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."
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I am currently working on a response to Ellen's article, although CT may well decide that enough is enough on this topic! Either way, you'll get my thoughts here by tomorrow morning.
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Interesting. I wonder about the conflating of intellectual disability and physical disability going on in these two pieces. This seems like a major problem within disability theory/theology right now. At the heart is the question of suffering. Is Penny suffering? To some extent perhaps. If she is able to exercise self-awareness (which not all DS folks can) regarding her difference, if she longs for boyfriends and college degrees then she'll suffer. But this is certainly different than your bones breaking when you sit on the bathroom floor. Sounds like Ellen is saying she wouldn't be radically changed, that she could exist as herself without her disability. It may even be that Penny is able to be happy in ways that Ellen (or I) may find impossible. Different, different, different.
Thanks for calling our attention to the distinction between mental and physical disability. Penny certainly is not suffering, physically or mentally, as a result of Down syndrome. If she were, we would certainly seek to alleviate that suffering. I suspect some suffering will come as she grows up, and I suspect that much of that suffering will come because of social difference rather than physical pain.
She knows she has Down syndrome and we try to talk to her about it frequently, in 4-year old terms. We hope it will give her a sense of self-respect for herself as similar and different from her peers.
My post today provides a response to your comments, with which I heartily agree. Again, thanks.
This conversation has been so helpful. A few thoughts: I do think that suffering is at the heart of things, but in my work on Christian perspectives on assisted reproduction and genetic screening, I'm aware that suffering is usually defined by people through their own lens. So, a father who grew up much shorter than other boys and feels that he suffered greatly might feel justified in using genetic screening to ensure his son is not so short--even though most of us would not define shortness as a disability. In response to this conversation as well as the blog posts that inspired it, many commenters (usually people without personal experience of Down syndrome) kept pointing out how people with DS must suffer so. They may be wrong, but that perception will influence someone whose baby is prenatally diagnosed with it. So the personal lens through which people define "suffering" makes it very hard to draw a satisfactory line between limitations that make us human and brokenness that cries out for healing. In terms of genetic screening, the UK is actually ahead of the US in that they have a list of genetic disorders for which it is acceptable to do screening, where in the US, fertility clinics will do whatever they are asked to do, as long as it is technically possible and can be paid for.
I've also wondered if it's fruitless to discuss "disability" in general, given that intellectual and physical disabilities can be very different. But our minds and bodies are all tied up together, and it is hard to distinctly separate the two. Especially in a culture where physical disability limits people in some areas (physical fitness, sports, some types of relationships) while intellectual disability limits them in others (school, work, some types of relationships). Who's to say which of those limits are more significant and cause more suffering?
And finally, I actually think I WOULD be radically changed if I didn't have OI. I'd be a different Ellen in many ways. And I'd take a cure anyway. People like to say to me, "But Ellen, don't you think you are more wise or compassionate because of your OI?" And I say, "Sure, but I know plenty of wise and compassionate people who have never broken a bone in their lives."
Again, a very helpful conversation!
There are several reasons I'm going to push for a reorientation of profound disability in the larger conversation, primary of which is political. To be able to advocate, to possess self-representation itself categorizes disability. People with profound disabilities don't have the possibility of autonomy. Body politics can't give an account of those without self-representation. In fact, it's a political movement from within. What does this have to say to those who rely on others for literally everything?
As for the suffering question, I'm quite convinced that most would-be parents of the disabled are un-practiced in life with the intellectually disabled. My guess is that the suffering they really fear is their own. I don't want to discount this. Welcoming a child with a disability would, I imagine, require a vast readjustment of expectations. But we all learn (some of us only after a long time and painfully) that this is true of welcoming any child, disabled or not.
Sorry to be so delayed in responding here! I do want to recommend Hans Reinders' book Receiving the Gift of Friendship in which he speaks about reciprocal relationships between "typical" folks and people with profound intellectual disability. I think these conversations get at the heart of what it means to be human and created in the image of God. Thanks so much for advancing the conversation.
Amy Julia
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