‘A radically distinct way of being in the world’: In his just-published memoir, Northampton writer Andrew Leland explores his growing loss of vision


Staff Writer

Published: 07-20-2023 3:12 PM

When Andrew Leland was diagnosed as a teenager with retinitis pigmentosa (RP), a degenerative eye disease that gradually causes most of its carriers to go blind, the problem seemed very distant.

Sure, he had trouble seeing at night; starlight, in fact, had become too dim for him to register. But doctors told him he would likely retain decent daytime vision well into his twenties and possibly through his thirties — and that science might well develop a cure for RP by the time his sight began declining more rapidly in middle age.

But these days, Leland, a freelance writer, editor and podcaster who lives in Northampton, is reckoning with vastly diminished sight, and he finds a metaphor of sorts for his situation in a line from Ernest Hemingway’s “The Sun Also Rises,” in which the character of Mike describes how he went bankrupt: “Two ways. Gradually and then suddenly.”

Yet Leland, who’s 42, has spent a lot of time over the last several years coming to terms with his loss of sight  – emotionally, psychologically and logistically – and adjusting to a new way of being in the world.

And in his thoughtful and absorbing book, “The Country of the Blind: A Memoir at the End of Sight,” he lays out a case for why blindness need not be a life-destroying condition and how he’s personally prepared for it, in part with the support of his wife, Lily, and their 10-year-old son, Oscar.

Not that it’s been an easy journey. In his memoir, published by Penguin Press, Leland documents the emotional rollercoaster he’s sometimes ridden over the years, going through periods of vulnerability, fear, even anger as he’s struggled to accept the loss of his vision and what that’s entailed, such as having to give up driving as well as riding his bicycle.

Yet the book is ultimately about realizing how much he can still do, such as writing and reading with the help of assistive technical devices like screen readers, software programs that allow text on computers to be read via speech synthesizers or braille displays.

“Most days I really do feel like my growing blindness is not to be feared,” he writes. “It isn’t a death sentence… A full and joyous blind life is indeed possible.”

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In a recent interview at his home, Leland said it’s important to “recognize myself as blind and not cling to the last bit of my sight as my only grip on the world. I need to accept myself as I am. I can still have love and community even with a disability.”

Today he has roughly 6 to 7 percent of the sight a person with normal vision has, with a tiny amount of peripheral vision and a small amount of forward, or central, vision, as if he’s looking through a narrow tunnel.

He can navigate the familiar confines of his home readily enough, but when walking outside or visiting a new location, he needs to use a cane to get around.

It was after he and Lily moved to Northampton in 2016 – she had been hired as a literature professor at Smith College – that Leland began using a cane regularly. He’d previously felt awkward doing so, both for the attention it would draw and because he was concerned people would perceive it as an affectation, since he still had some degree of sight.

“I thought, ‘I’m new here, no one knows me, so I can start fresh and not feel self-conscious,’” he said. “And doing that really was an important step in accepting my limitations.”

It was also after the family moved to Northampton from New York, where Lily had been finishing a book, that Leland began considering writing a book about blindness, both at the encouragement of friends and after a visit to the convention of the National Federation of the Blind (NFB), where he met people who have been blind since birth or who had lost their sight all at once.

“That gave me some additional perspective and made me realize ‘I think I have a story to tell,’” he said.

Taking a deep dive

Part of the appeal of “The Country of the Blind” is the deep sense of curiosity and of humor Leland brings to his book, such as an anecdote about how he once narrowly avoided a fight after he accidently stepped on the foot of a surly guy in a dimly lit bar, since he couldn’t see the man’s feet.

And when he explores total blindness by wearing sleep shades for hours at a Colorado center that shows blind people how to become more independent, he notes that face masks were required during mealtimes – this was during the pandemic – but that “with sleep shades on, and an almost entirely blind staff, enforcement was spotty.”

But Leland recounts much more than his own story. He takes a deep dive into the history, politics and culture of blindness, from the development of braille to portraits of people who opened the first schools for the blind, as well as accounts of other writers who lost their sight, from James Joyce to Jorge Luis Borges.

He also looks at the negative way in which blindness has often been presented in literature and society as a whole: as a completely debilitating condition that reduces one to, as he puts it, “incompetence or obliviousness.”

The language associated with blindness reinforces those stereotypes, he notes, with terms such as “blind fool,” “blind drunk,” and “blind spot.”

Even among some in the medical profession, Leland says, there can be a tendency to imagine the blind and disabled people in general as less capable, and living more stunted lives, than the independent and resourceful blind people he met during his research.

Indeed, he hadn’t been prepared for those kinds of stigmas and attitudes when he began work on his book – something, he notes, that may also have pointed to his own relative distance from the blind community at the time.

“It was kind of shocking,” said Leland, who has previously taught writing at Smith and radio reporting at the University of Massachusetts Amherst. “I think there’s a certain ignorance or limited view about what people are capable of doing.”

On a personal level, Leland offers a sometimes intimate look at how his condition has affected his family’s life and the tensions and misunderstandings that can arise. As one example, he recalls a time when Lily seemed impatient and annoyed at his slowness when they walked together, or at the way he’d miss something while cleaning the kitchen counter.

They worked around those issues, he writes, and Lily also gained a better understanding of his vision limitations when she watched him as he was tested a few years ago at Mass Eye and Ear in Boston. “The household has adjusted to my present level of blindness,” he writes.

One concern for the couple is that RP is a genetic disorder: Might their son inherit it? Right now, Leland says, they’re holding off on testing Oscar, thinking they’ll cross that bridge later if they have to.

Leland says he’d rather focus on positive things, like the time not long ago he and Oscar went to see a film at the Hampshire Mall. Rather than having Lily drive them there, they took the bus, Leland says: It was a means for him to demonstrate some independence and just chat with his son.

“We had a great time,” he said, “and we’ll do that again.”

Andrew Leland will discuss his memoir at the Odyssey Bookshop in South Hadley July 25 at 7 p.m.

Steve Pfarrer can be reached at spfarrer@gazettenet.com.