EP. 86: REFLECTIONS AT THE END OF SIGHT

WITH ANDREW LELAND

Oct 31

WITH ANDREW LELAND

A writer discusses what it’s like to live with progressive vision loss, explores the subjective experiences and culture of blindness, and discusses how he finds a renewed sense of richness in the world.

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Episode Summary

Imagine if, as a teenager, you were told that you would lose your vision over the course of a few decades. How would you approach your life, your world, and the people in it? Joining us to discuss these questions is writer Andrew Leland. Andrew has retinitis pigmentosa, a condition that affects the retina's ability to respond to light, leading to progressive irreversible vision loss. Andrew's works have appeared in The New York Times Magazine, The New Yorker, and elsewhere, and he is the author of a 2023 memoir titled The Country of the Blind: A Memoir at the End of Sight. Over the course of our conversation, we explore the culture and language of blindness, what it's like to grieve the gradual loss of sight, how visual impairment changes the appreciation of beauty, how blind individuals can harness the full richness of the human senses, and more. Ultimately, Andrew's deeply personal stories and sharp insights remind us to see the dignity in those living with disabilities, both visible and invisible.

Andrew Leland’s writing has appeared in The New York Times Magazine, The New Yorker, McSweeney’s Quarterly, and The San Francisco Chronicle, among other outlets. From 2013-2019, he hosted and produced The Organist, an arts and culture podcast, for KCRW; he has also produced pieces for Radiolab and 99 Percent Invisible. He has been an editor at The Believer since 2003. He lives in western Massachusetts with his wife and son.
In this episode, you will hear about:
• 2:16 - Andrew’s journey with vision loss starting from his teenage years
• 6:58 - The isolation of having a condition that most around you cannot experience or fully understand
• 11:56 - How blindness exists on a spectrum and in many varieties
• 13:23 - The milestones of gradual blindness that Andrew encountered over the course of his life
• 16:49 - Andrew’s advice for how be tactful when interacting people with disabilities such as blindness
• 25:48 - Andrew’s reflections on the internal psychology of ableism
• 28:12 - How blindness has altered Andrew’s personal relationships
• 30:16 - How Andrew’s experiences as a sighted individual affects his current perceptions with low vision
• 32:57 - How Andrew’s loss of vision has shaped his relationship with his other senses and how visual impairment affects the appreciation of beauty
• 44:19 - Andrew’s advice to clinicians on how to best meet patients where they are with their disabilities
Henry Bair: [00:00:01] Hi, I'm Henry Bair.
Tyler Johnson: [00:00:02] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to The Doctor's Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build healthcare institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across healthcare, from doctors and nurses to patients and health care executives those who have collected a career's worth of hard earned wisdom probing the moral heart that beats at the core of medicine. We will hear stories that are by turns heartbreaking, amusing, inspiring, challenging, and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Henry Bair: [00:01:03] Imagine if, as a teenager, you were told that you would lose your vision over the course of a few decades. How then would you approach your life, your world, the people in it? Joining us to discuss these questions is writer Andrew Leland. Andrew has Retinitis Pigmentosa, a condition that affects the retina's ability to respond to light, leading to progressive, irreversible vision loss. Andrew's works have appeared in The New York Times Magazine, The New Yorker, and the San Francisco Chronicle, and he is the author of the 2023 memoir titled 'The Country of the Blind: A Memoir at the End of Sight. Over the course of our conversation, we explore the culture and language of blindness, what it's like to grieve the gradual loss of sight, how visual impairment changes the appreciation of beauty, how blind individuals can harness the full richness of the human senses, how we can tactfully approach issues about blindness, and more. Ultimately, Andrew's deeply personal stories and sharp insights remind us to see the dignity in those living with disabilities, both visible and invisible. Andrew, thank you for joining us and welcome to the show.
Andrew Leland: [00:02:14] Thank you for having me. I'm excited to talk.
Henry Bair: [00:02:16] Let me just start off by saying that I recently finished your book, The Country of the Blind. And I'm particularly struck by how even as an ophthalmology resident, how little I really knew about the subjective experience and cultural aspects of blindness. I'd like to begin similarly to how your book began, which is to ask you, can you share with us your early life story, and particularly the moments that made you first realize there was something a little amiss with your vision?
Andrew Leland: [00:02:44] I was a teenager. I was probably around 15 years old or so. It's interesting because that's the age where one begins to be a little more independent in the world. So I was going out on the darkened hillsides behind my friends houses, you know, to smoke pot. Probably too young to be doing that from a clinical perspective. And noticing that night vision, which is a category of vision I hadn't even really considered before. Right. It's just like, oh, you know, you go do something in the dark and you, you do that in a slightly different way. But I was just so much worse at seeing in the dark than my friends. And it was this sort of gradual accumulation of these experiences that also began to gradually intensify. So going to the movies just became more and more difficult and inconvenient and just I would look in astonishment at my friends or family who would just effortlessly go run to the bathroom or grab, you know, a refill on their soda in a movie theater. And this went on for years, you know, in my teen years, to the point where I thought maybe there's actually something wrong here. And this was the 90s and my dad had bought me a modem. And so I feel like I was probably a pioneer in like the now daily occurrence of like, go on the internet and self-diagnose yourself or something because it was like, you know, I was using... It was like before Google, right? I was using like web crawler or something. Lycos. But anyway, I found some websites, and I don't think there are a lot of reasons why one would have like, you know, sudden onset of night blindness in the teenage years, like it's like or retinitis pigmentosa was like a pretty high hit even then in the early web.
Tyler Johnson: [00:04:11] Which is saying something because the web back then knew nothing. Right? You had to like, beg and plead and coax to get it to tell you anything. Right?
Andrew Leland: [00:04:17] Right. It was all like web pages of Bart Simpson quotables and stuff. But then somewhere nestled in among there was a description of, you know, I'm sure on that website I read like, you know, ends in total blindness or, you know, likely to result in that. But, you know, because I was self diagnosing it and just because I was like a stoned teenager, like I didn't put a lot of weight in that prognosis. And it just... It intensified more. And when I say intensified, I mean that on this like very glacial pace of this disease, which is just like three years would go by and I'd be like, wow, you know, that's it's even harder to hang out in low light situations or even restaurants now, you know, things like that.
Andrew Leland: [00:04:55] And finally, I think I was around 19 years old. I had taken a semester off of college, so I was back in Southern California. And my mom, who, you know, I think she feels bad that in the book I kind of like throw her under the bus a little bit by by saying, you know, I kind of point out this thing that happened where she's like, of course it's hard to see at night, like it's dark, you know, and sort of this very dismissive thing. But I think in her defense, you know, as a parent or really as a patient or as anyone, you look at these experiences and they're incredibly ambiguous. You know, it's not like, oh, my arm is spouting blood, right? It's like perception, I think it's unique in this way, too. It's like, I don't know, maybe it looks different, but I can't compare it to anybody else.
Andrew Leland: [00:05:34] And so but anyway, finally we were like, okay, I've been complaining about this for long enough, maybe we should go. And then I went to Jules Stein at UCLA and Dr. Heckenlively, who my current retinal specialist at Mass Eye and Ear sort of like surprised me, ah like Heckenlively like a giant in the field. You know, I was like, okay, I got to diagnosed by like a heavy hitter in this world doing, doing research into RP. And he he had no bones about it. He was like, yep, this is classic. And, you know, had a pretty direct prognosis. And he's like, it's going to be really gradual through your 20s and 30s. And then when you hit middle age like it, very likely you will go blind. You know. And when I tell that story, people really expect it to be this, like cinematic pathos drenched thing where, like, my mom and I both burst into tears. And oddly, it wasn't. And I think part of it was just that kind of teen like recklessness, but maybe also just a sense of the distance of it. Like it was like, okay, middle age. I've never even imagined myself as a middle aged person, you know, like that's that'll.
Tyler Johnson: [00:06:30] Happen in the year 2255 or something.
Andrew Leland: [00:06:32] Exactly, exactly. You know, and then he did add which like, you know, definitely syncs up with that 2255 vibe of like you know by then know they're already making huge progress in terms of a cure. You know he did... He was very explicit. There is no cure at the moment. But by then, by the time you really need it, when you're in middle age, like science will have figured it out. And so for for years I really did just sort of ignore it as well as I could.
Tyler Johnson: [00:06:58] You know, I can't help as a father. I can't help but put myself in the place of your mom in that very short anecdote that you tell about. Well, of course, it's hard to see at night because it's nighttime, right? Like, you know, what are you talking about? But I think that more broadly, that very brief exchange with your mom symbolizes so much about the divide between anybody who's suffering from anything and everybody else, right? Because anytime anyone is suffering, anything that is foreign to our experience, let alone someone who is beginning, even if you know only incipiently and only the very beginning stages is beginning to sort of tiptoe towards something like blindness for most sighted people, it's so categorically impossible to imagine navigating a world without sight. It's like asking someone to imagine how to be something that they just never have been. There's a categorical inability that is nobody's fault. It just is. But at the same time, I have to imagine that with you, you know, you're sort of making your way through adolescence. And I imagine that fitting in was important and, you know, not tripping over people as you try to exit the movie theater and like, whatever, all the other things that a teenager would think about, like all those things are important, right? Especially if the whatever guy or girl that you like is seated there, you know, like all of those kinds of things. Like, I have to imagine that even while it's true from your mom or any of our standpoint, that it's impossible to really know what it's like to be, forgive the expression, but behind your eyes at the same time, it must have felt so isolating to have this kind of insistent sense that something was different and something was wrong, and yet have nobody around you, even your mother, who could really get where you were coming from.
Andrew Leland: [00:08:48] Definitely. That's very true, you know, and that's a phenomenon that continues. I think, regardless of the level of vision loss that I have. You know, I write pretty frankly in the book about my relationship with my wife as I'm going through these milestones, like stopping driving or adopting the white cane. And in those cases, I really, I think, unfairly imagined, probably as I did with my mom, like, well, why isn't Lily my wife, like instantly getting this? Like obviously like using the white cane? Like she should be able to just see that act and understand everything about what I'm going through. And low and behold, like, does not have psychic powers. Like, unless I interrogate it for myself and articulate it to her like she doesn't have access to that experience even remotely. And that sounds obvious now, sort of in retrospect, saying it. But it was tough for me and for both of us, I think, to get there. And so I think that's a really important point that you're making about the work that's required to get to something that is like actual empathy or actual compassion, rather than just like, oh, crappy thing happening to you. Like, I'll name that and move on.
Henry Bair: [00:09:53] We won't go into the specifics of the mechanism of Retinitis Pigmentosa, or RP for short. But just so our listeners have a little context, it's a cluster of rare genetic disorders in which the light receiving cells of the back of the eye gradually break down over years or decades. Particularly affected are the cells responsible for peripheral and night vision, such that the visual loss typically starts from the outside of your visual field and progresses inwards, is, as of now, irreversible. There are some innovative treatments being tested, but so far results have been quite limited.
Andrew Leland: [00:10:32] It's funny, I have a blind friend who called recently surprised me by calling it a junk diagnosis, and I think what he meant by that is, you know, and I've kind of picked this up just over the years, talking to dozens and dozens of blind people who have been diagnosed with. And I'm curious to hear your perspective on this, but, you know, I think all diseases function this way in a certain way. But like for me, naively, you know, I think... I think you hear the name of a disease and you think like, oh, okay, that's like this very specific thing that happens to you under these conditions. Right? But like most diseases, I feel like are much more umbrellas in this way where it's like, okay, there's this halo of things that can happen to your body. And we're going to call them this. Right? And I think works that way, where it's like, generally speaking, yeah, it's about the degeneration of the retina that has a genetic source. But if you actually look at like the community of people who have, there are people who are blind at fifth grade and there are people who are driving into their 80s, and there are people who have like 12 uncles with and people like me who have no record of it in their family and just, you know, everything in between. I think that's one thing I've learned over the years, is that what originally struck me as this, like, very narrow set of experiences and to be clear, like I have met like other classic peers like me, where we're just very much like on the highway, heading the same direction, going the same speed, like waving from the window. But there is such a wide range. It's kind of fascinating that really diffuse halo of etiologies.
Tyler Johnson: [00:11:56] Can you just talk through for our listeners, what, if anything, is your ability to see like now, do you have any at all? Or and if so, what is it like or if not, when did it finally go away entirely?
Andrew Leland: [00:12:10] Yeah. No I can see plenty right now. I have... I'm legally blind. I have about six degrees of central acuity. It kind of roughly translates to like 6%, maybe a little less. I think it's like 120 degrees is normal visual field. Correct me if I'm wrong, but yeah, so I'm down to about six degrees, so I've lost the vast majority of my sight. But the funny thing about sight is that, like, you know, if the lighting conditions are right and like what I'm looking at is stable and expected, you know, I can see it pretty well. Like, I could probably pick both of you out of a lineup if it came to that. I mean, that's one of the interesting things about RP, too, and I think gets back to that difficulty of bringing people into the experience is that popularly, culturally, blindness is conceived of as a binary. You either are sighted or you're blind. Right. And we have these categories like visually impaired or low vision that are useful, but they're also ambiguous because there are situations in which I feel blind, and I think it's useful to conceive of myself as blind. And we can get into sort of like politics of that. But realistically, you could call me low vision, you could call me legally blind. I'm comfortable calling myself blind, but I do have that small central kind of like toilet paper tube that I'm looking through of a central acuity.
Henry Bair: [00:13:23] You know, I think it's kind of interesting is, as you pointed out, when you first heard this diagnosis in your late teens, it was sort of this abstract thing that was far into the distance, so much so that you couldn't really conceptualize what it meant for you in that moment. Obviously, as you've very broadly illustrated for us, that gradually changed. We would hit milestones along the way, such as the start of the use of a cane, which you describe in your book. Can you share with us over the past decades what has your relationship with blindness been? Was there at one point when it didn't hit you that this was happening, that it finally did? What did that look like?
Andrew Leland: [00:14:00] Yeah. So, I mean, there really are some milestones that I think are pretty common. You know, the big first one is driving. And, you know, I think one thing that runs through this whole journey that you're asking me about is the really surprising degree to which these milestones are internally determined. You know, I think that with medicine in general, there's this perception of, like, the doctor is going to tell me when I've hit this point, right? Like the doctor says, okay, we've hit this milestone, but with gradual vision loss. Sure. The doctor can say like, okay, we measured your vision and you're at 5% and that's the milestone. But in terms of like how you live your life, you know, for me, I had to decide when I stopped driving, I had a couple of close calls and I thought, all right. First I was like, driving during night is just feeling unsafe to me, but driving during the day feels totally fine. You know, I pass the driving test. You know, it was illegal for me to do it, then four way stop would come and I would think the coast was clear, and then a person would be like, hello, you know? And so I would say that that happened once or twice and I thought, okay, forget it, you know, but those were all internal things and internal decisions that I sort of had to arrive at myself. And it's been like that the whole way. The next big one, you know, riding a bike less catastrophic than not driving, but still like, you know, a further reduction of my sort of mobility. And then the really big turning point was, was deciding that I needed to use a white cane wherever I went. That's the hardest one.
Andrew Leland: [00:15:24] I mean, I don't want to make generalizations, but the vast majority of blind people because, you know, it's one thing to be like, don't drive. Oh, like eccentric, Andrew doesn't drive. There's plenty of reasons for that. But like, you walk into a room with the white cane and you are instantly marked with the very real stigma that a wide swath of the culture holds towards blindness. And it arouses curiosity, discomfort, alienation, just the whole ugly cocktail of feelings socially. And so it was when I decided when we moved to Massachusetts, you know, by that point, I was I owned a white cane that was foldable. I would carry it 99% of the time, folded up in my bag. And then when we moved here about eight years ago or so, I just thought, I don't know anybody here, I'm just going to be a guy with a cane. And that was such a good decision because it kind of started to chip away at that calcified resistance that I had had towards it and normalize it a little bit. But once I started using it, it really thrust me into the world of blindness. People assume that I'm totally blind, and they grab my elbow as I'm walking downtown and, you know, pull me towards the crosswalk and I'm like, excuse me? Like did not give you consent to touch me. But those kinds of experiences just immediately flooded my life. And so I got very destabilized and upset. But also really curious. But to answer your question about blindness, you know, like it marked me as blind. And so, like it or not, I was forced to to reckon with that label and with that experience in a really profound way.
Tyler Johnson: [00:16:49] So that reflection that you were just giving, I want to sort of riff on that for a second in a way that I'm just going to acknowledge before I start saying anything, or before I ask any questions that I might totally mess up here and say something stupid or offensive. So if I do, I'm going to ask you beforehand to please forgive my stupidity and offensiveness, but I but I'm doing this in the name of trying to help, right? Because I think that part of what, like you were just talking eloquently about sort of the symbolism of the white cane, right? Because whatever is going on inside of your brain or inside of your retina, it's kind of your thing to think about and control until you give a signal to the world which the white cane is of, like, hey, everybody here is a person in the room who sees differently or not at all compared to everybody else in the room. Right? Yeah. And I think that one really positive development over the last, depending on where you want to draw the marker, 20, 30, 40, 50 years has been this recognition that anybody in society should not assume that everybody else around them has all of the same physical and perceptual abilities as they do. Right. And that everybody is sort of comes from a different place and has their own way of engaging with the world. It is also true that I think that there's often a sense let's just use, for the purposes of this discussion, between those who would consider themselves to have visual sight that is quote unquote normal. Although as you mentioned, everything is a spectrum, but nonetheless.
Tyler Johnson: [00:18:27] And those who, when thinking about those who, for instance, have and are using a white cane, I think people can feel almost paralyzed because on the one hand, they feel like they don't want to make an object of the person. They don't want to sort of put. Sometimes we use the word tax on the person of having to explain how they engage with all of those kinds of things. But then, on the other hand, they also don't want to make assumptions, because then they might act in ways that are stupid or unnecessary. Like you mentioned, someone grabbing your elbow who presumably was trying to be helpful or whatever, right? But doing it in a way that was actually the opposite of that. Right? And that actually makes things worse. But I think that people often then feel sort of caught between these two poles, and then it just makes everything worse because then it's like, well, then I'm just not going to engage at all because I'm like, I'm so afraid that I might do something too much in one direction or too much in the other direction, that it feels almost paralyzing. So all of that is to say, you know, one of the things that I think is not unique, but very unusual about your situation is that this has been so gradual. Right? And you remember, I imagine, was striking acuity, what each of the former stages was like. Right. And so as someone who's walked that entire journey, like, what advice or insights can you give to people who want to engage helpfully and productively and are not quite sure how?
Andrew Leland: [00:19:49] Yeah, that's a great question. And I try to have a lot of compassion. For not just people in that position, but like the parts of myself that are still wrestling with those questions. I think like if I had to name a first principle of engaging with a blind person, and I suspect that this could be extrapolated to disabled people and people with visible disabilities, but we can just stick with blindness. It is to ask, I ask, I mean, if you're worried about the person, if you if you perceive them as needing help, if you're curious about them. I think a consent model is a good way to. That's how some blind people have framed it. And I think that's really useful also because it connects to like a larger culture of consent that I think people are realizing we need to put greater emphasis on as a culture. Right. So that looks a few different ways. This person looks helpless. They're walking. Clearly they're trying to leave the train station. And I see them walking towards a closed pretzel store. Hey, are you looking for the exit? Rather than grab the elbow, pull them or the exits to the right? Just saying. Hey, are you looking for the exit or hey, can I give you some help? That's totally benign because then the blind person can say, actually, no, I'm good. Or if they're like losing their mind and they're about to cry because they've been, like, stuck in this train station trying to find the exit for 45 minutes, like, yes, thank God, tell me. But to assume that they're helpless and to then just insert yourself and touch their body or even just say, you know, here's where you should go, that can be really destabilizing and damaging and frustrating, you know, and I think that extends to all different kinds of engagement, like what happened to you, what's wrong with your eyes? How much can you see? Like, you know, sitting on a bus, like that's a common thing where people will just be like, so can you, like, see my two hands? You know, you know, that's not the kind of asking I'm talking about.
Andrew Leland: [00:21:27] They're like, do you mind if I ask you about your vision? You know, and then the person can be like, actually, no. I think this comes up a lot where people think it's like, either you're totally entitled to that information somehow, like what happened to you, or it's like totally forbidden. And for me, and I think for a lot of people with disabilities, it's like, you know, if it's my sister in law and we've hung out a lot, or if it's a friend and we're like, and you're asking in the context, like when you just asked me that, like, it's not a problem. We're having this like rich conversation about vision. Like, sure, it makes sense for you to ask me my level of vision, but if you're just like a dude sitting next to me on the train and like, that's your first question, like, that's offensive, right? And so I think, yeah, I think like the broad principle to, to keep in mind is just consent. Like, is it okay? Like I can't believe I have to say this, but it's really it comes up again and again with stories people tell me is like, listen to the answer, right? Because like, people will say, no, I'm good.
Andrew Leland: [00:22:12] And then they're just like, grab the person's cane and drag them. Or like, you know, just further greater interventions. And what it comes down to is really this the durability of the perception of the blind person as helpless and in need of assistance. And, you know, like I have a really good friend, Sherry Wells Jensen, she's a linguist at Bowling Green State, but she just is finishing up a fellowship at the Library of Congress. She's been blind her whole life, and she knew the route really well to the library. She went there every day to do her fellowship. And just like people just almost every day were, like, barking at her, like curb in front of you. Here, let me grab, you know, oh, come this way, come this way. You know. And if you just imagine, you know, put yourself in her shoes and like, you know, where your place of employment is, right? And you're walking there. And if all day long there were these, like condescending, paternalistic custodial interventions and often, like, pushing her into danger, right. Like the guy is like telling her she had this one story where it was like he wanted her to go through the parking lot, and she's like, I know that going on this path the long way is a much safer way to go. It can get people disoriented and worse.
Tyler Johnson: [00:23:11] It's sort of this funny paired thing because on the one hand, we have the what we were talking about with your mom and all of us, right? In the sense that even people who are attempting to demonstrate empathy have great difficulty in really achieving any meaningful level of empathy. But then, on the other hand, there is this tendency societally to just make all kinds of assumptions, as if every person who is using a white cane therefore engages visually or in any other way exactly the same as every other person who has a white cane. Right? And so first you make that assumption, and then you make the assumption that because you now, having seen the white cane, know everything about how they engage with the world, therefore you who have never had a white cane know the best way to help them, right? Like it's this. I don't know if it's per se implicit bias, it probably is. I'd have to think about the term, but but it's just this whole sort of raft of assumptions that happen in a split second that lead people to do what, as you say, are otherwise totally bizarro things. Right? Yeah.
Andrew Leland: [00:24:13] And I think that the idea of good intentions is worth kicking the tires on a little bit, because I think a lot of pretty toxic material gets kind of stevedore in under the flag of good intentions, which, you know, Sherry, my friend, who I was just mentioning, has a terrible story, but it's also a common one where somebody will say, can I help you? And she, as I think is usually her answer is like, no, I'm good. I'm just heading to work. And then on a dime. The response is, you know, I don't I don't think this is a cousin podcast, but like, if you like on a dime, like, can I help you? No, I'm good for you. That is not an uncommon story.
Tyler Johnson: [00:24:50] Wait. Sorry. The the person who just asked if they could help?
Andrew Leland: [00:24:53] Yeah, like, you know. Fine. Don't take my help. And I've gotten this to, like, the sort of, like, instant, like, all right, buddy, like, sure. You know, and I think what it, what it reveals is the toxic sludge that's beneath those nominally good intentions. Right? It's like I'm trying to help you. You don't want my help, like. Fine. You would be surprised how common that experience is. And so I think, like, good intentions are coming from a place of wanting to help. But I think the reality is that, you know, for the book, I interviewed a guy who was telling me about his experience of becoming blind as a, as a black man. And he was saying to me that like, he felt like the the kind of pity that he experienced as a blind man was almost more painful to him than the sort of more outright like in-your-face discrimination that he experienced as a black man. And, you know, I think that says a lot about the sort of pain that the kind of pitying response, that kind of kind of masquerade as good intentions can have on people.
Tyler Johnson: [00:25:48] Can you just... I know this sounds like a stupid question, but I think it might be helpful because the thing is that when I hear you tell that story inside and outside of my body, I wince, and then my next reaction is like, what? So all of which is to say, when you or people that you have interviewed or friends, whatever, experience this pity, if you had to give a narrative to what people who feel pity towards you are thinking or feeling like, what do you think that looks like on the inside for them? Because that just seems like such a bizarre like, I guess I'm just trying to even imagine what that interior dialog looks like. Lik the story that you mentioned about the person says that I can help, kind of help you. And they say no. And then the person is like, all mad about it. Like, what do you think is even going on inside of them when they say that?
Andrew Leland: [00:26:35] I have thought a lot about that. And in some ways, I feel like the deeper I get into the experience of blindness, the less equipped I am to answer that question, because I just get so kind of, you know, I'm so much more interested in the experience of the disabled person than I am trying to, like, deconstruct the ableist mindset. But I think it's probably worth naming ableism. And, you know, if you think about racism or sexism, right? It's like looking at this one characteristic, this one identity, and thinking of it as sort of foundationally or like definitionally negative terms like anti-black racists see the condition of being black as a negative trait. And so ableism sort of has the same structure in many ways where it's like you look at a disabled person as foundationally, fundamentally, categorically definitionally worse off less than, you know, and like racism or all of these ideological prejudices. It's structural and it's systemic and it's deep seated. Right. So, like you may I'm not a racist, right? There's like that whole conversation. It's the same thing. Like I'm not an ableist. Like I was trying to help her across the street. Like never mind that. I like, grabbed her elbow and pulled her south when she was trying to go north. I think that ableism can be very unconscious in that way, and that I think that the person who's like, forget you, like for rejecting my help, you know, I think that they're kind of being thrown back against it a little bit maybe. And they're like, oh, what? This person's not helpless. And they're rejecting me. Like, how dare you reject me? I'm I'm helping you. Poor suffering there. But for the grace of God go I, you know, so I think it's like, I think it's maybe a little bit of cognitive dissonance that, like, gets people thrown off kilter.
Henry Bair: [00:28:12] Yeah, it's actually a really interesting insight. I hadn't considered that before. We've been talking a lot about your interactions and relationships with people who I would assume to be strangers or casual acquaintances even. But I'd be curious to hear more about how the changes in your vision have affected your relationships with people who have known you throughout the progression of your condition. Can you tell us more about that?
Andrew Leland: [00:28:37] Yeah, I think in all of these situations, whether it's a stranger or an intimate, but I think it's especially pronounced with friends and intimate family members. It requires that I figure out my relationship with blindness in order to communicate it to them, because I think what really has to happen is for me to say, you know, I said to my friend who was visiting for for a couple of weeks recently, the first night he would say, like, oh, I'm actually on your on the right side of you. Now, as we were out walking, you know, and then later that night or the next day, he was like, oh, there's curbs right in front of you. Or it's like pavements about to change. And like after the third or fourth thing like that. I just said to him, like, you know, and I didn't say angrily, like canceling him. Right. I was just like, you don't have to tell me anything like that if I'm about to, like, get clocked in the face with like, a pole that's fallen out of a truck, like, yeah, let me know if there's a manhole that you think my cane is not going to catch. Like. Sure, but like 99% of these things, like, I'm good. And he felt bad and, like, apologize. And I was like, no, you don't even have to apologize. Crazy. Like, we're good. Just don't do that, you know? And but it took me a long time to even, like, get to the place where I had enough sense of myself and what I needed. Like, what sort of accommodations or access needs might be like the jargony way to call them. And not to mention the sort of interpersonal confidence to just like, be able to say it in a way that didn't feel like I was shaming him, or that I was ashamed, or that it created this weird emotional thing. I'm much more comfortable now, and it's taken a lot of work. But now for me to just say, like, you know what, man? Like I'm good. Here's what, here's the guideline. Thank you. And then when he messes up, be like, that's okay. But like, you did it again. Let's just not do that. It's been a variation of that kind of obviously a very different kind of conversation with my wife than it is with my buddy who's visiting from out of town, but they all have that same structure of like, I have to do the work to figure out what I actually need and then do the work to share it in a way that makes sense.
Tyler Johnson: [00:30:16] Can I just ask, as a person who previously was able to see what I assume when you were at least very young was, you know, sort of the full spectrum of everything, including, you know, at night and whatever else, and then has gradually lost it. And maybe this to the point you were making earlier, this is probably an impossible question to answer, but I'm just trying to imagine what it would be like when you see things that you are familiar with, that you have seen, when you could see more broadly previously. Do you mostly see just the through a toilet paper roll thing that you can like the actual light waves that are hitting your eyes now, or does that little bit trigger some sort of wave across your occipital cortex that gives you that, like calls to mind a full palette of what you would have seen when you looked at a sunset, or the face of your wife or whatever, 10 or 20 years ago.
Andrew Leland: [00:31:15] That is a tough one to answer, you know, and I don't have I'm not going to like, cite the cognitive science research papers to back this up. But I know that the research is there that, you know, broadly speaking, our perception is heavily influenced by more than just like what the photons are showing us. Right? Like the same way that you could like mistake A, I don't know what the example would be. You know, like like you see a dog bone when it's actually a human cookie. But the reason you think that is because it's surrounded by other dog bones and your mind is just sort of like doing a sort of categorical filling in. And that phenomenon is very pronounced, I would say, with my experience of what I do see. And an example of that is when I know where I am and I know what I'm looking at, I see it a heck of a lot better than I do if I'm turned around in some way. So I noticed that I went to a on a on a work trip to D.C. recently and I was like, wow, did I experience like a drop in vision? And like, probably not. I think it's just that, like, all of a sudden I'm out of my familiar environment and I'm having to, like, do a lot more. What am I facing and where am I? And and as a sidebar to that, one of the really tough things about being in the position I'm in, which is to say, like having enough sight that is useful, like having useful sight, like being in a random part of D.C. and like seeing a sign that says Metro this way. Like that's useful, useful vision to have. But like, by and large, I'm better off cultivating non-visual skills both as a view towards the future. And because I can't really rely on my ability to happen to catch that Metro sign. So more and more, I'm listening to traffic and feeling textures with my cane. But I'm in this like very strange Twilight zone where I also am looking at stuff.
Henry Bair: [00:32:57] That actually that is tangentially related to something I would love to know more about, which is a chapter that you dedicate in your book to how changes in vision actually shape your other perceptions. One of the most interesting things you reflect on in this chapter is how does the loss of vision change your perception of what beauty even means? Or are you describing example where changing or maybe decrease visual perception of food can actually change how much you appreciate how it tastes, at least the subjective sense of it. Can you tell us more about that? How you experienced on a personal level?
Andrew Leland: [00:33:30] Yeah, yeah, that's in a chapter called The Male Gaze, where I really kind of drill into questions about, you know, disability and masculinity for me, but also like specifically, you know, vision and sex and vision, there's this wonderful but also kind of harrowing for people who are losing their vision. Book called Touching the Rock by an Australian theologian named John Hull. I've had a conversation with multiple blind people who are like, oh man, when I read that book, like it was knocked me for a loop. And I had the same experience, because what happened is I think he was in his 40s teaching at a university in England and lost the last of his vision. He sort of had vision problems for a long time, but I think it was detached retina. And finally he went totally blind. And then he kept this cassette diary and then turned the transcripts of those recordings into a book. And it's just it's so painful because it is written in the throes of his grieving, the loss of his sight. And that's a really important distinction to make, because the experience of blindness, if we wanted to kind of map out different experiences, right. You could like both throw on Sleepshades right now and be like, I'm blind. This is what blindness is like. It's not really what blindness is like, because the experience of being fully sighted, you know, your entire life and then for five minutes wearing sleepshades is radically different than Sherry, who's been blind for, you know, many, many decades.
Andrew Leland: [00:34:48] And her experience of what that sightlessness is is radically different. And so another flavor of that is what John Hull was going through. And he wrote that book, which is the grieving. He writes from that place of grief. I'm skirting it myself in kind of complicated ways. But. But in that grief, he talks about how food doesn't really have the same allure anymore, because, you know, he hears the waiter say they're passing the vegetables around, but he's like, I'm hungry. Like I feel a physical pangs, but like, I don't have that impact. And then he compares that explicitly to sex and like, you know, I still feel these sort of pangs of desire, but like, there's nothing like that full bodied impact of, you know, of the sight of a woman on a man's gaze. And I kind of like, naively reported that in my book, in the first, in an early draft of the book, be like, yeah, so this is this is what happens. And actually, Sherry was an early reader of the book, and she was like, poppycock. You know, like, I love food, I love sex, like. And what I had to realize was that that was a description of the grief of, like, having a relationship with food or sex that is highly visually oriented. And then having that taken away from you is undeniably painful. Right? But that's not to say that it's the only way to appreciate those things.
Andrew Leland: [00:35:56] And so a lot of my work in the book was trying to wrap my head around, well, okay, what are the non-visual ways to appreciate these things? And I think it's tough for sighted people as it as it is for me to conceive of that. But it is possible. And there's lots of different pathways, like Oliver Sacks has written really beautifully about blindness, and he talked about the way that we conceive of human experience as very the modalities being very isolated from each other. Right. Like, you can experience something visually or you can experience it. Auditorily. And but his argument and I suspect that there's cognitive science that bears this out, is that our experience is much more multimodal than that and that, you know, you might not even be conscious of the ways that your hearing is influencing what you're seeing, or your smell is influencing what you're feeling. You know, and that's all kind of mixed together. One minor example of that, just to stay on the nerdy cognitive zone, is like there are brain scans of blind people reading Braille or using echolocation, and their visual cortices light up while they do these things. And so really, there are ways in which the experience of the world doesn't, you know, you can have access to different parts of the brain, to different parts of experience, to different parts of the world, even without seeing them in pretty profound ways.
Tyler Johnson: [00:37:06] Yeah, to that point, and one that you sort of briefly alluded to there, it has occurred to me. So with the question that I was asking you earlier about when you see now, do you mostly see what the photons describe to your retina, or do you mostly see what your memory recalls once you recognize what the thing is? And I'm sure it's some of both of those things, but it is really striking to try to imagine someone who has complete congenital blindness, who has just never had the experience of photons describing anything to the retina or the retina, can't communicate with the occipital cortex or whatever. But for a person like that, and again, this is just my, you know, ham fisted attempt at imagining, but you have to wonder if the kind of neurocognitive palette that they're using is not just so dramatically different from someone who has grown up with a full spectrum of sight, that it doesn't even make sense to talk about it as being better or worse or less or more. It's just like two different worlds, right? It's like stitching the world together based on sound and touch and taste and all of the other senses, but without sort of mapping it over the visual realm in the way that I think most sighted people tend to do. Right? Like it's just like the entire way that things are connected to each other, I have to imagine, would be dramatically different.
Andrew Leland: [00:38:33] There's no question that there is a cognitive difference in those two experiences. You know, there's interesting data. I saw a statistic about incidence of schizophrenia, and apparently congenitally blind kids have something like zero. It's like it's like very like, no, no congenitally blind people become schizophrenic. You have to fact check me on that one. But it's something like very, very low incidence compared to the general population. So clearly there's something different happening there. And yeah, like and there's interesting kind of like cultural challenges there. Like, you know, a funny example that I read was, you know, when, when, when you're in a courtroom and you're being sworn in and they say, raise your right hand, you know, a congenitally blind person who's never had that described to them, is it like a Heil Hitler salute? Is it like teacher in class, like, you know, or, you know, how do you, you know, and and there's a whole universe of visual information that that one doesn't have access to as a congenitally blind person, that one can only access through verbal descriptions. That all being said, like, I've hung out with a bunch of congenitally blind people, and it's not like talking to an alien, you know, like it doesn't feel like their brain is profoundly different than mine. Like, you know, they read Braille, and there's been a lot of cognitive studies about Braille reading. The reading part of the brain maps onto the feeling, the tactile modality of like feeling the Braille characters in the same way that the visual cortex does for. Print reading. And I think that there's a lot of things like that. And so there's certainly like there's gaps between those experiences. But I think it might be risky to overstate those differences.
Tyler Johnson: [00:40:02] Sure. And that's an important corrective. I don't mean to otherize them. I don't know if that's a word, but what I'm really trying to say is that I imagine that there is a lot of richness and depth to those interconnections in a way that I just may not appreciate, because I've never been asked to make them with the same, or required to make them with the same richness and depth. I'm not trying to romanticize it either, but I'm just saying I'm just trying to imagine that it must be categorically different, is all I'm saying.
Andrew Leland: [00:40:28] Well, I don't know, categorically different. I don't know if I'm if I'm going to join you on that.
Tyler Johnson: [00:40:33] I mean, please tell us you...
Andrew Leland: [00:40:36] Here's like, this might be too far afield of an example, but like, you know, we have knowledge about the cosmos that we have not seen visually, but we all share an understanding of it. Right. And like I just think, like if you think about something that is like a congenitally blind person would be categorically excluded from, you know, by virtue of their categorical difference. Like, I'm kind of hard pressed to know. I mean, I think, like I said, there are certain things like knowing what the Great Wall of China looks like, which is a friend of mine who's congenitally blind, who's super into Legos. And, you know, his point was like the first time he built a great Wall of China Lego set. He was like, oh, that's what the Great Wall of China, I think. Like, he didn't realize that it kind of has the sort of curves to it, right? You know, he had to find a way to access that. But I don't think of that as a categorical, categorical difference. It's more just like, you know, we just haven't filled in all of the connections or the bridges between the two worlds. But I don't know that there's like a such a hard separation necessarily. I don't know, am I missing your your point?
Tyler Johnson: [00:41:34] I'm obviously doing this very inartfully the point that I was trying to make is that I can only speak for myself. I feel like myself. I tend to rely on sight more easily and more instinctively than on my other forms of perception. And because I do that, I imagine that there's a lot that I miss that I could pick up on through other perceptions because I so easily rely on sight. Yeah. And so the point I'm actually trying to make is that I imagine that there is a richness to the world, that there are elements of richness to the world that I don't pick up on because I too easily default to what does something look like. And again, I'm not trying to make anyone into other. And so categorical maybe is the wrong word, but I'm just trying to state that I imagine that there are worlds of things to be perceived that I don't perceive, because I just have my sort of way that I make my way through the world every day.
Andrew Leland: [00:42:41] Yeah, it reminds me of a friend of mine who's a poet, a deaf blind poet named John Lee Clark, who has a really wonderful collection of essays that's coming out very soon from Norton called Touch the Future. And in that book, he talks about a test that he gives to his students. He's also a Braille instructor. The essay, I think it's called Meta tactile knowledge. And he takes a Beanie Baby, and he duct tapes it somewhere very unexpected in his office, like up, you know, like on a wall or something, or on, like the back of the door. And then he tells his deaf blind student, okay, fine, find this Beanie Baby. And he can sort of use this as a test of their kind of willingness to tactilely engage with their environment. And he's a really big advocate for being fearless in your tactile. There's such a taboo, there's such a taboo against touch in society. And as a deaf blind person, that taboo is fatal, right? I mean, it just it just shrinks your world down to nothing. And so John is such an evangelist for putting your hands on stuff.
Andrew Leland: [00:43:38] And so he says he has students who will just sort of like, you know, they'll touch the desk, they might touch his chair and be like, I can't find it, you know? And he's like, no, no, no. Like, you got to get your hands dirty, right. Get in there. And so I do think that there's something to that. And, you know, that's not to say that like every deaf blind person has that meta tactile knowledge. And and in fact, John, I think is pretty clear that many tragically don't. Right. Because they do they listen to their parents or to the interpreters who say, no, no, no, keep your hands in your lap like I'll bring it to you. So it's not an automatic affordance that you get as a deaf blind person. But I think if you're like John and you really can kind of have the resources and push past, then I think that, yeah, he would wipe the floor with all three of us in terms of his his tactile abilities.
Henry Bair: [00:44:19] Well, typically, towards the end of our conversations, we like to ask about some advice our guests can share with our clinician listeners. But honestly, so much of what you've already shared makes for incredibly valuable advice. Because even though I'm steeped in ophthalmology, I'm already thinking about how we can fold more of your insights into our training. You know, for the most part, we do not talk to or about visually impaired people in the way that we have been throughout this conversation. So to that point about advice in your book, you will detail these visits over the years with the ophthalmologist at Massachusetts Eye and Ear, during which you'd wait for hours in the waiting room and then get a battery of tests to gauge your visual acuity and visual field. You'd think to yourself, was that a waste of time? I'd love to know, throughout all of your interactions with eye doctors, were there some things that they said or did that even though no intervention would come of those visits, would nonetheless make you feel as if those visits were worthwhile?
Andrew Leland: [00:45:21] Oh, that's not the question I was expecting you to ask.
Henry Bair: [00:45:23] What was the question you were expecting?
Andrew Leland: [00:45:24] I thought you were going to, you know, solicit the harsh criticism.
Henry Bair: [00:45:28] Oh, we'll get there. That was going to be my follow up question.
Andrew Leland: [00:45:31] I've been incredibly lucky. You know, Mass Eye and Ear is world class, and my doctor there is incredible. And, you know, she treats me like a colleague. I think she's been incredibly skillful in meeting me where I am and recognizing that I have, you know, and she's sort of flattered me by saying, like, you have an unusually intense interest in the details of this process. And so I'm going to offer you like a, you know, unusually rich account of what we're talking about. And, you know, I think a doctor's willingness to, you know, meet a patient's intelligence or, you know, not not to talk down to them or oversimplify it, but to say, like, you know, if you don't want this, I won't give it to you. But let's really dig into not just the the genetic aspects, but even like the, the kind of more phenomenological ones of like, how does this experience the thing that I've talked a lot about with her and I've been really grateful to her for being willing to go with me on this is like the sort of slippage between what her tests show and what my daily experience is. And so I think that's a really positive thing that she's given me.
Henry Bair: [00:46:30] Well, I mean, on the flip side of that, were there any things that you noticed that could have been done better?
Andrew Leland: [00:46:35] I mean, I think just, you know, this is coming out of my research, not just this is not really coming out of my own personal experience, because like I said, I've had a really good experience with her, but. You know, in the book, I cite some studies of the sort of general like surveys of doctors and medical professionals, perception of the quality of life of people with disabilities. And they show that by and large, they reflect society's view of life with a disability, which is which is generally quite low, right. That like, it's much harder for a disabled person to lead a fulfilling life than it is for a non-disabled person. And that really runs counter to the lived experience of a lot of people with disabilities. And disability is complicated because there are aspects of it that are irretrievably painful, right? You know, and like there are people who are hardcore disability activists and like, you know, so happy to be in community with other disabled people. But then they in the same breath, they'll say, you know, I wouldn't wish this on somebody else. I don't want to become more disabled. So it's hard to wrap your mind around. But I think one thing that would be really important for any doctor to do is to educate themselves on the value of a disabled life, and not just the value of it, but the potential for a disabled life to be joyous and complete.
Andrew Leland: [00:47:51] And there's there's a blind friend of mine who has a phrase that she's used online sometimes that I love, which is blind, not broken, you know, and I think there's like, there is a sort of, like, really intense, seemingly intractable barrier between the sort of like disability justice movement that I've become interested in and the sort of medical approach to disability. But I do think that there's a way to bridge them. And, you know, the traditional way of framing it is the medical view of disability is that there's something wrong with your body, and it's up to medicine to fix it. Right. And then in the 80s and 90s, you have academic disability studies come up with this idea of the social model of disability, which argues, actually the only problem of blindness is the fact that you coded your website so that I can't read it with my screen reader, and you didn't put Braille labels on the elevator. And, you know, and if you built a world with blindness in mind, I'm not disabled.
Andrew Leland: [00:48:41] I'm fine. I have this characteristic called blindness that's as neutral as hair color, you know, and we can get into the weeds about, you know, arguing those things. But I think that for doctors or for medical professionals to be at least passingly aware of the social model of disability and of the possibility of reframing it. And like, you don't have to be like, well, blindness is an incidental characteristic. So we're not going to prescribe you dorzolamide because you're happy as a blind person. Like, no, that's not what I'm saying. Still do your job, but like do it with the recognition that if the treatment doesn't work and the person becomes blind, that you don't have to tell them, I'm sorry, there's nothing we can do. Like your life is over now because I've heard horror stories again and again and again from people in 2023. Hearing from doctors with no conception of the possibility of how to live a successful, happy life as a blind person. So I think being able to hold those two things together is crucial for people to have experiences within the medical world that don't leave them feeling broken and alienated as a result of their disability.
Henry Bair: [00:49:43] Well, with that, we want to thank you so much, Andrew, for taking the time to join us, for sharing your stories and for sharing your insights that you've learned along the way. I'm positive this is going to be so, so incredibly valuable for for our listeners, whether or not they are on the side of the clinician or on the side of the patient or the caregiver, the person who's supporting someone who's going through something similar. So yeah, once again, thank you so much for your time.
Tyler Johnson: [00:50:06] I also personally thank you for handling gracefully my sometimes clumsy questions and helping me to figure out what I was really trying to say when I was sometimes making an inartful mess of it.
Andrew Leland: [00:50:18] Not clumsy at all. I really got a lot out of this conversation. I'm grateful to both of you. Thank you for for having me.
Henry Bair: [00:50:26] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at the DoctorsArt.com. If you enjoyed the episode, please subscribe, rate, and review our show, available for free on Spotify, Apple Podcasts, or wherever you get your podcasts.
Tyler Johnson: [00:50:45] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient, or anyone working in health care who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [00:50:59] I'm Henry Bair.
Tyler Johnson: [00:51:00] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.