Proof of life

I read a lot of disability studies literature. And I buy more than I have time to read. When I was in high school in the late '80s there was no such thing as disability studies literature. There was the tabloid newspaper version of the Ragged Edge -- called The Disability Rag back then -- and that was about it. The Rag was all I had as proof that the societal experience of disability wasn't in my head. When I tried to apply what I was learning in a Minority Politics class to disability, my social studies teacher was polite but not encouraging. He didn't see the connection at all.

As an undergrad in political science when the ADA (Americans with Disabilities Act) passed in 1990, I repeatedly attempted to cover disability issues in my elective topic assignments. Other than the deluge of panicky articles on compliance written for business owners and employers, little was available at the library for research. I did have a professor in African American Politics who accepted my assertion that disabled people are a political and social identity group. And he was generous with my wandering analyses and tangential questions, but his class was on black folks. No such class existed at that time about people like me.

Years passed and in the late '90s while wandering a Borders bookstore I found several books about disability politics and activism in the education section under "special needs." (Yeah, that's a little like finding a collection of speeches by Martin Luther King, Jr. in the music section with the books on jazz. Or feminist theory under "parenting.") I bought all three books that I found because I feared I'd never see them again. The university library lagged behind, but it too showed improvement. I learned of several academic journals specifically about disability as a social experience -- instead of addressing disabled people as medical/rehabilitative subjects, these journals turned the lens around and examined how everyone else treated disability and the persons affected by it. I joined the Society for Disability Studies, an organization for academics, professionals and activists interested in disability.

Whenever I could afford it, I snapped up the new books appearing under "special needs." The Body and Physical Difference : Discourses of Disability. The Disability Studies Reader. Claiming Disability: Knowledge and Identity. I also talked to the bookstore about their Dewey-Stupid system and suggested they move the books to respective sections on cultural studies or history or whatever, but they were incapable of that sort of initiative. At home, I lined up my purchased books and counted them frequently. Gleefully. I counted them like an eight-year-old counts her candy bars at Halloween.

And when I read these books I wasn't looking to learn anything new at first, though over the years I have learned a great deal. Did you know that people who carry the recessive traits for sickle-cell anemia and cystic fibrosis are resistant to malaria and cholera, respectively? (Thank you, Lennard Davis.) Those are hidden benefits to two dreaded disabling conditions. It's possible that the genetic differences these people carry could help humanity someday.

Did you know that in the 19th century, Martha's Vineyard was an isolated whaling community with a high incidence of hereditary deafness and communication on the island was routinely in sign language, whether participants were deaf or not? It was a solid part of the culture there and a naturally evolving accommodation that benefited all. Whalers could sign from ship to ship easier than using voice.

Anyway, I didn't originally buy all these books to learn. I bought them as proof of the events I experience everyday when I roll out my door -- I needed to see my life in print. I bought them to see if anyone else had been able to articulate something I had never satisfactorily put in words about my social identity. And I bought them because I had searched for them for so very long. Now I no longer keep count of how many books I have or how many exist yet to buy, and instead I enjoy the still growing complexity of the theory and political importance of what they have to say. I use them to help explain my life to others when I can. Best of all, disability studies helps me grasp the spirit and challenges of feminism in a way that seems to work for me, though the book that articulates that fully hasn't been written yet. Or maybe it's shelved somewhere strange and I haven't wandered past it yet.