that extra step to make things accessible.

One of the things you write about that I think this sort of touches on and I wanted to ask you about, I had not understood that

sort of the history of

blind activism, disability activism, that there's just been very different ideas about like how blind people should think about blindness, how blind people should think about their agency in the world, how blind people should like invite everyone who's not blind to think about their blindness.

It was just more fractious than I would have pictured.

I was wondering if you can just like talk a little bit about those splits, like where they break down.

Yeah.

It's a really complicated question.

I mean, I think like in addition to what you pointed out, like the problem of blindness being access to information, I think there's another kind of fundamental problem of blindness, and that has to do with independence.

It might extend to disability more broadly, but in terms of blindness,

on the one hand, like my experience, like

what's changed about me since I've lost the sight that I have, like

I feel like exactly the same person that I've always been.

There's nothing different about me.

And I resent it when I'm walking down the street and there's a guy who's like, truck in front of you.

You know, I'm just like, I am

smart, capable dude walking down the street.

Like nothing about me is signaling lost lost except for the cane in my hand.

Like, why do you have to say truck ahead of you?

And he just, he was trying to be nice.

He didn't want me to like slam into the truck.

Fine.

But like, it just accumulates over the day.

Right.

And there is just like a constant buildup of like, you're walking down Main Street.

And I'm like, yeah, I live here.

I know I'm on Main Street.

You know, and I think like the average blind person just like is like a catamare de masi ball like rolling over.

instance after instance after instance of that sort of like condescending paternalistic attitude.

For me, I've had it easy because I only really like came out as blind recently, you know, but if you grow up blind, it's not only like an annoying thing that people say to you on the street, but it's like baked into how you're educated.

And so

I think different blind people have different approaches to that problem.

It felt like reading your book,

within the activism community, there was more division than I would have imagined.

There were people who were like the militant ass kickers who were like, blindness is a difference, but it's not worse than being cited, and we don't want anybody's sympathy.

And I felt like your allegiance was more with those people.

But then there were also people who who were like, no, it's politically useful for people to look at blindness as like

an affliction.

Like there was a group you described who like, and it was recent, they like asked people to do a challenge where they like blindfolded themselves for five minutes.

And there was this argument about like,

well, that's not really the experience of blindness.

Like the experience of blindness is not that you suddenly lose your sight and are helpless.

Like the experience of blindness is much more complicated, both in terms of like how much sight people have and their ability to navigate it.

I know which is supposed to be the right answer.

And I get why it is, but I also felt sympathy because I felt like probably, at least if I lost my sight, I'd probably feel both ways.

Like I'd probably feel both like, yeah, this sucks and I hate it and it's unfair and I'm mad.

And I also would probably feel like, I don't want anyone to condescend to me and I can do anything that anybody else can do.

And like, I'd probably feel both of those things a lot of times during the day.

I can tell you that I feel both of those things.

And, you know, I think my sympathies are with the ass kickers, but I've found that it's important for me to not deny the parts of myself that, you know, would like for there to be a cure for RP.

And it's hard to hold both of those ideas at the same time because they often contradict each other.

And I get, and I, that the organization that did that blindfold challenge that you're talking about is the foundation fighting blindness.

And it's funny, there was like one ass-kicking political activist I talked to who she said, like, when I hear the foundation fighting blindness, I hear the foundation fighting me.

You know, and there is this sort of contradiction embedded in that idea: like, are you fighting blind people?

And it's a tricky line for the for groups like that to walk, I think.

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Welcome back to the show.

You wrote about it a bit, but you described this experience of going to a training center I found very interesting.

It was like a school where people who are going blind can experience what it's like to be fully without sight.

And they teach you to all sorts of things.

Like there's a wood shop there i was interested because when you talk about the different approaches to how to think about blindness it felt like this training center had been set up by the more militant people in terms of like truly how self-sufficient someone should be can you just talk about what that place is like a little bit yeah yeah so it's an nfb run center and there's three of them around the country and the rule is you have to wear sleep shades unless you get a note from your doctor that says you have no light perception everybody wears sleep shades from eight to four every day

and it's set up kind of like a school.

Like at 8 a.m., there's morning meeting.

And then like, you know, if you're in group one, you might go to braille class.

Then there's a kitchen in there where people learn how to cook.

And, and then there's travel class.

And all the entire staff is blind.

All the travel instructors are blind.

So you're out there with like two or three blind people under sleep shades and a blind guy who's like, okay, guys, let's go catch the light rail.

Today we're going to go check out the Union station downtown Denver.

I mean, it's not for everybody.

I think they're not great at dealing with people with multiple disabilities necessarily.

And like blind people

are vulnerable.

Like there is a vulnerability to blindness that I think the NFB in particular is like very eager to reject that idea that there might be any vulnerability.

And so as a result, I think some of their training does a disservice to folks who might like

need more support than they offer.

But I think for like, for a certain kind of person, it's utterly transformative.

And I've seen it.

Like there's people who go there who think their lives are over.

I mean, I was talking to the staff there and they're just like, yeah, like my job is basically like, somebody thinks their life is over.

We get them back on their feet, basically.

I think that's that idea that the instructor said, I think that is like what it's like, I think blindness is, and there's, there's tons of things like this.

Like there are all sorts of like hardships you can have where people would look at you and be like, I wouldn't want that to happen because my life would effectively be over.

Like that is like, I don't want that experience bad enough that I don't want to imagine the other side of it.

And it's funny hearing you talk about it.

It sounds like it's a pain in the ass.

Like it sounds like it's definitely a a pain in the ass.

And like you have to dedicate a lot of time to just like a whole new set of logistics and like,

you know, feelings of exclusion and all the complicated feelings.

But like, it doesn't sound like life is over.

It sounds like a challenge, like a serious challenge.

That's exactly right.

Like there was one of the NFB leaders, one of like the big guys from the 70s, Kenneth Chernigan.

He, he had a line like that.

Like, blindness is a nuisance.

But the point is that like it, you know, and this might be going too far in some cases and like ignoring the kind of grief process, but like fundamentally for him, for the folks at that center, blindness is a nuisance.

We teach you how to like overcome the nuisance.

But yeah, like your life goes on, and life goes on full of joy and all the good things that your life contained previously.

What was the thing?

There was something about driving people far away and having them navigate.

When does that test happen?

What's that test about?

Yeah, so that's like the final test for the travel class.

And it's called the independent drop.

You

wearing your sleep shades, of course, get into a van where there's like one sighted employee who's like the designated driver.

And she drives you around in circles.

And

you'd have no idea where you are.

It's somewhere in Metro Denver.

The center is in Littleton, which is like one of the many little sort of metro Denver cities, and

comes to the designated location, which one of the travel instructors has picked out for you.

So there's like that sort of, there's like difficulty levels, right?

Like if you're a really advanced student, they might drop you off like at the top of a parking garage, like three cities over.

There's some students who really, you know, because of multiple disabilities or because they've just like lived super sheltered lives and like even the concept of like near side parallel traffic versus near side perpendicular traffic is like tough to wrap their heads around, they might drop them off like a few blocks from the center, maybe.

But either way, you have no idea where you are.

They let you out of the car and then you have to make your way back to the center and you're only allowed to ask one person one question.

And you hand in your smartphone and they give you like a flip phone that like basically like if you push the call button twice, that will call the center.

So if you get into a jam, you can do that, but you can't use GPS or anything.

And how do people do it?

I actually did it after I wrote the book.

I did it recently.

And it was like, I had no business doing it because you're supposed to go for nine months, but I kind of of just like wanted to do a test and they were like, I think you can do this.

But everybody does it the same way where

they drop you off almost always on a quiet residential block and then your first job is to find a bus because probably your one question should be for a bus driver who's going to give you the most information.

You can like strike out real bad with a random pedestrian who might just tell you nonsense.

So you listen.

for a busier street and they've taught you, you know, you feel the sun on your face.

So you can start to get oriented and be like, okay, it's eight in the morning.

I can feel the sun like blasting me straight in the face.

So I'm probably facing east, but I hear traffic behind me.

So I'm going to turn around.

Now I'm facing west.

And up, there's a corner.

And I now hear that traffic is actually coming from the left, which now, if I think about cardinal directions, is the south.

Okay.

And then like you keep going.

That's not a corner.

That's a driveway.

You know, like you've learned all these skills, like feeling the different textures with your cane, using audio cues.

And then they teach you how to find a bus stop.

And then you just stand there, hopefully, for a really long time.

And then, you know, there's all kinds of stories where people just like walk.

You know, I think when they give people really challenging ones, it's like, you know, there's four directions you can walk and three of them are going to just send you for miles, you know, and

but eventually you find a bus stop.

Usually, just the way Denver works is you're going to probably take that bus to a light rail station.

And, you know, these folks have been riding Denver's light rail every day for nine months.

So at that point, they're like, they can listen and it's like, oh, this is a southbound B line to Englewood.

Like I'm good now.

Yeah.

Were you able to make it back?

I did, yeah.

I kind of cheated.

I didn't cheat by pulling up my sleep shades, but you know, the travel classes at that place, like you stand on a street corner for like often like 45 minutes at a time, just like deconstructing to the minutest detail the traffic pattern.

You know, like, what do you hear on your left?

Okay, like there's a left turn cycle.

You know, so I was just like standing for a really long time, just trying to like puzzle out my environment.

And a guy kind of rushed up to me and he's like, Oh, you came in, like, can I help you?

And I was like, No, I'm, I'm good.

I'm just looking for a bus stop.

And I sort of knew that, like, that would occasion him being like, Ah, a bus stop, which, of course, he did.

And so, that was helpful.

So, technically, I asked more than one person one question, but and then when I got to No, you made a you made a statement, exactly.

Yeah, I still get full credit, but I made it back.

It was amazing, amazing feeling.

I can't imagine how good it must have felt.

Oh, yeah, yeah, because like, honestly, like my life right now, I've got a couple of degrees of central vision that I can use to like watch The Mandalorian, to like see

that the street is coming up.

You know, you can hear it too.

But I'm just constantly walking around the world thinking, like, oh, God, what's this going to be like when I have less vision?

And that training under sleep shades answers that question.

And I'm like, it's going to be a pain in the ass, but I totally will be able to wander around a city I've never been in, find the restaurant I want to go to, you know, do the things I got to do.

It's smart.

It's like if anxiety always asks the question of like, what's going to happen to me next?

It's like what you're doing is you're answering the question of how am I going to deal with it.

Totally.

And so it's not like you're looking forward to it, but it's like you know you're ready.

Yes.

Yes.

Andrew Leland.

I said when I spoke to him that I knew I had a question for him beyond just what is it like to lose your sight, but I wasn't quite sure what it was.

I didn't really understand what it had been until days after we spoke.

I remembered a different question asked by another guest on Search Engine, Laurel Brightman, who I spoke to about the sadness of monkeys at the zoo.

She told me her own question she most wanted an answer to about the worry in your life that won't go away how when you know that things can turn out poorly how do you get out from underneath that worry that is probably the question i think about more than any question

how do you stop anticipating the bad thing that very well may or in andrew's case certainly will happen someday

there's no perfect answer to that question but Andrew helped me identify at least one good answer.

If your brain can't stop asking questions that are just hurting it, if you can't silence those questions, maybe find another question to ask.

Maybe it's not what's going to happen.

Maybe it's how do I prepare?

Anyway, thanks to Andrew Leland, his book is called The Country of the Blind, a memoir at the end of sight.

It's out now.

Go pick it up.

Andrew also narrates the audiobook, which I recommend.

Stick around.

After a short break, there was sort of a secret code in this episode, and we will explain it to you with with some help from Armin Bazarian.

This episode of Search Engine is brought to you in part by Chili Pad.

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Will my kids sleep tonight?

Will Will I wake up at 3 a.m.

again?

Am I going to wake up hot and sweaty because my partner leaves the heat on?

Those are the thoughts that bounce around my head when I can't sleep too.

And let's face it, sleep slips away when you're too hot, uncomfortable, or caught in a loop of racing thoughts.

But cool sleep helps reset the body and calm the mind.

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It's a bed cooling system that personalizes your sleep environment.

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I'm here digitally in the studio with Armin Bazarian.

Hi, Armin.

Hello, hello.

So Armin does the engineering and the scoring for our show, and he was responsible this week for

we gave you like a kind of insane brief, which was like, can you make a piece of music that starts out blurry and then resolves into clarity?

And so those musical interstitials between the interview, that was your composition.

Yeah, yeah.

I mean,

I love when given the opportunity to do something more conceptual with like a neat through line throughout the episode.

My approach was to create a piece that would become more and more clear over time, but the way in which that piece would get clear would be both sonically and melodically.

So when I say sonically, the piece starts off almost as if we're hearing it through clouds or underwater.

And so the sonic quality of it is very, very unclear.

It's almost like white noise.

But on top of that, there's also a degree of melodic inclarity where it's just like fluttering pianos, kind of, and it creates an ethereal mood, but there isn't something to hold on to.

And so, both of those things are becoming clearer and clearer as the episode goes by.

So, sonically, what was all white, noisy, and underwater kind of grows and becomes more bright.

Then, melodically, the more fluttery, abstract pianos start to drift away and give way to that melodic line from the theme composition.

That's really cool.

Thank you, Armin.

You also have a recommendation this week, right?

Yeah, so I saw a band last night called Tarta Relena.

Wait, Tata Delena?

Tarta.

So T-A-R-T-A.

Uh-huh.

Relena, R-E-L-E-N-A.

So Tarta Relena, I guess, in a more

Caucasian.

And so it's a Catalonian duo, two women, and

they are kind of fusing traditional Catalonian folk music

with like a modern electronic palette, but super tasteful and so reserved.

And like the moments they pick to like go full-on, like hard beats are so thought out.

And these two singers are virtuosic.

Like, and they're just staring at each other and doing these crazy harmonies.

And it's just unbelievable, unbelievable.

And I think they're going to blow up.

Like, it's one of those shows where You can go in not knowing anything about them, not having heard a single thing, and just be completely blown away.

Oh, that's such a good feeling.

Yeah, yeah.

I would say if they're touring in your city, you must go see them because I think the live act is what really, really

sets them apart from maybe just listening to a record.

la tumba du unsan

Mera pintalas pigas ya guinitam que ma alventro.

Siara humba, yes, yes, por driaslora o parsempra.

Siara humba, yes, yes, por drios lora o parsempra.

The mamsca tingingana la sharen satisfits.

Trava serav ilambalsca

Armin, thank you.

Oh, my pleasure, my pleasure.

Do you want to do the credits?

Search Engine is a presentation of Odyssey and Jigsaw Productions.

It was created by PJ Vogt and Sruthi Panimaneni and is produced by Gare Graham and Noah John.

Theme and original composition by me, Armin Bazarian.

Fact-checking by Sean Merchant.

Show art by Ollie Moss.

Our executive producers are Jenna Weiss-Burman and Leah Rhys-Dennis.

Thank you to the team at Jigsaw, Alex Gibney, Richard Pirello, and John Schmidt.

And to the team at Odyssey, J.D.

Crowley, Rob Morandi, Greg Cox, Eric Donnelly, Matt Casey, Casey Clauser, Maura Curran, Josephina Francis, Kurt Courtney, and Hilary Schuff.

Our agent is Oren Rosenbaum at UTA.

Our social media is by the team at PublicOpinionNYC.

You can follow and listen to Search Engine with PJ Vote now for free on the Odyssey app, on Amazon Music, or wherever you get your podcasts.

Thank you for listening.

We'll see you next week.