New Yorker Article on Blindess

Metadata

Author: Alan Jacobs
Full Title: New Yorker Article on Blindess
Category: #books

Highlights

Ifirst noticed something wrong with my eyes in New Mexico. I was a freshman in high school, in the mid-nineties, and had recently been accepted into a clique of older kids whom I admired—the inner circle of Santa Fe Prep’s druggie bohemian scene. We hung out at Hank’s house; he was our charismatic leader, and his mom was maximally permissive. One night, in Hank’s room, our friend Chad sat on a beanbag chair, packing a pipe with weed. Nina danced alone in front of a boom box to Jane’s Addiction, throwing around her bleached hair. After dark, we hiked up the hill behind the house to get a view of the city. The moon was bright, but I found myself tripping on roots and stones and wandering off track. At one point, I walked right into a piñon tree with prickly branches. My friends laughed—“You’re stoned, aren’t you?” Chad said—and I played up my intoxication for effect. But, on the way down, I quietly put a hand on Hank’s shoulder. This became common. At the movies, I got up to get a soda, and, when I returned, I couldn’t find my mother in the rows of featureless bodies. I complained about night blindness, but my mother assured me it was normal—it was dark out there! Eventually, though, she brought me to see an eye doctor. After a series of tests, he sat us down and said that I had retinitis pigmentosa, or R.P., a rare disease affecting about a hundred thousand people in the U.S. As the disease progressed, the rod cells around the edges of my retina would die, followed by the cones. My vision would contract, like looking through a paper-towel roll. By middle age, I’d be completely blind. The doctor asked if I could see stars, and I said that I hadn’t seen them in years. This was the detail that made it real for my mother. “You can’t see stars?” she asked. I spent my teen-age years mostly in denial: my blindness seemed distant, like fatherhood, or death. But in my thirties the disease caught up with me. One morning, I swung my car into a crosswalk and heard—and felt—something slamming my hood: I had almost hit a pedestrian, and he was banging my car with his fist, shouting, “Open your fucking eyes!” Soon after, I almost hit a cyclist, and I gave up driving. One weekend, while living in Missouri, I found that I had lost my sunglasses. My wife, Lily, was out of town, so I decided to walk to a nearby LensCrafters. But what was normally a ten-minute drive became a harrowing ordeal on foot. There were few sidewalks, so I walked in the road, with cars speeding past. The sun and haze made it hard to see. I stood for a long time at a large intersection, trying to turn left without getting hit by a truck. In 2011, I ordered an I.D. cane, used less for tapping around than to signal to the world that its bearer might not see well. It folded up, and mostly I hid it in my bag. But, after running into fire hydrants and hip-checking a toddler in a café, I began using it full time. Reading became difficult: the white of the page took on a wince-inducing glare, and the words frosted over, like the lowermost lines on the optometrist’s eye chart. It was only once I’d reached this stage that my diagnosis started to feel real. I frantically wondered whether I should use my last years to, say, visit Japan, or plow through the Criterion Collection, instead of spending my evenings watching “Crazy Ex-Girlfriend” with Lily. One night, I lay awake in bed. I knew that, if Lily were awake, she’d be able to see the blankets, the window, the door, but, when I scanned the room, I saw nothing, just the flashers and floaters that oscillated in my eyes. Is this what it will be like? I wondered, casting my gaze around like a dead flashlight. I felt like I’d been buried alive. In 2020, I heard about a residential training school called the Colorado Center for the Blind, in Littleton. The C.C.B. is part of the National Federation of the Blind, and is staffed almost entirely by blind people. Students live there for several months, wearing eye-covering shades and learning to navigate the world without sight. The N.F.B. takes a radical approach to cultivating blind independence. Students use power saws in a woodshop, take white-water-rafting trips, and go skiing. To graduate, they have to produce professional documents and cook a meal for sixty people. The most notorious test is the “independent drop”: a student is driven in circles, and then dropped off at a mystery location in Denver, without a smartphone. (Sometimes, advanced students are left in the middle of a park, or the upper level of a parking garage.) Then the student has to find her way back to the Colorado Center, and she is allowed to ask one person one question along the way. A member of an R.P. support group told me, “People come back from those programs loaded for bear”—ready to hunt the big game of blindness. Katie Carmack, a social worker with R.P., told me, of her time there, “It was an epiphany.” That fall, I signed up. In 1966, the sociologist Robert Scott spent three years visiting agencies for the blind for his book “The Making of Blind Men.” Most of these agencies, whose methods were based on the training programs developed for veterans after the First World War, took an “accommodative approach”: they believed that clients could never be truly independent, and strove only to keep them safe and comfortable. The agencies installed automated bells over their front doors so that residents could easily find the entrance from the street, served pre-cut foods, and gave out only spoons. They celebrated clients for the tiniest accomplishments, with the result that, as Scott put it, “many of them come to believe that the underlying assumption must be that blindness makes them incompetent.” Blind education already had a fraught history. The first secular institution for the blind—the Hospice des Quinze-Vingts, established by King Louis IX of France around 1260—housed residents, but required them to beg on the streets for bread. Blind people were popularly depicted as lecherous, duplicitous, and drunk. The first schools that actually tried to teach blind students were established in the eighteenth century. Catherine Kudlick, a disability historian, pointed out that this was during the height of the Enlightenment, when there were discussions about educating women and people from the lower classes. “The idea was to give them the tools so that they could become educated members of society,” she said. But, in their determination to prepare students for employment, many schools, like other institutions at the time, came to resemble sweatshops, making blind children spin wool and grind tobacco for subminimum wages. The best institutions Scott visited were those that followed the philosophy of Father Thomas Carroll, a Catholic priest who worked at the Army’s rehabilitation centers during the Second World War, where many innovations—including the long white cane—were first developed. Carroll argued that the average blind person is capable of some independence. His students took fencing lessons, which he thought helped with balance. But Carroll took a surprisingly grim view of blindness. “Loss of sight is a dying,” he wrote. His students, he believed, would always be significantly impaired. One student who recently attended the Carroll Center, in Newton, Massachusetts, told me that he felt coddled there. “I didn’t feel a lot of independence,” he said. “We go to these places because we want to level up our independence, and be pushed to the edge. We need that.” Carroll’s philosophy met its sharpest critic in Kenneth Jernigan, the president of the National Federation of the Blind. The N.F.B. was founded, in 1940, as an organization of and not for the blind: its constitution mandated that a majority of its chapter members had to be blind. Jernigan rejected Carroll’s Freudian sense of blindness—Carroll has described it in terms of castration—in favor of a civil-rights approach. Blindness, he insisted, was merely a characteristic, like hair color; it was an intolerant society that was disabling. He organized protests against airline policies that forced blind passengers to sit in handicap seats and give up their canes; his f