Thirty for Thirty on the ADA
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.
Essay 2: “Coming out of the Dark”
“Get out of your comfort zone.” “Think outside the box.” You’ve heard the phrases. Disabled people are ironic counterpoints to both of these sayings—we’re not in the comfort zone and we don’t have to be told to think imaginatively—all our rendezvous with “normal” require fresh thinking.
The ADA was signed in the year of Billy Joel’s “We Didn’t Start the Fire” and if you’re a fan of cognitive dissonance you’ll recall the disabled “did” start the fire—Viet Nam veterans, advocates for the mentally ill, Baby Boom cripples who wanted lives and careers from main street to Wall Street—these men and women started a fire with their identification papers. They also crawled up the steps of the US Capitol, disrupted political conventions, and occupied hundreds of hostile public spaces.
This thirty year old landmark civil rights law didn’t happen overnight. You can read about the groundbreaking work to launch the ADA in Enabling Acts by Lennard Davis. He tells how pioneering disability activists like Judy Heumann, Ed Roberts, Pat Wright, Bob Funk, Arlene Mayerson, Mary Lou Breslin made the difficult journey from California to Washington DC in 1980. The back story of the ADA is remarkable for its grass roots, its sophisticated, its doggedness, its faith and tireless optimism.
The fuel for the fire was pure, unadulterated inaccessibility. If you were a wheelchair user you couldn’t take public transportation, couldn’t get into civic offices, businesses, take a taxicab; if you were blind you could get a guide dog or a stick but you had no rights to education. If you were mentally ill or neuro-divergent you could count on being a shut in or a patient in a ward. If you were born after the ADA you might not know how bad it was unless you’ve taken a disability history course. It was bad.
While Judy Heumann and so many others were descending on Washington I was in Iowa City, blind, trying to get a grad degree and finding the university was hostile to the disabled. I didn’t have disability pals. I internalized the disdain of others and suffered. I was abject.
The only thing I knew how to do in 1980 was dream. Dreaming is good. But there were fighters out there in the bigger world who were and remain my allies though I didn’t know about them back then.
In 1980 I didn’t have the knowledge as a blind person about how to travel safely.
My memoir Have Dog, Will Travel: A Poet’s Journey in part relives that era:
I’d worked all my life—had actually choreographed it—so I could travel to small and secure places without a white stick. I’d attended college at Hobart and William Smith in Geneva, New York, where my father was the president. I knew every inch of the campus. I learned in a private, ill-favored way how to walk mnemonically. It was eight steps down from the English Department to the sidewalk; seventeen steps to a funny break in that same sidewalk which somehow never got repaired; thirty steps between the post office entrance and my mailbox. I wandered by rote. At a school with only 1,600 students I could pretend to see. When I couldn’t manage it, I’d say I had vision problems. Anything sounded better than blindness. I had “vision issues.” I needed extra time to complete reading assignments. One of my eyes drifted. But still, seeing me move with intention from place to place, many friends and faculty had no idea how all encompassing my charade really was.
When I decided to attend graduate school at the University of Iowa’s Writers’ Workshop I flew to Iowa City three months early and walked the town like a crime-scene investigator. I walked in little grids. I moved haltingly up and down dozens of streets. When I thought no one was watching I drew a telescope from my pocket and read the street signs. I hiked in the stifling summer heat and worried about people marking me as deviant.
Far away from Iowa smart activists were challenging everything I was struggling with. Disability would no longer be deviant.
Today I teach at Syracuse University and work on interdisciplinary disability teaching and research in the Burton Blatt Institute.
Burton Blatt was also a pioneer of disability rights. The BBI website notes he was “an advocate of deinstitutionalization, and he helped initiate community living programs and family support services. In his clinical work he emphasized the provision of education to children with severe disabilities, those whom he called “clinically homeless.” As a national leader in special education, he called for programs to integrate students with disabilities into public schools and worked to promote a more open society for them.”
Thirty years after the ADA was signed that work continues. Inclusion means opening the doors for non-speaking people, making certain the clinically homeless are part of the community, standing for accessible design, pushing for self determination, fighting for ecological justice, black disabled lives, inclusive education—and this is only a partial list.
Another great song from 1990 was Gloria Estefan’s “Coming Out of the Dark.” Perfect.
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