I used to wonder where all the writers who have used disabled characters so liberally in their work were doing their research.
When I became a wheelchair-user in the late '70s, all I knew about being disabled I learned from reading books and watching movies, and that scared the shit 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, but it was for the best. Lenny was a child who killed anything soft, and George had to shoot him. It was a mercy killing. Ahab was a bitter amputee and didn't care how many died in his mad pursuit to avenge himself on a whale. Laura Wingeld had a limp so no man would ever love her.
This imagery fresh in my mind, my own future seemed to hold little promise. I had been in acting school at the time I was injured. As all of the theaters were now 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 ourselves to 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. 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 "symbols" 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 all three dimensions, not the tired one dimension they put out there for the public to eat. I knew the struggles, the brutality of oppression, the love that held us together. I was the real thing, the authentic article. A genuine crip writer, writing about crips.
None of the characters I write about are particularly courageous or angelic or suicidal, bitter for their fate, ashamed to be alive, apt to kill anyone because they have an intellectual or psychiatric disability, or dreaming of being cured or even vaguely concerned with being cured.
I wrote plays. Having been an actress, that's how I saw and heard my characters. They were all produced, all relatively successful. All but one play. My last play and also my best play. I was sure I would break through the barriers with this one. Like African American writers had to fight for their own authentic voices onstage; that would be me with disabled voices. I got a New York agent! But no matter how close I got, I couldn't get it produced, and I gave up writing. I think my heart was broken.
But eventually I decided to reinvent myself. Re-reinvent myself.
My book is about a bunch of disabled people who live in an institution for kids with disabilities. Some of the characters 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.
Susan Nussbaum was awarded the 2012 PEN/Bellwether Prize for Socially Engaged Fiction. Her novel 'Good Kings, Bad Kings' will be published by Algonquin Books in 2013. This essay was first published in The Algonquin Reader.