I Want to Be Accepted As I Am, But I’ll Take a Cure Too
Amy Julia Becker responded to recent debates over some preliminary research showing that drug therapy might improve cognitive function in people with Down syndrome. Several high-profile bloggers wrote about this research from the angle of whether Down syndrome should be cured, if it could be. The question led to long comment threads discussing the intersection between disability and identity. By curing Down syndrome, would you be altering the person with Down syndrome to such an extent that you would be tampering with their identity?
Becker's response—besides pointing out the obvious jump-the-gun factor that the research cited was on mice, not humans, and that it is potentially a treatment and not a cure—was subtitled "Why we shouldn't be too quick to think disabilities need correcting." In discussing her daughter's Down syndrome, Becker brought up the frequently cited Christian narrative whereby disease, illness, and disability result from the Fall and the fallen nature of the world we live in. She objects to this narrative for her daughter, saying, "Our daughter is fallen, yes, but she is no more fallen than I am. She is no more or less broken, no more or less beloved."
As someone who embraces the fallen-world narrative in explaining my own genetic disorder, I was caught up short by Becker's dismissal of that narrative as explanation for illness and disability. When she used the term "broken," of course, she was referring to spiritual brokenness. But as someone with osteogenesis imperfecta (OI), also known as brittle bone disease, I can't help hearing it literally as well. I am more broken than other people. My body does not function as it should. Bones support our bodies' most essential functions. The reason that babies with the most severe type of OI die soon after birth is that their rib cages cannot support respiration. Bones are designed to break only under extreme stress—a skiing accident, a fall from a tree, a car crash. When I was about four, I sat down on the bathroom floor to talk to my grandmother as she was brushing her hair, and my femur (thigh bone) broke. This is not how it is supposed to be. My body and my bones are deficient. And I wish they weren't, even though I understand that my bones and my identity are so intertwined in ways good and bad that "me" without OI would be a very different "me."
I embrace the fallen-world explanation for my bone disorder because I cannot embrace the other two explanations. One option is that my bone disorder, and the pain and suffering that come with it, are God's will, something God either orchestrated or allowed to serve a greater purpose. This is a popular interpretation among Christians, leading to such clichés as "God will not give you more than you can handle" (which I believe is a distortion of 1 Corinthians 10:13, which says God will not let you be tempted beyond what you can bear) or "Everything happens for a reason." Some Christians compare God to human parents who make their children do things the children perceive as suffering—eat their vegetables, bring home good report cards before getting a driver's license, miss a friend's birthday party as punishment for bad behavior. But parents who break their children's bones to teach them a lesson are criminals, not good parents. I can accept that God's purposes and plan are so vastly beyond my human pea-brain that I cannot hope to understand them, but I also have to believe that God knows that snapping children's bones in two to teach them a lesson is cruelty, not loving discipline.