Seeing Outside the Disability Box
by Howard Axelrod
Reprinted from “The New York Times,” April 12, 2017.
To read this article online, go to https://www.nytimes.com/2017/04/12/opinion/seeing-outside-the-disability-box.html?emc=eta1.
Not long ago I had an experience that most authors wish for. Someone recommended my book.
A librarian at the Toronto Public Library had included my book on a list, along with five others, in celebration of International Day of Persons with Disabilities. Two of the other authors have autism, one is deaf, one was born without legs, and the fifth, a woman who has cerebral palsy, endured a 16-month escape from her native Syria in a wheelchair. I should have felt proud to be in their company. I should have sent the link to my parents, as I’ve done with other lists my book has made. But I didn’t. I felt confused.
I don’t think of myself as disabled. Twenty-three years ago, when I was a junior at Harvard, a boy’s finger hooked into my right eye during a basketball game, shearing my optic nerve from the back of my eyeball. Without an intact optic nerve, my right eye cannot relay information to my brain. As someone blind in one eye, I qualify as a person with a disability under the Americans with Disabilities Act, but I can also drive and play sports, and my cognitive abilities have not changed. To consider myself a person with a disability doesn’t seem right, especially compared with the other authors on the library’s list.
And yet, I also don’t think of myself as the opposite of disabled — whatever the word for that is. Depth perception depends on binocular vision: The brain needs information from both eyes to coordinate where objects are in space. Without depth perception, I often stumble on stairs and curbs, and sudden drop-offs, like sunken living rooms, greet me with a jolt. I also have no peripheral vision on my right-hand side, so I try to position myself on the right in meetings, in restaurants, and when walking with friends. I rely on my hearing, which has become almost painfully acute since my eye accident, to negotiate busy sidewalks. Even so, with a blind spot on my right side larger than my brain remembers, I often crash in crowds.
All of which puts me in what box? Half-disabled? Being privileged enough not to need special accommodations, I hadn’t needed to ask myself that question. And in my one friendship with someone else with monocular vision, the question never came up. But other questions did, and they were crucial in shaping my perspective. The friendship was with the neurologist Oliver Sacks.
Four years ago, Oliver and I met at an artist residency in the Adirondacks. He had also lost vision in his right eye, and at night, on our cottage’s shared porch, he asked questions no one had ever asked me. Did I dream with depth perception? When Oliver did, he said, he awoke with a profound sense of loss. Did I fear losing vision in my left eye? His fear, he said, sometimes overwhelmed him. Did I dread rainy days, with their threat of umbrella spokes? He certainly did.
These conversations comforted me more than I can say; they were about how each of us experienced life, not about how we classified ourselves. My memoir, which I was writing at the time, probed similar questions, telling the story of my two years in solitude in northern Vermont, where I retreated in my mid-20s in an effort to answer the larger questions my accident had stirred up.
But from the day of publication, the boxes began appearing, even stealing into the book itself. The Library of Congress catalogued the book under “People with Visual Disabilities,” ahead of “Solitude,” “Self-Perception” and “Vermont.” During a Q. and A. after my first reading, a stranger rose from his seat and asked, “Do you consider yourself disabled?” And at a book club event, an earnest woman urged me to engage with the Massachusetts Association for the Blind.
So perhaps it seems naïve, even professionally irresponsible, for me still to have qualms about the box question. Perhaps it seems that because my impairment is largely invisible (a predicament roughly 26 million Americans share), I’ve let an invisible shame keep an important part of my identity invisible, too. Or perhaps it seems I’m ambivalent because there’s no appropriate box for me.
But here’s where I check none of the above. Even if one day a new disability box appears, one that allows for a simultaneous sense of both (disabled and not disabled) and neither, it won’t answer my question, because my discomfort is a response to the box question itself. I understand that how people choose to identify themselves is important for many reasons, including public policy reform and the allocation of government resources. Those forms and boxes, ideally, play a role in strengthening civil rights. But the question of identification is different from the question of identity, a distinction that identity boxes, and identity politics, can’t help blurring.
For me, one telling identity question, one that registers the change in my life since my accident, came to me through Oliver. As our friendship grew beyond the residency, and we talked more about his work, I realized that his curiosity, at bottom, had to do with the nature of consciousness — with the range of human experience as embodied in unique, particular lives. That was the paradox of his work: He recognized the person with the impairment, whom society was ready to dismiss, not only as human, but also as a key to understanding what it means to be human.
From Oliver I learned that the important question was not “what do you identify as?” but “who do you identify with?” Asking myself this question helped me recognize changes in my own identity, subtle shifts in my attention and empathy that occurred after my accident. Without quite realizing it, I had begun to identify with anyone whose life threw into question normative assumptions about how daily life works.
This wasn’t a political choice. And it wasn’t a social choice. The heart of identity is the part of identity that isn’t a choice at all — the little mirrors in others that you’re attuned to and that show you a reflection of yourself, for better or for worse.
Little mirrors are not likely to replace boxes on forms any time soon. But if that’s what that librarian in Toronto thought my book might provide, then I’m extremely proud.