When I was a kid, I developed a theory that people with my disability were really the hybrid offspring of space aliens.
Oh, sure, doctors said it was something called osteogenesis imperfecta, but they were just hiding The Truth: that my brittle bones, which fractured dozens of times before I reached age 10, simply couldn't withstand earth's gravity because they were actually designed for zero-g space travel. Also, having softer bones allowed my skull to expand so it could accommodate my larger, more highly evolved brain.
Just check out the picture accompanying this story. Don't I look like something out of a science-fiction movie?
I liked this theory. It made a lot more sense than the medicalese being thrown at me; it still does. And it goes a long way toward explaining why--as friends and family have told me--I'm such a bossy and manipulative little prick sometimes. When the flying saucers return and take over this planet, I expect they'll put me in charge, so I might as well start practicing. Kneel before me, puny earthlings!
Back in my childhood, very little was known about the genetics of OI. If anyone had asked me what a genome was, I'd have pointed at one of those ugly clay figures that decorated suburban lawns in the '70s. Today, of course, the human genome has been fully mapped, and it's no longer sci-fi daydreaming to think that one day doctors will be able to treat or even cure conditions like OI right at the DNA level.
Some folks in the disability community see gene mapping as a threat. They view it as one more marker on the slippery slope from "cure" to genocide. To me, that's alarmist, but I can't say I'm interested in being "cured" either. Whenever I'm asked questions like, "If you were offered a pill that would make you normal overnight, would you take it?" I always answer no--because "normal" is an overrated concept, and because learning how to be ablebodied at my age would be a huge waste of time. I'm too busy to learn to walk.
Besides, my disability is a part of who I am. If, in 1964, someone had surgically removed the OI from little Doug-the-zygote's genes, I'd have grown up a different person. Note that I said different, not better; having a disability might have given me some good qualities, but at times it's also made me depressed, angry, mean and not at all fun to be around. Still, all things considered, I like this version of myself and don't wish to go back in time to revise it.
Others disabled from birth do, though--and I'm more than a bit tired of the party line in the disability movement that says hoping for a cure is anti-crip. Since when? Do we tell people with AIDS they have to choose between finding a cure and guaranteeing their rights? Of course, AIDS is a fatal illness, not just a disability. But life is fatal. We're all--disabled or not--looking to postpone that fate as long as possible, and to live as well as we can in the process.
There are people I know with OI who are so full of Crip Pride they're about to pop: They work at CILs, protect and defend the ADA and travel all over the world to show what's possible for people with disabilities, yet if they could wake up tomorrow and be free of OI, they'd break every bone in their bodies jumping at the chance. Why? Because having OI sucks. Particularly when you're a child--you have one fracture after another, you have so many surgeries you know the recovery-room nurses by name, and you spend more time in the hospital than at school. It gets better when you reach adulthood, but OI is still a bitch, and no amount of civil rights laws, accessible toilets or disability-studies classes in college--all good things in themselves--will make it any less so.
And while I--complaints notwithstanding--am not looking to have my genes fixed, all bets are off when it comes to any future offspring. When I have kids of my own, if the technology is available to ensure that they won't have to experience what I went through, I say bring it on. Putting one's children through years of pain just so they'll stay in touch with their crip selves--that's not "disability pride," that's child abuse.
Douglas Lathrop is Managing Editor of New Mobility.
