What vision loss helped Andrew Leland gain (Transcript)

[00:00:00] Chris Duffy:
You're listening to How to Be a Better Human. I'm your host, Chris Duffy. When I was growing up, my dad often said that the best advice he'd ever gotten was that life is mess management. At first, I thought that he meant that literally. My younger brother and I created no shortage of literal messes for him to manage.

I mean, one time, I had a friend over, and we decided we were going to make it a blizzard inside. So we took all of the tissues out of a tissue box and shredded them into the air. It was a beautiful winter wonderland… until my parents walked in, and then we were in big trouble. Okay, but as I've gotten older, I understand now that mess management isn't always literal.

Things happen in our lives unexpectedly. Messes happen. Life does not go according to plan and we have to figure out how to manage that. How do we adjust to it? Today’s guest, Andrew Leland, is a writer and an audio producer who has done a lot of deep thinking about transitions and life adjustments.
Andrew has been slowly losing his eyesight for years. He's had to figure out how that reorients his relationship to the world, to his friends, to his family, to his work. And I really love how Andrew talks about this stuff in a nuanced way. He's not afraid to live with and to accept some uncertainty. Whatever your current relationship to ability and disability is, I think that you're going to find a lot to relate to and to learn from in how Andrew thinks about this stuff and how he approaches the world. I know that I definitely did. Here's a clip of Andrew explaining his current situation.

[00:01:28] Andrew Leland:
Right now I have central vision, but I'm seeing the world through a pretty narrow porthole. So even though I can see these pears and that hippo, I'm legally blind. I have severe tunnel vision, but it doesn't look like a tunnel because your brain adapts really quickly to whatever you see.

Like, if the frame of the movie you're watching starts to shrink to a much smaller size, at first you'll be annoyed. “This sucks,” you might say to yourself. “I don't like watching this movie on this tiny screen.” Then your complaints will soften and disappear, and your brain will adapt to the new normal.

So every time I lose another chunk of vision, at first I feel super extra blind, sometimes scared or claustrophobic. My world is shrinking. But then, a week will go by. I get used to it. I don't feel so blind anymore. This experience of super gradual vision loss has given me time to think about what blindness is.

[00:02:20] Chris Duffy:
We'll be right back with more from Andrew about life transitions, sight, sound, and how to adapt to uncertainty right after this. Don't go anywhere.

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[00:02:38] Chris Duffy:
Today we're talking about ability, adapting to changes in our lives, and navigating the world in new ways with Andrew Leland.

[00:02:43] Andrew Leland:
Hi, I'm Andrew Leland. I'm a writer, audio producer, and editor, and I wrote a book called The Country of the Blind: A Memoir at the End of Sight.

[00:02:55] Chris Duffy:
Well, Andrew, I, I really, I want to say I started reading The Country of the Blind, and I genuinely did not put it down. I read it from start to finish in one sitting, which just almost never happens for me.

[00:03:04] Andrew Leland:
Oh my god. Wow. Thank you so much. That is the first time I've heard that. Uh, and that is very exciting.

[00:03:11] Chris Duffy:
Can you just talk to people about what, um, your condition is and, and how it works?

[00:03:15] Andrew Leland:
Yeah. I have a condition called retinitis pigmentosa or RP. And it is a degenerative retinal condition where the rod cells in the retina, which are responsible for peripheral vision and night vision, um, gradually die over the course of decades. But my experience is a pretty typical one of RP, which is that I was diagnosed as a teenager where I first experienced it as night blindness.

So, you know, friends would be walking on the trails at night or, you know, going to movies and, and just seeming way more able to navigate those low light situations than I was. And then over, over the course of years, it started to encroach during the day as tunnel vision to the point where now I have about six or seven degrees of central vision left.

And in that central vision, I can see pretty well. You know, there's some associated smudges that are caused by cataracts or swelling in the macula. Long story short, I'm looking at the world through a toilet paper tube that doctors and medical authorities assure me will continue to narrow at an, an unspecified date, but probably over the course of the next decade or two.

[00:04:27] Chris Duffy:
The book has a real journey and it has such a good sense of humor and, and also a real depth of reporting. Before I read your book, I came into this thinking we were going to talk about sight and senses and how we experience the world and how that changes, uh, when one of our senses is no longer accessible. And I, I still think we'll talk about that, but really I think that your memoir convinced me that what the actual thing to talk to you about is how we can adapt to a transition in our life regardless of what that transition is.

[00:05:01] Andrew Leland:
You know I think I sat down to write the book thinking, “Okay, we're gonna get real wonky about the visual made auditory,” you know, and how one can experience the world through different senses. And I did write plenty about that, but I share your sense that ultimately the book is about transition and identity and the experience of identity as being far less fixed and, uh, far more malleable and transformative in, in, in the experience that I'm going through and, but also now that it's been out in the world for, for a little while, I think in, in everyone's experience in some degree.

There was this really wild 24-hour period a week or two ago where one after another, three different trans friends of mine wrote to me saying, like, “Your book is a book about transition and like your, your description of your transition from sightedness to blindness connected to my experience of, of gender transition.” In three very different ways.

And, um, one thing that struck me was the, the way that we look at identity as this binary situation, right? Where it's like, “I was this kind of person. Now I'm this kind of person.” And one friend of mine said, you know, the model of, of coming out of the closet, let's say, where it's like you were in the closet and then you're out of the closet and so you're done.

But their experience of, of gender transition was much more like this evolving process that doesn't necessarily have a linear, you know, you start at A, you end up at B, and then that's certainly been my experience of blindness. It's a primordial stew of, uh, backwards and forwards and lateral moves.

[00:06:31] Chris Duffy:
Well, as you're talking about how the experience isn't a binary, you've also talked about how blindness isn't a binary itself.

[00:06:38] Andrew Leland:
Yeah. Yeah.

[00:06:38] Chris Duffy:
That a lot of people think that there are people who can see and then there are people who see absolutely nothing. It's just pitch black. And you talk about how that is medically and physically not accurate.

[00:06:49] Andrew Leland:
Yeah, yeah. I think the figure is something like 15 percent of blind people have no light perception at all, which means that the vast majority do see something. And there's this phrase that gets used a lot in blind circles, like “useful vision” or “usable vision”, you know, and people will sometimes use that as a shorthand to be like, “Oh, well, I have no usable vision, but I have light perception.”

And, you know, all of it is usable in some way. Like I was talking to a blind guy yesterday who was telling me that, you know, indoors, as he's navigating, being able to see a really bright light, you know, let's say from an open doorway, if you're in a dark cafe, is still pretty useful for him, and I think from the outside, looking at it as a sighted person, you know, and even for me, looking at it as like a low vision or whatever you want to call me, legally blind person, you know, somebody with that degree of vision does feel like capital-B Blind compared to what I have now, where I have a couple degrees of useful vision that I can see.
But even with deep knowledge of the fact of the reality that it's a spectrum, I still think one encounters this sort of internalized feeling of like, “Am I really blind enough to be part of the club? Or can blindness include the experience of sight?” And that's the sort of zen kōan, you know, sort of mind blowing paradox that I continually run up against, which is the fact that I'm gonna have to accept that my blindness does include sight and probably will include sight for many years to come.

The thing about having vision while very gradually bec oming blind is it's pretty easy to, to say like, “Well, I still have vision though, so I'm not actually blind.” And the risk is that you end up really high and dry, you know, and by the time you are really blind or blind enough to not be able to do, you know, these sort of basic tasks like, you know, navigate a new environment or use a computer or, um, you know, use your phone or, uh, any number of things like that, you know, that then, then you're starting from scratch and that that's not the best time necessarily to start learning those things.
So there's this paradoxical thing that I've had to go through over the last 10 years where, you know, it started out with the cane and I thought, “Ah, what a fraud I am carrying this cane when I can, like, see the Don't Walk sign.” And I think it would be so much easier if a doctor called me and said, “Andrew, we just got the test back. You need to use the cane from now on.” But that doesn't happen.

[00:09:02] Chris Duffy:
There's also this emotional, social and community part.

[00:09:06] Andrew Leland:
Yeah.

[00:09:06] Chris Duffy:
Which is a real gain, not a loss at all. But that only when you kind of claim the, the title or it, or, you know, are willing to say, “I am part of this community,” can you build these relationships with other people who just get it, get it naturally. You don't need it to be explained to them.

[00:09:21] Andrew Leland:
There is a real difficulty in finding that community, you know, and, and I write about my experience in the book of going to this meetup when I was living in Missouri at the time and, and just feeling so alienated from the group that I found. And they just didn't feel like my people.

[00:09:35] Chris Duffy:
And this was a meetup of, of people who are visually impaired.

[00:09:36] Andrew Leland:
Blind people. Yeah, yeah, yeah. Part of it was this sort of ableism that I had as, like, a person who had spent most of his life as a non-disabled person being like, “Whoa, what? Like, this is my crew now? I don't know.” And a big part of it was the fact that I just didn't do my homework.

And I wasn’t, like, engaging with them and, and talking to them as humans. You know, I said I was just sort of standing at a remove. And it took me 10 years and really writing the book to where I forced myself to have this immersion into various blindness communities until I sort of found my, my particular constellation.

And, and so some of the things that I'm hearing from readers is like, “Yeah, like I've never wanted to hang out with blind people.” And part of that is there's like a lot of internalized ableism, like, “Those people are losers. I don't want to be that.” But part of it is that, you know, there are just segments of that community that are treating their blindness and wearing their blindness in a way that is unappealing. There's communities of blind people who are very focused on cure and who spend a lot of their time talking about the latest clinical trials that they might be eligible for, and the hot doctors you gotta get with, you know, and like, more power to them, but it's, it's a real turn off for me.

I just find it incredibly depressing to focus on, like, the hope of saving my sight when the people I found that I connect with are the, like, blind hackers for some reason like the people who are just like geeks about like, “Oh, I scanned this book and then OCRr'd it and then I listened to it at 500 words a minute on my screen reader while also reading it in Braille,” like those people are like the wizards who I want to hang out with. And so, you know, not to say like one's bad and one's good, but the blindness community is, is not a thing.

[00:11:16] Chris Duffy:
Um, I’m curious to get you to give some advice.

[00:11:19] Andrew Leland:
Alright.

[00:11:20] Chris Duffy:
If you can give advice to yourself five years ago, what advice would you give?

[00:11:22] Andrew Leland:
Yeah. This is advice that I got from the me of the future who, who’s named Will Butler and he's like totally my blind Yoda buddy. Um, but I would say stop wondering and worrying about when you're gonna become blind and accept that you're blind now and that all the things that you're going to need when you're actually blind, you can give yourself now. Get your braille skills up, get your cane skills up, learn to use a screen reader, but also just on, on the more emotional side, accept it and, and accept that it's an ongoing process.

[00:12:01] Chris Duffy:
I, I’m also struck by how that advice is directly applicable to, you know, experiences like aging. Um, there's a lot of prejudice. There's a lot of ageism. There's a lot of fear. There's a lot of sense of like, “Oh, I'm going to be less, um, valued by society.” And yet, like, we're headed there. Like, that's where we're all headed. You're lucky if you get there. And to like, to fight against it can only make you, like you say, less prepared and also less happy in the moment and in the, the moments to come. That the more that we accept where we're at, the more we can actually, like, be full and present and also have a richer experience.

[00:12:38] Andrew Leland:
Yeah, yeah, I mean, I think if I had to boil it down to a principle, like the fundamental thing is really just letting go of absolutes. Like I read with my eyes and with my ears and with my fingers, and I think it's so… I’ve struggled with this because I'm like, “I gotta just switch. I gotta stop using my eyes. I'm cheating when I use my eyes because I need to use the non visual techniques.”

And more and more, I have come to accept like, you know what? There are situations where it still makes sense for me to use magnification and read visually. And there's times when it's important to push myself and read tactilely.

And so letting go of absolutes is so difficult. But I think there's such richness when you can accept, like, “Oh, you know what? Being in this in between space actually is giving me access to more rather than, than the difficulty of being in that liminal, weird, ambiguous space.”

[00:13:26] Chris Duffy:
I think that’s really important. I think it's a profound point there because, you know, so much of life is liminal. For someone who is out there, what are some of the things you've learned that for yourself have helped and might help them too as they’re, they’re coming to terms with a transition?

[00:13:40] Andrew Leland:
You know, the idea of acceptance is kind of trite. You know, for me, accepting blindness also means accepting the vision that I still have. And like, I write in the book that I feel more stymied by the vision I have sometimes than the vision I've lost. And I think one thing that took me a long time to realize was that accepting blindness also meant accepting the sight that remains. You know, if, if you're trying to broaden this idea to anyone going through a transition, I think part of acceptance does involve accepting the fact that you're, that you're in the middle, which means accepting some of the old identity, too. Not just like the place you're heading towards, but the place you actually are in the moment, which includes, confusingly, the old stuff too.

[00:14:27] Chris Duffy:
We're going to take a quick ad break, but we'll be right back with more from Andrew after this.

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[00:14:45] Chris Duffy:
And we are back. So Andrew, another piece of the transitioning and changing experience here is that you're experiencing this with a partner. And if you have a life partner, the things that affect you also affect them. And you write really beautifully about this.

[00:15:02] Andrew Leland:
One of the things I've learned is the importance of imagining one's way into your partner's subjectivity, into their experience. I think it's so easy when you're so intimate with someone, you know, you see them every day. You're with them all day, every day, to assume that they get what's going on with you and to assume that you get what's going on with them.

I mean, this is like the cliche of “communication is important”, but I think it's really about questioning, you know, and making sure that you've got a really actual factual and deep sense of what the other person is experiencing rather than just being like, "She frowned. And I know what that's all about.”

For Lily, I think she doesn’t have any framework for what blindness is or what low vision is, and neither did I, and so we're really, on the one hand we're learning it together. On the other hand, like, she's always a couple steps behind me, and I think it's taken a lot of work for her to like get into my head and, and then for my part, I'd had no appreciation for how hard that would be for her.

It, it required me to, to have an appreciation for how hard it was to kind of get into my head and to understand how blindness was affecting me. Not just so that I could deal with it, but to then be able to communicate to her how I was feeling, all the complexities of both emotional difficulties, but also just the practical things. That very complicated process of like the two way street of like imagining ourselves into each other's minds in a way that allows us to work together and grow together is, you know, that's something that I think we'll be doing for decades to come. But it's, it's so crucial.

[00:16:40] Chris Duffy:
When my wife, Molly, and I got married, it, you know, we did some traditional vows. And then we wrote some vows of our own. And one of the things I said was, you know, “I won't expect you to be able to read my mind, even though it'd be pretty cool if you could.” And, like, involuntarily, totally unplanned, the person who was marrying us was like, “Oh no, you don't want that. No, no, no, you don't want the mind reading.”

[00:17:00] Andrew Leland:
Yeah.

[00:17:00] Chris Duffy:
And obviously, you know, even everyone laughed. And in the moment, it was like, yeah, that's true. You don't want that. But in some ways we do want that, right? We want the other person to just, like, know what we feel and not have to tell them. And yet that's impossible. And I think that, that comes across really powerfully as like when you are experiencing something, especially something internal, you have to tell her, and she has to tell you the same way.

[00:17:21] Andrew Leland:
She's a writer too. And for both of us, like, we have to read our own mind, and reading your own mind is actually, like, a surprisingly difficult thing to do. You know, you think like you've got total access, but like as a writer, let me tell you, like, it's a hard work. And, and so in a way, like, this process of writing this book was a way of like reading my own mind of being like, “What am I feeling about this?”

And only by doing that could then Lily, then, a very excellent reader that she is, sit down and read my book and, and you know, an early draft of it, and the manuscript really evolved with her help.

[00:17:56] Chris Duffy:
There's this part in the conclusion where you say, “One of the most surprising discoveries I've made is how absolutely ordinary blindness can be. It's hard for non disabled people to appreciate this, that something as radical as not being able to see can fade into the background.” You know, reading the way you write so beautifully and tenderly about your marriage, that's something that really comes across is that like, while you are experiencing blindness, that's not, like, the number one adjective that comes to mind when you think of yourself, right? Like, I'm a dad and a husband and a person first. And I think sometimes people forget that when we, when we experience another person through the lens of their difference.

[00:18:32] Andrew Leland:
You're exactly right about it. So like, you mentioned being a dad, like surely there are times when I'm with my kid or I'm, you know, at his school or whatever and I'm like, I am in dad mode, and I would describe myself as a dad, but, like, you know, plenty of other times in my life, that is not the most salient thing about me. And, and that's true of, of blindness as well. Like there's a line that I quote from the blind writer Georgina Kleege, who, who says, “On some days, it matters less than the weather.” And I love that because it's true.

And, um, and, and yet, I think when you're talking about an identity that is very stigmatized, that's the painful experience of like walking down the street as a dad, and then suddenly somebody saying, “Oh, there's a, um, there's a curb in front of you.” And suddenly you're a blind dad. And, you know, you don't want to be you didn't need to be. And, and the sort of experience of stigma has forced you into that position. But, but it's true that like, in my house, doing my thing, like blindness, except for the fact that I've forced myself to write about it all day long every day. But, you know, aside from that, yeah, it matters less than the weather many days, like Georgina said.

[00:19:37] Chris Duffy:
Yeah. And I do think it's also really important to, to note, uh, and you bring this up many times in the book that for, for many people, it's far worse than just, uh, someone saying like there's a curb in front of you, that there are real documented cases of, you know, people taking away children from parents because they don't believe that a, a blind parent could possibly take care of a child, which is demonstrably false, right? Of course, a blind parent can.

[00:19:59] Andrew Leland:
Yeah, absolutely. So many examples. The one that comes up a lot that I hear about from many, many blind people is “I don't think a blind person can handle calculus.” Like, “I don't know how I'm gonna teach calculus to a blind kid. So you should enroll in a different class.” You know, and if you think about the horrifying unemployment statistics around blindness, you know, and trying to think about where that comes from, you know, if you think about the, the real prevalence of that experience of a blind person in school, just saying, “Eh, maybe you should just, like, stick to, uh, English class, because I don't even really know how you're going to do this,” like, of course, blind people are going to end up internalizing some of that, that feeling of incompetence, and, and yeah, just that the way people perceive you can, uh, can really limit you, and I think, I think it's a tragedy.

[00:20:43] Chris Duffy:
You brought up before your, your friend Will Butler, who comes up a lot in the book. I will admit that I have absolutely always immediately latch onto anything that is like comedy or humor related because I'm a comedian, and I experience the world often through like jokes and seeking out funny things. But the fact that Will has a podcast of his own where he explains to people who can't see, um, what memes are and why they're funny?

[00:21:06] Andrew Leland:
Yeah.

[00:21:06] Chris Duffy:
I just thought like that is a hilarious idea for, um, a podcast and a fantastic one. And you, you give an example in the book that just made me laugh out loud, where he's describing like a sad, exhausted SpongeBob, who then says like “Me after putting the fitted sheet on my bed.”
[00:21:21] Andrew Leland:
Yeah. Yeah. I love it because if you think about, like, accessibility for blind people, which is to say, like, what do blind people need technology or accommodations to access? It's a mind-bogglingly vast category, right? Because it's just like visual information. If you think about, like, the visual information, like, what falls into that category, it's, like, the whole world, it feels like sometimes, right?

Like, the internet, you know, every meme, every image, every photo, you know, every film, every slide deck, and it's just, like, you know, it really, it melts my brain, because I'm just like, how are you ever going to be able to make all of that accessible? And so, I love that Say My Meme podcast project, because it's just like, okay, well, let's start somewhere.

And, and I think a blind person on Twitter, their experience often is like you see a tweet and somebody's like, “Me.” You know, and then, and then the screen reader just says, “Image,” you know?

[00:22:13] Chris Duffy:
Yeah.

[00:22:13] Andrew Leland:
Or like “12.JPEG” and you're, and then you see like 400 comments where people were like, “Me too, oh so hilarious, love it,” you know, you just, you feel so excluded. So like, it's this like brilliant public service, uh, to say, okay, let's, uh, let's make the memes accessible.

[00:22:29] Chris Duffy:
It also ties into a thing that I had never thought about before, but makes so much sense, which is that non disabled people often come up with solutions—I’m going to put that in quotes, right?

[00:22:37] Andrew Leland:
Yeah. Yeah.

[00:22:37] Chris Duffy:
“Solutions” that are actually what they think a disabled person should use.

[00:22:42] Andrew Leland:
Yes.

[00:22:42] Chris Duffy:
So it's like, well, the only type of, uh, text that I would need to put for an image is for like art that is in the Metropolitan Museum of Art.

[00:22:51] Andrew Leland:
Right.

[00:22:51] Chris Duffy:
And then we talk about how this is a philosophy professor who's blind, who hired a hired an assistant to read junk mail to him.

[00:22:57] Andrew Leland:
Yeah. Yeah.

[00:22:57] Chris Duffy:
Every single line of every piece of junk mail because he was delighted by the absolutely nonsense things that would get printed in like an ad for, you know, uh, uh, uh, an exercise equipment or something like that.

[00:23:09] Andrew Leland:
Yeah.

[00:23:09] Chris Duffy:
And when I think about what makes my experience of the world joyful, so much of it is that random stuff. Like I would, I don't want to lose the random stuff. And—

[00:23:20] Andrew Leland:
Yes.

[00:23:20] Chris Duffy:
It’s so easy to think we should just give people broccoli and forget that they want other pieces too. Nothing against broccoli.

[00:23:24] Andrew Leland:
Yes. No, 100%. I mean, I feel that way so strongly. Uh, just as a writer to me, like to get paid, you have to make an argument and, you know, have a hook and talk about something timely. But like, that's just getting through the door. Once I'm through the door, all I want to do is write about weird exercise ads and, you know, just like the funny, strange little details.

[00:23:45] Chris Duffy:
Uh-huh.

[00:23:45] Andrew Leland:
Like, you know, it's a big ask to say like, okay, well, how in making visual culture accessible to blind people, how can you make those fun details accessible too? But it's not impossible. There's some really interesting artists out there who are approaching it, not as a compliance based approach, you know, which I think is so common in the sort of post-ADA era of basically saying like, “We don't want to get sued. So we're going to do X, Y, and Z to make our building, website, whatever, accessible.”

That's important. But, but I think when you only come at it from a compliance based approach, you just get broccoli, like you say, and as a result, you do, you're not only creating a sort of exclusionary and, and really boring approach, but you also, it's another form of, of condescension or paternalism to say, “This is what you should be interested in.”

You know, if you look at the first libraries for the blind, the first audio books were, were designed for blind people. You know, it's all like great books, Shakespeare stuff and, or like inspirational stuff. Like these people are probably like really sad about being blind. So like we should give them the sort of 1930s equivalent of like self-help literature. And, you know, the reality is like blind people wanted to read romance novels and Westerns and, you know, junk. Like, why not?

[00:24:57] Chris Duffy:
One thing also that, that opens the door to is this idea of, um, of humor and jokes. And, uh, I thought there's a really interesting distinction that you made between, like, a good blind joke and, uh, a bad blind joke as you experienced it when you were at a convention or a conference of, of thousands of other blind people.

[00:25:17] Andrew Leland:
This is something that I, I heard about from one of the former presidents of one of the main blindness advocacy organizations, the National Federation of the Blind. He had this really specific description of acceptable blind humor and unacceptable blind humor. And the way he described it was unacceptable blind humor trades on stereotypes.

So like Mr. Magoo, the old cartoon where he's like this, you know, extremely nearsighted guy who's just like driving his car over, you know, electricity wires into the ocean and just creating mayhem, you know, that is perpetuating a stereotype of blindness as buffoonery, as ignorance.

Acceptable blind humor, he said, trades on absurdity. And I was really struck just like spending more and more time in blind spaces how much blind people, maybe by necessity, really embrace absurdity and like the absurdity of situations that blindness can get you in. And you know, I, yeah, like, I think you sort of have to at a certain point, right? Like, it's, you, if you have a choice of either saying, like, “I just, um, apologized to a lamppost and that's sad and I'm so sad that I am… I'm so embarrassed that I'm a buffoon,” or “It's kind of like kind of funny that I was like so polite and deferential to that large piece of metal,” you know, like why not laugh?

And so, so for him his example, which is kind of like, you know, there's a little bit of violence to animals. So I'm not crazy about the joke, but you know, a blind guy walks into a department store and picks his guide dog up by the tail and start swinging it around over his head. And the store clerk rushes over to him and said, “Sir, can I help you?” And he says, “Oh, no thanks. I'm just looking around.” You know, and that's acceptable blind humor. It's absurd.

[00:26:56] Chris Duffy:
I gotta say, I, I, I certainly do not support anyone doing that to a dog, but that is, I feel a technically wonderful joke, like—

[00:27:04] Andrew Leland:
Since you’re a comedian and you’re interested, I'll throw you another one, uh, that I heard recently.

[00:27:07] Chris Duffy:
Oh, please.

[00:27:07] Andrew Leland:
There’s a blind guy at a Passover Seder and, uh, someone passes him a basket with matzah bread in it and he picks it up and runs his fingers over it and he says, “Who wrote this shit?”

[00:27:19] Chris Duffy:
That is an amazing joke. Oh, that's an amazing joke.

[00:27:23] Andrew Leland:
First time I told it, I'm a little, I'm still working it through.

[00:27:25] Chris Duffy:
Oh.

[00:27:25] Andrew Leland:
The next time I tell it, it'll be better.

[00:27:27] Chris Duffy:
It’s a great joke.

[00:27:27] Andrew Leland:
Shout out to Chris Lydon who told me that one.

[00:27:29] Chris Duffy:
Several years ago, my wife was dealing with some injuries and some health conditions that were really mysterious and she essentially it was really difficult for her to walk, especially to walk longer distances. And so we got a temporary disability placard for the car, and it was real. We hadn't faked anything.

[00:27:49] Andrew Leland:
Yeah.

[00:27:49] Chris Duffy:
And yet it was this confusing visual situation where when we parked the car in a disabled spot and got out—neither of us was in a wheelchair. Neither of us was using a cane and you can't see pain. You can't see intense pain.

And I remember so clearly one time we parked to get tacos at this taco stand and we parked in a disabled spot right in front and we got out, and I could see, or at least I interpreted the looks that I was seeing from people as surprise.

[00:28:16] Andrew Leland:
They were real. They, they were real. Yeah.

[00:28:17] Chris Duffy:
Yeah. Eyes of surprise and judgment. And what I was, I had this fantasy, which, you know, I can, this is years ago and I can still remember this so clearly that someone would come up and say something to me so that I could just yell at them and be like, “You don't understand. This is real. You can't see pain. It's real. You think you're better than the state of California at determining disability?”

[00:28:30] Andrew Leland:
Yeah. Yeah.

[00:28:35] Chris Duffy:
You know, and, and of course that didn't happen. And so it was just this internal fight that I had with, you know, an imagined aggressor. But—

[00:28:43] Andrew Leland:
Yes.

[00:28:43] Chris Duffy:
Uh, I, I think that that, that gray area can be so difficult because it's almost easier to just have people be like pitying you and then be like, “I don't need your pity,” rather than to have people doubting you.

[00:28:54] Andrew Leland:
Oh my God. Yeah. And that's, that's such a, that's exactly the experience I think of, of not just being low vision with a cane, but, but of so many disabled people. And it's something that I'm actually still thinking through and researching because it's, it's such a common experience of disability that, that, that pendulum between pity and skepticism.

You know, people police disability constantly. And it happens that, a, on a governmental level right where, where people are applying for disability benefits and being rejected and there's all kinds of folks who are falling between the cracks of that system because their disabilities don't necessarily match up with the sort of established, you know, bureaucratic definition of it.

And then there’s, there’s, there's experiences like yours, you know, where you could just see the skepticism. So in the same way that I need a white cane, even if I can see stuff, there are tons of people who are wheelchair users who can certainly stand. But a wheelchair is still a crucial tool for them to make it through their day. You know, but as soon as somebody sees a person in a wheelchair stand up, it's like, oh, fraud caught you, you know, busted.

And I still am thinking through the reasons for that. Like, why is it that disability creates this really visceral response from people of, of wanting to police it or wanting to doubt it and you know, what is it? Is it about a skepticism about like, you know, you're trying to get sympathy and you only should get the sympathy if you deserve it? Is it about trying to get benefits or trying to, you know, not be a productive member of the workforce? And I don't know, I'm still thinking it through. I don't know if you have any ideas.

[00:30:23] Chris Duffy:
I, maybe it comes from some fear and like fear and like being like, if, if that's not real, then it's easier to accept, right? That like, if that's a person acting, then I don't have to be worried about my own vulnerability. I don't understand where it comes from. I really don’t.

[00:30:36] Andrew Leland:
There was a really horrendous trend on Tik Tok recently where a bunch of people were—it basically became a meme to say that you thought that Helen Keller was faking her Deaf-blindness. And then they would just like name some of her accomplishments and be like, “Really? I don't think so.”

You know, like Stevie Wonder, there's people who doubt his blindness, like all of these incredible achievements, like, “A blind person, really? Could they do that?” And, you know, I think some of the doubt is that incredulity at the fundamental competence of blind people or disabled people.

[00:31:06] Chris Duffy:
I don’t want to speak for everyone in the world. I know there's people who listen to this podcast who don't live in North America, but in North America, um, there's such deeply ingrained ableism. I see this in myself all the time, you know, in, in the words that I use without thinking and in the way that I perceive people's abilities, but it's so deep that I think that, you know, the idea that a person could have, like you said, any sort of, um, independent, productive life is a radical idea to popular culture.

[00:31:35] Andrew Leland:
Unlike a lot of other marginalized identities, disability is one that, if you're alive for long enough, you probably will join the club, right? Or whether it's in, in later years or just from injury or, you know, acquired illness.

So it is a club that anyone can join and most people will if, if you're around the planet for long enough. So there is skin in the game to try to think through these things now, both out of, out of a compassionate sense of, of other people who are experiencing it, but because it might be you someday too.

[00:32:05] Chris Duffy:
Well, Andrew, thank you so much for being on the show. Your book is fantastic. This conversation has been, uh, incredible. I really, really am grateful for you making the time.

[00:32:12] Andrew Leland:
Oh, likewise. This has been a delight. Thanks, Chris.

[00:32:16] Chris Duffy:
Thank you so much to today's guest, Andrew Leland. He is the author of The Country of the Blind: A Memoir at the End of Sight.

I'm your host, Chris Duffy, and you can find more from me, including my weekly newsletter and upcoming live shows at chrisduffycomedy. com. How to be a better human is brought to you on the TED side by Daniela Balarezo, Chloe Shasha Brooks, and Banban Cheng, who support any and all necessary accommodations to make sure that everyone gets tacos.

This episode was fact checked by Julia Dickerson and Matheus Salles, who are currently working overtime to confirm that no one has mass produced Braille-based matzah.

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