Disability Rights and the Lived Experiences of Visual Impairment in The Country of the Blind: An Interview with Andrew Leland

Evan P. Sullivan

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Andrew Leland’s 2023 book The Country of the Blind, a finalist for the Pulitzer Prize, is an absorbing exploration of blindness and disability in twenty-first-century America. Leland, who is visually impaired from retinitis pigmentosa, surveys the many challenges and opportunities blind and visually impaired people have experienced as a result of losing their sight and confronting ableism. From stories about assistive technology and national conferences for blind people to explorations of love and loss, Leland’s book is an engrossing memoir that highlights the multiplicity of experiences of being a visually impaired person in the United States.

Responses have been edited for length and clarity.

You named your book after the H.G. Wells short story, “The Country of the Blind.” What do you think twenty-first-century Americans unfamiliar with disability rights could take away from that story?

The story is about this explorer who is separated from his expedition in the Andes mountains, and he falls into a rock slide into this lost civilization that’s been living untouched by anyone else for generations. It’s the proverbial “Country of the Blind” where everyone in this village is blind, just like their ancestors going back generations. Wells takes his title from the proverb, “In the country of the blind, the one-eyed man is king.” Nuñez, the explorer, thinks of himself in this imperialist/colonialist attitude, and thinks, “Well, I can dominate.” He can’t, and in fact he is at the disadvantage in the Country of the Blind because he is outnumbered and because the way they built their world puts them at the advantage and puts the sighted person at a disadvantage. The story very cleverly inverts the sort of standard, mainstream attitudes about the hierarchy of the senses with vision at the top.

I think the answer to your question is the arbitrariness of the mainstream. We have chosen this norm, and built the world to accommodate the norm, but the norm is only the norm by this sort of accident of history and biology. That’s the beauty of science fiction, is to imagine something that could in fact be real. I do think that the way that he describes the Country of the Blind is an illuminating example of how, when you build with a different user in mind, the norm can shift. Thinking about disability, and thinking about disability rights, certainly requires a very similar imaginative shift in one’s thinking.

Your book interweaves personal experiences of becoming blind with broader social perceptions of blindness in ways that illuminate the social model of disability. For readers unfamiliar with the social model, how would you describe it as it relates to your own experiences of blindness?

Wells’s story gestures towards the social model that stipulates the idea that it’s not the condition itself that’s disabling but rather the way society has constructed itself and constructed the disability. The classic example is architectural access and mobility disabilities. It’s not that a wheelchair user is inherently disabled, or that there’s something wrong with their body; it’s just that the building has been built without imagining the possibility that a wheelchair user might want to enter it. I think my book engages with the social model insofar as I’m concerned both with evaluating and understanding my own experience but also putting it in the larger context of blindness and disability history and culture. My experience of disability and vision loss begins in a medical theater, and it really takes a concerted effort on my part, acts of imagination and empathy and intellectual inquiry and curiosity, to push beyond that sort of disease/sufferer framework into a broader world. This is why and where I borrow Wells’s title from – to think there’s this stage one of a doctor making a diagnosis and a prognosis, and my experience limited to doctors’ visits and feeling alone in the sort of ambiguity of the very gradual process of vision loss. And then, my encounter with the social model really only comes when I start to seek out not just other blind people but blind people who are really active in the politics and culture and movement around blindness.

I was struck by your conversation with Will Butler at the National Federation of the Blind (NFB) convention, including the part about Will’s decision to use the phrase “becoming blind” rather than “going blind.” Could you, for those who haven’t read your book yet, briefly explain this interaction and why it is such a significant part of your book?

Will has been one of the people who has helped me understand the possibilities of blindness, and the power of it, and the community of it, but also the humor in it, the joy in it, and also the normalcy of it – that it didn’t have to be this sort of tragic or even wonderful thing. It could just be a thing that has a sort of neutrality to it in a lot of situations. And, I think one of the more powerful statements that he made to that end was the one that you just quoted, that going blind really does evoke the stigma of blindness that is so prevalent in the way that blindness is talked about and represented. It triggers all the fear and tragic aura that blindness carries so much of the time. Whereas becoming blind emphasizes it as a state of being. A spiritual brother of Will Butler’s might be the Argentine writer Jorge Luis Borges, who said something that’s related, which is that blindness shouldn’t be looked at as a tragedy, it’s just one among many styles of living. The NFB talks a lot about alternative techniques. You might read visually in print, and I read with a screen reader or in Braille, but there doesn’t need to be a hierarchy there, which there so often is. To think of screen reading as an alternative technique does some of the work that the social model does, which is to say, no, we don’t need to have this food pyramid where print is at the top and screen readers are at the bottom, or Braille is in the middle. It’s more of this parallel move.

You dispel the existence of a blindness/sighted binary in your book. Why do you think it is important for sighted people unfamiliar with visual impairment to understand the transitional nature of blindness that many visually-impaired people experience?

For me, still to this day, I catch myself kind of litigating my own blindness and thinking, “Who are you to be talking to Nursing Clio about blindness if you still have usable central vision that you can use to read magnified print or recognize faces?” While I do recognize that categories exist for a reason and that it is necessary to be able to define your terms on some level, it actually does harm to over-litigate that and to say, “Well, you know, he’s not really blind.” It just forces you into these hierarchies. To invoke the NFB again, I think their definition of blindness – which is different than the legal definition – is really useful. I’m not quoting this chapter and verse but they say that if you rely on assistive technology to do your daily living, then you’re blind. Which is to say that, if you need a white cane or a screen reader or magnification software or even just a magnifying glass, like, you can be in the club, you can call yourself blind. And I think the importance of that and the power of that is that there is an incredibly pervasive force of denial that just rips through the world of blindness and blind communities and blind people.

I enjoyed reading some of the historical examples that you give in your book of blind activists’ conservatism with regards to resisting different forms of assistive technology. Did any of that come as a surprise to you?

Yeah, I found that quite surprising. [An] example is when audible pedestrian signals first came out, which nowadays often sound like electronic bird chirps. In the beginning, they were much more like terrible bells ringing. The NFB’s argument was, our job as the National Federation of the Blind is to convince the world that with alternative techniques and accommodations, we should be able to join the workforce on full footing. The worry was that if you had a loud bell ringing on every street corner to help the blind then that would sort of paint the wrong picture. So the NFB is an incredibly well-organized political machine so they came out very forcefully against this. Then you have the NFB’s arch nemesis organization, the American Council of the Blind, saying perhaps the less surprising take, that, “These are actually kind of helpful. No, we want them.” And so it was baffling to see that these local municipalities would have these warring groups of blind people on either side of this debate. And, yeah, that conservatism did surprise me. There are still some debates about accessibility that the ACB and NFB I think are on different sides, but in general, they have come around.

You include some discussion about physicians who do not have much in the way of training in the social constructions of disability. Do you feel as though some training in disability studies should be required for medical degrees?

Absolutely. I think about the horror stories I’ve heard of people who have been diagnosed with incurable or untreatable eye diseases, and then the doctor just has no bedside manner to talk about it in a way that feels emotionally accommodating. I think training in the social model of disability is important, especially for every optometrist or ophthalmologist to have an understanding of what blind people are capable of. And not just the super-Everest-climbing over-achieving blind people, but what the average blind person is capable of, in a way that I think would really transform the way that blindness gets talked about. I don’t have any illusion that doctors need to be cheerleading blindness, and I think it’s a noble pursuit to devote one’s life to preventing disease and injury and disability. Even for all of my love of disability, disabled wisdom, disabled joy, and disability culture, I think there is a place in the world for medicine to seek to reverse or prevent it. But it has to come with an understanding of the fact that, in the absence of that prevention, disability does not need to be a tragedy.

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Featured image caption: Detail from The Country of the Blind by Andrew Leland. (Courtesy Penguin Random House)