Dr. Kristina Gupta is an assistant professor in the department of Women’s, Gender and Sexuality Studies at Wake Forest University. She spoke at the UNC Health Humanities Grand Rounds (HHGR) in a talk entitled “Beyond ‘Medical Necessity’: Transition-Related Care Before and During the Pandemic.”
Professor Gupta’s book Medical Entanglements, which formed the underlying basis for her talk, focuses on the complex relationship between disability and biomedical treatment. In her talk, she made use of this core insight of disability studies: A focus on “cure” as the ideal management of individuals who have disabilities implies that their existence is less than full, valuable, and worthwhile than those without disability. For instance, she observed the important attempts to depathologize different modes of being in the world, such as removing homosexuality from the Diagnostic and Statistical Manual of Mental Disorders or members of the Deaf community refusing the label of “disability” with respect to deafness. At the same time, she argued, rejecting this framework by describing oneself as “’not sick,’ ‘not disordered,’ or ‘not disabled,’ suggests that one can know what it means to be ‘sick,’ ‘disordered,’ or ‘disabled’—in other words, that these social categories have ascertainable borders.” A key portion of this argument is that disability exists as a category as a result of structural inequality. It is through our built environment and modes of productive work that disability appears. Inaccessible transportation, unnavigable sidewalks and work that requires sitting upright in a chair for eight hours are all what make different bodies into disabled bodies. A more just world would accommodate differential modes of existence. This has led some theorists to argue that participation in treatment accommodates society’s view of some bodies as disordered, which in turn reinforces a mode of thinking that is ableist, racist, transphobic and misogynistic.
At the same time, other thinkers observe that the technologies of medicine can, for some, lessen suffering and improve livability. For instance, hormone treatment and gender-confirmation surgeries can improve the lives of some trans people. In fact, within this framework, the challenge is not the procedures themselves, but medicine presenting itself as a gatekeeper of “deservingness,” keeping interventions only for individuals who conform to the limited disease categories available to medicine.
Gupta aimed to transcend these tensions. She reframed the need for medical interventions on the basis of livability and fulfillment as opposed to disease. In other words, while there are inherent dangers in reinforcing problematic biomedical frameworks by participating in any intervention, the benefits to an individual’s flourishing may outweigh the costs. This same principle implies a different mechanism for accessing care than relying on fitting into a disease. Rather than having to align with prescribed diagnostic categories for insurance to cover treatment, Gupta argued panels constructed in line with feminist, democratic principles will consult on individual choices, focusing on how treatment will improve livability for an individual, while avoiding a hierarchy of bodies based on ableist norms.
This framework established, Gupta discussed transition-related care in the pandemic. At the start of the COVID-19 crisis, many hospitals suspended “non-essential” or “elective” procedures, expecting to require increased capacity to manage an influx of COVID patients. Gupta cited the National Center for Transgender Equality, who understood the necessity of this decision and were satisfied that trans-related surgeries were not being singled out for cancellation over other elective care. However, Gupta drew attention to the term “non-essential” for procedures known to reduce mortality in trans individuals, pointing out a temporal language of emergency would have been less stigmatizing. She also applied this shift in language to abortion services, which were similarly delayed in the pandemic even though abortion’s legality and process both depend on the age of the fetus.
Applying her framework of livability, she said abortion could have been categorized as emergency essential care, while trans-related care could have been categorized as non-emergency essential care, with the flexibility for individual contexts in cases where trans-related care was a matter of imminent livability. She then noted how this shows a limitation of her framework: This level of individual context requires labor efforts that might not have been available at the start of the pandemic. However, Gupta also cited a study that argued the interruption in medical care for trans people was less significant than the loss of community support, whether it was support groups, bars, clubs, etc. Knowing it is a sole study and thus at most suggestive, she argued that examining these supports as a matter of livability could raise them to the level of necessity, rather than privileging medical intervention. Her framework would enable this type of question.
I found Gupta’s idea intriguing. Instead of reifying the biomedical perspective, her mode of thinking centers the wellbeing of those cared for, focusing on what they feel to make their lives full and valuable. At the same time, I had several questions. First, while her questions about the disease framework are well taken, some individuals find value in the distance afforded by setting disease apart from themselves. For instance, a person with cancer might choose to conceptualize it as a disordered object within their body, not a part of their body. Similarly, someone with mental illness may say that their untreated personality is not their “true self,” but a victim of a disease acting on their brain. Gupta’s alternate language of fulfillment appropriately pushes against viewing a disabled body as lesser than, but I wonder if it has space for what can be powerful about the language of disease: namely, I am a person apart from this disease, and I can hold and recapture that self through care. Second, while it would have been too much to ask of what was already a full and detailed conversation, how exactly would these feminist, democratic panels be structured? As my first question implied, it is hard to know how to assess what makes one person’s life livable and for another needs to be held apart from themselves. While perhaps, a panel assessing individual context could be fairer than the distanced power of biomedicine permitting modes of treatment, it runs into the same problem as the current system, asserting control over what biomedical intervention is available, while having the additional deficit of arbitrariness. Decisions made on individual context can shift in values, making choices opaque and inconsistent. This is not to say it would not, in theory, be more just, just that the details of who sits on the panels, how they come to a decision, and how visible that decision-making process is all shape the potential value of these decisions.
Jesse Bossingham is a fourth-year medical student at UNC, currently pursuing an MA in Comparative Literature in the Literature, Medicine and Culture program. He is interested in geriatrics and palliative care, particularly understanding the narratives that drive the American discourse around aging.