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 ...1