What's it like to slowly go blind?

28:04Yeah. I feel like I'm being convinced into it. I don't think I've posted an image on the internet a long time, but I would probably do it now. 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 I 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 you think? Yeah, you described yourself as faintly chubby. And I was like, I don't think this man's really chubby, but it's interesting to me.

28:37I 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 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.

29:13We 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 of 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?

29:48Or 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.

30:21you um you describe 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. Would you want to characterize it the way you characterize 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.

31:03And, you know, it was 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 all 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 the claustrophobic terror, where he has a whole long thing about how he apologizes for it, but he's still acutely curious about what women look like when he meets them. And then she put the book down at that point and was like, not cool.

31:41And then I was sort of like, why not cool? Isn't that allowed? Yeah. I just found it. It was 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 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.

32:16And I'm not saying that the male gage should be celebrated, but 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, yeah, several people told me not to write about that. I think it was originally my book proposal and they were like, this is great, but don't go there. And I just kept on coming back to it, not so much because I'm obsessed with butts or whatever, but more just because it got at this contradictory but very present feeling that I associate with the experience of visual loss, which is people have this very reductive sense of sunsets and your child's face, but the loss is so much greater than that.

33:02So I think what I found from thinking about it is, 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 the reason why I pursued the question is in part to make space for that reality. And going back to my own personal journey, it doesn't feel existential for me to have access to visual descriptions of butts, but it did feel existential for me to feel like I could still be a sexual being and participate in desire in that way.

34:16While we're speculating about the trajectory of the internet and the blind experience on it, auto-generated description is advancing. And so right now, like when I use my screen reader and I'm on Facebook and I look at a photo, it will like tell me that a picture of my sister may contain image of fruit 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, and you already have seen it. Actually, there's like a 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.

34:58And so if you answer it, then you're you've got access to their phone's video feed and they could 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'll be like - Yeah, I actually, I installed that app on my phone. I've read about it in your book. And I was like, oh, that 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.

35:32And it's so many people helping, almost like more, like so many people are curious about trying to help. like they actually need more people who need help right now maybe which i was like that's great that says like something nice about the world maybe totally you know 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 all text.

36:08But then also, I think we're always going to need people like the people who sign up for Be My Eyes 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 invite everyone who's not blind to think about their blindness.

36:43It was just more fractious than I would have pictured. I was wondering if you can just talk a little bit about those splits, where they break down. Yeah. It's a really complicated question. I think in addition to what you pointed out, 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.

37:25There'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 except for the cane in my hand. Like, why do you have to say truck ahead of you? 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 was 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.

37:54You know? And I think like the average blind person just like, is like a Katamari Damacy 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.

38:46It felt like reading your book, it felt like 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 sighted, 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 were like, no, it's politically useful for people to look at blindness as an affliction. There was a group you described who, and it was recent, they asked people to do a challenge where they blindfolded themselves for five minutes, and there was this argument about, like, well, that's not really the experience of blindness.

39:27Like 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. Um, I know which is supposed to be the right answer and I, 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.

40:00And I 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 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 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 the organization that did that blindfold challenge that you're talking about is the Foundation Fighting Blindness. And it's funny, there was one ass-kicking political activist I talked to who she said, when I hear the Foundation Fighting Blindness, I hear the Foundation Fighting Me.

40:38And there is this contradiction embedded in that idea. Are you fighting blind people? And it's a tricky line for groups like that to walk, I think.

41:02More after some ads.

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43:19Welcome 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 do 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?

43:51Yeah, 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 8am 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 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.

44:26Today, 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.

44:59Like 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 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.

45:30And 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 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 Jernigan, 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.

46:09We 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. Yeah. Thank you.

47:01what was the thing there was something about um 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.

47:39So there's like, that's 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, because of multiple disabilities or because they've just lived super sheltered lives and even the concept of nearside parallel traffic versus nearside perpendicular traffic is tough to wrap their heads around, they might drop them off 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.

48:14And 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 the i wrote the book um 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 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.

48:53You 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 carnal directions, it's the south. OK. And then you keep going.

49:24That's not a corner. That's a driveway. 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.

49:59And, 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 beeline 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.

50:33So 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. He's like, are you okay, man? Like, can I help you? And I was like, no, 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, 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 statement. Exactly. Yeah. I still get full credit, but I made it back. It was amazing. It was an amazing feeling. I can't imagine how good it must have felt.

51:01Oh, yeah. Yeah. Because honestly, my life right now, I've got a couple of degrees of central vision that I can use to watch The Mandalorian, to see that the street is coming up. 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, that'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, 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?

51:42It'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.

52:13Andrew 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 Braitman, 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.

52:49How 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 some help from Armin Bazarian So you want to start a business You might think you need a team of people And fancy tech skills But you don't You just need GoDaddy Arrow.

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54:22I'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 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.

55:06But 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.

55:48Then melodically, the more fluttery, abstract pianos start to drift away and give way to that melodic line from the theme composition.

56:10that'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 uh so tarta relena i guess in a more caucasian um 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 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.

57:15And 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.

57:46I'm sorry.

57:55Da, da tomba d 'un sant.

58:02M 'he repintat l 'espiga i avui nit em crema el ventre. Si ara em veiessis perdries la raó per sempre. Si ara em ballessis perdries la raó per sempre Demà els que tinguin gana deixaré ben satisfets Travessaré la vila amb els cabells al vent Travessaré la vila amb els cabells al vent

58:40Armin, 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 Pinamaneni and is produced by Garrett Graham and Noah John. Theme and original composition by me, Armin Bizarian. Fact-checking by Sean Merchant. Show art by Olly Moss. Our executive producers are Jenna Weiss-Berman and Leah Rees-Dennis. Thank you to the team at Jigsaw.

59:26Our agent is Oren Rosenbaum at UTA. Our social media is by the team at Public Opinion NYC. 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.