February 20, 2010
Tribal Membership
This week I received an email from someone I didn’t know, a wheelchair user. He’s a quad who became disabled after a diving accident over thirty-five years ago. How do I know all that from the first line of his email? He told me. It read, “I am a C5-6 quad since a 1976 diving injury.” I wasn’t surprised, it’s how many disabled people introduce themselves.
I was surprised, though, by my reaction, not a first, but after I’d thought about it. Initially, I was put off by his medicalization of his identity. He didn’t say, as I do, “I’m a wheelchair user.” I prefer to identify myself by my social identity, i.e. a disabled person or wheelchair user. The world sees me using a wheelchair and even though they don’t know “what happened” (as much as most would like to ask) they stereotype me based on that assessment. I want to identify with the broadest aspect of my community, disabled people. It’s the strategy I use to remind myself of my pride in my membership. And for the world it’s my desire to focus on something other than the oft-asked question, “What happened?” I’m not particularly interested in recounting my history, nor do I want to disclose, “How much can you feel?”
But then, I realized that just as I have taken a pejorative, “disabled,” and termed it a positive, he was too, by giving me his lineage—his membership in our clan and tribe. He gave me his bona fides, his place in the disability family tree. He described, in essence, his clan, “quads.” He gave me the date of his initiation into the clan. He let me know that he wasn’t new to all this and that his clan is in the family tree of people with spinal cord injuries. He and I are cousins, we’re SCI (spinal cord injury) cousins.
It is, of course, an imperfect analogy, but it helped me understand more about our emerging identities. How we see ourselves—disabled, with a disability, handicapable—shapes us and ultimately shapes the world. Remember, we caused the transformation of the built environment in the United States with our new-found civil rights identity.
Sometimes I worry that we are too ashamed being disabled. Like the GLBT community there is shame attached to our identity—a shame that we need to reconcile within ourselves. The medical model terminology helps some disabled people to avoid the societally imposed shame. Unfortunately, invoking the medical leads back to objectification and reducing us to the specifics of our uncured selves. It also gives up the power of identity to doctors rather than holding it to ourselves.
So, perhaps, by invoking family, clan, and tribal affiliations we’re turning the medical upside down. If we are proud of who we are as a people, we can also be proud of disabled brothers, sisters, and cousins.