Like you no doubt I wake and reach for the newspaper. If you’re younger maybe you reach for your Twitter feed but the instinct to see what’s happened overnight beyond the cave is universal. I’m still a newspaper dude though I view them online with screen reading software. Assistive technology keeps me in the game though I don’t really believe in that term since all technology is assistive whether you’ve a disability or not and there shouldn’t be any categorical distinctions.
Reading the news with a computer generated voice is not a good aesthetic experience. Hearing that a woman has just killed her autistic son with a band saw because “she couldn’t take it anymore” is shattering no matter how you encounter the story, but there’s something about the dolorous and impersonal computer that further shivers one–as if my Mac knows something I don’t. As if the Voiceover software invented by Apple to make all their products usable by the blind has been in touch with Hal from 2001 Space Odyssey and together they know disability doom is coming.
Disability doom is a large subject. From pre-natal testing and the abortion of Down syndrome babies to a new militant rightwing hostility to the Americans with Disabilities Act there’s every reason to think there’s a war on the disabled.
As what’s left of Western democratic traditions wilts under corporatized Neo-liberalism and nationalist populism (fascism) the disabled are in the cross hairs. Everyone’s in the crosshairs: high school children, people of color, women, trans and gay people. Fascism, allowed in the mainstream, sees all difference as deviant. Yet there’s something unique about the disabled: they trigger apprehension across all cohorts of diversity. As people literally struggle to survive, it’s easy to imagine the disabled are a burden. They’re a burden at your rally, your business, and yes, on the streets.
Cries come from all directions: we must get the mentally ill back into gated institutions. If we no longer have money to build these facilities we should put them all in prison. Currently the largest mental health faculty in California is the Los Angeles county jail.
Even as I type there’s a concerted movement on Capitol Hill to roll back important parts of the ADA. Even as I type the unemployment rate for the disabled remains at close to 70%. Even as I type veterans with disabilities are being denied services or or made to wait in line for help–a line that grows longer and longer.
As a poet who’s disabled I know a thing or two about irony. When disability is talked about in political circles there’s an assumption that “they” are not “us”–as if disability is something that happens to some other tribe, as if the disabled aren’t your mother, your father, sister, brother, uncles, neighbors, children, children, children. It’s this othering strategy that scares me the most. When the Americans with Disabilities Act was signed into law in 1990 there was a strong bi-partisan sense that the disabled are us. I think there’s an erosion going on. The irony works this way: we celebrate singular disability achievements–Aimee Mullins running on her blades and wearing designer clothing for the cameras; Marlee Matlin’s acting, Stevie Wonder’s music, and yet we think of them as exceptions, even as we imagine they’re representative of a large population. You can’t have it both ways. The disabled are us. Black, white, trans, gay, women, men, oh, wait I’ve already said that.
Right now I’m on a book tour of sorts. When interviewers ask me about my experience growing up pretending I could see more than I really could, asking as though I’m unique in that regard, I say: “this is not an uncommon story” because it’s true, and also to underscore that the singularity of one blind poet shouldn’t be mistaken for an isolating and categorical representation. The disabled I know, both here in the United States and around the world are struggling to stay in the public square.
ABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.
(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger