NEAL CONAN, Host:
This is TALK OF THE NATION. I'm Neal Conan in Washington. "Unbeknownst to my family, my physician, or the motor vehicle branch," writes Ryan Knighton, "by the age of 17, I was going blind behind the wheel of my father's 1982 Pontiac Acadian. Feel free to shudder. Other soon-to-be- blind people are on the road today enjoying a similar story, only they've still got some damage to do. Maybe you'll meet one of them at an intersection."
That's an excerpt from Knighton's newly published memoir Cockeyed, which describes his adventures driving by Braille, and his later diagnosis of retinitis pigmentosa - a genetic condition that steadily reduced his ability to see.
The book is about denial, anger, and fear, but it's also about slapstick, technology, and embarrassment. It's about what we all see, and what we don't. Later in the program, an update on the Jarawa, a stone age people on the remote Andaman Islands in the Indian Ocean who are threatened with extinction. But first, Cockeyed.
If you have questions about what it's like to go blind, how people react to the white cane, and what it's like to try to pass for sighted, give us a call. Our number is 800-989-8255. That's 800-989-TALK. The e-mail address is firstname.lastname@example.org. Ryan Knighton joins us now from the studios of the Canadian Broadcasting Corporation in Vancouver. Nice to have you on TALK OF THE NATION.
RYAN KNIGHTON: Nice to be here.
CONAN: You write that the story of your blindness began as a lie. Tell us a little bit about that.
KNIGHTON: Well, I had a summer job, and I was driving forklifts, which I thought was the best job ever when you're a teenager - being asked to drive for money. And it turned out to be a very bad job, because I was slowly going blind and I didn't know it, and I almost ran over one of my coworkers with one of the forklifts.
And in order to kind of defend myself, as only a teenager can, I lied and said that I had an eye problem and that's why I'd almost hit him. He thought it was actually a vengeance act on my part. So in the end, I ended up lying and saying that I had an eye problem and I didn't see him, and it turns four years later that it was true. So I actually diagnosed myself as going blind by accident.
(SOUNDBITE OF LAUGHTER)
CONAN: And in hindsight, which you point out is probably your best vision at the moment, you were totally right.
KNIGHTON: Yeah, I was totally right, yeah. And it still - it was great in some respects, too, because it did terrify this guy, and I did have such a vendetta against him, so it worked out well for everybody.
(SOUNDBITE OF LAUGHTER)
CONAN: Well, at least you missed him.
KNIGHTON: At least I missed him, yeah.
CONAN: The fascinating part about that to me is you didn't know you were going blind.
KNIGHTON: No, no, I had no idea. I had no idea. I mean, my family has really kind of gimpy, weak eyes to begin with. I mean, I always wore kind of coke-bottle lenses, but this was something different. This was like little holes had started to develop in my retina, and when you have these little holes, like, they're very tiny at the beginning, but a lot can fit inside of a little hole like that.
Like, if you roll up a newspaper and look through it, you know, an entire dump truck, at a certain distance, can fit inside that. But your brain kind of infers what's missing, and so you can't really see the blind spots when they're that small. It's kind of like trying to see that blind spot where your optic nerve connects.
CONAN: Mm hmm.
KNIGHTON: So, yeah, I had this little kind of Swiss cheese starting, and I couldn't see in the dark very well, either. That was the first symptom was night-blindness, and a lot of people don't really understand night-blindness very well, including people with night-blindness, and I thought I was fine because I could see lights, you know, at night. I could see headlights as they were coming, careening towards me. But what I couldn't see is anything that they meant to illuminate, that I couldn't see things being illuminated by candlelight, you know, light bulbs, suns, moons...
(SOUNDBITE OF LAUGHTER)
KNIGHTON: ...you know, whatever. So, yeah, it's hard to understand, because it's not like you're completely in the dark. You're just not seeing as others do, you know, and that's a hard thing to compare what other people see to what you see. You know, you just think the fog is particularly bad this year.
(SOUNDBITE OF LAUGHTER)
CONAN: It was, in fact, driving, as you describe, by Braille. You steered over until your tires...
KNIGHTON: Driving's a very generous word for what I was doing, more like careening and guess-working, and...
(SOUNDBITE OF LAUGHTER)
KNIGHTON: ...yes, driving was - I actually think my car diagnosed me more than a doctor did, because the car kept telling me repeatedly to go get my eyes checked. Ditches told me that. I actually put my father's car up on a decorative boulder once, all sorts of stories like that.
CONAN: My, you're strong.
KNIGHTON: The car was much stronger than I was.
(SOUNDBITE OF LAUGHTER)
KNIGHTON: It kept very resilient through the whole thing.
KNIGHTON: We just thought I was a very bad driver.
KNIGHTON: Which I was.
CONAN: But your father thought you were drunk and lying about it.
KNIGHTON: Yeah, because the story in the book that I tell is that I put his car in the ditch, finally, and I did it in a way that nobody could understand, which is I did it about five kilometers an hour. And had I sped into the ditch, it would've been like any other bad teenager driving, but because I did it at such a slow pace - and I really didn't crash it. I kind of just parked it on the lip of the ditch. It was really kind of, it looked like a growth on the edge of the ditch. It was just kind of nicely sitting there.
And when he came around to help me get it towed out, he just couldn't understand how I could do it, and I couldn't, either. And I'd been at a party, and I'd had, you know, maybe two or three beers, but I wasn't drunk. And he said, you know, I was drunk driving and that's what did it, and I had to agree with him, because I didn't know what else was going on with me.
So when I was diagnosed later as going blind, he's kind of held a kind of guilt over that ever since, you know, not believing me when I said I wasn't.
CONAN: Yeah, you said that you'd actually never talked about it since, and I wonder, since the book's come out, have you discussed it?
KNIGHTON: No, no, and actually, I don't know. We really haven't discussed it, but, you know, I think it's just an understood thing between us that, you know, it's one of the things just to let go. But, you know, I think parents do that, right? You know, something horribly happens to their kids, and they look for almost any excuse to internalize a guilt over it.
So, you know, like I say, part of the horror of going blind is really that you can't keep it within your own skin, that you'd like to think it's your trouble. But it really, it extends to everybody around you, and, you know, kind of crashes into their world. And so that's something you just, you know, everybody has to have their own wrestle with it, and that's an unfortunate thing with any disease, I think.
CONAN: One of the most fascinating parts of your book is, in fact, your observations about how time and space are changed by your condition.
KNIGHTON: Yeah, yeah, time and space change quite radically when you go blind. One of the main things that I noticed is that, you know, walking in blindness is very much like a feeling of vertigo all the time, like you're kind of stepping off a cliff at every moment because you don't know what's out there ahead of you, which makes for a very kind of high-strung existence if you're not careful. I mean, you're kind of constantly with braced shoulders. I've got big knots in my shoulders all the time from kind of just preparing to be hit by a dump truck at every moment.
But, you know, and time changes, too, because you start using time as a way of measuring space. I mean, you probably walk through the world and you see how space passes by visually, like, you know, certain sights go by, and that's how you measure how you're moving through it. But when you're blind, you measure space as time, as how long it takes you to pass through it. Somebody actually told me that the, I think it was the Bedouin used to use blind guides in the northern deserts...
KNIGHTON: ...because, you know, in a vast, empty desert that's shifting - like the sands shifting - you can't rely on your eyes to give you the markers of where you're going, so it's better to actually have a blind guide because they know the terrain by time it's taking to move through it. And they don't rely on their sight to tell them where they are. So in the desert, actually, being blind is maybe the best way to guide your way through it.
KNIGHTON: Which is an odd phenomena to think about. I mean, I've tried that in parking lots. It doesn't work very well.
(SOUNDBITE OF LAUGHTER)
KNIGHTON: A big empty parking lot.
CONAN: Well, those are kind of immutable, except for the cars move around, anyway.
CONAN: The other part that you wrote about, though, was that in a sense, you slowed down. You started to take things in the now and not to worry so much about abstract things.
KNIGHTON: Yeah, you really - you kind of move very much inside your skin because, of course, all you know beyond what you hear is that which you touch. And that's your primary way of moving through the world, is through touch. And so you really only concern yourself with, like the three feet around you that you can sweep with your cane or you can touch with your fingertips.
You know, actually, I took up guitar a few years ago, and I'm a very bad blues guitar player. And I really hoped that going blind would help me, but it didn't. And the thing that I noticed is that my fingers started callusing, and as soon as I got the calluses, it was like somebody had put sunglasses on me in the dark. It had taken away one of my hands. And I never really noticed how much I used my hands until I lost that kind of deadening, or I got that kind of deadening in the fingertips.
CONAN: So, we didn't know what the sacrifices that Blind Willie McTell, or Blind Blake had to make. Yeah.
KNIGHTON: Exactly, exactly, exactly. I mean, those guys were really living on the edge. They're blind and one-handed.
(SOUNDBITE OF LAUGHTER)
CONAN: Let's get some listeners involved in this conversation. 800-989- 8255, 800-989-TALK. Our guest is Ryan Knighton, his book is Cockeyed: A Memoir. And let's talk with Maria, Maria calling from Salt Lake City.
MARIA: Hi, I was diagnosed with retinitis pigmentosa about a year ago. Nobody in my family has it, therefore, they thought it was kind of strange. They thought I had macular degeneration for quite a while. But finally having a diagnosis was good, because you know what's ahead of you.
MARIA: What - I have so many questions because I've never had an opportunity to speak with somebody who has it. The first thing is, how do you deal with losing your independence? Because I can't drive any more, obviously. I can't read anymore, which was a big part of my life. And having to ask people, take me to the store, read my mail. Does it get easier, in that - in terms of having to depend on people for everything? That's what I'm having the most difficult time with, and the transition at work as well.
KNIGHTON: Right, I mean, that's very much what a lot of the book is about. I mean, I kind of denied I was going blind for a long time and ended up getting in lots of misadventures over it.
You know, the main thing that actually carried me through it is having a sense of humor more than anything else. I mean, it's hard to be - I think one of the main things a lot of people with blindness like you're talking about, you know, the kind of comes over time - and I've met lots of people since the book has come out. I'm not a very good person for giving advice, because I was so kind of, reticent myself. But...
KNIGHTON: ...what I ended up learning along the way is that embarrassment is only felt when you have the pretension of trying to act sighted. If you, if you kind of give up that sighted identity and its codes of behavior, the embarrassment goes away.
And picking up a white cane is a great beginning in that, because it apologizes for anything you're doing. And it kind of mediates that embarrassment for you. People are very helpful. I mean, when you've got a white cane, it's kind of like you're sending out, you know, the bat signal, or something. People come around and they help you, all the time, without you even asking.
And, I mean, I write in the book about how waitress, you know, grab me by the elbow and drag me into washrooms and stand there and wait while I'm at the urinal. I mean, it's just - it's kind of almost bizarre, the hostage taking of kindness you can go through.
MARIA: Absolutely. What about at work, the transition? Were people accepting of your vision loss?
KNIGHTON: They were, particularly because I didn't try and join the SWAT team or anything like that. I mean, I really studied, you know, something that I can work with, which is I teach literature and creative writing. I'd worry if I'd, you know, woken up one day 40 years old and in the dark suddenly, and I'd been an electrician or a guy who, you know, kind of works on road crews or something.
So, you know, the fact that I moved into something that's information based, like teaching people writing, is really helpful. Language is like the most important thing.
CONAN: Maria, good luck.
MARIA: Thank you so much.
CONAN: We're going to continue our conversation with Ryan Knighton - his book, Cockeyed - after we come back from a short break. 800-989-8255, if you'd like to join us - e-mail email@example.com. I'm Neal Conan, this is TALK OF THE NATION from NPR News.
(SOUNDBITE OF MUSIC)
CONAN: This is TALK OF THE NATION. I'm Neal Conan, in Washington. We're talking today with Ryan Knighton about his book, Cockeyed. It's an unsentimental story about losing his eyesight and keeping his sense of humor. We've posted an excerpt from Ryan's book at our Web page where you can read about the dangers of mixing night blindness with a nightclub. It's at the TALK OF THE NATION page at NPR.org.
TALK: 800-989-8255, 800-989-TALK. And the e-mail address is firstname.lastname@example.org. And I don't mean to give away the punch line of the excerpt on the Web page, but the description of your life in a mosh pit is pretty funny.
KNIGHTON: Oh, yeah, it works well, doesn't it? I mean, like I say in the book, I mean the punk rock scene taught me more about how to be a blind person than anything else. It's a great place to just completely lose control of your body comfortably. You know, and that's what...
(SOUNDBITE OF LAUGHTER)
KNIGHTON: ...it was a great school, it was a great school.
KNIGHTON: I had the weirdest kind of experience the other day. Do I have time to tell a very quick story?
CONAN: Sure, go ahead.
KNIGHTON: Okay, so yeah, I was walking down the street - this kind of goes back to what I was saying about embarrassment and kind of letting go of embarrassment. If you let go of it, you get into these really great situations.
And I was walking down the street the other day, and I live in Little Italy here. And this guy walks up to me and says - I've got my white cane and he says - can my dog look at your cane? And I said, okay. I thought, you know, who am I to deny a dog looking at my cane?
CONAN: Mm hmm.
KNIGHTON: So this dog is inspecting my cane for a while, for some reason. And then he says, well, actually, can you walk with us? And I said, oh, okay. So, I walk with along with them and he says nothing to me. And then we get to the end of the block and he says, okay, thanks. And I said, why - what did your dog need to learn about my cane? He said, well, I've trained my dog to attack people if they come at me with sticks or knives, and I wanted it to learn that there's, you know, certain sticks in the world that are good.
(SOUNDBITE OF LAUGHTER)
CONAN: And you're his guinea pig.
KNIGHTON: So I feel I've saved a few people in Vancouver with my cane from being devoured by this guy's dog.
(SOUNDBITE OF LAUGHTER)
KNIGHTON: It's a weird world. You don't need to write fiction.
CONAN: No, I guess not, I guess not. So, I bet you're glad that people want to try to since that's how you make your living. Anyway...
KNIGHTON: Yeah, that's right. It's good to get out there.
CONAN: Yeah. Let's get another caller in. This is Lou, Lou calling from Denver.
CONAN: Hi, Lou, you there?
LOU: Yes, I'm here.
CONAN: Go ahead, you're on the air.
KNIGHTON: Hello, Lou.
LOU: Well, it's just that I have a kind of a funny story about having a horrible time playing tennis. And then, finally, I realized, oh, I know where the ball is when I hear it bounce. Tough to make a return at that point.
(SOUNDBITE OF LAUGHTER)
KNIGHTON: Yes, tennis is not one of our stronger sports.
KNIGHTON: I've often thought that we should start an Olympic sport of blind boxing, which would be kind of like a combination between the piÃ±ata and some kind of, you know, modern dance - where people get in the ring with two white canes and just swing it out on each other.
(SOUNDBITE OF LAUGHTER)
CONAN: Lou, thanks very much for the call.
LOU: You're welcome.
CONAN: Good luck to you.
LOU: Thank you.
CONAN: Here's an e-mail from Damaris(ph) in Cincinnati, Ohio: "I suppose this may seem like an odd question, but is there any part of you that sometimes thinks maybe it would have been better never to see, to have been born blind, when you think of people like your family or others who you remember seeing before you went blind. Do you see them as you last saw them, or have they aged in your mind?"
KNIGHTON: Oh, yeah, that's a really good question. One of the strange things about losing your sight slowly over time, like I lost mine over 15 years, and it's kind of, you know, narrowed into a tunnel vision that's like looking through a straw now in one eye. And the rest of it's a big kind of Vaseline smear.
What happens is that there are people now in my life who I've never seen before. So I have kind of an imagination of what they might look like. And there's people who I have seen, but I haven't seen in years now, so - myself included. I haven't seen my own face in about six years now. So, unfortunately, I'm kind of arrested at a mid-20s age with kind of a goatee, I think. You know, that kind of thing.
And it's a strange feeling to think that you'll never see your final face, like you'll never see your final character as it's written on your face. And my wife still loves the fact that, you know, I still imagine her as a 23-year-old woman. And she says, apparently, she still looks the same. So, that's all well and good to me.
CONAN: Mm hmm.
KNIGHTON: But yeah, there are - you know, the strange thing is it does erode your memories. Like as your sight changes now, it changes the way you remember things, too, because you no longer can remember what it's like to see full and well.
So, you know, as you're going into the future, into a narrowing tunnel vision, it's also going into the past and narrowing those thoughts as well. It's kind of forward and back at the same time.
CONAN: Yet, you write, in another sense of memory, that you use your memory effectively as a geographic map. You memorize certain areas and use it much more than you used to.
KNIGHTON: Yeah, it's a strange irony that - you know, this neighborhood I live in - I mean, I essentially went blind in this neighborhood and I know it like the, you know, back of my hand. I could probably walk around it without my cane. And it's a very rich kind of mental map I have. You know, I know where they keep the cream in the restaurant, and all that kind of stuff.
But when I go out into the world and I travel, because I do travel a lot, you know, I go into cities that, you know, are vast and immense. And to me, they feel incredibly, terrifyingly small because I don't know anything in them. I have no mental picture of them. So going out in the world is, ironically, kind of going into a smaller sense of the world for me. I only know what I touch.
And, you know, the thing beside me could be a bank, it could be a mattress store. I have no idea. It could be, you know, a bus. You know, I don't know what's around me. So, it's funny. Staying at home is actually like being in a bigger world, you know.
CONAN: Let's get another caller. And this is Sam, Sam calling from Reno.
SAM: Hi, there.
CONAN: Hi, hello.
SAM: I have a friend who has RP. She's in the early stages. She was pretty recently diagnosed. But she's also about 80 percent deaf...
KNIGHTON: Oh, wow.
SAM: ...which makes life pretty interesting. And I frequently carpool with her. I love her to death, she's a great person. But I am getting - as she's degenerating in her eyesight, I'm getting more and more scared to be in the car with her. We've had...
CONAN: Carpool, you mean she drives sometimes?
KNIGHTON: She's driving?
SAM: Yeah, she drives sometimes, and...
SAM: ...she doesn't want to lose her independence, and I totally understand that. But I don't know how to tactfully say to her, listen, this is getting scarier and scarier. You're missing turns, we're almost getting in head-on collisions. And I guess my question is - as somebody who has gone blind eventually - what is the tactful way to approach this?
CONAN: I think you might want to pre-deploy the airbag.
(SOUNDBITE OF LAUGHTER)
SAM: Well, she's not that bad yet, she's actually very conscious of what's going on. She's greatly reduced her driving in the evening. She never goes out if the weather's bad. But...
KNIGHTON: Maybe you should scream a lot more and that might send the hint, I don't know. To get kind of Dr. Phil-ish about, you know, it's like I don't know what the advice would be. But, you know, it is something that happens with everybody with RP, and as you can tell from the show so far, there are millions of us now and we're going to take over the world soon.
(SOUNDBITE OF LAUGHTER)
KNIGHTON: But, what you need to know is that you have to actually make the choice to stop driving. They cannot make you stop driving, because you actually who are the one who knows when you really should stop. Because there is a period there when you are fine, I mean, you - the disease can be detected while you're still quite fully sighted.
KNIGHTON: So, but you have to make the choice to stop. And I gave it up, you know, when I could no longer, you know, comfortably live with myself in a car. The best way to independence is to actually live in a city. I mean, I could never live in a suburb. It would just be way too difficult. They're not built for bodies like mine. In fact, they're antagonistic to bodies like mine. Those sidewalks are decorative, that's all they're for. But, in a city, I mean, you can walk everywhere.
CONAN: Sam, I'm sorry.
SAM: We do live in a fairly suburban area, and that's a very interesting comment, thank you.
CONAN: Okay, Sam, good luck.
KNIGHTON: Part of the way we're going to take over the world too, is we're all going to move to the cities, right.
CONAN: That'll do it for you...
KNIGHTON: Very militant looking, you know, all these people with white canes everywhere.
CONAN: If everybody could just tap in time.
KNIGHTON: That's right, that's right. Yeah, we'd probably knock the world off its axis if we did that.
(SOUNDBITE OF LAUGHTER)
CONAN: Let's talk with Tye(ph). Tye's with us from Roseville, in California.
TYE: Hi, I'm an orientation mobility instructor, and I really...
KNIGHTON: Oh, you're the guy I never got training from.
TYE: Yeah, but I'm glad that you're talking on the air. I'm just curious. When you started working with teachers who are working with the visually impaired, how did you react to them, or did you?
KNIGHTON: I'm sorry, what do you mean, working with teachers with the...?
CONAN: People who taught you how to use that white cane, maybe.
TYE: Well, hopefully yeah.
KNIGHTON: Oh, yeah, the guy who taught me how to use my cane - I mean, this is back, you know, in the kind of early 1990s - it took about as much time from my life as morning toast. I mean I walked down and he gave me a cane and he showed me a couple things, and that was it. I was surprised, actually, how little instruction I got. But I was still quite sighted at the time.
So, I didn't work with it for very long, and, you know, I kind of walked out of there and put the cane in my bag and tried to avoid it as long as I could. Because, you know, once you pick up that cane, you just know you never get to put it down again. So, it kind of sat there like a rattlesnake in my bag and I just pretended it wasn't there for a long time, which was a bad idea.
CONAN: We, should explain those canes do fold up.
KNIGHTON: They do fold up, yes. Quick to retrieve, quick to open, camouflage.
TYE: Thanks so much.
CONAN: Okay, Tye, good luck.
CONAN: One of the things you also say in the book is that blind people with canes are cyborgs in training.
KNIGHTON: Yes, yeah we are, we are. We're a great image of an early cyborg. You know, we're moving towards a world where we'll probably have microchip retinas and so on and so forth. But, right now, it's hard for us, I think, to imagine that, you know, a cane is really a form of a technology. And a technology is anything that extends your body - you know, glasses, socks, you know, iPods, it doesn't matter. They extend the function of your body somehow.
And as I say, you know, we've harvested nuclear energy. We've put people on the moon. And the blind people have sticks. That's as much as the technology has gone, and as far as it's gone. And it really works. Like, it's a very elegant solution for a complex eye. You know, the dog is another solution for that. It's kind of soft technology - a soft, furry technology.
CONAN: Hungry always.
KNIGHTON: But it is a cyborg image, you know.
CONAN: Yeah, it is, but would you, if they came up - and I know there's research going on - if they came up with microchips that could act as retinas for you, would you use them?
KNIGHTON: Probably not yet, because I still have a little bit of sight left in one eye, and I'd be afraid of tampering with it. But, you know, I worry about that. Because I worry about things like, you know, once you've committed to taking one kind of platform like that - like say, replacing the entire retina with a microchip - you can't go back if they find a better way to actually regenerate the retina, right. I mean, you've kind of - you've made your choice. And at what point do you do that?
I mean, you know, I say in the book it's kind of like saying do you buy the Atari when it comes out, or do you buy the Nintendo? At a certain point, the technology's going to evolve again, and in it's earliest stages, I don't think I'd want to get involved with it, because, you know, I saw what happened to beta tape and eight-track tapes.
CONAN: Yeah, exactly. You don't want to be the man with eight-track eyes.
KNIGHTON: No, exactly, exactly.
CONAN: Let's talk with Lori. Lori's calling us from Portland, in Oregon.
LORI: Yes. I was just calling - I heard the lady that called a short time ago - I have four brothers, and out of my four brothers, three of them have retinitis pigmentosa. It's an x-linked RP. And the lady that called was recently diagnosed, and she was wondering and seemed to be kind of worried about how you stay connected with the world.
My oldest brother recently just got - it's called Windows-Eyes or Windows for Eyes. It's a program that he uses on his computer that has just done marvelous things as far as helping him feel like he's staying connected, and he's able to use the computer.
And the other thing that really seemed to help him several years ago was getting a dog and being able to get out and about with his dog. And I just was wondering if your guest had heard of this program, if it's something that he uses or could recommend to people.
KNIGHTON: The one I use is a program called JAWS, which is quite similar. And it's a voice program that reads your computer back to you, and it's quite and interesting thing to get used to a computer voice, because, you know, you can write really sexy stories and it sounds like Stephen Hawking is reading you smut. You know, it's kind of an odd relationship to develop to a voice like that, to get kind of an intimate ear for it, so you feel comfortable with it talking to you.
The weirdest thing that happened to me was that I got this voice program, and it's really the reason I can teach, because my students give me their essays and their stories and whatnot on disk, and I just open it up in a Word program and it reads it to me and I can type in commentary.
But, you know, what happened was after about a year of this, I started noticing my commentary and my marking was getting a lot angrier. It was kind of - I was getting more frustrated, and I realized it's because I felt like I'd been marking one student for an entire year. And I, you know, it was like why don't you know what a comma splice is yet? And it was simply that I'd been listening to one voice for, you know, a thousand papers.
And so, I actually change the voice now every semester to kind of refresh my relationship to my students, too. So, that's kind of - you know, and sometimes I switch it to a female voice, sometimes it's a male voice, just so I don't develop the habit of thinking that this voice is a person, which is actually what will happen. You start to develop it.
You know, like with my own book - it read me my own book back, and the first time I actually heard somebody read a bit of the book at a kind of performance thing I was at - somebody, an actor, read some of my book for me, I realized that was the first time I'd actually heard my own book in a human voice. That even when I was writing it, I'd only ever heard a computer read it. I've never even heard my own voice in my own head read my book. And it just sounded like such a different story when it had human intonation and human timing.
So, those computer programs are quite amazing, and they do open up the world. Braille's very isolating, but computer voices aren't.
LORI: It is. Do you have any other family members with the RP?
KNIGHTON: No, I'm a gene mutation. I'm the mutant in the family. Yeah, I was just a sporadic case of it, and my brother and sister torment me about it and they call me the gimp and I call them names and it's fun.
LORI: Sounds like you're adapting wonderfully.
KNIGHTON: I'm doing all right.
CONAN: Lori thanks very much for the call.
LORI: Okay. Bye-bye.
CONAN: Bye-bye. We're talking with Ryan Knighton about his book Cockeyed. You're listening to TALK OF THE NATION from NPR News.
And you talk about being the mutant, the X-Man. One of the things you...
KNIGHTON: The X-Man.
CONAN: Yeah, you do say - there is this urban myth that you slay in this book that your other senses compensate by becoming super - that you could, you know, smell, you know, a rose across town or something.
KNIGHTON: Yeah, I could touch your credit card and tell you how much debt you have on it, you know.
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KNIGHTON: No, it's completely untrue.
CONAN: That'd be actually pretty easy.
KNIGHTON: It would be nice. I'd probably get a really interesting job if that was true. But was actually happens is your brain burns new neuropathways between old cognitive functions and your remaining senses. So, for example, your brain won't allow you not to recognize people, but, of course, we primarily do that with faces and seeing.
So, when you can't see faces anymore, your brain starts to connect that function now to your sense of sound or smell. So you start to recognize people's voices more than you used to. So, it seems like you have super hearing, but all it is is you're giving a different value to those senses.
I wish I could hear more than I used to, unfortunately, because it would probably, you know, repair some of the damage from my punk rock days, but, you know, it just - it doesn't work that way. As far as I've experienced it, it doesn't work that way.
CONAN: Here's an email from Rochelle. "Not long ago, I referred a young man with beginning RP to a retinol specialist. So that the young man's parents could have some idea of what their son was experiencing, he suggested they wear two or three pairs of sunglasses, one set of lenses on top of the other and go out at night to get an idea of how their son was seeing at that stage of his condition. This helped them a lot to understand why he acted the way he did. They knew a 13-year-old doesn't typically hold his mom's hand in public at night, but they didn't know why."
KNIGHTON: Oh, poor kid. Oh, that's a hard one to recover from, holding your mom's hand. Yeah. No, that's actually a good way to do it. It's not the same as being blindfolded. You still can see a little bit of light, so it makes a difference. Put them out in traffic, too. That'll scare them.
KNIGHTON: That'll help them get the sense of why he doesn't like to go out much, you know. Gees.
CONAN: Gees. When you go out now, you still wear glasses?
KNIGHTON: I still wear glasses. I find I'm actually not wearing them very often now. I wear - I actually wear red sunglasses that are actually lenses developed for glacier skiers, because my eyes are so light sensitive now. It's like somebody's stabbing me in the brain with a chisel. So, I actually love living in Vancouver for the weather, because it's always gray. The grayness here is so wonderful. But right now, we're getting in touch with our inner Californian, which is really bothering me, but the primary weather of gray and rain is really easy on my eyes.
CONAN: We're going to take a...
KNIGHTON: It's what I prefer.
CONAN: We're going to take a short break and talk more with Ryan Knighton when we come back. Plus, an activist fight to save the last remnants of a primitive people threatened with extinction in the Indian Ocean. I'm Neal Conan. You're listening to TALK OF THE NATION from NPR News.
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CONAN: This is TALK OF THE NATION. I'm Neal Conan in Washington, and here are the headlines from some of the stories we're following here today at NPR News. President Bush has spoken publicly for the first time about the alleged massacre of civilians by U.S. Marines in Haditha, Iraq. The President said there would be punishment if an investigation proves there was evidence of wrong doing.
And the White House announced a policy shift on Iran. Secretary of State Condoleezza Rice says the United States is willing to join European partners at the negotiating table with Iranian officials if Iran suspends its uranium enrichment program. You can hear details on those stories, and, of course, much more later today on ALL THINGS CONSIDERED from NPR News.
Tomorrow on TALK OF THE NATION, this year's graduates are walking into one of the hottest job markets in years. After the cap and gown are gone, we'll look at what grads want and want to do. That's tomorrow on TALK OF THE NATION.
In a few minutes, an update on the Jarawa, a Stone Age people on the remote Andaman Islands in the Indian Ocean who are threatened with extinction. But first, let's continue our conversation with Ryan Knighton about his book Cockeyed, a memoir.
And Ryan, is there a politics of blindness? Obviously, we here in Washington D.C. are in the midst of another, you know, chapter at Gallaudet University and the deaf. Is there a politics of blindness?
KNIGHTON: That's a really interesting question, because it's one of the things I was looking for. And, well, as far as I can tell, there are several kinds of politics going on. One that I discovered was that blindness, unlike deafness, I don't think necessarily creates a culture of people.
It might create a community of people, but not a culture of people, because the deaf community shares a language and identity begins there. But with blindness, it's really a mobility issue and that doesn't necessarily bond you enough to make a culture, I think, and to share an identity.
On the other hand, though, I was kind of looking around and wondering, well, where did the identity politics of disability go? Like, you know, the feminist movement from the '60s, the civil rights movement, gay liberation, all of these things seemed to be peaking around the same time in history. And where was the disability movement?
And one of the things I found out when I was researching was that it was primarily carried by the veteran's movement, and it had a very different opinion, generally, of the Vietnam War. So, they weren't necessarily, you know, kind of aligned with the other identity politics movements that were going on in the '60s. It kind of galvanized around that.
So, I think it was also, you know, kind of left it to the workplace as a kind of workplace compensation issue for a lot people who are disabled by their jobs or whatnot. So, it's been very fragmented that way, I think, and doesn't necessarily have the same kind of civic place that the other identity politics do.
I think that's changing now quite a bit, but that's what I could find from the history so far. That's where we're at. And it's very difficult to talk about disability. I mean, I don't think disability is a really helpful term in many ways, because, you know, when you see that little handicap symbol on the washroom, I mean, that's apparently describing a group of people that would include, you know, me, Stephen Hawking, my former deaf partner, and a kid with ADD or dyslexia. And those things are such different realities and physiologies that I don't think they really are helpfully described as one group.
CONAN: Let's get another caller on the line. This is Chandra. Chandra calling from Gates Mills in Ohio.
CHANDRA: Hi, thank you for taking my call.
CHANDRA: Your program is so interesting. I'm a sighted person, but my question is - let me see if I can word this nicely - I really like to help people. If I see a person with a white cane - say at a crosswalk or something - I have a little ambivalence about wanting to offer to help them, because I don't them to think that I'm condescending or that I'm making them feel dependent.
Is it okay to do that, and is there a way to do it such that I don't convey that? Because sincerely, I just want to help them, but I don't want them to be insulted by my offer. And I'll take my answer off the air.
CONAN: Ok, Chandra, thanks.
CHANDRA: Thank you.
KNIGHTON: Thanks. Yeah, it's an interesting question. I've had a lot of people ask me that, and it's very hard to generalize an answer about how best to approach somebody, because, you know, depending on their personality - some people are more private than others. I've never taken it as condescension or as an intrusion. You know, I kind of, I find it more interesting that, you know, kind of the '80s politically correct movement has put us all into a paralyzed neurosis about how to approach one another. And it seems to me that I can't afford not having people's help because of their uncertainty. You know? Like when I use my debit card up here, and to punch in my PIN number for me, other people have to do it. They're really shy to do it, but I can't afford not to have them help me do it. I can't afford to keep my PIN number private.
So, I've noticed, though, that in Canada there's a difference, that up here more people narrate things to me. Like, if I'm standing at a corner, they don't want to touch me. They're afraid to do that. They think that's too intrusive. So they'll say, a little left, a little right, look out for the bus. Whereas, in the states, when I'm in New York, people will just grab me by the arm and practically piggyback me places without me even asking. Just, you know, pick me up and carry me across the street, basically. And they're much more physically comfortable with approaching me there, which I find, you know, really comfortable myself, but it differs.
CONAN: It's funny, I was reading your book last week, we were in New Orleans to do a show from there, and there's a story you tell about an incident that happened on the street in New Orleans, about two people who, at first, didn't realize that you were blind.
KNIGHTON: Yeah, they were, I believe that they were trying to mug me. And, they were kind of jostling my space and asked me what I got. They said, what you got? What you got? And I thought they were asking about my cane, because a lot of people do that. They think it's like a pool cue or nunchucks or something. And I said, well, I've got my cane, and it clearly wasn't the answer they wanted. And my partner kind of scooted me away and kind of made me hustle with her. And then these guys ran up after us again, and they came up and apologized.
And only from their apology did I really kind of understand that they were trying to mug me, and when they realized I was blind, they felt really bad about it. And, you know, that kind of put me in a weird moral conundrum, like how do you thank somebody for not including you in their violence by stereotyping you, or imagining you as a victim who is undeserving of being further victimized.
So it was kind of a weird moral complication, like, thank you for not including me in your violence, but I'd like to be a part of it too, because I don't want to be stereotyped. You know? It's kind of a strange thing...
You know, the hardest thing with the book is stories like that, that - I think a lot of people already imagine they've read this book before, that this is a typical kind of recovery narrative, and it's really not. And it's hard to kind of forefend that assumption in people. And that's one of those stories where I really was kind of hoping I could kind of get into some of the stuff we don't really talk about with these issues. These kind of peculiar moral dimensions that you end up in.
CONAN: Ryan Knighton, thanks very much for being with us today. We appreciate your time.
KNIGHTON: Oh, thanks for having me.
CONAN: Ryan Knighton's book is Cockeyed: a Memoir, and he joins us today from the studios of the CBC in Vancouver.
When we come back, the story of the Jarawa.