Doing Science With Disabilities

Writing in The New York Times last month, Sara J. Winston, the coordinator of the photography program at Bard College, described the upheaval of having various unpleasant bodily sensations diagnosed as symptoms of multiple sclerosis. She soon began a course of treatment that sounds effective and encouraging, but the condition itself is chronic. Even in remission, the illness sets the pace of her life, requiring her to travel every 28 days to receive infusions. 

Accompanying the essay are Winston’s photographs of her visits to the clinic: part of a series of portraits of the artist as a young patient. Each of us “exists on a spectrum of illness,” she writes, “often dipping in and out of it,” but also prone to avoiding the topic. But “in a culture where it is taboo to talk about being sick … the taboo can allow shame to fester among those who are chronically ill.” Her creative work might be called therapeutically shameless—a public acknowledgment that her own well-being is precarious and contingent. Losing access to ongoing care would place her, she writes, “at risk of severe disability.”

Winston has allies on the other side of the seemingly impenetrable barrier between “the two cultures,” with the arts and humanities on one side and the sciences on the other.

The contributors to Uncharted: How Scientists Navigate Their Own Health, Research, and Experiences of Bias—a collection of 32 personal essays edited by Skylar Bayer and Gabi Serrato Marks, published by Columbia University Press—come from an array of STEM fields and write about their firsthand experiences of chronic illness or disability. While one contributor estimates that people with disabilities represent 20 percent of the world’s population, they are, the editors say, “highly underrepresented in science, technology, engineering, and mathematics.”

The editors note their surprise at finding “how many authors (including ourselves) had shared common experiences despite having vastly different diagnoses.” Winston’s observation in her Times piece about how the taboo on candor “allow[s] shame to fester” is echoed by a number of contributors. As a graduate student in geology, Jenn Pickering kept her diabetes a secret from her peers, dreading that someone might think she’d only been accepted into her program by “help[ing] the university attain some disability quota.” She experienced a potentially fatal “severe hypoglycemic event” while in transit to Bangladesh on a research expedition. “I remember fumbling desperately with a brownie wrapped in an impenetrable plastic wrapper,” she writes, “probably cursing at it while somebody or everybody noticed and stared.” Extracting it, Pickering “dutifully chewed [the brownie] like a robot, my mouth dry, no joy in the experience because my taste buds had been cut off by my brain minutes before to preserve more important bodily functions like breathing and circulating blood.”

Crisis averted, Pickering and her colleagues pursue their research. And with time and experience, she learns to live with her condition—to manage it without feeling compromised in the eyes of her colleagues. She is able to refer to shame in the past tense. Various contributors express an aversion to being called “brave” or a “warrior” or to “overcoming” their disability. Such expressions tacitly accept what the editors call “the typical deficit-focused narrative of disability” and, however well-meaning, do little to allay feelings of stigmatization beyond covering them with a saccharine glaze. The editors prefer to frame the personal essays in their collections as narratives of “driving ourselves forward as whole people, including our disabilities.”

One of the memorable instances of this is Daisy Shearer’s account of her autistic nervous system’s navigation of the route between her front door and her physics laboratory. The sidewalks and railway train are a blooming, buzzing confusion even on an ordinary day, or especially then.

“My brain is in overdrive,” she writes, “trying to process everything, desperately attempting to predict everyone’s movement to make sure I don’t bump into anyone and cause an unexpected sensory experience that I know could push me into a meltdown or shutdown. My brain craves certainty and control, so being around so many people can be a challenge unless I’m very focused on my objective.” At the end of her quest is “a split-coil superconducting solenoid with optical access from all four sides … basically a huge magnet that you can shoot lasers into.” Her first encounter with it (“so many knobs and valves and gauges to keep track of”) was terrifying, but familiarity led not just to confidence but what sounds like a kind of affection for the device.

The inner drama in a large majority of these personal essays unfolds in a higher ed environment, often experienced as a zone of conflict. Seldom are academic institutions or their personnel depicted as any more welcoming than the Americans With Disabilities Act makes absolutely mandatory. And sometimes less, as emerges from Alma C. Schrage’s memoir of her conference-going and research fieldwork as a young, deaf biologist (one of the two or three best pieces in the volume, in my opinion).

Attending her first academic conference as an undergraduate leaves her unable to “read or look at a screen because of eyestrain from lipreading,” despite sitting on the front row of every session she attends. Shortly before another conference, she writes, “the hosting university realizes that I am a student visiting from another institution, and it immediately retracts its previous offer of providing interpreters.” This second conference tale has a better outcome: a conference organizer (“a leading scientist in our field”) rallies together a team of volunteer note takers.

“Her action means a lot,” writes Schrage. “My advisors and hearing mentors always treated accommodations as something they could not be bothered with beyond sending a couple of emails or turning on captions. When these failed, they shrugged and gave up, leaving me to struggle on my own.” Other essayists write about the toll of ruthless professionalization on their colleagues’ capacity for meaningful empathy—a topic Schrage does not pursue, but which certainly comes to mind in reading her narrative.

Alternating with Schrage’s conference experiences are short accounts of remote fieldwork with her colleagues, in small groups. “In a matter of weeks, my coworkers gradually adjust to my deaf tempo; sometimes grudgingly, sometimes unconsciously, sometimes intentionally, they become aware of communicating with someone whose perception of the environment is different from theirs.”