The puzzle of abortion and disabled rights
The abortion laws passed last week in North Dakota are troubling first and foremost because they restrict women’s freedom to control their own bodies. More insidiously, they criminalize selective abortion, which means that a woman cannot choose to terminate a pregnancy because she knows the fetus has a genetic abnormality, or to select for other characteristics, such as gender. The very use of the world “selective” here indicates how right the pro-choice movement has been to emphasize “choice.” All abortion is selective, and whether a woman has selected not to have a baby at all or has selected not to have a particular baby is not a matter the state should parse. No one should be forced to have a child she doesn’t wish to have.
Both anti-abortionists and disability activists have sometimes suggested that women should defer to “nature” and have whatever baby they conceive. The bioethicist William Ruddick calls this the “‘hospitality’ view of women.” The proposition is that we do not have and should not exercise volition in the making of children; pregnancies are an arranged marriage we are not free to buck. Yet a study a few years ago concluded that women who do not make use of prenatal testing or who choose to keep pregnancies they know will lead to children with disabilities “were judged more responsible, more to blame, and less deserving of both sympathy and social aid subsequent to giving birth to a disabled child than were women to whom testing was not made available.” The hospitality view is oppressive, but so is the rush to social judgment.
I have written in my most recent book, Far from the Tree, about the rich experience many parents find in children with conditions against which people often select. I would never propose to anyone—even to myself—that such parents’ rapture constitutes an imperative to bring similar children into the world.
I do see a problem, however, in the speed with which women who have no prior exposure to the conditions in question are expected to make these decisions. Women often terminate a pregnancy without knowing what life would be like with and for an anomalous child. It is worth publicizing the satisfaction that the experience may entail, so that the pro-choice movement becomes the pro-informed-choice movement. Others have already pointed out that if we want people to keep these pregnancies, we might start by providing better services for people with disabilities; our neglect of decent care is a national disgrace, and is ignored in North Dakota’s new statutes.
There is muddle from both sides on abortion after prenatal diagnosis. The women I interviewed, whether they had carried such children to term or had terminated, described intense pressure pushing them away from their natural inclination. The political right conflates choice and abortion, implying that most women will terminate, eliminating disabled populations whose lives have value. It also honeys the story of challenging parenthood; having a child with severe disabilities can be rewarding, but it is also difficult, and denying the difficulty is a disservice. The political left conflates access to abortion and abortion itself. In this view, the “responsible” choice is to prevent the suffering a disabled child will endure. But all children suffer, and we remain a procreative race. The putative suffering of disabled children can be a smoke screen. Would-be parents often imagine the suffering erroneously; they confuse how it feels to lose an ability (to be suddenly bereft of hearing) with how it feels to live healthily with a variant body (to be deaf all your life). Further, they confuse their own discomfort with their child’s.
A lobby of the would-have-been-aborted militate against terminations; some have greeted the North Dakota laws as a humanitarian breakthrough. I can empathize with their concern, because I suspect my parents would have considered termination very seriously if they had somehow known I would be gay. I imagine a eugenic world in which medical advances could allow parents to abort fetuses destined to be like me in this regard, and the thought makes me sad. Still, choice is the hallmark and founding principle of democracy, and I would champion people’s right to it. I would do so with a firm belief that choice strengthens families no matter what choice they make.
Both opponents and supporters of the right to selective termination tend to consider people who want to terminate—but choice is equally valuable to women who want to continue their pregnancies. Of the five thousand five hundred children born with Down syndrome in the United States each year, about six hundred and twenty-five are born to women who had a prenatal diagnosis. I have interviewed many such women, and, without exception, they were glad they had been able to think about the pregnancy and make a positive, affirming decision to keep it. Tierney Temple Fairchild, whose fetus had a prenatal Down syndrome diagnosis, wrote, in words I quote in my book, “I had a choice, and I chose life. Does that make me pro-choice or pro-life? Our political parties tell us we can’t have it both ways… I chose life, but I am thankful I had the choice.”
North Dakota’s legislation attempts to interfere in the race between medical and social advancement. On the medical front, it’s getting easier and easier to pick up genetic conditions earlier and earlier. At the same time, on the social front, people with genetic anomalies who were once hidden away in darkness and left to die young are writers, actors, activists. New strategies for early intervention have allowed people with Down syndrome to secure accomplishments that were once unimaginable; some are living independently; life expectancies have soared. People with forms of deafness that can be detected prenatally are members of a thriving deaf culture. People with achondroplastic dwarfism, also detectable prenatally, are more readily accepted than ever before, with more accommodations than ever before. We need only to bear collective witness to these changes. It will get harder to select against people in these categories not because of tyrannical laws, but because we see so much more joy in their lives.