Testing Women, Testing the Fetus

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.


ds.mama said...

I am struggling with how to respond to what you have said and quoted here. You seem to be condoning Rapp’s normalization of killing babies with Down syndrome. You say she doesn’t judge anyone she writes about but she does. She writes in a way that suggests what they are doing, particularly in the case of ds is ok and even supported by social consensus. She doesn’t judge them negatively or find them guilty of anything. How could she seeing that she killed her own child because it did not meet the “standards guarding entry into the human community for which she serves as the normalizing gatekeeper.”

"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.'"Why is that hard for you to read but the part where she talks about killing her own Maybelle seems to go down easy?

As parents of children with ds, we know the true joy and struggles of raising children with special needs. Prospective parents of babies with Down syndrome need to hear from us that children with ds are just as much to celebrate, be excited about and proud of as any other child. When I think of people who have refused to let their babies with ds live, I feel a bit of sadness for them that they will never know the personal revelations they have rejected.

Thanks for letting me share my thoughts on this book with you.

Alison said...

ds mama, thanks for sharing your thoughts. Rayna Rapp, like me, believes very strongly in women's right to make the decisions about the pregnancies they continue and the ones they terminate. I didn't get the impression that she was condoning the consensus that's developing around terminating pregnancies with ds, nor was I trying to do that. But it does seem to be the case that such a consensus is developing--and I find that very troubling.

The book is pretty interesting, in part because Rapp ends up spending a lot of time with parents of kids with ds, and she has an entire chapter about those parents. When she initially wrote about her own experience of terminating her pregnancy, a parent of a child with ds contacted her to share her own experiences (and, I suspect, to correct some of Rapp's misinformation), and Rapp then made it part of her research program to study these parents and try to include that information in her book.

Anonymous said...


Meg here, checking in with what you're up to. Just read a chilling sentence:

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.

Wanted to say that I admire your willingness to look at this. I don't know that I could do that. I think I'd probably just want to stick with 'morally superiority,' even if that weren't completely honest. Thanks, as always, for giving me lots to think about.

On the revelations of parentood...yes, there are so many, and it seems like the basic facts are that you don't always get to choose which revelations you're going to experience. Amniocentesis presents more information about some choices, yes, but this seesm small in comparison to all the millions of things we can't control, predict, or know about our kids or ourselves. There's no getting a complete read on how we'll face challenges/what we'll fail or succeed at or learn or unlearn in the process. The whole thing is so complex and tricky to navigate for me. Thanks for being willing to dig and keep digging...

Caroline said...

Alison teaches a class in the College of Charleston Women's Studies Department called Gender and Violence. She taught me that class in spring 2007. One of the most important things that Alison taught me is that prejudice is garden-variety. People who are sexist, racist, homophobic, xenophobic, and imperialist are living among us. They are us. We all must confront our prejudices so that we do not enable discrimination; so that we do not make discrimination our work.
ds.mama, in this post Alison is using Baxter Sez to discuss her thoughts on Rapp's normalization of women who choose late-term abortions after using amniocentesis to test whether or not their fetus is carrying Down syndrome. I see from your Blogger profile that you have three children. Once you discovered that your third child carries Down syndrome, you already had had two experiences of having children. Alison discovered that in one experience. She and her husband Biffle are using Baxter Sez and other publications to fight against disablism and all other discrimination and for their daughter Maybelle Biffle-Piepmeier in the best way that they know how.