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Susan Nussbaum on how she became a groundbreaking voice in the disabled community

Susan Nussbaum

Susan Nussbaum

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Updated: June 4, 2013 7:14AM

When I became a wheelchair-user in the late ’70s, I had learned everything about being disabled from reading books and watching movies — and they scared the hell out of me. Tiny Tim was long-suffering and angelic, and was cured at the end. Quasimodo was a monster who loved in vain and was killed at the end. Lenny was a child who killed anything soft, and George had to shoot him. Ahab was a bitter amputee, and he didn’t care how many died in his mad pursuit to avenge himself on a whale. Laura Wingfield had a limp, so no man would ever love her.

With this imagery fresh in my mind, my own future seemed to hold little promise. Before I was injured in a car accident, I had been in acting school. As all of the theaters had become inaccessible to me, both behind the stage and in front, and the chances of any director in the world hiring me were remote, I decided I had no choice but to reinvent myself.

I joined the disability rights movement, barely organized in Chicago back then, and quickly came to realize that I was not alone. My surprisingly militant comrades and I addressed the issues that were most pressing at the time: fighting and winning the right to wheelchair-accessible public transportation; the remodeling of sidewalks, schools, stores, theaters and the rest of the world; and protesting the systemic discrimination against us in every aspect of the bureaucracy we had become so dependent upon. My transformation from shamed victim to furiously rebellious crip (we took back the word that had oppressed us and used it in our own proud, new vocabulary of defiance) was the foundation of my new identity. It still is.

As the scope of our movement broadened, so did my view of what was possible. I became a writer. If the dominant culture was saturated with backward concepts of who we were, I would answer back with my own collection of disabled characters. None of those people writing books and movies that exploited their disabled characters as metaphors were disabled themselves. And who were these glamorous stars dying to catch that juicy disabled role, to do their best imitations and take home their Oscar? They knew little, if anything, about the experiences of real disabled people.

I knew the world, the jokes, the words, the underground details. I knew the struggles, the brutality of oppression, the love that held us together. I was a genuine crip writer, writing about crips.

None of the characters I write about are courageous or angelic or suicidal, bitter about their fate, ashamed, apt to kill because they have an intellectual or psychiatric disability, dreaming of being cured or even vaguely concerned with being cured.

My latest novel, Good Kings, Bad Kings, is about a group of disabled kids who live in an institution and some of the adults who work there. Being trapped in one kind of institution or another is the fate of many of us. The characters in my book are dealing with a place that’s not one of the worst, but abuse and neglect are rampant nonetheless. Some of them are sucked under by the riptide of repression, some of them bob to the surface against all odds — and maybe one or two find a way to fly away.

I have no illusions that this book, or the other fine work being done by disabled artists today, has replaced the imagery of former days. Those vicious stereotypes are alive and well. They’ve simply been recycled. So for now, disabled writers, playwrights, screenwriters and poets will have to be activists as well. But that’s OK. If we keep working, the real thing might catch on someday.

Chicago author Susan Nussbaum will be speaking at the Swedish American Museum (5211 N. Clark Street), June 5 at 7:30 p.m. The event is hosted by Women and Children First bookstore, and more information can be found at

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