Writer Andrew Leland was in high school when he first noticed something wrong with his vision. He had trouble seeing at night and couldn’t make out stars in the sky. It wasn’t until college that he got his vision checked, and received a diagnosis for retinitis pigmentosa, an incurable disease that gradually leads to total blindness. Now in middle age, he has severe tunnel vision. With darkness closing in, he sees about 6% of what a fully-sighted person sees.
In “The Country of The Blind: A Memoir at the End Of Sight” (published summer 2023), Leland writes about his fears, how it would affect his marriage and family, and what it’s like being a world largely hostile to blind people. (Leland was also the host and producer of the longtime KCRW show “The Organist.”)
Leland describes his visual acuity as similar to looking through a paper towel roll, able to see certain parts of what’s in front of him. As a result, he uses a cane and a screen reader when he’s outside his home. His situation isn’t unlike other people with impaired vision. An estimated 15% of people who are blind actually see nothing.
“It's a very wide range of what sorts of visual input blind people are getting beyond that — everything from the inverse of what I have, where you only see periphery and nothing in the middle, or [a] lack of acuity, a general blurriness.”
He adds, “I think of myself as blind even while I can still do things that one would not imagine a blind person doing, like seeing a street sign or admiring your mustache.”
Read more: On blindness: Andrew Leland explores how losing his sight has expanded his world view
While navigating the world with his cane, Leland says he often encounters individuals who think they’re helping — sometimes they offer unprompted information about what street he’s on or offer to bring him an item. While he appreciates the sentiment, Leland says it only ostracizes him.
“Even if the intentions are good, the reality of it is that it makes you feel like you're abnormal. You're a problem. You're helpless. You're a child. You need to be managed in some way. It robs you of the dignity of being a person in line for a breakfast burrito like everybody else, and why do you need to be managed?”
However, in growing up as a sighted person, Leland says he feels both a connection with the blind world and discomfort and alienation. That’s part of why he decided to write “The Country of the Blind.”
“I still have some — one way to put it would be — internalized ableism. I'm still looking at other blind people the way that I don't like sighted people looking at me.”
He continues, “That was really important to me in writing this book to include those, frankly, ugly feelings and thoughts that I had, as a way of not letting myself off the hook. But also, I think, as a way for readers who may not be initiated into the world of disability and thinking about these issues, to say, ‘It's okay that you have these uncomfortable feelings around people with disabilities.’ But now let's interrogate them and solve them.”
Those uncomfortable feelings stem from the sociological stigma around blindness, Leland contends.
“Whether it's lines from the Bible about the miracle healing of blind people or … equating blindness with moral and intellectual ignorance … I hadn't interrogated any of those received ideas” he says. “And so I just looked at a blind person and saw those cultural narratives instead of actually seeing, surprise, a human being with all of their contingencies and specificities and normalcies.”
Effects on sexuality and masculinity
An anxiety Leland writes about is his relationship with his wife Lily and the idea of attraction and masculinity. He points to films and novels where characters with disabilities are cheated on, desexualized, or even eroticized.
“A lot of the reporting I did in the book is really to dismantle some of those ideas, and then shine a light on them and realize that they're fictions. I feel far less anxiety about any of that now that I've hung out with lots of blind people in happy marriages with sighted people, and blind people making out with sighted people and blind people.”
He adds, “Just as there are many ways to read, and there are many ways to speak, and there are many ways to move through the world — there are many ways to desire another person and to feel attraction for them and for them to feel attracted to you.”
Gaining new awareness
Leland says he’s worked to store visual memories, such as his family’s faces, as his vision has diminished. And while he sees it as a staggering loss, there’s also the opportunity to expand other ways of accessing the world around him.
“[In] immersing myself in the world of blindness, I can see the way that the world persists in blindness and not just the basic things like being able to eat and have friends, but noticing funny, weird, tiny little throwaway things.”
He points to an exercise wearing sleepshades during blindness training, where he encountered a stranger. Instead of focusing on the person’s appearance, Leland honed in on smell (weed and body odor) and voice tone (compassionate, educated, but also rough around the edges).
“All those details to me have the same richness as seeing that [for example] he was wearing a KCRW t-shirt or had a goatee or something like that. There's more to the world than all these visual details,” Leland explains.
Something else also happened while Leland wore sleep shades — he saw what he describes as borderline psychedelic imagery.
“Part of the phenomenon is that the visual cortices in the brain are still switched on. And in practice, I would see an environment around me as I imagined the environment around me and it didn't look photorealistic. It looked much more Tron-like. It was lots of vectors and shimmering polygons. But the same thing with sound. I remember, when I was under sleep shades, there was a toddler that came into the room and started babbling. And it really was like [the] aurora borealis or something. Their voice felt like something quite tangible.”
The grieving process behind losing sight
Accepting his blindness has been a work in progress, and he says it comes with a grieving process over the sight he’s lost.
“I'm still hanging on to that last 5%, and I don't know how to grieve what I haven't lost yet. … If you have a family member who's dying, can you grieve them while they're dying? And I think the answer is yes, I'm working really hard right now to accept it even before it's all gone.”
He adds, “It is work and I'm working incredibly hard right now to do that. [I’ve talked] to enough blind people who say to me over and over again … ‘Now's the time to figure out how to do it in a totally blind way. You don't want to be figuring that out when the other shoe drops.’”