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The Chicago Review of Books is proud to partner with The Chills at Will Podcast to share new audio interviews with today’s brightest literary stars, including Jonathan Escoffery, Morgan Talty, Deesha Philyaw, Luis Alberto Urrea, and more. Hosted by Peter Riehl, The Chills at Will Podcast is a celebration of the visceral beauty of literature and the passages that thrills us as readers.
Years of being an educator and evangelist for the written word, working in audio production on such acclaimed projects as The Organist, and writing and producing for such outlets as Radiolab and The New Yorker Radio Hour have given Andrew Leland unmistakable “chops” in the art of storytelling in its varied forms.
The Country of the Blind: A Memoir at the End of Sight is a work of art that features humor (often self-deprecating), intriguing histories, a celebration of those doing the work and who have done the work in disability activist circles, and an emotions-on-sleeves candor about his conflicted emotions regarding the subtle worsening of his vision due to his diagnosis of RP (Retinitis Pigmentosa).
I spoke with Andrew about the balance of technology, art, and creativity that continues to govern his writing and career, the philosophy of “going blind” versus “becoming blind,” the spectrum of blindness, and salient themes in his book like intersectionality, ableism, and differing ideas of how society sees the blind and disabled, and how this affects Andrew and others in similar situations.
This interview has been edited for length and clarity.
From the episode:
Pete Riehl:
I’m interested in how this book became what it is, and any other permutations that preceded the final version. What made you think there was a book there, and what made you continue?
Andrew Leland:
In 2016 I was making The Organist podcast (for Los Angeles’s KCRW), and I was teaching and I had just moved to Massachusetts. One thing that happened that year was that I decided, Okay, I carry around this white cane folded up in my bag all the time, and I almost never bring it out because I’m super ashamed of it, and it’s super embarrassing whenever I use it in public. But this is an opportunity; I’m not going to know anybody in Northampton, Massachusetts, so why don’t I just be a cane user when I get to Massachusetts?
I did that and overnight blindness sort of burst into my life, though it’s not like my vision suddenly changed. My vision changes over the course of two years or so; I’m on “the two year plan.”
But overnight, it felt like a dramatic change because of the social experience of being in public with a white cane and that just turbocharged all of my thinking about it. [Suddenly] it was in my mind that I should write about this.
Though there was no real [clear] sense of, like how I would do that, [I told myself] I have to do it.
Pete Riehl:
In the book you talk about “going blind” versus “becoming blind.” I wonder if maybe you can talk a little bit about that, especially the difference in mindset that it implies?
Andrew Leland:
That’s something that came from my conversations with Will Butler, who’s also a writer. These days, he works for Apple in their accessibility department and I think he’s younger than I am, but he’s definitely a mentor, because he’s been blind for longer.
And he also has just thought about it a lot more deeply than I have. Something [meaningful] that he told me is that he thinks of “blindness as more like an arrival than a departure.”
And he thinks of himself as becoming blind rather than going blind, because going blind has all these negative connotations to it, right?
It’s a really powerful idea, gaining something from an experience of loss. I wanted to be super careful about [including the distinction] not just because it sounds good and publishers like it. It’s inspirational, and I tried to hold myself to a pretty high standard and only let myself express the idea if I also included, like, all the ambivalence I felt around it.
In the end, I feel like I believe in [this philosophy], though of course, I don’t believe it to the point where I think that everyone should try going blind sometime, right? The reality is, I think, if [increasing blindness] is happening to you, it doesn’t have to be like pure tragedy, yet I think anybody who grows up with vision and loses it, there has to be an aspect of grief to that, and you do have to get through it.
It’s not like it’s fun, but I’ll make the bold claim that it’s possible to experience [blindness] as a simultaneous reduction of your world, while it also opens you up to new experiences, new people, new feelings, and new ways of thinking.
Pete Riehl:
In the book, you discuss the huge spectrum of blindness–there are people who were born completely blind, people who are going or becoming blind, people who have RP [Retinitis Pigmentosa, the eye condition that Andrew has].
It’s seemingly obvious, but the ways in which you describe the spectrum is thorough and necessary, adding so much to the reader’s experience.
Andrew Leland:
Well, it’s actually not obvious, amazingly, because in particular, if you think about the word “blind,” if I say it to you or to a person on the street, like, “Picture this blind guy,” right?
The person you picture has zero light perception, I would imagine, right? They’re wearing dark glasses and they have a long white cane or a dog, and they probably are miserable in some fundamental way, right? Like if they’re not selling pencils, they’re probably about to walk in front of a bus. They certainly don’t have a family and a job and a passion for ice hockey.
The reality that I found is that, first of all, fewer than ten percent, or some estimates say 15 percent, of blind people have no light perception. The vast majority do see something. The unemployment thing is real, but it’s not for want of trying.
Pete Riehl:
The 70 percent blind unemployment rate figure that you cite—those numbers are frightening. Unacceptable.
Andrew Leland:
Yes, unacceptable. Then there’s just the normalcy of life for a blind person. I think people lose [perspective]. They just can’t hold on to the fact that a blind person might be into, you know, Japanese horror movies or ice hockey, or exotic pizza. It’s just like [the blind person] is probably feeling sad and maybe likes animals… like an infantilization, right? As if the blind only like kid stuff.
Pete Riehl:
You really dove in, like Hunter S. Thompson style, with the National Federation of the Blind convention, and then when you visited the residential training center, the Colorado Center for the Blind. That was somewhere you were [for an extended period of time]. It wasn’t like just being there for an hour. You were there as part of the convention, as part of the institution in Colorado. Will Butler, who you mentioned earlier, had some conversations with you there at the National Federation for the Blind Convention.
There were times when you were in tears, as you write, just to see the care that people had for each other and the joy spread by a shared joke that maybe you don’t make with a sighted person– the joke being, “Oh man, you know, sorry, I wandered into the wrong room again” and just that easy back-and-forth.
I wonder how the National Federation of the Blind convention changed you: it’s not a whole 180, of course–but how your mindset shifted a little bit.
Andrew Leland:
The first blindness event I attended was a picnic of a local chapter of the National Federation of the Blind (NFB). That was a situation where I could stand at the periphery and kind of cast judgment, but the NFB national convention, which is in a giant, convention center–that’s different. They move the venue around the country, and the year I went, it was in Orlando, Florida.
It’s 3,000 blind people. You’re sort of literally in a crush of canes and dogs and a flow of people. At the convention, there are people who call themselves “talking signs.” At most conventions, there’ll just be a little sign on the wall that alerts people to meeting times and places–Amateur Radio at 4:00, for example. Obviously, that doesn’t work for blind people, and not everybody’s a Braille reader.
And also, it wouldn’t make sense for 60 people to run their hands across this tiny makeshift sign.
So you have just a person standing outside saying “Amateur radio meetup, 4:00, amateur radio meetup 4:00.” It’s just this sense of almost sonic sensory overload.
Pete Riehl:
You write about medical advances as well with regard to the spectrum of blindness, meaning the biotech area–stem cells and gene therapy, for example. Based on what your doctors have told you, “lukewarm” would probably be the way to describe your thoughts on these medical advancements.
Andrew Leland:
(Laughs) Thank you for identifying that.
Pete Riehl:
Some of them are quite tech-heavy. There’s one that you described that has a sort of wing design, like contacts with wings. Oh man, that sounded painful.
AL: I was at the eye doctor the other day, and there was a woman who was, I think, just diagnosed, and I was sort of chatting with her and she told me that she just did the thing you’re talking about –it’s called the ERG. I felt like we were in deep solidarity about it.
Pete Riehl:
You talk about one of the doctors who I’m sure has great things at heart, but was almost trying to make like a cyborg with biotechnology. It speaks to this idea of how much is too much tech? Is this really the person’s body anymore? With one of the new innovations, you’re seeing light, but it’s an artificial light. Am I correct in saying that if you had to lean towards one or the other, it would be the gene therapy over the stem cell? Or is that more of your doctor saying that?
Andrew Leland:
That was what my doctor said, yes. Since the book has come out, my inbox is full of blind people, particularly people who are sort of in my situation, who are writing, “Hey, man, I’m doing this clinical trial.”
When I hear about the experience of people in clinical trials I’m reminded that one of the hardest things about having RP is not knowing the future. You’re like, Okay, I still have some vision that I’m using, but it’s going away, and I don’t know how fast it’s going away.
Maybe functional vision will be around for 20 years, or maybe some part of it will be around for 20 years, or maybe it’ll be around for one year, and that really messes with your head. I think that when you’re in a clinical trial and there’s this giant literal microscope being put on your experience, which you’re already sort of helpless to micro-analyze anyway, it messes with your head too much. I just don’t want that in my life, you know?
So for me, if my doctor says to me, “Great news, put in these eye drops for the next week and then you’re good,” or like, “You’re going to get this surgery and then hooray!” Yes, I will do that. But until then, I’m not [using the new inventions]. I’m continuing to delete the Google alerts [that are often full of biotech updates regarding RP and blindness]. I’m not going to clinical trials. I’m glad it’s happening, but I spend my time, you know, learning how to use my screen reader better, trying to keep my blindness skills up, practicing braille, trying to learn how to be happy and effective and productive as a blind person and not pin[ning] my hopes on vision.
This interview is excerpted from Episode 222 of the Chills at Will Podcast. Listen to the complete conversation here.
NONFICTION
The Country of the Blind: A Memoir at the End of Sight
By Andrew Leland
Penguin Press
Published July 18, 2023
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