Taking Stock: Disability Studies and the Medical Humanities

While on the academic job market over the past few months, I had many opportunities to define myself as a scholar. You get particularly good not only at elevator pitches—short, pithy descriptions of your intellectual interests and dissertation project—but also at sketching out your intellectual formation. My research and teaching interests have primarily been in the fields of disability studies and the history of medicine. I am frequently asked why I do not always describe myself as a medical humanist, especially given my investments in making accessible and relevant humanistic thinking to primarily STEM students. I want to meditate briefly on the stakes of this disciplinary division and the ways in which interdisciplinarity (yes, that buzzword) shapes critical inquiry. How does training in and self-identification with a particular discipline open up or limit the kinds of scholarly objects we engage with and what we might do with them?

In 2005, Diane Price Herndl reflected on how medical humanities seemed increasingly antithetical to disability studies. In her simplest articulation of the difference between the fields,

the definition of disability used in disability studies focuses not on the body but on the social; disability is not something that a person possesses but something one encounters when dealing with other people or with physical spaces that are inaccessible. Disease, on the other hand, is almost always understood as located in the body itself.[1]

Disability studies, born out of 80s and 90s rights-based activism, has long rejected the medical model, which confines disability to biology by framing disability as a state of being to be cured, fixed, or ameliorated through medical intervention. In place of this model which stigmatizes disability as anomaly or pathology, disability activists and scholars have championed the social model, which understands disability as a product of relations and encounters with particular environments or cultural frameworks that privilege certain bodies over others. The social model has created points of solidarity between disability and other minority discourses, which radically resist the notion of identity as “a biological or natural property” in favor of it as “elastic social category both subject to social control and capable of effecting social change.”[2] What disability studies does so powerfully is reject the idea that disability is individual defect and that it should be entirely under the purview of health professionals. It is a field that has exposed the ways in which medicine has historically held the institutional and cultural power to determine what is normal, what is healthy, and what is to be done with those who fall out of these categories. By refusing the typical linear trajectory of diagnosis, treatment, and cure, disability troubles conventional narratives of medical progress.

Herndl importantly locates the differences between these fields in terms of their institutional histories. Disability studies, like queer studies, emerged out of civil rights movements while medical humanities (and narrative medicine) emerged in response to the overstressing of technological and scientific training of many clinicians. Given that the medical humanities “began in the institution of the medical school and for the most part has relied on institutional funding or at least the benevolence and interest of physicians,” it is a field less likely to be strongly critical of the theory and practice of medicine at large.[3] As Herndl puts it, “while disability studies takes as its primary goal changing policies, environments, and minds, medical humanities seeks to improve the status quo.”[4] Unsurprisingly, scholars in these two fields seldom seem to cite one another or draw from each other’s methodologies and claims.

Herndl ultimately takes both fields to task for their extremism:

While I am sure that medical humanists are too committed to a medical model of the body that sees it as the “there” that is really there, I also think that [Michael] Bérubé is probably right that disability scholars are so committed to a model of an almost infinitely malleable social construction of the body that scientific disciplines may ignore us.[5]

While I understand her assessment of the fields’ polarization, disability studies has, since 2005, questioned the “infinite malleability of social construction” and even the political purchase of the social model itself. I am thinking of the many other models of disability that have arisen in response to the field’s overemphasis on the social: 1) Alison Kafer’s political/relational model,[6] which reincorporates lived experiences of impairment and even desires for improvement and cure; 2) Tobin Siebers’ “complex embodiment,” which understands disability not purely in terms of disabling environments’ effects on people’s lived experience of the body, but also how factors like chronic pain and aging derive from the body and shape the social.[7] I remain deeply attached to disability studies’ tendencies toward self-reflexivity. Take for instance Chris Bell’s iconic essay, “Is Disability Studies Actually White Disability Studies?,” which continues to animate necessary intersectional work between critical race studies and disability studies today.[8]

Herndl is absolutely right that “the medical humanities has the attention of many physicians and the institutional space to make changes in medical practice.”[9] In order to develop a critical consciousness of medicine as a set of traditions, practices, and beliefs, medical humanities must do more than educate physicians on how to more empathetically attend to patients or how to and interpret patient narratives. It must, as Anne Hunsaker Hawkins and Marilyn Chandler McEntyre have themselves suggested in Teaching Literature and Medicine (2000), cultivate a sense of self-knowledge (even self-criticality) among medical practitioners about the past, present, and future of their field. What more can we do in opening up the “medical humanities” to the greater “health humanities”?

 

[1] “Disease versus Disability: The Medical Humanities and Disability Studies.” PMLA. 120.2 (2005): 593. In this piece, Herndl close-reads the key differences between to recent MLA publications, Literature and Medicine (2000) and Disability Studies: Enabling the Humanities (2002).

[2] Tobin Siebers. Disability Theory. Ann Arbor: University of Michigan Press, 2008. 4. For an introduction to the field, see also Lennard Davis’ Enforcing Normalcy: Disability, Deafness, and the Body (1995) and his edited collection, The Disability Studies Reader, as well as Rosemarie Garland-Thomson’s Extraordinary Bodies (1997).

[3] Herndl 595.

[4] Ibid.

[5] Herndl 597.

[6] See Kafer’s Feminist, Queer, Crip. Bloomington: Indiana University Press, 2013.

[7] Siebers first theorizes this in his earlier Disability Theory but returned to it just before his recent passing. See his conference presentation, “Returning the Social to the Social Model” (2014).

[8] See The Disability Studies Reader (4th Edition), Chapter 28. 406-415.

[9] Herndl 597.

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