The fight for disabled lives is sometimes deeply existential. It is a fight for the right to exist in the first place, for the value of our lives to be weighted equally with nondisabled people’s. Last week, as disability rights activists from ADAPT occupied the national stage with civil disobedience at congressional offices, fighting policy that puts lives at risk, the New York Times quietly ran an opinion piece in “The Stone,” its philosophy series, that advocated for the murder of disabled children. These two things are connected because the uncritical presentation of support for what proponents of giving infants lethal doses of narcotics politely term “euthanasia” feeds social attitudes characterizing disabled people as burdens.
Turning the lives of disabled people, especially children, into an intellectual debate isn’t new. In 2005, Dutch physicians unveiled the “Groningen protocol,” a guide to infanticide targeting “severely ill newborns.” In 2009, the Times ran an argument for “rationing” health care by Peter Singer, a noted proponent of dehumanizing and killing disabled people. The notion that killing disabled people should be not only acceptable, but perhaps even legislated, is alive and well in the West.
The most recent example of this pattern, Gary Comstock’s “You Should Not Have Let Your Baby Die,” is written in the second person. It appears to tell the story of Comstock’s personal family tragedy: the death of his son Sam several days after birth from complications associated with Trisomy 18. Also known as Edwards syndrome, Trisomy 18 is a congenital disability that can be variable in presentation, depending on the specifics of someone’s mutation. Comstock’s son had a severe version that made it impossible to breathe independently and would lead to, he writes, “radical cognitive limitations.” The family opted to withdraw life support, and Comstock describes Sam’s gruesome last moments struggling for breath, concluding: “The unthinkable has become the right, the good. Painlessly. Quickly. With the assistance of a trained physician. You should have killed your baby.”
By using his son’s death as a political object lesson in an essay arguing for the merits of killing disabled infants, Comstock has opened himself to commentary and criticism. While his family needed to make the choice most appropriate to their needs, the apparent desire to impose that choice on others crosses a line. This is not simply a personal narrative, because Comstock doesn’t just tell the story of his family. Instead, he transitions into advocating that the “unthinkable” (killing disabled infants) “has become the right.” He overmaps a traumatic personal experience onto others, and in so doing turns his regret into a moral imperative.
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Many in the disability community are deeply unimpressed with the essay, which at one point compares disabled people to pets: “Shouldn’t we be allowed the swift humane option afforded the owners of dogs, a lethal dose of a painkiller?” Disability advocate and policy expert Ari Ne’eman noted that the essay had much in common with the infamous “Black Stork” case. In 1915, physician Harry J. Haiselden encouraged the parents of a disabled child to withdraw care, arguing that the child would have poor quality of life; although he was investigated, a jury failed to charge him with anything,and he also retained his Illinois medical license. The episode was later adapted into a propaganda film by eugenics advocates.
Comstock’s article is laden with value judgments about the lives of disabled people, suggesting that quality of life should be evaluated by bystanders, rather than disabled people themselves. He muses that his son didn’t seem to have the things that “make a life,” including thoughts, wants, interests, or desire. He also includes critical comments about people who make different care choices than he did.
Comstock also makes inaccurate statements about the purpose of prenatal genetic testing—namely, that said testing is performed “to allow parents the choice to abort fetuses with severe problems.” It is, in fact, done to allow parents to make informed decisions about their pregnancies. That can include termination or taking steps to promote a healthy pregnancy to deliver a baby at or close to term. Ideally, that prior knowledge allows parents to prepare and provides them with access to resources they can use.
The assumption that genetic testing is used to determine whether a pregnancy should be aborted is both disablist and contradictory to reproductive rights discourse. Abortion on demand and without apology means people should have access to all the information they feel they need to make a decision about a pregnancy, and they shouldn’t be required to justify or explain their decision making—whether they opt to abort a pregnancy on the basis of test results or to continue a pregnancy armed with that information. Abortion is a value-neutral choice. Advocating for eugenics is not.
Implying that a patient would naturally opt for abortion in these cases creates a strange sort of hierarchy of abortion, in which fetuses that appear to have disabilities are inherently undervalued. The right, meanwhile, seizes on this issue from the other end of the stick, engaging in equally repugnant rhetoric about “babykillers” that may leverage real-world disabled people like Sarah Palin’s son Trig, who has Down Syndrome, or former Republican Pennsylvania Sen. Rick Santorum’s daughter Bella Santorum, who has Trisomy 18. That rhetoric has real consequences, as seen in states that have attempted to pass bans on abortion for apparent disability.
Both sides rarely bother to consider the pressures that surround disability and abortion, like the lack of supports and informed education that might allow people to make a decision on the basis of accurate, compassionate information. That information includes a frank discussion of challenges. The systemic denial of services to disabled children can make having a disabled child an expensive, fraught, and sometimes frustrating lived experience. Had Sam lived, he would have needed attendant care and a range of other costly supports, precisely the things ADAPT activists are getting arrested over.
But those resources may never materialize. Comstock’s narrative makes it difficult to determine the level of information and support made available to him—though their decision to decline genetic testing certainly put them at a disadvantage. It is also notable that Comstock doesn’t reference talking to a disabled adult about their quality of life, which might have added context to both his decision and the subsequent narrative.
In fact, one reason society makes such stark value judgments about disabled lives is that disabled people are isolated from these kinds of conversations and cut out of the medical establishment. Ironically, the Times ran an article about the need to hire more disabled physicians a day before it was pushing for infanticide on the opinion pages. “Often the barrier to medical care isn’t the disability but a health system poorly equipped to handle it,” Dhruv Khullar wrote in the piece. The architects of that health-care system are indifferent to disability because they are acculturated to thinking of disabled lives as less-than.
The disability community’s outraged response to this opinion piece is akin to that of any community confronted with someone arguing for the right to kill them “for their own good.” Many of the ADAPT activists arrested are among those with the kinds of “severe disabilities” used to argue their lives aren’t worth living, like Carrie Ann Lucas, a Colorado ADAPT activist who uses a ventilator to breathe. They’re also used to hearing rhetoric that they are burdens on society because their lives don’t look like those of nondisabled people. This is painfully obvious in the Medicaid cuts proposed in the Republican health-care reform package, some of which may very well kill disabled people.
To uncritically support eugenics rhetoric at a time when the disability community is facing a sustained threat to its continued survival is, to put it mildly, problematic. But it’s not just bad for disabled people. It’s also bad for conversations about reproductive health and pregnancy care, whether people are being shamed for refusing abortion or for getting one.