What’s Best for Them: Teaching Disability Studies to Science Majors

In one of Seinfeld’s more controversial episodes, Jerry tells his friends that he finds Asian women particularly attractive. When someone else points out that fetishizing Asian women could be considered racist, Jerry is aghast. “If I like their race,” he demands, “how can that be racist?” Many of the students who walk into my class on disability in American literature and culture could relate to Jerry’s astonishment. Overwhelmingly, they sign up for that class because they like people with disabilities. Although the class is offered through the English department, the majority of students who enroll are science majors. Many are pre-med, often specializing in molecular biology and genetic science. Other students are majoring in fields like special education and physical therapy. They are all deeply steeped in the medical model of disability, and the attendant narrative of heroic doctors who rescue, cure, and otherwise fix their patients. They are deeply invested in being the good guys in the battle between sickness and health. A central task of my class on disability studies is to expose and interrogate the paternalism that often permeates the medical model.

It is tempting—but I would argue, dangerous—to create a syllabus that simply swaps the doctor out of a heroic role into a villainous one. Much disability theory was created in explicit opposition to the assumptions that science and medicine have produced as truths about how bodies should work. One constructed “truth” that has proven particularly devastating is the assumption that medical professionals are the most valid authority on what’s best for the patient. As Nancy Mairs writes, this paternalism further diminishes the experience and agency of people with disabilities, rendering them still more marginalized. “To some extent,” Mairs argues, “paternalism infects [medical professionals’] relations with all their patients—a word that doesn’t share its root with “passive” by accident—because [physicians’] apparent (and often real) power over life and death reduces us all to a childlike dependency on their superior knowledge. We reinforce their dominance through our docility” (161). But for my students, the role of parent-doctor is an enticing one indeed, one that allows them to ease suffering, rescue the lost, and cure the sick. As young adults eager to escape their own childhood dependence, medical expertise offers tantalizing authority. My goal is not to shame them for their rescue fantasies, but rather to prompt them to ask how they might disentangle the desire to help from the need to control the unwieldiness of difference and suffering.

In these classes, I include texts that directly address the damage the medical model can do, such as Rosemarie Garland-Thomson’s deft analysis of the overlap in the medical specimen and the freak show carte de visite, or Lucy Grealy’s heartrending experiences as the patient of a supremely arrogant and un-empathetic oncologist. But I’ve found that one of the most effective ways to think productively about the paternalistic underpinnings of the medical model is through an even more naturalized dialog between paternalism and infantilization: the relationship between parent and child. I’ve created a cluster of texts and films that place questions of medical authority—and the normality it enforces— in a familial framework. I begin the conversation with Josh Arson’s documentary Sound and Fury, followed by Katherine Dunn’s 1989 novel Geek Love, and finishing with works by disability theorists (and parents of children with disabilities) Michael Bérubé and Rachel Adams.

The Oscar-nominated Sound and Fury deals with the choices two different families make about whether or not to arrange for cochlear implants for their deaf infants. In the film, two brothers, one deaf, one hearing, both have deaf children. The hearing couple (who nonetheless have deep familiarity/family ties with deaf culture) decide to have their infant implanted before age one. But the major tension of the film stems from the desire of a deaf five-year-old girl who importunes her deaf parents for a cochlear implant. Shockingly, for my students, the parents ultimately refuse her request and do not opt...