Friday, July 23, 2004


Imagine that it's 1973. The Supreme Court has just struck down abortion laws. You're pregnant with your fourth wanted child, when suddenly the Prenatal Diagnosis Fairy appears to you in your obstetrician's office.
"I've got bad news," she says. "Your baby is not developing properly in the womb. One of her hip sockets is just plain missing, and one of her arms is irreparably small and deformed. She'll spend a year of her babyhood encased in heavy plaster, unable to move anything below her armpits. She'll have surgery 11 times in her first 23 years of life, several of which will ultimately prove to be failures. She'll have a chronic pain condition by the age of 12. She'll never have the physical ability to do certain simple things like braiding her own hair or riding a bike. By her early twenties, she won't even be able to walk one city block unassisted.

"You'll shepherd your infant through not one, not two, but three different surgeries before she's even old enough to understand why she's being hurt. You'll leave your other kids with a babysitter again and again so you can sleep on a chair in her hospital room. You'll try to figure out what to say when she comes home from junior high school crying because her classmates make fun of the way she walks. So I just want to know: do you think you're up for it? And even if you are, do you think it would be fair to her?"
Like most disabled adults, I'm ambivalent about the abortion of disabled children. It's frequently brought out as a pro-choice trump card: "Well, what about children who would be born deformed and suffer terrible pain?" Some people have made the paradoxical argument that disabled children have a "right not to be born." There are, in fact, "wrongful birth" lawsuits. Yes, those are all about children who are much more disabled than me - but I've had friends over the years with osteogenesis imperfecta, with cerebral palsy, with spina bifida, with no arms and legs. Where on the continuum do you draw the line? The answers aren't easy, as this painful article makes clear. It also makes it clear that there are people who choose abortion because of disabilities that are much less severe than mine.

I used to say, "I don't have a problem with abortion on the basis of 'I don't want to have a child right now,' I have a problem with abortion on the basis of 'I don't want to have THIS child.' " But I can't sustain that kind of moral smugness in the face of stories like this one - I can only admire the courage it takes to make such an impossibly hard decision. I would probably do the same thing, and to hell with my disability-rights politics.

"I could never have your strength," people say to parents of disabled children - as if these parents have some sort of special quality that makes their situation easier than it would be for other people. I know differently. Some parents of disabled children - mine, incidentally, among them - rise to the occasion and do a fantastic job. Others don't. My dissertation added to the research literature demonstrating that congenitally disabled children are at greater risk of parental abuse. So I'm under no illusions about the stress, pain, uncertainty, and financial and physical burdens that come with parenting disabled children. And yet I also know that disabled people can make valuable contributions to both family life and society at large. I know that life as a disabled person - even a severely disabled person - can be well worth living.

Where does that leave me? With Barbara Ehrenreich. Her op-ed in yesterday's New York Times takes on "the prejudice [...] that a termination for medical reasons is somehow on a higher moral plane than a run-of-the-mill abortion." Ehrenreich supports the right to "run-of-the-mill abortion," of course, and so do I. Absolutely. But I also refuse to concede that women who abort a disabled fetus have made a choice that's better or more understandable or more deservedly legal than women who have aborted a fetus because they fear they'll never finish college with a baby, or because they've always disliked children. It always comes down to a personal choice, a personal weighing of uncertain costs and benefits. I may not always be morally comfortable with the resulting decisions - but, then again, no one has asked me to be. I don't have to approve of every single abortion to remain determinedly pro-choice.

This next paragraph is pretty much beside the point, but I don't want to leave the first part of my post unbalanced. So: in my imaginary scenario, here's what the Prenatal Diagnosis Fairy didn't say.
"Your baby will grow up smart and determined. She'll earn a Ph.D. in clinical psychology, make some original contributions to the research literature, and help people work through the most painful aspects of their lives. She'll be a good cook. She'll use that deformed arm to play the piano passably well and to complete elaborate needlework projects. She'll have great friends and some successful romantic relationships and a happy marriage. Her disability will cause intense physical and mental pain over the years, and sometimes it will be bitter and awful. But it will also make her stronger and tougher. By the age of 30, she'll have recovered enough mobility to be able to hike three miles over rough terrain, and to her that will feel like a marathon-quality accomplishment. Over the years she'll be active in political campaigns, volunteer organizations, and her church. People will listen when she speaks. And eventually, she'll create a modestly successful weblog that will forever associate her in people's minds with small, furry, aquatic mammals. So when you make your decision, keep those parts in mind, too."