BY ALICE DREGER AND JOSEPH A. STRAMONDO
For years, the abortion of fetuses likely to have disabilities has been called “selective abortion,” but, for reasons made clear in Hilde Lindemann’s thoughtful Bioethics Forum reflection on the matter, the practice might better be called “selective parenting.” It fundamentally reflects, after all, a decision about what kind of parent one is willing to be.
As feminist bioethicists like Lindemann have noted, what kind of parent one is willing to be has a lot to do with the social structures that make the parenting of particular kinds of children easier or harder, more or less rewarding. Lindemann reasonably claims that, in our culture, mothers end up doing a disproportionate amount of the caring for their offspring, and for this reason, their stakes in decisions about potential offspring are higher than everyone else’s. Social structures as they exist now often indicate it will be harder and less rewarding to have a child with a disability. So, many women opt out of that kind of parenting.
Disability rights advocates have objected to selective abortion on many grounds, including the way in which it medicalizes disability. And indeed, at first blush, the system set up to enable selective abortion seems to reinforce the medicalization of disability by simply focusing on the biological findings of prenatal testing, implicating the fetus’s anatomy explicitly while implicating the social system only obliquely. But the system designed to allow for selective abortion also has the potential – if we were really to encourage pregnant women, genetic counselors, and doctors to think about it – to further the understanding of disability as fundamentally contextual.
Imagine, for example, that, in telling a woman that she is carrying a fetus with XX (female-typical) chromosomes, the genetic counselor or physician went over the special long-terms problems children with XX chromosomes face: lower earning power, higher rates of eating disorders, higher likelihood of being a victim of sexual assault, monthly bouts of pain and bleeding that go on for years, and so on. Would-be mothers might also be encouraged to consider the ways in which girls are thought to be are special challenges to raise. They might be reminded that many people expect that girls (like children with disabilities) will develop especially close and uniquely demanding relationships with their mothers. Does the pregnant woman really want to parent that kind of child, given the special burdens?
Or imagine that, in the future, a genetic marker will be found that increases the likelihood of a male offspring growing up to be a gay man. (In fact, such a marker now seems likely to be found.) What could the genetic counselor or physician advise about male fetuses with such markers? Well, they would be less likely to marry and produce grandchildren, more likely to face substantial social and legal barriers to sex and love, more likely to have eating disorders, more likely to attempt suicide in youth, more likely to be teased and bullied at school. They might also cause straight parents special shame, since not everyone thinks it is okay for your child to be gay (to say nothing of intentionally bringing a gay child into the world). The woman carrying such a fetus might also consider that some people believe gay boys are more likely to end up in relatively intense relationships with their mothers, such that the child might sap more of the mother’s emotional resources. Does she want to bother with all this, or try the genetic lottery again, hoping for a real winner?
Now, we guess, from her essay and other work, that Lindemann sees raising a child with a significant impairment as being dramatically harder than, say, raising the average girl or gay boy. In her Bioethics Forum essay, Lindemann imagines that care of children with disabilities “can consume even more of the mother’s time, energy, money, and emotional stamina than would the care of a healthy child.” And indeed, it can, but it does not necessarily. In fact, it is easy to imagine situations where some children with disabilities suck up considerably less of a mother’s energy and emotional stamina than some supposedly nondisabled children, and easy to imagine situations in which some children with disabilities are considerably more rewarding than some children without. The essentializing of disability as medical and as always more difficult obscures this fact – and, most importantly, the fact of the contextual nature of disability.
Perhaps someday all genetic counseling will begin with the basic insight that disability is social – that stairs and written language don’t occur in nature anymore than wheelchair ramps and Braille do. But, even if that happens, why should an enlightened woman – just because she wanted a child – have to accept a child who might need ramps or Braille? In her analysis, Lindemann notes that some people commit, via their choice of profession, to rescue other people regardless of who the other is. Once a person becomes a lifeguard, when she’s on duty, she doesn’t get to decide whether a drowning person is attractive enough or nice enough to bother saving. Lindemann sees that women end up in the lifeguard position to their children after birth – but she sees no moral obligation on their part to be lifeguards prior to birth. They can choose which potential offspring to save, and indeed, Lindemann tells us, they ought to choose carefully, since they are generally stuck as lifeguards once a child is born.
Motherhood is forever, in this view – after birth, anyway. But that very insight – which can lead one to want to avoid a child who comes with the supposed extra burden of inborn impairment – could also lead to a realization that parenting is, fundamentally, about uncertainty. Once you decide you want a child, parenting is going to involve a lot of uncertainty, a lot of taking and managing what comes. Thanks to things like meningitis and skateboards and elected officials who vote against SCHIP, no one knows which of our children will ultimately end up with a disability, any more than anyone knows which will end up to be a joy or a disappointment.
One has to wonder whether selective parenting (that is, selective abortion) sets one up for an unrealistic vision of parenthood. Parents are not assured of “getting a good one.” Ironically, the system that promotes selective abortion may be setting up selected children for especially burdensome parents.