As we near the thirtieth anniversary of the Americans with Disabilities Act I’ve decided to post thirty short essays about the law, the anniversary, and the cultural impact of #ADA @30. I’m doing this as a disabled person who’s lived half his life before the ADA. I’m reflecting on the “before and after” of the law.
“Bicycle-Blind & Belabored”
In the mid 1990’s just three years after the adoption of the ADA I decided to write a memoir about growing up blind before I had any rights. Nonfiction was suddenly all the rage. The critical and commercial success of books like The Liars Club and Angela’s Ashes brought the memoir to the public’s attention. Where formerly “the memoir” had been the metier of statesmen or Hollywood has beens (I exaggerate only slightly) young writers were sharing stories about achieving self-awareness. The memoir was now about comic irony. Everyone could have his or her own bildungsroman and it was refreshing and by God there was a new law for cripples and overnight we had the public’s eye in new ways. Lucy Greeley’s Autobiography of a Face was brand new as I began my first book, Planet of the Blind. Memoir was fresh; the ADA was new; disabled writers had a chance.
Literature aside this is what the ADA means: the disabled getting their chance. (A joke I love says we call the United States “the melting pot” because scum rises to the top while the people on the bottom get burned.) The disabled were always on the bottom, a fact made all the worse if they were poor, black, or if they were crippled women. America had always believed cripples belonged in asylums, “special” schools, that room behind the family garage—anyplace but the village square. In her groundbreaking 1998 book Claiming Disability Simi Linton presented a new vision of the Parthenon marbles, a bas relief for what the ADA meant and means:
We have come out not with brown woolen lap robes over our withered legs or dark glasses over our pale eyes but in shorts and sandals, in overalls and business suits, dressed for play and work — straightforward, unmasked, and unapologetic. We are, as Crosby, Stills, and Nash told their Woodstock audience, letting our “freak flag fly.” And we are not only the high-toned wheelchair athletes seen in recent television ads but the gangly, pudgy, lumpy, and bumpy of us, declaring that shame will no longer structure our wardrobe or our discourse. We are everywhere these days, wheeling and loping down the street, tapping our canes, sucking on our breathing tubes, following our guide dogs, puffing and sipping on the mouth sticks that propel our motorized chairs. We may drool, hear voices, speak in staccato syllables, wear catheters to collect our urine, or live with a compromised immune system. We are all bound together, not by this list of our collective symptoms but by the social and political circumstances that have forged us as a group. We have found one another and found a voice to express not despair at our fate but outrage at our social positioning. Our symptoms, though sometimes painful, scary, unpleasant, or difficult to manage, are nevertheless part of the dailiness of life. They exist and have existed in all communities throughout time. What we rail against are the strategies used to deprive us of rights, opportunity, and the pursuit of pleasure.
It was a dazzling party. Even if disability scholars and writers didn’t quite know each other in the last moments before the world wide web, the ADA had sprung us; provided us with optimism; it gave us what Linton calls the dailiness of life. And along with that came stories. I wrote about being lonesome as a boy, about the hardships of blindness and the static miseries of shame. I described my mother’s terror of disability and how she pushed me to pretend to be normal—a story which is legion among the disabled and is all too often prevalent among people like me who are legally blind. We can’t see well enough to read books, recognize people, read signs—we see like abstract painters. My mother wanted me to go to a public school, not the dreaded school for the blind, and she pushed me into a very unfriendly world always demanding that I never reveal how blind I really was. That was life pre-ADA. Pre-inclusive education. No one in my parents’ circle believed the disabled could pursue pleasure unless they appeared normal. One of the first passages I wrote in Planet of the Blind was a memory about riding a bicycle in early childhood:
I would conquer space by hurtling through it. I wore telescopic glasses, suffered from crushing headaches, but still chose to ride a bicycle—with nothing more than adrenaline for assurance.
How do you ride a bicycle when you can’t see? You hold your head like a stiff flower and tilt toward the light. You think not at all about your chances—the sheer physicality of gutters and pavements. One submits to Holy Rule and spins ahead.
Picture this: A darkness rises. Is it a tree or a shadow? A shadow or a truck? The thrill of the high wire is the greatest wonder of the brain. There is, at the center of our skulls, a terrible glittering, a requiem light. I lower my face to the cold handlebars and decide it’s a shadow, a hole in sunlight, and pedal straight through.
Here’s another shadow, and another. I turn sharply but this time plunge into tall weeds. Insects rise into my hair, cling to my sweaty face. From the road comes the hiss of angered gravel, a car roars past. Thanks be to God! I’m alive in the wild carrot leaf!
I let a bee walk along my wrist, feel it browse on my perspiration. The bicycle coasts, and I squint in the glare, and then I hit a root. As I fall, I take the sting of bee, then the sting of cement. My glasses fly off. The only thing I wonder is whether I’ve been seen. Nothing with this boy must be amiss! He belongs on the street!
Now I’m on my knees groping for the glasses. My wrist has swollen. One wheel is still spinning. I’ve barely struck the ground, and my fingers are everywhere. I must find the glasses before anyone sees me. No one must know how evanescent is my seeing. No one must know how dangerous my cycling really is.
In summary, if I didn’t look normal, if I wasn’t successful in the attempt, then putative strangers would come and take me to the “blind school”—my mother made certain I understood this. She passed her fears down to her altogether trusting little boy.
Pre-ADA was about ugly charades, the “on fire” agonies, the humiliations of passing. God help you if you couldn’t. There would be no public square for you. By this I mean available, open, admissible space. If you were crippled on the street you were subject to cruelty. If you were crippled at the university they’d be sure to tell you to leave.
As late as 1985—yes, believe it—just five years before ADA, I was told by a graduate professor that if I was blind I shouldn’t be in his class. This was at the University of Iowa. That’s pre-ADA in a nutshell. I went to the department chair—he called me a whiner; I went to the Dean, he looked at his watch; I went to the university’s “ombudsmen” (quite a feat since his office was incredibly well hidden) and he also looked at his watch; I talked to the moribund and ineffectual disability support office—they said, the best we can do is give you a note that says you can have more time for exams. The demeaning, bigoted, ableist hostility was untouchable.
I left without my Ph.D. I already had a graduate degree in poetry writing. I packed up. Pre-ADA there was no recourse. If they told you to get lost, well, you didn’t have ammo to fight with.
Those who say the ADA has’t done enough for the disabled are not wrong. And there are still professors everywhere like the late Dr. Sherman Paul who treated me with unspeakable disdain. But post-ADA you can fight back. Post-ADA there are consequences provided you’re willing to snarl and push. There’s still a boatload of ableism around. It may even be fashionable with some. But ableism is long past its sell date and it smells funny—by which I mean you can’t hide it anymore.
I know the ADA hasn’t created lots of jobs and I know it hasn’t changed every mind. Even now the Chamber of Commerce still fights disability rights. Last year with the Chamber’s help Domino’s Pizza tried to say the blind don’t have the right to use their websites—they lost in court—but you see how it goes.
No one should have to risk death to prove he or she or they belong on the street as I had to so long ago. The ADA has driven a stake through that monster’s heart.
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