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.
I do not believe my bone disorder was given in order to serve some greater purpose (even if it does end up serving some greater purpose) because I do not believe in a cruel God, and I do believe in a God who created us to have whole, pain-free, immortal bodies. Remember: Death and pain were not part of the original plan, and Jesus not only healed people of their physical ailments (albeit not in isolation from their spiritual need for repentance and forgiveness), but also defeated the ultimate result of bodies that don’t work as God intended them to—death.
The second option for explaining my condition—and perhaps the one Becker is advocating for, at least in terms of Down syndrome—is that genetic disorders are a manifestation of human diversity that we need to honor. But I cannot accept my bone disorder as value-neutral—just another human difference that people need to accept. It is a difference that demands acceptance, but that is not all it is.
A few days ago, a friend whose daughter also has OI was confronted by a brazen stranger who asked, “What’s wrong with her?” My friend’s response was, “Nothing. Normal is just a setting on the washing machine.” A great answer, a true answer. Nothing is wrong, in a fundamental sense of our human identity as children of God, with those who have genetic disorders, cancer, brain injuries, paralysis, or the flu. But something is wrong with our bodies. They are not as they should be, not as God intended. While I do not advocate fixing what’s wrong at all costs—I think there are compelling, important reasons that Christians, for example, should tread carefully when considering the use of reproductive technologies such as in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) to screen out genetic disease at the embryonic stage—I do think there are plenty of disabilities that need correcting. Including mine.
Ellen Painter Dollar is a writer who focuses on Christian reproductive ethics and disability theology. She is writing a book for Westminster John Knox Press (forthcoming in 2011) about the ethics and theology of assisted reproduction and genetic screening. She blogs at ChoicesThatMatter.blogspot.com and Five Dollars and Some Common Sense. “Speaking Out” is Christianity Today‘s guest opinion column and (unlike an editorial) does not necessarily represent the opinion of the magazine.
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Related Elsewhere:
Ellen Painter Dollar is responding to Amy Julia Becker’s piece, “Considering ‘Curing’ Down Syndrome with Caution.”
Al and Ellen Hsu wrote on having a child with Down syndrome. Christianity Today recently editorialized on how churches should embrace people with disabilities.
