Thursday, December 02, 2004

Book Recommendation

I just finished reading Alice Domurat Dreger's new book One of Us: Conjoined Twins and the Future of Normal. Dreger, a medical historian by training, takes what's basically a disability-rights approach to the question of how medicine and society should deal with conjoined twins. Her basic argument is that the "problem" of conjoinment is most basically a social, not a medical one. She contends that doctors ought not to treat surgical separation as the "normal" response to conjoinment but that we should instead focus on changing social attitudes that treat conjoinment as a tragedy. It's a really fabulous book, one that's enriched by the fact that the author has obviously worked hard to listen to -- and communicate to us -- the voices of conjoined twins themselves. The last paragraph of the book captures the basic tenor of her argument:

But what if we understood such twins as people who are no more broken than anyone else? What if we stopped thinking of biological anomalies as sworn enemies of humanity, and started recognizing their full social nature, perhaps even their social potential? In the long run, we can do better than try to guarantee every child a "normal" body. We can try to guarantee a just world. If you take seriously what conjoined people have said about their bodies and their lives, you realize they are still experiencing what Mary Wollstonecraft felt in the late eighteenth century: "It is justice, not charity, that is wanting in the world." Let us now stop referring to children who undergo massive normalizations as "real fighters," and start recognizing that we are the ones who construct what they are fighting against.

I certainly don't agree with everything in the book, and the 155 pages of text often left me hungry for elaboration, but I think anyone who is interested in disability rights and disability studies ought to read it.


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