In 2019, Andrew Leland started writing a e-book about blindness, whilst he was going steadily blind himself.
Working as his imaginative and prescient deteriorated gave him an insider’s perspective — who higher to put in writing concerning the blind than the blind? — however, as he realized, additionally made writing and reporting the e-book one thing of a trial.
He’d jot down notes with fat-tipped pens throughout interviews so he may extra readily see what he was writing; later, he used a six-button Braille show, an digital note-taking device that he was nonetheless mastering. “Once I downloaded my notes onto my pc,” he recalled, “it appeared like I had had a bottle of scotch earlier than writing them.”
At first, he figured his expertise made for the proper story arc: He would begin the e-book sighted, and finish it when he was blind. However that plan quickly fizzled. How would Leland know when he was actually blind?
As he notes within the e-book, solely about 15 p.c of blind individuals have completely no gentle notion; most see one thing, like Leland, whose peripheral imaginative and prescient is now lower than 6 p.c of a full visible discipline. If he waited till he was fully blind, he thought, he is perhaps 80, “nonetheless hanging on to eight photons of imaginative and prescient, going, ‘Nicely, I can’t write it but.’”
Leland plowed forward and completed his e-book, “The Nation of the Blind: A Memoir on the Finish of Sight,” in three years. Out on July 18 from Penguin Press, the e-book mixes memoir and reportage with fascinating dips into every little thing from the event of Braille to the historical past of the blind civil rights motion. James Joyce, Jorge Luis Borges and Henri Matisse additionally make appearances.
The memoir confronts many questions, chief amongst them: What does it imply to be blind in a world that always defines blindness because the worst factor that would probably occur?
“Blindness presents itself at first as this intractable catastrophe, that each one the belongings you liked are actually taken away from you, and there’s no technique to get them again,” Leland stated. “The fact is, they’re not gone. You simply have to determine a workaround.”
Leland was in center faculty when he realized that he may barely see at night time. In school, a physician instructed him he had retinitis pigmentosa, an incurable illness, and that he may count on to have respectable daytime imaginative and prescient into his 30s, however when center age hit, his peripheral imaginative and prescient would quickly erode till all he may see could be a tiny spot straight in entrance of him.
In 2009, when Leland was working as an editor at The Believer, a literary journal primarily based in San Francisco, he met Lily Gurton-Wachter, then a doctoral candidate in comparative literature. The 2 fell in love. When Leland proposed to her, he half-jokingly requested, “You keep in mind I’m going blind, proper?”
Gurton-Wachter, now a literature professor at Smith Faculty, performs an necessary function in Leland’s memoir, as does their son Oscar, now 10. She seems in most of the e-book’s finest scenes, together with one through which a boorish visitor at a cocktail party — a dad whom Leland describes as “wanting like an L.L. Bean mannequin” — begins asking a collection of invasive questions on how Leland felt about being blind. Then, he asks Gurton-Wachter what it was like having a husband who was shedding his imaginative and prescient.
Gurton-Wachter remembered the interplay as “very awkward,” she stated, and an indication that “we weren’t going to hang around with these individuals once more.”
However to Leland, the scene, with its inconsiderate cruelty, had loomed a lot bigger — one thing Gurton-Wachter solely realized when she learn the e-book.
The chasm between how blind and sighted individuals typically understand issues is a serious theme of the e-book. A lot of the drama facilities on how each Leland and Gurton-Wachter achieve a deeper understanding of what it means to be blind, and the way others view blindness — or select to not.
In one other scene, a youth chief reads a poem by Billy Collins throughout a Rosh Hashana service. Leland, his household and his mates hearken to the poem and its chorus — “fall to your knees and thank God on your eyesight”— in uncomfortable silence. Later, Gurton-Wachter emailed the rabbi, suggesting {that a} extra inclusive poem is perhaps a better option sooner or later.
“Years in the past, if I had heard that poem, I may not have thought it was an incredible poem, however I wouldn’t have actually understood its points with ableism,” she stated, utilizing a time period that broadly refers to behaviors, speech, norms or legal guidelines that demean or devalue disabled individuals.
“However now, I see the best way we use metaphors of imaginative and prescient and blindness in on a regular basis speech, on TV reveals or motion pictures,” she stated. “It’s all over the place.”
The e-book additionally follows Leland as he visits blind artists, engineers, and activists, together with Emilie Louise Gossiaux, an award-winning sculptor and painter who misplaced her imaginative and prescient in 2010, and Erin Lauridsen, the director of entry expertise at one of many nation’s most revolutionary blindness rehabilitation facilities.
At one level, Leland travels to the Colorado Middle for the Blind for 2 weeks of coaching. College students there take lessons in philosophy and woodworking, study to kayak and rock climb, hone their cooking and kitchen abilities, and navigate the realm, all whereas carrying sleep shades (basically, heavy-duty sleep masks) that fully block their imaginative and prescient.
The thought, stated Julie Deden, the middle’s director, is to construct confidence and independence. “It’s very liberating once they uncover that they’re in a position to do all these issues with out having any imaginative and prescient,” she stated.
Leland discovered the coaching transformative. “Simply sitting in a room carrying sleep shades, hanging out with different blind individuals carrying sleep shades, there was only a feeling of absolute normalcy and camaraderie and pleasure,” he stated.
Leland additionally takes on questions on being blind that many people would possibly by no means ask, or may not know whom to ask. Like: Can blind individuals be racist, since they don’t “see” shade? (Sure.) Do blind guys wish to know if the girl they’re talking to is fairly? (Some do.) Why do blind individuals like to decorate up? (As a result of they’re human.)
Over time, Leland labored laborious to enhance his mastery of expertise like display readers, software program packages that enable visually impaired customers to learn the textual content on a pc display. He made the choice after a blind girl instructed him that he ought to study now, reasonably than when his sight was gone for good, an expertise that for a lot of may be an emotional twister.
“I’ve heard tales of individuals having a misplaced month, however I’ve additionally heard tales of individuals having a misplaced 5 or 10 years,” he stated. “That’s not the time you wish to be attempting to memorize keyboard shortcuts.”
A lot of the e-book was written throughout the pandemic lockdown. The writing course of, he stated, stored him going regardless of his declining imaginative and prescient and accompanying worries concerning the future. The e-book, in any case, was about blindness, so every little thing was grist for the mill: the struggles and heartaches, in addition to the companionship and connection that got here from being with different blind individuals.
“If I had simply been working a job the place no person cared about what I used to be going by and it was simply purely impeding my progress, it will have been very tough,” he stated. However given the truth that he was writing about blindness, “shedding imaginative and prescient virtually felt productive. I used to be type of like, Oh, this stinks, however then once more, wonderful. I can meticulously observe this course of and write about it, and I’m getting work executed.”
