When Everything is Eugenics, Nothing Is
Preventing severe disability is a laudable goal. Crying eugenics renders the word meaningless.
Papers published in academic journals rarely capture public attention, but last year a study from Social Science and Medicine – Qualitative Research in Health was picked up by a variety of mass media outlets. The paper focused on whether testosterone therapy should be discontinued in transgender men during pregnancy, but that wasn’t the reason for the coverage. What got everyone’s attention was rather the authors’ shocking dismissal of the increased risk of metabolic, urogenital, and neurodevelopmental conditions in babies exposed to testosterone. One of the reasons given was: “The desire to maximize the ‘fitness’ of offspring, and guard against development of conditions or human characteristics considered ‘unhealthy’ or less than ideal, may reflect troubling eugenicist and biomedical moralist underpinnings in ways that further harm already socially-marginalized people.”
The belief that disability is not inherently bad isn’t new. Social models that locate disability in the mismatch between people and their environments, not in individual bodies, have long been endorsed by some disability studies scholars—most recently by Elizabeth Barnes in her “value-neutral” model, in which she defines disability as “mere-difference.” But this has never been a consensus position. As feminist philosopher Susan Wendell pointed out almost thirty years ago, there is “much suffering and limitation” that social justice and cultural change cannot fix.
So I was surprised when, six months after the paper was published, the very mainstream National Institutes of Health (NIH) announced that they were considering removing the goal of reducing disability from its mission statement at the recommendation of an advisory committee that blasted the idea that disabled people need to be “fixed” as “ableist.” It was a surreal conversation to follow as the mother of a profoundly autistic son, Jonah, 25. We don’t talk about “cure” very much anymore, given that scientists seem no closer to identifying one than they were when Jonah was diagnosed more than two decades ago, but as a thought experiment? Not only would I cure him if it were possible, but if I could eradicate profound autism in future generations, I would without hesitation. Now, considering the tenor of these online debates, I was forced to consider: did that make me a eugenicist?
Jonah is full of love and energy. When he’s feeling particularly affectionate, he will come over and press his cheek against mine, or drape his six-foot frame against me so I stagger under his weight. On those days, when Jonah is calm and happy, when he asks to “walk with Mommy” or “draw with Mommy” (he doesn’t do pronouns), sometimes I think: yes, I could do this forever.
Someone will have to. Jonah requires round-the-clock care. Without prompting, he would never brush his teeth, shower, put on a coat, or take the medicine that controls his seizures and minimizes the aggressive behavior that necessitated an almost year-long hospitalization when he was only 9 years old. He has no safety awareness, so our house has code locks on all the exterior doors to prevent wandering—a dangerous behavior exhibited by more than half of autistic children, and one of the leading causes of premature death in this population.
Recently, Jonah brushed by the stove, accidentally turning on one of the gas burners. To say he didn’t notice is to obscure much more fundamental deficits. He doesn’t understand what fire is—how it starts, how it spreads. He wouldn’t yell for help, grab a fire extinguisher, or even know to leave the kitchen before being trapped. We are all—my husband and four other children—so conditioned to stay alert that it’s not even a conscious act: within seconds, my younger son jumped up to turn the burner off.
In his recent memoir Troubled, Rob Henderson articulates the concept of luxury beliefs: “ideas and opinions that confer status on the upper class at little cost, while often inflicting costs on the lower classes.” He focuses on socioeconomic status, but I can’t help thinking that perhaps the greatest luxury belief of all is that disability is neutral. It sounds progressive and empowering—yet betrays complete ignorance of what severe intellectual and developmental disability looks like, or how it impacts affected individuals and their families. Perhaps ignorance is the wrong word. More accurately, some disability advocates aggressively shut down incongruent narratives with accusations of “eugenics” and “ableism,” to the point that even the NIH would rather abandon its founding mission than challenge this stunningly obvious fiction.
Because disability is not neutral in our house. Jonah will never have a meaningful career or a romantic relationship. He will never understand politics, geography, history, or philosophy. He can’t follow the plot of Star Wars or even Paw Patrol, choosing instead the Sesame Street music compilations we had on VHS when he was a toddler, which kind souls have since uploaded to YouTube. There’s nothing wrong with Sesame Street—we quote it so often, even when Jonah isn’t around (“I told you, it wouldn’t be easy”; “I guess not every crazy idea works”; “I might even say it’s Oscar-worthy!”) that I think of it as our family’s love language. But no one would choose this extraordinarily constrained life—not for themselves, or for their children.
Does that make me a eugenicist? Impossible to answer. If promoting the health of fetuses with the goal of preventing disability counts as eugenics, then anyone who has ever taken a prenatal vitamin, or avoided alcohol or sushi during pregnancy is a eugenicist.
By crafting a definitional net that captures everyone in it, disability advocates risk rendering the term essentially meaningless, keeping us from identifying morally problematic practices that truly harm disabled people. For example, we will be unable to distinguish between a hypothetical law that absolves insurance companies from covering medical care for children with Down syndrome if the mother knew and chose to carry the pregnancy to term anyway (an obviously abhorrent practice), from reasonable choices that some individual parents may make, such as using IVF to select against embryos positive for Lesch-Nyhan—a genetic syndrome in which affected children are so self-injurious that some have had their teeth removed in a last-ditch effort to keep them from biting themselves.
Some disability advocates play “eugenics”—and the related accusation of “ableism”—as the ultimate trump card, shutting down conversations that fail to comport with their fantastical view of disability as a “neutral” difference. But we, the parents of profoundly disabled children, need to be able to say: this is hard. Or even: this is impossible. My family has every privilege you can imagine—two hands-on parents with fairly flexible jobs; extensive state support; a fantastic day program; experienced, talented physicians; an excellent home team; and the money to fill in the gaps. What this means is that there are only some days that I think, I can’t do this anymore—the days Jonah is so agitated I need to remain within a few feet of him at all times so I can block him from hitting himself on the side of his head, which he does so frequently he’s giving himself cauliflower ear. Or when he is so perseverative that he asks dozens of times an hour for a teacher he had more than fifteen years ago, or permits nothing to be moved—milk out of the refrigerator, or dishes out of the dishwasher—without immediately scrambling to put it back.
Of course, most families have much fewer resources than mine. As the Vice President of the National Council on Severe Autism (NCSA), these are the stories I hear all the time: parents forced to quit their jobs; profoundly autistic adults warehoused in emergency rooms; crisis-level shortages of direct care workers; siblings terrified about the increased genetic risk faced by their own children. If NIH removes the goal of reducing disability from their mission statement, they will fail every single one of these families, and push an already marginalized population so far out of public discourse that they—and their intensive, lifelong needs—will become virtually invisible.
Amy S.F. Lutz is a historian of medicine at the University of Pennsylvania in Philadelphia and Vice President of the National Council on Severe Autism.
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Thank you so much for writing this. I was born with a disability in both hands. Luckily, it hasn't affected me too much though I had multiple surgeries as a child and adolescent. If I could, I would absolutely prefer to have two "normal" hands. It infuriates me that these luxury beliefs are being championed by anyone, let alone doctors.
In my experience, the people who insist that a disability is actually a strength have not lived with one and are ignorant of the hardships people with disabilities and their caregivers face.
It's interesting, and not coincidental, that this came out of an article about trans issues. I think there's a connection between this expansive definition of "eugenics" and some kinds of trans activism, based on a philosophical error. (It might well have an official name, I'm not sure.) It's a confusion between looking at one's self retrospectively and looking at the future of someone else (often a hypothetical future person). A person with a disability understandably doesn't want to think of themselves as having lesser intrinsic value as a person, or to focus unnecessarily on the negative aspects of their disability (especially when it's immutable). But some advocates turn that into a strange proscription on pre-emptively avoiding that disability or ameliorating it early on, as we see in this piece. The debate among deaf (or "Deaf") people about cochlear implants is another good example of these concerns.
I think some of the rhetoric of trans activism is similar at a philosophical level. An adult who has transitioned and deems it a good choice retrospectively (which is their call) then presumes that such a step is helpful or necessary proactively for another person (often a minor), who may not share the same traits, and (under the affirmative model) cannot "ethically" even be differentially diagnosed. (There often seems little or no recognition of the basic statistical fallacy involved in predicting what should be done for one group based on the experiences of a different, retrospectively selected group.) And as in the disability case, I think there's a lot of emotion involved on the part of trans activists, due to the understandable desire for them to vindicate their own choices, which then gets projected on others.