https://publicseminar.org/2023/10/andrew-leland-the-country-of-the-blind/
Twenty years ago, Andrew Leland was diagnosed with Retinitis Pigmentosa (RP). A degenerative eye disease, RP leads slowly and inexorably to total blindness. Leland’s new book, The Country of the Blind, is not only an account of the progress of his blindness, but also an exploration of the meaning of blindness—how he lives with it, and how others live with it.

Blindness is not a binary, as Leland points out. Only 15 percent of those legally blind are totally blind. Leland, who is legally blind but retains central vision, sees himself as “too blind to be sighted and too sighted to be blind.” His book explores his acceptance of that state and of being “out” about it. This includes the experience of using a white cane and the social problems it raises: people who view blindness as an either/or condition consider him a pity-seeker, since he can, after all, partially see.

In The Country of the Blind, Leland describes his experiences among the blind, including a course in which he artificially lives in the total blindness that will one day be his. He describes a world of organizations with disagreements over how blindness should be accommodated—even over the kind of white cane that should be used.

For some blind people, the cane, which Leland calls “the hammer and sickle” of blindness, must be brandished with pride. For such people, a cane that can be folded when not used is anathema, as it disguises—and disavows—the user’s blindness. Throughout The Country of the Blind, Leland shows sympathy and understanding for all points of view without hiding his own. I spoke with him over Skype.

Mitchell Abidor: Your book is not just about you and your experience of blindness, but about the blind community. What’s their reaction been?

Andrew Leland: Every day I get a handful of emails from blind people talking about how they see themselves in my experience. Many of those emails are from people with stories similar to mine, middle-aged guys with Retinitis Pigmentosa (RP), who are really responding to the ambiguity. It’s also been striking to hear from people who’ve been blind from birth, people much older and much younger. There’s something about feeling represented, not just in the specific RP experience, but the broader sense of alienation and ambiguity of the blind experience, regardless of one’s degree of blindness or when it was acquired. That’s been really gratifying. I was braced for the worst from the National Foundation of the Blind (NFB), but I got an email from the president that was very appreciative. By and large blind people are happy with the book because there just aren’t that many books that treat blindness seriously in this way, I think. There are a lot of memoirs that are focused on the emotional turmoil of the person who becomes blind, and there are a handful of super academic books that are pretty inaccessible in how they tell the story of blindness, so I think that that might account for the positive response.

Abidor: You mentioned alienation, and I’d like to look more closely at this. For me, what’s constitutive of my being is being a New Yorker, a Jew, and an atheist. Blindness doesn’t define me, nor do I think it is essential to my worldview. In fact, it’s just one more thing I’m alienated from, since I feel no sense of community with the blind. Your book is an account of your experiences in the blind community, so I was wondering how much blindness is integral to your existence, to your self-definition.

Leland: I know a lot of blind people who like you don’t feel that blindness is constitutive of their being. I certainly share that in the sense that if you delve deep into who I am I don’t think blindness is there. There’s some core part of me that doesn’t feel connected to that experience, but I don’t really know how long that’s going to be true, because I’ve leaned into it so hard.

For me, the experience of using a white cane every day in the world means that people look at me that way. If I’m thinking about my identity, there’s my gender, there’s my ethnicity—like a white guy or a Jew—and I do think blindness has become a core part of who I am. It’s in part because of the white cane and because of the way people treat me. And when I’m writing my book or reading a newspaper, it’s all audio now, and that’s a blind way of reading a newspaper. So I am blind and it’s seeping into me, it’s like a fluid that’s getting into all the root systems.

Abidor: In the book you speak of the “epistemology” of blindness and its “hermeneutics.” I wondered when I read this how many blind people, who are as a rule undereducated and poor, could understand those words, not to mention most sighted readers.

Leland: I talk in the book about my first trip to a picnic with other blind people in the middle of Missouri, where my wife and I ran away screaming: “These people don’t know from epistemology and hermeneutics; these aren’t our people.” Years later I reverse-engineered that picnic and I now know there was a guy there who edits the Braille Monitor for the NFB and does know about literature and philosophy. There are two parts to this.

On the one hand, yes, blind people are statistically undereducated and underemployed, and it’s a natural observation to question that if you’re writing about high-minded philosophical concepts, how much are you going to reach the blind community. When I interviewed the president of the National Federation of the Blind for a Times article and we got into these high-minded things, like representation, he said to me, “Look, my job is to be a representative for the blind people of the world, and we can talk about performance, but what they care about is that they’re getting the services they need.” But I think there’s also a place for theory. One of the things I’ve gotten from blind people is that they appreciate that my book isn’t over-simplified. I wrote the book in such a way that if you didn’t know what hermeneutics was you could look it up and read my bibliography—but if you didn’t care about that, you’d still be getting some useful history and interesting storytelling.

Abidor: What is it that you can’t do now that really causes you pain? Is there anything you think you’ve gained?

Leland: Driving. Not driving is a painful one for me. It’s a family thing: I want to jump in the car with my kid and take him to the mountains, just me and him. Living where we do in Western Massachusetts it would be lovely. And for my wife, too. There’s the masculine desire to be the guy driving her around. So I feel that. And as a journalist, just wanting to be able to rent a car in Alabama and wander. Exploring by car was something I really enjoyed and that I feel the loss of pretty acutely. Having the vision I still have I think there’s stuff that’s coming that will feel like an even greater loss, but I haven’t encountered that yet.

In terms of the gain: you know, I had a career as an editor before this book, I was hosting this arts and culture podcast, and that all felt good, but until I had this experience and started being into it and writing about it, I didn’t feel like a writer. In some ways this experience allowed me to become a writer.

Abidor: One of the things people involved with the blind liked when I talked with them about your book was how you discuss conflicts and differences of opinion between the different organizations and among individuals.

Leland: I think the idea of accommodations needs to be capacious, and that’s one of the problems of the NFB and where they get themselves in trouble, by saying things like audible pedestrian signals are an abomination, because they’re making an argument for all blind people about what reasonable accommodation is.

For me personally? I have a friend visiting from LA and we haven’t spent a lot of time together since I started using a cane, since I came out as a blind person, and he’s constantly telling me, “I’m on your right side now” or “There’s a curb over there,” and I let him say maybe two or three things and when it became clear he was going to be doing that constantly I told him not to do that anymore. Unless I’m about to be knocked unconscious by a swinging pole, let’s just be two guys out for a walk. I think the problem with excessive accommodations is that they do strip you of your dignity. Like when people tell me, “There’s a street there,” and I think, well, yeah, I know there’s a street there because I can hear the seven thousand tons roaring by.

There’s no bright line, though, that says this is a reasonable accommodation and this is demeaning. And this is what makes it so tricky. How do you expect the average person, with no experience of blindness, to understand the dynamics when they encounter you?

What’s taken me a while to understand about accommodations is the idea that they don’t have to be seen as a charity. You’re writing a book: Are you entitled to accommodations? Are you owed a magnifier so you can do your work? And I’d say yeah. That’s the litmus test for all accommodations.

Does that wheelchair user have a right to go into the post office? I think so, and we should build a ramp. But it’s not at all clear where the line should be. I think it’s crucial to determine which accommodations help blind people to participate in society.

Abidor: When I ask friends about why people don’t help me across the street they say well, they’re respecting your autonomy, which I think is giving people too much credit. I think they’re just uncaring.

Leland: I have a friend who’s been blind all her life, and the bane of her existence is people trying to help her. She teaches at Bowling Green in Ohio, she knows the campus backwards and forwards, but all day people are warning her, “There’s a tree” . It’s infuriating for her and I think she’s entitled to her fury. I think it comes down to there isn’t a rule here and if you want help you can ask for help.

I think the problem is expectations are so abysmally low of what blind people are capable of that often when you get the unnecessary offer of help, or worse, when people will just grab your elbow, I think that’s damaging and strips you of your dignity. I’m not blind to my core: if I’m just going out to grab a bite and suddenly someone puts me in this position of not just a blind person, but of a helpless blind person who needs to be taken around like a child, I do resent that.

I think if you were to make a rule about it, I think it should be: ask the blind person if they need help, don’t assume. My friend Sherry will tell people, “I’m good,” and people will say, “Fuck you bitch, I’m just trying to help.”

Abidor: At least the person showed a hint of human decency, so I’m gracious about it or will take the help on the rare occasions it’s offered …

Leland: The thing about someone offering Sherry help and her saying, “No, I’m good,” and the next statement being “Fuck you, bitch” is that evinces the reality that it’s not good-heartedness. That it’s coming from a place of something much more twisted. I think that’s the confounding thing about disability. It engenders this pity masquerading as compassion that is very frequently floating on a toxic puddle of contempt and resentment.

This was a fascinating story of Andrew Leland's journey to the country of the blind. Going blind is one of my biggest fears! Reading this was a slightly terrifying but also very enlightening.

Courageous and honest account of Leland's descent into blindness. Avoids sentimentality or pity and examines his worsening condition with pragmatism and bravery. It reveals so many things that those us with full sight take for granted and never even consider. A sad but fascinating and moving read.

The book is wide-ranging, which some readers may appreciate, but those who pick it up mostly for the autobiographical element may find the profusion of detail on assistive and medical technologies, activists and organizations overwhelming. It is most engaging when we get glimpses of Leland's own blindness journey or go along with him on his travels, such as to a National Federation of the Blind convention in Florida and to one of its residential training courses in Colorado, where he was given sleep shades to simulate total blindness and received lessons in cooking and cleaning. As well as giving a practical rundown of the various causes of blindness and attempts to mitigate it, the book launches a philosophical enquiry into what it means. Is it a formative trait, or something to be resisted? ...

In his first book, Andrew Leland shares his experience of going blind. He borrows its title from the Latin saying “In the kingdom of the blind, the one-eyed man is king.” H.G. Wells had a short story with the same title in which he imagined the country of blind people who don’t even know that seeing exists. In anticipation of becoming completely blind one day, Andrew Leland upends this experience by venturing on an exploration of the world of blind. He knows the world of seeing, what he wants to know is how to live when you no longer see. Interestingly, some blind people he talked to treat this moment as liberation from a constant worry of when or how it would happen. Leland's view is that “the life of a blind person is never fully (or even predominantly) defined by their blindness.” In that there is a lesson for all of us. As we follow Leland to the radical blindness center among other places, we learn about the history of blind community, how blind people find a way to have a full life and how they feel about the way they are sometimes treated. It's an eye-opening book full of Leland's introspective empathetic musings that go well beyond personal.. Highly recommended..

So often we think of being already being in their state of disability. But what about the phases before? Coming into the reality that will soon be your future. As someone who has recently started this journey, I found Leland's story both helpful and sobering.
Even those who are not facing a life altering change, I believe this gives a wonderful insight of what that experience is like.
Leland does a wonderful job exploring the world of the blind, both for himself and others.

This is a really good autobiography that accompanies the author on his trip into blindness...the cover is especially attractive (not that that is showing on Netgalley) and not that anyone who is blind can appreciate the cover but let's just say it is nicely showing people getting around whilst having low or no vision.

I don't know a lot about retinitis pigmentosa other than when it was a story on "The YOjng and The Restless" .. I had to google it to remember when it was a storyline....1993! (Y&R is on from 4.30 - 5.30 in Canada so it was always on during dinner prep after work at the college library!)

The author is unflinching in the story of his sight loss but presents a lot of help for people by suggesting organizations that can help low vision or completely blind persons. (Yes, the wait for a guide dog is long: often up to 2 years and it costs up to $30,000 to train a dog which is why I donate monthly to the CNIB.) There is humour to be found as well so the book is not a total bummer.

I will highly recommend this book and make sure that we get it in DAISY format for those who are sight and print-disabled - it is often hard to justify getting those books vs. audiobooks (the committee thinks audio books are more "accessible" as all you need is a phone or computer) but this one is the perfect fit.

Great read.

#shortbutsweetreviews

Thank you to NetGalley and the publisher for providing this book in exchange for an honest review.
The cover of this book immediately caught my attention because of the images. I'm slowly losing my vision too and a lot of the author's thoughts and experiences were relatable to me.
I mostly picked this book to learn of his experience and how he mentally dealt with vision loss. He weaves his story with information about blindness in history as well as the organizations that have been created to assist low vision and blind people to live independently.
Fascinating book!