NORTHAMPTON — For a long time — too long perhaps — Andrew Leland resisted using a cane to navigate crowded sidewalks, bars, friends’ apartments, or other unfamiliar spaces.
A degenerative eye disease diagnosed when he was a teenager had so degraded Leland’s vision over 20 years that he’d become a danger to himself and others, and yet he wasn’t comfortable brandishing such a stark signifier of blindness.
“As soon as you bring the cane out in any situation, it’s like a lightning rod,” he said. “The default assumption is: white cane means total absence of vision, and that creates a lot of ambiguity.”
Some react with pity or, worse, prejudice. But Leland, a writer and podcaster who lives in Northampton with his wife and 10-year-old son, is at last embracing his blindness. His new memoir, “The Country of the Blind,” chronicles Leland’s inexorable transition from full vision to near-total sightlessness, and the avalanche of emotions — bewilderment, wonder, dread — he’s experienced along the way.
The book, which comes out Tuesday, is a deeply personal account of what it means to be blind in America and how Leland, now 42, continues to grapple with the inevitable darkness.
“At some point, I began to think about what kind of blind person am I going to be?” he said. “How is this going to fit into my life? That became a very urgent question for me.”
Initially, it wasn’t. After being diagnosed with retinitis pigmentosa (RP) — a genetic disease that causes cells in the retina to break down over time, leading eventually to total blindness — Leland wasn’t instantly alarmed. He was 19, after all, and doctors said his field of vision would narrow slowly. He was told it would be at least a few decades before he lost his sight — a “distant eventuality,” Leland writes.
“It was like fatherhood or death,” he said, sitting in the kitchen of his house a few blocks from Smith College, where his wife, Lily Gurton-Wachter, is an associate professor of English. “This was going to happen someday, but there were no constraints on my life then, so why would I spend a lot of time worrying about it.”
Through his 20s and early 30s, Leland, whose grandfather was the celebrated playwright Neil Simon, worked as managing editor of The Believer, a San Francisco-based magazine published by McSweeney’s, the independent press begun by Dave Eggers. The hours were long — he was the only full-time, paid employee, handling everything from copy editing to art direction — but Leland loved it.
“It was like seven MFAs three-dimensionally folded in on each other,” he said. “It was amazing.”
He also developed and hosted “The Organist,” a smart arts-and-culture podcast. In a 2018 episode, Leland, who’d begun to write about blindness in ways that weren’t always personal, explored the phenomenon of “Stevie truthers,” a community of conspiracy theorists who believe Stevie Wonder is faking his blindness.
“There were fascinating things about blindness I was uncovering,” he said.
The most common early symptom of RP is night blindness, which Leland experienced mildly at first — it was a “conversation piece, a humorous liability at parties,” he writes — but as it worsened and his peripheral vision deteriorated, Leland had to confront the reality of his condition.
Using a cane would have been prudent. His diminished vision had caused minor mishaps: He hip-checked a toddler in a coffee shop, spilled a full beer on a bar patron. But even if Leland’s porthole of vision had dwindled significantly, he knew that “coming out as blind” would change the way he was perceived and treated. He worried that a cane would invite sympathy, condescension, or scorn.
“Society has profoundly low expectations for what blind people are capable of doing,” he said. “In the cultural imagination, vision is synonymous with knowledge. The inverse is that ignorance and blindness are aligned.”
Leland spent three years writing and researching the book, interviewing other blind people, disability experts, and accessibility researchers. He notes that just 16 percent of blind Americans graduate from college — less than half the national average — and, incredibly, the unemployment rate among people in the US who are blind is stuck at about 70 percent — 14 times that of the general population.
Sheri Wells-Jensen, a friend of Leland’s who has been blind since birth, said most newly blind people have a terrible time adjusting to losing their sight, and many never do.
“They just never get their joy back. They’re always living as a blind person from a sighted person’s perspective,” said Wells-Jensen, an associate professor of linguistics at Bowling Green State University. “There’s a huge chasm that you can learn about but mainstream society doesn’t give you a bridge to get across it. There’s a lot to do to get from where Andrew was to where he is, to a confident, capable, joyful life as a blind person.”
There continue to be moments of fear — an “unavoidable, painful morass of feelings,” Leland writes, especially when he thinks about someday not being able to see his son’s face — but he’s determined to adapt. He can still read magnified text, but often uses a screen reader, a software program that allows blind people to read words on a screen with a speech synthesizer or braille display.
He’s effectively training himself to be blind. During the pandemic, Leland spent two weeks at the renowned Colorado Center for the Blind, where he wore vision-occluding sleep shades for eight hours a day to simulate sightlessness while learning, or relearning, how to operate appliances and cross busy intersections. “They dropped me off on a street in Denver and I had to figure out how to find the bus and get back to the center,” he said. “And I did it.”
This sort of training can be both tedious and terrifying, he said, but it’s a palliative against feelings of panic about what’s to come.
“When I was writing the book, I practiced using the screen reader on my phone and computer. It was like a gym membership: ‘Ugh, I gotta go to the gym,’” Leland said. “I don’t need this yet, but I do it to be a good blind citizen.”
Working on the book also sensitized Leland to the cliched portrayals of blind people in popular culture. “They’re either Tiresian seers or bumbling Mr. Magoos,” he said. (Not much better is Al Pacino’s absurd performance in “Scent of a Woman,” which was rewarded with an Oscar.) Ignored, Leland said, is everyone else, including the many great writers, like John Milton, James Thurber, and Jorge Luis Borges, who remained productive long after losing most or all of their eyesight.
In person and in print, Leland can be funny and he’s steadfastly unsentimental. He writes poignantly about his son, Oscar, who was 4 when Leland started using a cane. “Of anybody in my life, including me, blindness is the most normal for Oscar, and that’s so powerful for me.”
In the end, Leland has come to understand that the experience of blindness encompasses “tragedy and beauty, the apocalyptic and the commonplace, terror and calm,” and he’s good with all of it.
“We don’t see, or see very well,” he writes, “but aside from that, we’re just like you.”