Andrew Leland on his instant classic: "The Country of the Blind"
DESCRIPTIONTo lose one’s sight to the unpredictable course of retinitis pigmentosa is an experience many people with sight loss know all too well. In the US alone, there are an estimated 100,000 people with the condition, but there are not many who happen to be authors and journalists of considerable skill who can relate in a wonderfully compelling detail the very personal experience of losing their sight while also starting a family, maintaining social and work connections, and navigating the many perspectives on blindness swirling in the American scene. Only human, not artificial, intelligence is on tap for this conversation with the author of the remarkable new book, “The Country of the Blind.”
DARRYL ADAMS: Thank you, Alice and John. And it is my pleasure to be able to sit down today and have a candid conversation about sight loss with Andrew Leland. Andrew is the author of The Country of the Blind: A Memoir at the End of Sight. And beyond being an author, Andrew is also a journalist, producer, longtime podcast host, and overall arts and culture kind of guy. So, Andrew, welcome to Sight Tech Global.
ANDREW LELAND: Oh, man, thanks so much for having me. I’m psyched to be here.
DARRYL ADAMS: Awesome. You and I share a diagnosis and really a lived experience with retinitis pigmentosa, or RP. And this is a retinal disease where we’re gradually losing our eyesight from the outside in. And reading your memoir just really struck a chord with me in terms of just– it felt like my own story in so many ways. So I’m just curious, what prompted you to want to share this personal journey with the rest of the world through your memoir?
ANDREW LELAND: I mean, there’s a bunch of things that made me want to share it. I think the main impetus was the ambiguity of being low-vision. And I had this experience when I started using a cane full time maybe coming up on eight years ago now or so, where I still was able to see the Don’t Walk sign, or I could look at my phone with the text magnified. There’s all kinds of things I could see. But I had my cane. And people see the cane, and they just think, oh, OK, there’s a totally blind guy. And just constantly, all day long, I was experiencing this ricocheting between feeling, as I was writing the book, like too blind to be sighted, too sighted to be blind. And that, I think, made me really want to try to communicate this experience to the world, but also to myself in some ways because I think the more I thought about it, the more I realized I hadn’t quite wrapped my head around what that means. What does it even mean to be low-vision? Am I blind? When does that category include me? So it was as much a way to explain it to myself as to the world. But I think that ambiguity is something that really inspires a desire to push back against those binaries and say, hey, actually, there is a lot of fluidity in this experience. World, why don’t you follow me down this path?
DARRYL ADAMS: Yeah. It’s such an interesting thing because I’ve been telling people, after reading the book, that you’ve given me a new vocabulary. And one of those examples was that too sighted to be blind, too blind to be sighted type of mantra because when I tried to explain to people what I see and what I don’t, it’s just difficult to put into words because it is so context dependent, so it’s continuously evolving over time. I felt like– or I do feel like I’m never an expert in my own condition in the sense that as soon as I learn something new and ways to get around things that I was previously unable to do, along comes another challenge that I have to go figure out. What I really appreciated about the way that you’ve put the story on paper is that you really differentiated this notion of losing sight as a physical component versus the emotional and psychological aspects and working through those independently. Starting with the physical pieces, where did you first start seeing the need for change?
ANDREW LELAND: Change in my own behavior, you mean?
DARRYL ADAMS: Yeah.
ANDREW LELAND: Yeah. It’s such an interesting question. And I think you’re absolutely right that I think the way that we tend to think about medical issues in general, whether it’s a disease, an illness, an injury, a diagnosis, it’s this very external thing. The doctor has some measurement tools, and then it is imposed on you like, OK, you have this many months to live, or you will never use your right arm again. There’s this medical authority that I think, as a culture, at least in the US, certainly, we just put so much stock in it. And one thing that this experience of gradual vision loss from RP has showed me is just how subjective it is. And then I have to be careful about that because there still is a undeniable scientific– my retinal cells are legit dying, and there is a scientific measurement you can make of that. But even that scientific measurement is largely based on my own subjective response to an eye chart or to a Goldman periphery test. And so that’s the beginning of my understanding of the fluidity, again, and the spectrum and the murkiness of what I originally conceived of as a very binary scientific process, but then even beyond that, that murkiness of the difficulty of measuring it. The thing that I’ve realized when I started researching rehabilitation, which is the industry term for it, but cane training or learning assistive technology, Braille, the question of, when do you start to use a screen reader, for example? Or when do you start to use a white cane? I really wanted the president of Blindness.com to call me up and be like, Andrew, congratulations. It is now time for you to use a white cane between the hours of 8:00 and 11:00. But really, you have to make the call yourself. And just having talked to so many folks with RP and just blind people in general, it’s a very common story of, OK, third close call with whatever it was, whether it’s driving or an injury or something, I guess I need to use the cane or use a screen reader. Again, it’s back to that idea of ambiguity. It’s like you really have to intentionally and internally make that decision, and nobody, no doctor or trainer or anybody else, can really do it for you.
DARRYL ADAMS: When you mention and you describe your doctor’s visits, I had the sensation that you were in the same office that I was, although we were not. [LAUGHTER] It was incredible how similar the discussion was and the expectations that were set and how that changes over time. And I know there are so many people going through that same set of diagnosis, emotional evolution going down this path. And it’s really just really heartening to be able to see this, again, in print to understand that you’re not alone in this. You mentioned the white cane as a good example of the tools of the trade, essentially, as you move closer toward blindness and needing to understand, obviously– needing to learn mobility, orientation mobility skills, in order to be independent. And I thought it was just really, again, almost– it feels like probably near universal scenario where you know you have to start using a cane or doing something different in order to remain independent, but there’s a resistance to the cane. And I just wonder– you mentioned carrying the cane around for a long time all folded up and just hiding it, but just in case. And I was so much in that same boat, and I’m so thankful to be beyond that now. And I’m just curious, do you have, based on your experience and based on all of the people that you’ve talked to and also in your travels, any advice for people that are starting this journey and are carrying that cane or maybe not even yet to that point, how to get past that a bit and to just be more comfortable with the blindness as an identity?
ANDREW LELAND: Yeah, that’s such a tough one. And this is advice that I’ve gotten myself. And I’ve gotten it in various guises with varying degrees of bedside manner. I said to somebody– I won’t name them, but I was asking them this question about screen readers. And I was like, look, I can see my screen with magnification A-OK. This was maybe five or six years ago. And I can see my phone. Is it really worth it to start learning VoiceOver and JAWS or whatever now? And they said to me, well, I don’t know. When you lose the ability to see your screen comfortably, do you think you’re going to have an emotional reaction to that? This was a blind person. And I was really taken aback, and I was like, yeah, I think so. And they were like, well, then you’re probably not going to be in the mood to be memorizing keyboard shortcuts at that juncture. Better to do it now. And at the moment, it rubbed me the wrong way. It was this tough love moment. But in retrospect, I think that’s incredibly good advice because it’s true. When you inevitably have this grieving moment or grieving process that– I think to grow up with sight and then to lose it, even if you’re just like a total guru, yogi, enlightened, just figured it out, harnessed the power of it, you have to grieve that loss to some degree, I think. And everybody does it to a different degree or a different style. But in that grieving process, that’s not when you want to be figuring out how screen readers work or how cane travel– the fundamentals of it. There’s inevitably going to be a lot of adaptation that’s going to have to happen. And so I really took that to heart. But still, that’s easier said than done because the question is, well, how much in advance do you do it? And if I had done that 10 years ago, I think it would have felt really silly, in some ways, just practicing voiceover for 10 years before I even needed it at all. So I think it requires a little bit of projection, but it’s hard to know how much projection because my eye doctor, I think, like most eye doctors, tend to be pretty wary of giving any concrete– well, I think probably we’re looking at 2027 you’re going to need that, because they don’t really know either. Yeah, so the advice I would give is try to stay ahead of the curve always. Don’t be bonkers ahead of the curve, where you’re just like– if you’re still driving, you don’t necessarily need to learn how to use a cane. But I like to compare it to having a kid, actually, because I remember when my wife, Lily, was first pregnant, it was kind of like, oh, my god, how are we going to deal with this. And then I was like, well, we have nine months to figure that out. And then Oscar was born, and it was like, oh, my god, how are we going to do this? And it was like, well, he can’t really go anywhere, so we have time to buy those little plastic thingies to put in the plugs. I think with RP, there is that natal sense of a built-in track to prepare ahead of the game. And you don’t really know what to expect, but you can also be savvy about it. And of course, this is a very particular version of the blindness experience. There are people who go blind overnight, and they don’t have that luxury. But I think for guys like you and me, who have this 4% of your visual field a year, drip, drip, drip, I think that’s the way to approach it.
DARRYL ADAMS: Awesome. That’s fantastic. And you speak about Lily and Oscar, and it makes me wonder more also about your– you’ve mentioned a bunch about how your relationships evolve and just thinking about being introspecting on who you are as a person, who you are as a boyfriend, then husband, then father, and how losing sight does and does not impact your roles in the family. And today, after what you’ve been through now with the book and everything post-book, what are your thoughts on that? How do you see your journey into blindness impacting, positively and negatively, your relationships?
ANDREW LELAND: That’s a tough one. I mean, I think those relationships, in particular, it’s been really positive. I mean, I think Lily and I have certainly had to go through and we continue to go through adjustments. We were just on a trip to– we went to Berlin for a week over Thanksgiving. And at night, I would follow them. And sometimes, they would just cross the street, and I wouldn’t know that they had crossed the street. And I would be stuck there, but I would be behind them. And by the time I realized, I wasn’t sure if it was safe to cross. And it left me feeling a little bummed out, like I’d been left behind. Or other times, when I was following them into a building and I couldn’t see where the door was– and something I picked up when I went to the Colorado Center for the Blind, one of the teachers there was like, when you’re opening a door for a blind person, it helps to say, door on the left. And so I just said that to Lily for the first time. I was like, it’s helpful if you say that. And she did it two or three times and then forgot and stopped doing it. And I was like, when we cross the street, it would be helpful if you guys would just say, crossing so that I can know. And now, they got better at it. And Oscar was like– he’s great because it’s like a project for him. It’s like, OK, cool, this is something I can do. And he gets very enthusiastic about it. So he was like, crossing. And it was this evolving process. And by the end of the trip, they were both doing it. And so that’s all to say that the adjustments that I have to make, they wouldn’t know to do that. I can’t expect them to figure out to say, door on the left without me learning about that practice. It’s not a push and pull, but it’s more like– if you imagine, I don’t know, somebody holding a– you’ll appreciate this metaphor because I know that you’ve done running with a tether. It’s a little bit like that. It’s like there’s slack in the rope, and then there’s no slack in the rope. And it’s like that, but it only works if I do the work myself. And I think one of the big and painful breakthroughs that I had to go through that I document in the book that Lily was very generous in letting me document was that original moment where I think I just expected her, through some magic of empathy, to figure all that out on her own and be like, oh, of course, using a cane would be difficult, and now I understand that you need to use it without my saying a word to her about it. And I felt really resentful. Why are you so freaked out about this cane? Don’t you just instantly get it? And it took years for me to figure out, OK, I have to wrap my head around this, and then that will give me the ability to communicate it to them.
DARRYL ADAMS: Yeah, thank you for that. That is that feeling, again, that’s so similar in the sense that I feel like over the years, as my kids were growing up, I felt a lot of challenges around not being able to participate in driving them to sports events and all the different things that they do growing up and having to try to be equal, and then also being very open about what we can and cannot do and what is to be expected and how to work together to be really their partner and father and whatnot. I think the thing that’s just amazing about the whole thing is that at the end of the day, it just feels like it’s such a close family relationship in that my kids have a sense of what I can do and what I can’t and are so wanting to help. So it’s just that feeling of just being there for you. It’s amazing. And they just know what to do, when to do it, and it’s really neat.
ANDREW LELAND: Yeah. I mean, that makes me think about– I think one of the big things that I learned in researching and writing this book came from the blind community, which is this idea of– I think you hear it in the phrase alternative techniques. I think the word accommodations has this association, for me anyway, growing up of like, oh, you have a special need. It’s in the phrase special needs. Oh, you have special needs, so we’re going to make an accommodation for you. And it makes it just feel like blindness or disability is this very negative thing that requires a sort of act of charity. And that’s the last thing you want from your family, like, oh, we’re all having fun, but let’s add a little bit of charity for the disabled family member. But I think one thing that I’ve learned is that if you reframe it and you think about the word alternative, it’s a value-neutral term. It’s not a lesser-than technique. It’s not like, we all do it the good way, but then you have to do it the crappy way. It’s just like, no, blindness requires this other route. And I really feel that that can sound sort of Pollyanna-ish or whatever, but in practice, I’ve experienced it. And I experience it with my family, where it’s like, sure– let me think of a specific example. I mean, just what I was just saying about walking around this dark and foreign city with my family. Yeah, they have to say, crossing or door on your left. That’s not a burden. It’s just an alternative technique. Some people just cross the road without saying anything, but our family, we say something. Who cares? Alternative.
DARRYL ADAMS: Exactly. Fantastic. So I think we’d be remiss if we– this is Sight Tech Global Technology Conference, and I want to just have a quick word on technology here. So given everything that you’ve learned, the skills that you’ve developed, the people that you’ve spoken with, and just your experience to date, can you think of particular current barriers, technology barriers, access barriers, things that just aren’t quite as good as you’d like them? If there’s one thing that you could change that you feel would make the most meaningful difference right now for you, what would that be?
ANDREW LELAND: For me? Huh. Oh, wow, that’s a tough one.
DARRYL ADAMS: And keep in mind that the audience here is going to be people that are in the business of innovation and the cutting edge of technology.
ANDREW LELAND: Yeah, yeah. I mean, OK, yeah, all right, well, we’ve got a bunch of engineers with unfettered access to resources and ingenuity. Where’s my flying car, my autonomous flying car? [CHUCKLES] I mean, transportation, I think, just where I live is a big one. You talk about the family thing of wanting to take your family out to the sporting event or whatever. I think autonomous vehicles would be a game changer for me. I mean, one thing that I’ll say on that front that I feel like in my infancy as a blind person is this really interesting conundrum of trying to figure out what is actually an access barrier and what is just me still wrapping my head around how assistive technology works. Even in the last three months, I feel like I’ve leveled up enough to the point where I can figure out if something is accessible or not versus me just not knowing how to use JAWS or VoiceOver. But that is, I think, an underappreciated aspect of accessibility. And I know blind people who are just entering this world or just maybe not even legally blind yet, but they like the political flavor of being like, this website is inaccessible. That’s unacceptable. I hereby cancel you. I think it’s important to have that kind of advocacy and activism. But at the same time, there are so many cases when I look at this, whatever it is, website piece of software, and I’m like, is it inaccessible or is it just broken on the level of how it works? I mean, I’m interested in your perspective on that question because of just by virtue of what you do all day. But accessibility is a much more slippery concept than I originally gave it credit for, I think.
DARRYL ADAMS: Well, I love the answer because there is so much to be said about an individual’s skill set, how well the tools that you’re provided. And then also, those tools evolve as well, so everything is– we’re just in a continuously evolving landscape of the eyesight decline but then all of the technologies that are coming to bear over time that are helping improve things, but that also brings change, and change means you have to adapt. And so this adaptation is the key. But I think my intuition on the technology is that we’re going to continue to see just more easily– I’ll use the word accessible means of connect– or communicating with each other through the use of technology. But I think what we’ll end up seeing is much more personalized relationship with computing. And so instead of having just a general computer that is designed for everybody, our experiences will be generated in real time, and the generation of that experience will be based on your abilities. And so you can see a little bit what you’re presented with will be what you can see and not something that you can’t. If you can’t see at all, your experience will be conversational, period. And it’s going to be reading the screen. And it’s going to be conversing with you and engaging. So I think we’re seeing a lot of that today, and I’m excited to see where it goes. I guess my point on that would be that we’re not– what we know today will certainly be different tomorrow. One thing I can say is things are going to change, and they’re going to change dramatically.
ANDREW LELAND: I know Josh Mealey is a part of this conference. And there’s something that he said that I think speaks to that and just to my original sense of the slipperiness of the idea, where I think originally, I had this sense of accessibility as a binary, where it’s like the Checkout button is not labeled, so you physically can’t check out with a screen reader. And he made this point that if you have to tab 23 times to get to the Checkout button, that’s also a form of inaccessibility. And Chansi Fleet, who’s another mentor of mine in a way or just a thought leader– I’ve learned so much from her perspective on technology. She talks about how it’s like a second-class citizen experience of being a technology user. And so I think there’s real hope in what you just said that the platform could be conformed to the user rather than this universal design model, where it’s like hopefully, everybody gets to come along maybe that second-class experience of tapping 47 times, even if it’s technically accessible, will go by the wayside.
DARRYL ADAMS: That is the hope.
ANDREW LELAND: Yeah.
DARRYL ADAMS: Well, I really do want to thank you so much for being vulnerable, writing the book. You’re a fantastic communicator. The book is wonderful. I think it adds so much to the conversation on blindness and vision loss. And thank you for joining us today as well. We really appreciate it.
ANDREW LELAND: Well, thank you so much, Darryl. I really appreciate your saying that. And thanks for having me.