I'm into thinky disability memoirs right now. So far I've read:
1. Life as We Know It by Michael Berube--really excellent, will read it again and have more to say about it here.
2. Autobiography of a Face by Lucy Grealy--also an excellent read, although I found I was somewhat less drawn in because she wasn't grappling with the issues that are at the forefront of my mind right now (disability studies in a feminist context).
3. The things I've read by Rayna Rapp and Eva Feder Kittay sort of fit in this category--academic pieces with autobiographical components.
4. Past Due: A Story of Disability, Pregnancy, and Birth by Anne Finger.
It sometimes surprises me when I come across really engaging books that I've never heard of before. I'm not sure why I'd be surprised, because there are many excellent books I've never heard of, but I guess I usually assume if something were really good it would have crossed my radar at some point. I approached Past Due with a bit of skepticism for that reason, and I was delightfully surprised to discover how wrong I was. I don't know why I hadn't read this book before, because it's incredibly interesting, and Anne Finger sounds like someone I'd like to know politically and personally.
Finger is a feminist activist as well as an activist for disability rights, and her activism often takes place where these fields intersect in reproductive rights. She was disabled by polio as a child, and she worked in an abortion clinic during the Reagan years when clinics were being bombed and set on fire. Like Rayna Rapp (who appears in the book), she's a passionate advocate for women's right to terminate pregnancies, but she's also quite concerned about the ease with which society suggests we terminate any fetus designated "defective." At one meeting of feminist activists, she gives a presentation on abortions of disabled fetuses as genocide. She reports,
When the discussion period began, I felt like a heretic. Wasn't it a terrible burden on women to have to care for disabled children? Shouldn't disabled infants be allowed to escape the misery of their lives? "I was glad when my daughter was born quote-unquote normal--do I have to feel guilty about that?"
What it all boiled down to was, did I really think that disabled people were as good as everyone else? Was I really saying that a disabled life was worth living?
And then she has a baby who has a very difficult entry into the world, who is hooked up to various machines in the NICU for almost two weeks, and who is a likely candidate for brain damage and other disabilities. They spend the first several months of his life not knowing, and dealing with competing diagnoses. She doesn't wish he was dead, but she often wishes that he would be just fine, and have no disabilities at all. She grapples with this wish, with what it says about her life and her politics: "It's my own internalized oppression that makes me fear having a disabled child, but it's not just that. It's the knowledge that being non-disabled is easier than being disabled. More so in this society than in others, but not just in this society. In any world I can imagine."
She faces her fears, faces what it would mean to have a disabled child, and I get the impression that this experience complicates but doesn't undermine her beliefs. Ultimately there's no moral to the story, but it's thoughtful and engrossing. It made me want to teach a class on feminist disability studies so that I could teach this book--and Testing Women, Testing the Fetus, too.
2 comments:
That sounds like a really interesting book. I think that the "life would be easier for the child" argument is very common and makes sense from the perspective of the able person writing the book. My mom has always bveen a big proponent of "normalcy" in everything as the key to an easier life -- although at the end of the day it has not necessarily made her much happier.
oh wow, please do teach that class! - preferably by the fall of '11 or else i'll be drawn even further into the perpetual undergraduate vortex
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