I’m a carrier for Maple Syrup Urine Disease, which, despite its rather charming name, has some serious implications for people with two copies of the genetic mutation. Someone with MSUD can’t digest any protein without suffering from debilitating seizures that lead to brain damage and eventually death. In order to live with MSUD, people need to drink a special formula of amino acids that supplies their bodies with the necessary building blocks to sustain life. I learned I had the recessive gene for this disease when I opted for a fairly routine prenatal screening for the most prevalent genetic mutations in the Ashkenazi Jewish population when I was pregnant in 2011. Because my partner, who was subsequently tested, doesn’t have a copy for the mutation, any child we have together could never inherit the disease.
As anyone who has been recently pregnant in North America will likely tell you, our experience is now common for people with access to prenatal care. Yet some disability scholars and activists would argue that I was engaging in a form of eugenics both because I submitted to these tests, and because I would have had abortion if our fetus tested positive for a disease like MSUD. The writer George Estreich argues that while prenatal testing isn’t itself eugenic, its availability could encourage eugenic ideologies that stem from early twentieth-century beliefs that a person with a disability could never be part of the “human family.” The bioethicist Mark Leach takes an even stronger position, and explicitly calls prenatal testing eugenic because it’s sometimes used to abort fetuses diagnosed with Down Syndrome, which he argues should be accepted as part of human diversity.
Eugenics is a powerful word because it has an atrocious history, and when disability rights advocates draw on its power to make their claims, their arguments emphasize how people with disabilities have been marginalized, excluded, and eliminated. I see the compulsion to use this language because it makes people listen, and it draws attention to critical issues about living with disability in the twenty-first century.
But the critiques of prenatal testing (and presumably the abortions that follow), which argue that the practice threatens diversity or the human family, ironically end up replicating the underlying logic behind eugenics: Women need to reproduce for the benefit of the nation-state. In other words, our reproductive choices have repercussions that exceed us. These arguments, which have endless variations, once again give women’s reproductive lives a greater responsibility by arguing that women’s bodies and reproductive choices can be held responsible for whether a more utopic (diverse or moral or tolerant) future might arrive, just as eugenic scientists and politicians argued at one time when justifying laws for forced sterilization and limited access to contraceptives. Even though disability rights rhetoric resists subscribing to the norms that shape how disabled bodies are valued, calling prenatal testing and selective abortion “eugenic” enforces the norms that dictate how women should behave reproductively.
In 2013 Emily Rapp published Still Point of the Turning World, a memoir and philosophical meditation about her son’s diagnosis with and eventual death from Tay Sachs disease. Tay Sachs is caused by a devastating genetic mutation and has no treatment and no cure. Over the course of two years Ronan lost the ability to see, eat, and interact with his world. He also suffered from severe seizures as his brain deteriorated. He died before he turned three, meeting the normal life expectancy for a baby diagnosed with this horrible disease. Like me, Rapp was tested for the genetic mutation for Tay Sachs when she was pregnant with her son, but because she carried a rare form of the mutation—and the genetic test only looks for the more common mutation carried by Ashkenazi Jews and French Canadians—the test failed to detect that she was a Tay Sachs carrier. Her husband, who is Jewish, did carry the more common Tay Sachs mutation, but because a diagnosis of Tay Sachs requires receiving the mutation from both parents, Rapp and her husband did not know that their son was at risk for the disease.
Rapp’s telling of her story is heart wrenching but also beautiful and poignant and steeped in the apparent love she has for her son. It’s for all these reasons that disability studies scholar Rosemarie Garland Thomson, who I’ll focus on here only because she has called prenatal testing eugenic most recently and explicitly, uses it as a primary example to argue that disability is worth conserving and that to not conserve it is a form of eugenics. The memoir is an example for Garland Thomson of how “suffering expands our imagination about what we can endure.” She sees Rapp’s experience, what she calls “her careful balancing of suffering’s costs with the benefits of the ‘blissful’ love Ronan begets” as an example of a counter-eugenic logic (her term) because Rapp is able to simultaneously embrace both the pain and joy that Ronan brings. For Garland Thomson these contradicting emotions, however difficult, are what disability has to offer the human experience, and she mourns the loss of diversity she imagines would result if fetuses, even fetuses with Tay Sachs, were aborted — a word I should note she rarely uses in her essay. It’s this loss of diversity that she also calls eugenic.
Rapp views abortion’s relationship to disability differently. A year before Ronan’s death, Rapp published an essay in Slate where she wrote in unequivocal terms,
If I had known Ronan had Tay-Sachs [when she was pregnant], I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision. I’m so grateful that Ronan is my child. I also wish he’d never been born; no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure. Both of these statements are categorically true; neither one is mutually exclusive.
In her essay Garland Thomson acknowledges that Rapp would have had an abortion if she had known about her son’s diagnosis, and yet, she dismisses Rapp’s own argument that Tay Sachs should be eliminated in order to use her memoir as evidence for her critique of prenatal testing and an example of a counter-eugenic logic. Implied in her critique is the argument that if Rapp had aborted her fetus, if she had learned about the Tay Sachs diagnosis during pregnancy, then she would have been engaging in eugenics.
Taking a somewhat different perspective from my own, Nikolas Rose, known for his analyses of contemporary scientific technologies, argues that describing prenatal genetic testing as eugenics misunderstands the term and its history. According to his argument, prenatal testing—and other forms of genetic testing labeled as preventative medicine—is “individualized, voluntary, informed, ethical, and preventative” and organized around the “pursuit of health.” Even as Rose is aware that these tests inscribe disability as a defect, he insists that they cannot be called eugenic because, as he explains, eugenics occurs primarily under the auspices of the state—that is, with persuading the state to set laws that shape the population in order to form a nation-state with a sought-for identity. The concentration camps of Nazi Germany are of course the example that comes to mind. But so are the forced sterilizations of disenfranchised women in the United States that were decreed legal by the Supreme Court in 1927. Following Rose’s argument, Rapp’s experience can’t be counter-eugenic because its terms are individual. Nowhere does Rapp argue that all fetuses with Tay Sachs should be aborted or that her son challenges the reproductive decrees of the state. On the other hand, George Estreich, Mark Leach, and Garland Thomson’s (and others) reasoning attempts to create a “feel good” politics that situates disability as a form of national diversity or the human family. Rapp’s writing about her son never tries to find any good in his suffering. His suffering, she lets us know explicitly, is bad—awful, painful, unbearable.
Where are we left? What is the answer to the argument that prenatal testing threatens seeing people with disabilities as fully human and valued members of society? Because the truth is that argument does have validity. My answer is actually the same as what I’d tell any anti-abortion activist (if one would agree to listen): Please focus on those people who are alive. Leave women’s reproduction out of it; access to abortion without guilt or shame is already a privilege few women have access to. Furthermore, women’s reproductive lives shouldn’t bear the responsibility for eradicating the marginalization of people with disabilities or for advancing the rather vague concept of diversity. If we can one day reach a place where disability isn’t viewed as a stigmatized difference, then my hunch is that testing prenatally for disability will fall to the wayside as an issue.
–Karen Weingarten teaches English at Queens College, CUNY and is the author of Abortion in the American Imagination: Before Life and Choice, 1880-1940