I just finished Rayna Rapp's 1999 book Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. Although the book is a decade old now, it's still the only one of its kind, as far as I know: an ethnographic study of women's experiences of amniocentesis, based on extensive interviews. The book is outstanding, but this isn't a review--instead it's an opportunity for me to get some thoughts down.
The point of amniocentesis, of course, is to test for a handful of disabilities that are transmitted or manifested genetically. And by and large, the reason people have an amniocentesis is so that they can terminate a pregnancy that has certain disabilities that the woman or the family deems too serious. Rapp points out that "too serious" is a highly personal and contextual decision--except for Down syndrome, where she suggests there's a consensus developing. Almost all women who discover through amniocentesis that they're carrying a fetus with Down syndrome choose to terminate. Rapp herself had a late abortion when she discovered that her fetus had Down syndrome, and I suspect that I'd have done the same, if we'd had an amniocentesis with Maybelle.
Rapp treats the women and men she interviews with great care and seriousness, even calling them "moral pioneers." She doesn't make judgments about other people's decisions, but seems to try to represent their voices as fully and respectfully as possible. That makes this an incredibly rich, interesting book. It also makes parts of it very hard to read. Like this:
"One professional couple told [their genetic counselor], 'If he can't grow up to have a shot at becoming the president, we don't want him.'"
I was sort of glad that this couple went ahead and put it out there, because that expectation seemed to underlie a lot of the interviews Rapp reports in the book, particularly the ones with professional white people. This couple was honest, and part of why I find their statement so reprehensible (particularly the "we don't want him") is because I want to feel morally superior, but I can so fully relate to the sentiments they're expressing. Or, maybe more accurately, I think I'm moving away from that mindset, but it's still very familiar to me.
And here's another passage from the book that resonated with me:
“Ending a pregnancy to which one is already committed because of a particular diagnosed disability forces each woman to act as a moral philosopher of the limits, adjudicating the standards guarding entry into the human community for which she serves as the normalizing gatekeeper. She must make conscious the fears, fantasies, and phobias she holds about mothering a disabled child. And she frequently thinks in a vacuum, lacking much social context for what a particular medical diagnosis of a disability might really imply.”
Yes, I would have been in that vacuum, and was in the first weeks of Maybelle's life. People with disabilities aren’t visibly part of my life, or the lives of my friends and colleagues, particularly not people with intellectual disabilities. Maybelle was the first person with ds that I knew, and that’s true for many of my friends--she’s it! So I freaked out when we had her--I had no context for understanding what life with a person with a disability would be like. I was so relieved when friends and colleagues would email me and share their own connections to folks with disabilities. One neighbor emailed to tell me that her brother has cystic fibrosis--not at all the same as ds, but still reassuring because it helped me to feel that disabilities could be part of my life without unsettling everything that I was.