Susan Nussbaum: My Disability Was Nothing Personal
At age 24, she learned how to become disabled.
Posted Sep 04, 2013
Guest blogger Susan Nussbaum, author of Good King Bad King
I grew up in the 1960’s. Around the middle of that decade, I was old enough to begin thinking for myself, and my early confidence in my country eroded. I came to see with shattering clarity that wars weren’t necessarily fought to protect high ideals, that deeply racist policies were not only tolerated, but also cynically perpetuated at home, and violence and discrimination against women and LGBT people was business as usual. I turned 18, left home, joined The Movement, and continued my education at endless political meetings, protests, and days spent organizing, recruiting and encouraging others to see what I had seen – that the personal was political.
I had a job, given to me through a family friend. There was a stair to the women’s bathroom, so I used a closet with a urinal down the hall. A woman I worked with helped with the door and stood watch. My co-workers went out to lunch most days, but I never went along. I didn’t want them to worry about getting me up and down the curbs or up and down the stairs of a restaurant. And I didn’t want to be seen in public. Not in my clunky power wheelchair. I never went out in those days. It seemed like everyone passing by either pretended I wasn’t there or smiled at me so hard their faces would break. I hated them all.
There was no public transit for people in wheelchairs, so an ambulance had to pick me up from home every morning, and again from work at the end of the day. It took hours to get home most nights, because they made lots of other pick ups and drop offs along the way. On the ambulance I met other disabled people, some were young like me. We talked about how unfair this was, this system of doing things. Sometimes the ramp on the ambulance broke, and we’d wait endlessly for a different ambulance to come, and we’d be lifted out of the dead ambulance, and driven home at last. We said to each other, at least we have jobs. There aren’t very many of us who can get jobs. That’s why you never saw any other disabled people in the streets. Except for the beggars. Yes, we were the lucky ones.
Through the rage and shame I carried with me like a straining dog on a leash, I dimly saw that what I was experiencing in the streets, at my job, my seemingly futile search for accessible housing, in every corner of my new life, was unjust. But this was a health problem. A medical problem. My problem, and mine alone.
The rage fueled me, but the shame defeated me. I told myself I should be grateful for that urinal at work. Without it I’d have to find a bathroom on another street. If the door was too narrow, it was because my wheelchair was too wide. If riding in ambulances sucked, I should advocate for more efficient ambulances. If I felt invisible to everyone around me, I must need psychotherapy. When people casually commented how much they admired me, that if it were them they’d kill themselves, I’d nod, speechless.
Then I heard about a place called Access Living. It had only been open a few months. They fought for disability rights, they said. Disability rights? Was there really such a thing? I immediately knew I belonged there, and even before my employment interview, I quit my job, urinal and all.
At first, I watched and listened. They didn’t talk about more efficient ambulances. They talked about busting in on the meetings of the Chicago Transit Authority Board of Directors. They talked about a group of disabled people and their allies in Denver who in their frustration had taken a sledge hammer and smashed a bunch of curbs. They talked about sex and independence and told outrageously funny stories about public displays of paternalism. Everyone who worked there was young and disabled, but “disabled” wasn’t the word we used with each other. With each other we were “crips”, having appropriated the oppressive “cripple” and integrated it into our proud new vocabulary of defiance.
One morning I arrived at the office and heard people laughing – hard -- in our tiny conference room. I went nearer and heard a guy I worked with telling the story of how he became disabled. It involved, among other things, a jeep, a deserted campground, alcohol and a blow job. I laughed, and thought how cool it was to be an insider with this group of crips. How no one knew – yet -- of our subversive humor, and our little movement’s big plans, but us. I understood at last, and set aside my anger and shame. It wasn’t personal. It was political.
Playwright Susan Nussbaum’s works have been produced at many theaters. In 2008 she was cited by the Utne Reader as one of “50 Visionaries Who Are Changing Your World” for her work with girls with disabilities. Nussbaum lives in Chicago. Good Kings Bad Kings, her powerful debut novel, invites us into a landscape populated with young people whose lives have been irreversibly changed by misfortune but whose voices resound with resilience, courage, and humor.