'Passages' captures intimacy up-close — and the result is messy and mesmerizing

TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross. My guest, Andrew Leland, is a writer whose recent subject has been the world of the blind. He's slowly been going blind for the past 20 years as a result of a progressive eye disease called retinitis pigmentosa, or RP. In the state of Massachusetts, where he lives, he is now considered legally blind. His new memoir, "The Country Of The Blind," is about the experience of slowly losing his vision and preparing for blindness and how it's affected his identity, how the world sees him, his marriage, his relationship with his young son and his ability to continue writing and reading. He also reports on the experience of attending the largest convention of blind people and about spending two weeks at a radical training center for people preparing to go blind.

He also speaks to blind people who have created cutting-edge digital technologies to assist the blind that have been adapted for use by the general population. More philosophical questions are posed in the book, too, like, does vision deserve the privileged place it holds at the top of the hierarchy of the senses? How much of perception happens in the eyes, and how much takes place in the mind? And what happens to the male gaze if you're blind?

Leland has been an editor at the literary magazine The Believer since its start in 2003. He's been published in The New Yorker and The New York Times Magazine and hosted an arts and culture podcast for the Los Angeles public radio station KCRW. Andrew Leland, welcome to FRESH AIR. It's a pleasure to have you here.

ANDREW LELAND: Oh, it's a pleasure to be here. Thank you.

GROSS: If we could see through your eyes, what would we see?

LELAND: If you could see through my eyes, you wouldn't necessarily notice anything that strange if you were just sitting still because I have about 6% of what a normal, fully sighted person sees. And so, you know, I'm sitting right here and I can see a phone in this radio booth that I'm sitting in. I can see the keyboard to the computer that's here. But as soon as you compare it to a fully sighted person, you know, then it's radically different. You know, it's looking through a toilet paper tube, you know, or a keyhole. But, you know, having had that for a decade or, you know, having lived with it for so long, the brain sort of adapts. So sitting still in a well-lit environment, there's plenty of things I can see. You know, moving through the world, it's very difficult because, you know, I don't - when - if you imagine having that toilet paper tube strapped to your head and trying to walk down the street, there's this whole field of things that you don't see that you really ought to, like curbs or toddlers or dogs or fire hydrants. So it's kind of confounding.

GROSS: So you can maybe see, like, straight ahead but a narrow field of vision - no...

LELAND: Exactly.

GROSS: ...Peripheral vision, no up, no down, just kind of straight ahead through a narrow tube.

LELAND: Exactly. And, you know, and there's some additional complications that come along with RP at this stage that I'm in. So my eyes fatigue pretty easily. So while I can see especially magnified print pretty well, you know, after maybe five minutes, I don't want to do the work that it takes to kind of keep that focus. So it's kind of a paradoxical feeling of, like, being able to see but not really wanting to put the effort into seeing, so - for very long.

GROSS: So your field of vision has slowly narrowed over the past 20 years.

LELAND: Exactly. Yeah. The disease is a rod-cone dystrophy. So the rods are responsible for peripheral vision and night vision. And so at first, it manifests as night blindness, where I'm sort of confused about why everyone else is able to see in the dark so much better than I am. And then gradually, yeah, leaving people hanging for high fives or handshakes and then to the point now where really, unless I'm looking, you know, directly at your lips, you know, your lips are going to be the only part of your face that I see as you speak - or your eyes, you know? And so I'm - really, a narrow aperture that I'm pointing around.

GROSS: So when you were first told 20 years ago that you would slowly be going blind after you were already experience a loss of night vision, what did you think the experience of blindness would be like compared to what it has been like? Because you are legally blind in Massachusetts, even though you can see some things.

LELAND: Yeah, that's interesting and also difficult because I honestly - I think I had the same idea of blindness that so many people do, which is just lights out, total darkness. And I didn't really imagine this experience of progressive, just drip-by-drip blindness where even the question of when one becomes blind is confounding. You know, it was reassuring, almost, when Massachusetts said, yes, you know, you've made it to the other side here. And yet, here on the other side, there's still things I can see. So I think when I got that diagnosis, you know, my doctor said it'll be a gradual decline until middle age and then it will really plummet off a cliff.

And, you know, that diagnosis has been slightly altered by my current eye doctor. But even still, in talking to other blind people, I think I probably can expect to be in this twilight, middle zone for a long time. Even with much less vision than I have now, there's still this - I think the brain latches on to whatever amount of vision it still has, even if, practically speaking, I'm doing myself a really huge disservice by trying to cling to it. But it's still probably going to be hanging around a few degrees of vision for years to come.

GROSS: It seems like, you know, from your memoir that you have this conflict between wanting to preserve whatever you have of your vision for as long as possible versus wanting to get it over with and just be blind, you know what I mean? So...

LELAND: Yeah.

GROSS: ...Where are you now in terms of that inner conflict?

LELAND: Yeah, that is the - in some ways, the defining conflict of my life at the moment. And it's something that I think I expected finishing the book to resolve for me. And then I was surprised to realize that it's still a sort of daily struggle because I've really accepted the fact that accepting blindness and letting go of the sight that I have in order to do things in a blind way - for example, to use a cane wherever I go - even if I can often see the don't walk sign flashing, it's just so much safer for me to try to use my ears to hear where the traffic patterns are going rather than trust my eyes because I'll think I'll see it's clear and then, you know, halfway across the street realize, oh, right, except for those two cars that I completely didn't see. You know, or reading - like, you know, I could try to get by just using my eyes with magnification, but my eyes fatigue so much that, you know, I don't know how I would have finished this book had I not learned to use some of the screen reader technologies and other assistive technologies for blind reading than I had.

So there's a really pragmatic and almost existential imperative to figure out how to be blind and to accept blindness. And yet, as you point out, there's still such a draw from vision. You know, like, a friend of mine who's blind, I love the way he puts it. Like, you know, people tend to cling to the last photon. And also, it seems absurd to just - to say, like, well, there's my son's face, and I'm not going to look at it, though. Like, that's not what I need. So I think to answer your question, the place I'm at now is I want to be able to enjoy vision, you know, and I want to be able to enjoy everything from my son's face to TV that we're watching to, you know, all the things that one might enjoy looking at - street signs are useful. But practically speaking, I have to learn the skills and I have to be able to function without it because it comes and goes during the day, depending on light conditions or my eye fatigue. And also, you know, the fact of my condition is it's going to go away over the next few years, as well.

GROSS: You were diagnosed with RP - the disease that's causing you to lose your vision - when you were in college, when you were a freshman in college. But you were experiencing the symptoms when you were in high school.

LELAND: Yeah.

GROSS: And you thought at the time it's because you were so young and you had done so many psychedelic drugs.

LELAND: (Laughter).

GROSS: And so I'm thinking, like, you must be thinking, I'm losing my vision, and it's my fault because of these drugs.

LELAND: Yeah, there was definitely a period of that anxiety. And thankfully, my dad is a bit of a techie and had bought me a modem around that time. And so I did get on the early internet and did some - you know, it wasn't Google, it was whatever Google's grandfather was - you know, Lycos, WebCrawler. And I found pages about retinitis pigmentosa, and it was a real solace. And I basically diagnosed myself. But, yeah, before I did that, there was a period where I thought, oh, I, like, rubbed my eyes too much, or I, like - yeah, why was I doing psychedelics before my brain had finished developing? And, you know, I had wrenched the doors of perception off their hinges, and this is somehow my fault.

GROSS: (Laughter) Yeah. So you qualify as legally blind now. What does that mean, and what does it get you and what do you lose with that definition - with that medical definition?

LELAND: Yeah. I mean, it's interesting, blindness being a spectrum. It is a sort of arbitrary metric that really only emerged when government assistance programs had to sort of decide who was eligible. And so there's two main ways that legal blindness is measured - one is in acuity and the other is visual field. So acuity means if you can't, you know, read that giant E at the top of the eye chart with corrective lenses, you're legally blind by that measure. And then the one that affects me is visual field. So if you have - I think it's 20 degrees of vision or fewer - and I have something like six degrees - then you're legally blind.

And you ask what you lose. I mean, in some ways, it's - the question is more of what you gain because it makes you eligible for services. So the Massachusetts Commission for the Blind - and there are commissions - similar commissions across the country - you know, gets me training. So there's somebody who can come to my house and hand me a white cane and say, OK, let's walk around and I'll show you how to navigate with a white cane, or here's what a screen reader is and I'll show you how to use your cellphone with your ears instead of your eyes.

GROSS: And that's helpful, I'm sure, right?

LELAND: Tremendously helpful. Yeah. You know, and as I've begun to be more public about blindness, you know, I'm getting in touch with more blind people who are - strangers who are just writing to me. And it's really striking to hear from people who don't have any sense of what's available. And they say - you know, I talked to a woman recently who said, oh, I really wanted to read your book or your article, but my partner went to sleep and so I haven't had a chance to read it yet because she wouldn't read it to me. And I just thought, oh, man, you've got to get your screen reader going. Like, you can't rely on your partner to read to you like that. And so it's really - these tools are not just powerful, they're - you know, they're crucial for people to live not just lives of independence, but just, like, you know, the basic dignity that I take for granted and I've taken for granted for my whole life - to be able to read something when I want to. You know, that's such an important thing to be able to do. And it only comes when you learn that technology.

GROSS: You've become part of the community of blind people, in part because of your book, because you've made a point of getting in touch with blind people and going to conventions as a reporter, you know, writing this book. So it was a way of being in it and being outside of it at the same time. And that kind of describes your psychological reaction to it, too, because on the one hand, you're grateful to have a community of blind people but you're also alienated by aspects of it. What alienates you?

LELAND: One of my first encounters with a blind community was when I was living in Missouri. My partner, Lily, is an English professor. So we moved to the middle of Missouri right before we got married, and there was a meetup of the National Federation of the Blind's local chapter, and I had no idea what that was. But I was just starting to feel more isolated and more blind, and I wanted to find a community. So she and I went, and we showed up late. So most of the blind people didn't know we were there, and the sighted people there didn't alert anyone to our presence. And so we really were just standing at this uncomfortable remove at this park under this gazebo, and I felt very uncomfortable.

And I'm struggling to explain exactly what it was. You know, and I think, you know, it was something that I experienced as a non-disabled person my whole life, just this feeling of difference and sort of - almost fear. You know, I don't know what I was afraid of, right? It's not like I'm in any danger, but it was, like, a fear of difference, I think, you know, this sense - and I think that was certainly exacerbated by the sense of, like, is this me? Like, you know, am I now a part of this sort of sad, strange world? You know, I think there's certainly pity there.

GROSS: On your part.

LELAND: You know...

GROSS: You were pitying them?

LELAND: On my part, yeah. Like, this is a sort of...

GROSS: Exactly the...

LELAND: ...You know, it was just like...

GROSS: ...Reaction you don't want other people to have toward you.

LELAND: Of course. Yeah. You know, and I think there was, like, a sense of, you know, they were arguing about how to spend, you know, like a $50 publicity budget to raise money for, like, a bingo night fundraiser. You know, it just felt like things that - you know, I had this very condescending attitude. Like, more power to them, but, like, what does this have to do with me? And...

GROSS: You're not a bingo guy.

LELAND: Not a bingo guy. Yeah. And, you know, certainly, part of it, I think, was this, like, culture shock of moving from the Bay Area to mid-Missouri. And, like, you know, the - just the vibe of the picnic was also new to us. But I just - yeah, I just - I hated myself as I had these feelings. And that's something that came up again and again as I started to try to immerse myself in these communities where I would get really excited about something and then suddenly have this pivot of feeling of, like, this is not - these aren't my people, right? Like, well, I don't know - I don't want anything to do with this, you know? And I had an ugly reaction when my diagnosis got kind of adjusted at one point where I thought I was going to go blind very quickly, you know, in the next year or something. And then my doctor was like, actually, probably it's going to be slower and longer than that. And I thought, oh, cool. I don't have to hang out with blind people anymore, you know? And then I was like...

GROSS: (Laughter).

LELAND: ...Wow, listen to you. You know, certainly, that thinking has changed, but I think it's just a - if I really wanted to boil it down, it's just a fear of difference.

GROSS: Well, let me reintroduce you here. If you're just joining us, my guest is Andrew Leland, author of the new book "The Country Of The Blind: A Memoir At The End Of Sight." We'll be right back. This is FRESH AIR.

(SOUNDBITE OF FLORATONE'S "FRONTIERS")

GROSS: This is FRESH AIR. Let's get back to my interview with Andrew Leland, author of the new memoir "The Country Of The Blind," about how he's been slowly going blind for the past 20 years as a result of the progressive eye disease retinitis pigmentosa. He's now officially legally blind, although he still has a very narrow field of vision.

So getting back to the white cane, when you first started using it and you were going to some kind of event - I can't remember if it was a school event or what. And your wife basically said, oh, don't bring it. And it's - I don't think it was so much that she was ashamed that you were blind as it was that she thinks it makes you look vulnerable...

LELAND: Exactly. Yeah.

GROSS: ...And that, you know, she was afraid that you'd be assaulted because you're vulnerable, that somebody would try to, like, you know, steal from you. Is that your experience of carrying the cane, that the world perceives you as vulnerable and that you are more vulnerable to being assaulted?

LELAND: Well, it's tricky. You know, I did encounter statistics about, for example, violence against people with disabilities. You know, and there are - it is documented that people with disabilities are assaulted and victims of violence, including sexual violence. You know, so I want to be very clear about that dynamic. But I don't think it's helpful to hear a statistic like that and then say, OK, I am now de facto more vulnerable in the world. And I should change in some fundamental way what I'm going to go and do. So I don't feel more vulnerable necessarily, you know, but I do have to rely on other people to help, you know, guide me in certain situations.

You know, and I want to say about Lily's reaction there, part of that experience was that we hadn't really talked about the cane. And I hadn't really told her that I needed it. And so then when I suddenly produced it, you know, she had that reaction that everyone has the first time they see, you know, a loved one with a cane, which is this sort of intense cocktail of emotions, which includes like, oh, God, they look so vulnerable. You know, I think I wasn't being fair to her just by producing it because we hadn't talked about it, you know?

And that scene in the book, we went over it together a lot. And it was really useful, actually, because it sort of forced a conversation between us to say, why did you have that reaction? You know, in my first draft, I was a lot harsher, I think, against her. Like, oh, yeah - we were in this restaurant, and I suddenly pulled the cane out to find the bathroom. And she said, you know, you don't need that. And after we talked about it, I realized that I hadn't given her a chance to acclimate to it before I busted it out in this social situation.

GROSS: And, you know, you also quote her at another point in the book as saying that canes are - or people think of canes as being emasculating, that it's different for a man than a woman to have a cane. And...

LELAND: Yeah.

GROSS: And I think she kind of caught herself after saying that. I mean, she's a college professor. She knows the ins and outs of all this stuff. But what was your reaction to hearing that? And what kind of conversation did that lead to?

LELAND: Yeah, the comment she made was, this has got to be harder for a man than a woman because of those expectations. You know, and she wasn't saying that there - that that's the way it has to be, but just acknowledging that, you know, being a man raised in the society that we live in, you know, there are these sort of expectations that I certainly feel. Like, I want to be the one driving us around. You know, I want to be the one guiding her through the dark restaurant rather than vice versa.

And so it stung to hear her say that, certainly, because it felt like even if she was in her, you know, professorial way acknowledging it as, like, a, you know, received ideology that we didn't necessarily need to subscribe to, you know, there was a different part of my mind that thought, like, oh, well, you see me this way. Like, you're seeing me in this diminished light. And, yeah, so it wasn't great-feeling.

But also, I think it was important because I think - you know, I've heard of lots of couples where one member of the couple becomes blind or becomes disabled and the relationship falls apart. And I think it falls apart certainly for many reasons, but my sense of it is that people don't talk about it in a way that can disentangle some of these difficult dynamics. And so one of the things I really wanted to do in writing the book was, as uncomfortable as it was, to get into some of these difficult conversations because I think it's so important for people to be able to disentangle those perceptions of what their gender roles are and how disability complicates them in a way that, then, you can move past it.

And I think writing the book and having those conversations with Lily really was just transformative for me because now I feel like we have a handle on what's real and what's not, you know? So blindness has affected some of those dynamics. But also, like, in the spirit of the alternative techniques I was talking about, like, sure, I'm not driving us all around the way I might otherwise be, but there are other ways that I can, you know, pick up the slack and that there can still be sort of a normal marriage that's just sort of been slightly warped in this way - that disability or blindness has kind of changed the dynamic a little bit, but that's still a fundamental, intact, wonderful thing that was not that radically different than it was before.

GROSS: Well, it's time for another break, so let me reintroduce you. If you're just joining us, my guest is Andrew Leland, author of the new memoir "The Country Of The Blind." We'll be right back after a short break. I'm Terry Gross, and this is FRESH AIR.

(SOUNDBITE OF DOMINIC MILLER'S "CHAOS THEORY")

GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with Andrew Leland, author of the new memoir "The Country Of The Blind," about how he's been slowly going blind for the past 20 years as a result of the progressive eye disease retinitis pigmentosa. He's now officially legally blind, although he still has a very narrow field of vision. Andrew Leland is a writer and editor who's been published in the New York Times Magazine and The New Yorker. He's been an editor at the literary magazine The Believer since it started in 2003.

You had already started to lose your vision, and you knew what was ahead when you got married. And she knew what was ahead, too, though knowing that something's going to happen is different than living through it actually happening. How do you think Lily, your wife's, life has been changed by your blindness?

LELAND: I mean, every marriage is a negotiation of - particularly if you have kids, which - we have a son. You know, I think there's - every marriage has that negotiation of who's doing what. And is there parity? You know, I did the laundry, but you did the dishes. And I think certainly her life has changed just in the sense of she's the one who's got to drive. She's the driver. And then there's other more subtle things. Like, in our house, you know, if there's lead paint that's chipping, you know, I'm not going to see those paint chips, you know? So I think there's, like, a sense of vigilance, of visual vigilance that she has that she wouldn't - she might not otherwise have.

And I think that, you know, that can create tension, certainly. And I think I just - I really have made an effort to not be the kind of blind person who just says, well, I don't see very well. And it's going to be so much easier for Lily to find the trash can in this restaurant. And I'll just let her clear our table, you know, and to say, it's going to be annoying, and I might bump into a stranger's table, or I might, you know, go into the wrong corner at first. But I don't want to be that guy just sitting there and letting her do everything for me. So I really - one of the things that I think about a lot is ways in which I can push back against that inertia.

GROSS: You describe some, like, blind activists...

LELAND: Yeah.

GROSS: ...As having two points of view at the same time, two contradictory points of view that blindness is an incidental attribute that doesn't affect one's ability to accomplish nearly anything a sighted person can. But they also demand special accommodations and benefits for blind people. What do you think of that contradiction? Do you think it is a contradiction? Having...

LELAND: That is...

GROSS: Like, living it now, do you think...

LELAND: Yeah.

GROSS: Do you still think of it as a contradiction?

LELAND: That is the central contradiction that I've just wrestled with through the writing of the book and just through the process of coming to terms with blindness. And I don't think it's a contradiction anymore. I think when blindness is accommodated, you know, when somebody builds a website so that, with my screen reader, I can read every piece of text on there, I can click the checkout button with the screen reader, you know, then it doesn't really matter that I'm blind, right? Like, I'm listening to the website. You're looking at it. But we're both, you know, ordering pajamas online, and we're fine.

It's when there is an exclusionary practice where somebody says, well, I'm not thinking about a disabled user of this website, and now all of a sudden I need somebody's help to check out to buy those pajamas. Then blindness is important, and it becomes central. So I think that's the sort of answer to the contradiction there, where the ideal is that blindness is incidental. And most of the time it should be. You know, one of my favorite writers, Georgina Kleege, who's blind, wrote, you know, on some days it matters less than the weather. And there are days - there are many days that are like that and should be like that. But again and again, you know, when you're applying for a job and someone just can't fathom how a blind person is going to get to the office, let alone do the things they have to do, then blindness becomes a sort of important identity that you have to organize around.

GROSS: Another thing that you write - you say activists sometimes frame their disability in terms that echo those used by other marginalized groups, locating pride in their oppressed identity - so, for example, being proud that you're African American, being proud that you're Jewish, being proud that you're Native American, being proud that you're Asian American. And you ask, does blind pride require a wholesale rejection of sight? Have you really faced that kind of identity issue in larger groups of blind people, especially, like, in more activist groups?

LELAND: Yeah, oh, absolutely. Yeah. Blind pride is a thing for sure. I think comparing deaf culture and blind culture is interesting because I think deaf culture - like, deaf people were the trailblazers in this sense. Like, I think the idea of deaf pride and deaf gain, the idea that, like, being deaf actually gives you access to experiences that being hearing doesn't - I think that's, at least in my research, like, where that idea originates. But I've certainly heard blind people make that argument that blindness gives them experiences that are richer than they had when they had sight. And - you know, and I've felt it, too, you know, just on the level of pride, you know? When I'm in a group of blind people I really like, there is something really lovely about having that shared experience and of commiserating but not just commiserating about the bad parts but really, like, just sharing an attitude and a perspective.

And I think there are aspects of blindness that - even though it would be absurd to say, like, I was really unhappy with all this vision I had to carry around for so many years, and now that it's finally leaving, you know, I'm happy - like, that's obviously not the case. But there are aspects of blindness, like reading Braille, for instance - even though I'm really slow still and it's really challenging and really frustrating, like, it's an incredible thing to read a book with your fingers. And, you know, I'm grateful that I had the chance to do that, and I wouldn't have otherwise.

GROSS: So you went to a National Federation for the Blind Training Center where people who are going blind, people who were born blind, people who suddenly lost their vision are trained to, like, get around and do various things so that they're more confident and more knowledgeable about how to navigate through the world. So since you're still partially sighted, you had to wear basically, like, dense blindfolds for about eight hours a day while you were there...

LELAND: Yeah.

GROSS: ...Which means that you probably had less light than a lot of blind people do because blind people often have some light that they can see, even if they can't make out anything more than a blur. Tell us about one of the things that you learned that was really helpful.

LELAND: I mean, I went to that center in Colorado expecting to learn a bunch of blind hacks, you know? Like, I kind of thought of it as like, you know, cooking school or something where they're going to be like, here's how you sharpen your knife, and here's how you fricassee an eggplant or whatever. And certainly there were tips and tricks like that. But the more fundamental thing I learned there was just that it's possible to figure out the myriad problems that blindness presents. But I guess if there was a specific skill, it was the travel class. So all of the instructors at the center are blind. And so you're out there in - on a Denver intersection with a blind instructor, wearing sleep shades. And they say, OK, cross the street. And - you know, and they teach you how to listen to traffic and how to feel the curb with your cane to get yourself perfectly oriented and to know exactly when it's safe to cross. And that skill I'll take with me for the rest of my life.

And it's almost like balancing a stereo. Like, you listen to the traffic crossing in front of you, and you want to make sure that you can hear the car beginning to approach in your left ear. And then it sort of exits through your right ear, and the tip of your nose has to be sort of finely balanced. And you use that, and you kind of balance that with the parallel traffic going. You want to make sure that feels like it's right, you know, on your shoulder. And then you feel the curb, and then, you know, once you listen to the traffic patterns and you have a sense of when it's time to go, then you go.

GROSS: Do you feel like your hearing has become more acute to compensate for your loss of vision? - 'cause that's - it's a common belief that that happens and vice versa - if you've lost your hearing, that your vision becomes more acute.

LELAND: That's a myth. I went to enough rock shows without wearing adequate hearing protection in my youth that if you and I did a hearing test, like, I would not be hearing more decibels than you would. I think the thing that's not a myth is that when one relies on a sense more, you know, you pay more attention to it. And so I think, you know, you would certainly have the ability to do this if you trained yourself. But, you know, I think the blind person might hear the cab come up before everybody else does not because they have super hearing but just because they're not staring at their phones and they're listening more.

GROSS: So do you hear things you feel like you hadn't heard before? I guess it's so gradual, it'd be hard for you to answer that.

LELAND: Yeah. And - you know, and I do still have vision. And it's funny. I think my tactile abilities have sharpened. I'm sure my hearing has sharpened, too. Like, for speed listening, when I speed up the synthetic speech on my computer, you know, when I listen to an email or something and my wife walks into the room, she can't - it sounds like C-3PO melting down, but I can understand it, you know? So that's something that certainly has improved. And my fingers - just, like, running my fingers along different surfaces - I do feel like I'm just more attuned to the tactile world than I was compared to earlier.

GROSS: I know there's an app that describes television and, I think, movies for people who are visually impaired. Do you use those, and what do you think of the description?

LELAND: I have started to, yeah. And it's interesting. So it's called audio description, and they cut an audio track into the dialogue. So it's not stepping on the dialogue, but it'll say, for example, like, you know, after you stop speaking, Terry runs a hand through her hair and winces as Leland says something silly. And then, you know, it continues on with the program. And it's interesting because if it's done well, the description - the narrator - like, I was listening to "Black Mirror," the Netflix sci-fi show, which is British. And the narrator was British, and he sort of had the same arch tone that the show did, and it worked perfectly. But then I was watching Boots Riley's new show on Amazon, and, like, the narrator just sounded like he had been airdropped in and had nothing to do with the show. And he was stepping on the soundtrack, and I couldn't hear the music, and it was annoying. So it's interesting that it's sort of - it is an artistic practice in itself, and it really has to connect with the tone of the show to work.

GROSS: Well, let's take another short break here, and then we'll be back. If you're just joining us, my guest is Andrew Leland, author of the new book "The Country Of The Blind: A Memoir At The End Of Sight." We'll be right back. This is FRESH AIR.

(SOUNDBITE OF GILAD HEKSELMAN'S "DO RE MI FA SOL")

GROSS: This is FRESH AIR. Let's get back to my interview with Andrew Leland, author of the new memoir "The Country Of The Blind," about how he's been slowly going blind for the past 20 years as a result of the progressive eye disease retinitis pigmentosa. He's now officially legally blind, although he still maintains a very narrow field of vision.

Your grandfather is Neil Simon, the famous writer whose, like, plays and movies have been, you know, such big successes. He's since died, but you describe him as a world-class hypochondriac and that when he was diagnosed with any kind of illness, his response would be, you know, like, don't tell me the symptoms. Just give me the pills. So is he the kind of person who, like, if you told him he was sick, he would start imagining that he had the worst symptoms or thinking, like, surely, this is going to be terminal?

LELAND: Yeah. Or even if you didn't tell him he was sick, you know, there would be a twinge, and that would probably be a terminal twinge.

GROSS: Did you pick up on any of that yourself when you were diagnosed with retinitis pigmentosa and told that you would slowly be going blind? Did you have that attitude of, like, don't tell me any more 'cause I will imagine that my eyesight is just, like, decreasing rapidly, more rapidly than it really is, that you'd start imagining symptoms you didn't really have?

LELAND: I think I did inherit some version of that hypochondria. I think for me, the thing about, just tell me what pills to take; I don't want to think about it, is very strong in me. Like, I fought with my editor to not write about medicine at all in this book. I just wanted to think about blind culture and blind identity and all of that. And then as soon as it was, like, getting into CRISPR and gene therapy and stem cell therapy, I just thought, like, get me out of here. And I just find my life is so much richer when I'm not hoping for a cure and, like, tracking Google Alerts about clinical trials that are available. And I don't know how much that connects with my grandfather. But it does 'cause when I think about him, you know, he had illnesses throughout his life, and, you know, and they defined him in some way. You know, they were - he was obsessed with them. But also, like, he wasn't reading the scientific literature. It was really just - like, he wanted to get on with his life and write plays. And I identify with that.

GROSS: You're struck by the mindfulness that blindness requires. Can you talk about that a little?

LELAND: Yeah. Things happen more slowly when you're blind, in general. You know, if you have to figure out where the turn is by using your cane rather than your eyes, you know, there's a chance you're going to miss it. And there's just more of that kind of exploration. And, you know, I certainly experienced this more when I was doing the sleep shade training and I was totally blind under the shades. But things just take longer. And I think if I were to try to maintain my sighted sense of, like, how long it takes to do something like find my way across town in a town I've never been in or, you know, you've got to take the bus instead of driving, like - so I think mindfulness comes in, in that sense of just having patience and, you know, accepting the reality of the situation rather than, like, really yearning for something that you can't have.

And I think mindfulness is really helpful there because it allows you to - as one blind mentor of mine put it, you know, you look at it as a magnificent puzzle. And that sounds sort of, maybe, like putting too rosy a picture on it. But I really have found that it's possible that you can say, OK, this is a puzzle. And if you can get curious about the puzzle - I think mindfulness is a lot about that curiosity and saying, OK, like, let's just look at this situation and figure it out. Then it doesn't seem depressing or disastrous or tragic. It's like, OK, this is fun. Like, how am I going to read this book with my ears or my fingers? Or how am I going to find out where the exit to this cafe is? And it's embarrassing that people are looking at me, like, caning around the corner. But also, it's kind of fun.

GROSS: In talking about the vulnerability that people project onto blind people and that, I imagine, some blind people actually experience, like, you wonder, when you were watching "The Walking Dead," which is about, you know, zombies (laughter)...

LELAND: Yeah.

GROSS: You were thinking, like, what if there's a zombie attack, you know? How am I going to protect my family (laughter)?

LELAND: Yeah, yeah, yeah. Before the pandemic, I started taking Brazilian jujitsu classes, I think, very much out of that "Walking Dead" anxiety of, like, OK, well, you don't need to be able to see to be - you know, there are, like, blind judo champions and blind jujitsu champions. And I thought, OK, this will make me more tough and more ready. And, you know, in the end of the day, I was like, I'm a guy taking jujitsu classes. Like, realistically, who am I thinking I'm going to battle, you know?

And it's all just sort of in my head. Like, practically speaking, in my life, I don't think I'm going to be wrestling too many assailants to the ground. But, you know, I think there is some psychic protection that comes from that. And I think - you know, it's a little strange to admit, but I think just being physically fit has been helpful for me. Like, trying to stay healthy has helped me feel more comfortable in my body. And I feel more comfortable in blindness in some ways, where I'm not just, like, in this gross tube of a body that I hate. And I can just sort of, like, feel relaxed and blind.

GROSS: So I want to get to one or two of the more philosophical questions you raise in the introduction with your book. So does vision deserve the privileged place it holds at the top of the hierarchy of the senses? What do you think?

LELAND: Let's go with no.

(LAUGHTER)

LELAND: I think, again, I got to admit - I'm not going to try to tell you that having vision is not an incredibly useful thing for a human being to have for a myriad of reasons. But when we talk about the experience of being alive and of being conscious, you know, when James Joyce was going blind - to paraphrase him, you know, I'm only losing one world among many, you know? And vision is only a tiny sliver of experience. And I think that's true.

And I think if you look at the things that blind people are capable of imagining - you know, like John Milton writing "Paradise Lost" as a blind person - you know, there is this incredible richness to consciousness that vision has nothing to do with. And the tactile realm, the audible realm, the mental realm, the emotional realm, you know, it's all so rich that I don't think vision has anywhere near the sort of, like - you know, that's the ticket to entry to understanding the world that we - that most people suggest that it has.

GROSS: OK, round one.

LELAND: (Laughter).

GROSS: How much of perception happens in the eyes and how much takes place in the mind?

LELAND: Well, this - I think reading is an interesting example. You know, I think, although there's a lot of people who argue that literacy really is only a visual thing, and that if you're only listening to your screen reader and you don't read Braille, where you can get all of the orthography and the punctuation of a text, then you're not really literate. And I understand that argument. But for me, like, reading is a mental process, not a visual one. And certainly, there are differences between listening to an audio book and reading it visually. But I still think I'm reading when I listen. And so it just keeps coming back to this idea of a different pathway and a different modality.

And Oliver Sacks has written a lot about blindness. And he had a wonderful observation that we think of the modalities, which is to say vision and hearing and touch, as really distinct. But actually, if you look at how people experience the world, they're really blended together. And there are these wonderful examples of brain scans of blind people. And their visual cortices are lighting up when they read Braille, for instance, or when they echolocate with a cane and, you know, hear the environment sonically change as they move. So I do think it's happening in the brain.

GROSS: Well, I want to thank you so much for talking with us.

LELAND: Oh, thank you. This has been great.

GROSS: Andrew Leland's new memoir is called "The Country Of The Blind." After we take a short break, Justin Chang will review Ira Sachs' new film "Passages," about a film director who leaves his husband after having an affair with a woman. This is FRESH AIR.

(SOUNDBITE OF TODD SICKAFOOSE'S "BARNACLE")

TERRY GROSS, HOST:

This is FRESH AIR. Ira Sachs' new romantic drama "Passages" follows a male film director who leaves his husband after having an affair with a woman. Our film critic Justin Chang says it's a hot-blooded tale of desire and a terrific showcase for its lead actor, Franz Rogowski. Here's Justin's review.

JUSTIN CHANG, BYLINE: The New York-based writer-director Ira Sachs has a gift for putting romance, gay and straight, under a microscope. In his earlier independent dramas like "Forty Shades Of Blue," "Keep The Lights On" and "Love Is Strange," he examines all the things that can test a long-term relationship, from infidelity and addiction to issues around money and real estate. But while Sachs' storytelling is rich in emotional honesty, there can also be a muted quality to his work, as if he were studying his characters rather than plunging us right in alongside them.

There's nothing muted, though, about his tempestuous and thrillingly messy new drama "Passages," mainly because its protagonist is the single most dynamic, mesmerizing and, frankly, infuriating character you're likely to encounter in one of Sachs' movies. He's a Paris-based film director named Tomas, and he's played by the brilliant German actor Franz Rogowski, whom you may have seen, though never like this, in movies like "Transit" and "Great Freedom."

From the moment we first see him berating his cast and crew on the set of his latest picture, Tomas is clearly impossible, a raging narcissist who's used to getting what he wants and seems to change his mind about what he wants every five minutes. The people around Tomas know this all too well and take his misbehavior in stride, none more patiently than his sensitive-souled husband Martin, played by a wonderful Ben Whishaw. When Tomas has a fling with a young woman named Agathe, played by Adele Exarchopoulos, Martin is willing to look past it. This clearly isn't the first time Tomas has slept with someone else. But Agathe stirs something in Tomas, and their fling soon becomes a full-blown affair.

(SOUNDBITE OF FILM, "PASSAGES")

FRANZ ROGOWSKI: (As Tomas Freiburg) I think I'm falling in love with you.

ADELE EXARCHOPOULOS: (As Agathe) You say that a lot, I imagine.

ROGOWSKI: (As Tomas Freiburg) I say it when I mean it.

EXARCHOPOULOS: (As Agathe) You say it when it works for you.

ROGOWSKI: (As Tomas Freiburg) I say it when I mean it.

CHANG: "Passages" is a torrid whirlwind of a story where time moves swiftly and feelings can shift in an instant. Before long, Tomas and Martin have called it quits, and Tomas has moved in with Agathe. But ending a marriage of several years is rarely clean or easy, and Sachs and his longtime co-writer Mauricio Zacharias chart the emotional aftermath in all its confusion and resentment. Martin wants to sell the little cottage they own in the French countryside, but Tomas wants to keep it. Even after he's moved out, Tomas keeps bursting in on their old apartment unannounced despite Martin's protests that he doesn't want to see him anymore. Tomas feels jealousy and regret when Martin starts dating another man, which is hard on Agathe, especially when she finds out she's pregnant.

Agathe is the most thinly written of the three central characters. But here, as in her star-making performance in "Blue Is The Warmest Color," Exarchopoulos is entirely convincing as a young woman trying to figure things out. Tomas is clearly bad news, a destructive force unto himself and in the lives of those around him. It's hard to look at him and not see echoes of Rainer Werner Fassbinder, the great German filmmaker whose personal relationships were as notoriously fraught as his movies. But as maddening as Tomas is, he is also, in Rogowski's performance, a powerfully alluring figure whose desires can't be pinned down. Tomas is thrilled and unsettled by the feelings Agathe unlocks within him, but he still yearns for his husband after they separate. And Martin, played with moving restraint by Whishaw, can't help being drawn back to Tomas against his better judgment.

At one point, Tomas and Martin have sex in a feverish scene that Sachs and his cinematographer, Josee Deshaies, film in an unblinking single shot. It's one of a few sex scenes here whose matter-of-fact candor earned the movie an NC-17 rating from the Motion Picture Association last month. Rather than accept this outcome, the movie's distributor, Mubi, opted to release the film unrated and publicly criticized the ratings board for marginalizing honest depictions of sexuality. It's hard not to agree. It's the intimacy of "Passages" that makes Sachs' characters so compelling and so insistently alive.

GROSS: Justin Chang is film critic for the LA Times. He reviewed the new film "Passages." Tomorrow on FRESH AIR, our guest will be poet and author Shane McCrae. His new memoir, "Pulling The Chariot Of The Sun," is an unflinching test of a child's memory - how he came to understand that his maternal grandparents, who were white supremacists, kidnapped him from his father, who was Black. I hope you'll join us.

(SOUNDBITE OF JACKY TERRASSON'S "QUE RESTE-T-T'IL DE NOS AMOURS?")

GROSS: Our interviews and reviews are produced and edited by Amy Salit, Phyllis Myers, Sam Briger, Lauren Krenzel, Heidi Saman, Therese Madden, Ann Marie Baldonado, Thea Chaloner, Seth Kelley and Susan Nyakundi. Our co-host is Tonya Mosley. I'm Terry Gross.

(SOUNDBITE OF JACKY TERRASSON'S "QUE RESTE-T-T'IL DE NOS AMOURS?")

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