Past Due: A Story of Disability, Pregnancy, and Birth

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.


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.


The Twilight series

I'm halfway through the third book of the Twilight series. Since Monday, I've had the following conversation with four different women, each of whom is in her 30s, identifies as a feminist, and has an advanced degree:

"These Twilight books, they are so badly written!"
"Yes, and they're politically indefensible."
"And you can't sympathize with the characters. What is with Bella? She's not spunky or smart or even rebellious!"
"So why can't I stop reading them?"
"I know, they're addictive!"

What is the deal with these books? One of my friends read all four in two days (and these things are sizable). Another finished the first book and immediately read it again. Another sent her husband to the store late at night to buy the next one for her (she couldn't go herself because she was sick).

And for those of you who haven't read them, let me give you a sense of the dialogue:
Vampire boyfriend: I love you so much. I couldn't possibly love you any more.
Whiny girlfriend: I don't see how you can love me, because I am nowhere near as beautiful as you are. But I love you!
Vampire boyfriend: But how can you love me when I am so dangerous! But I love you!

To make this scenario even more troubling, the books are essentially describing an abusive relationship--one that appears to become more and more controlling and manipulative as the series progresses. The vampire boyfriend shows his love by stalking his whiny girlfriend and trying to take charge of her entire life, ostensibly in order to protect her.

I am baffled as to why I and my friends and colleagues have gotten so sucked into a series that seems to have nothing at all to offer us. I know that there are theories out there about why this might be the case, and I intend to delve into them. Several faculty colleagues and I are going to be doing a panel discussion about these books in October, and by then I hope I'll have real critical thought and not just self mockery to offer.