Redefining the Field: A Critical Review of the 2019 International Health Humanities Consortium

Maryam Golafshani // Though this was my first time at the Health Humanities Consortium’s international conference, which just celebrated its fifth year, I was struck by the sense that a pervasive shift is taking place in the field. The scholarship at this year’s conference strongly reflected how the health humanities are expanding beyond the field’s initial focus on the singular practitioner-patient relationship to also consider wider structural and systemic concerns in healthcare. The health humanities initially emerged in response to modern medicine’s failure to attend to individual patients—their unique stories and experiences of illness, health, and disability—and the individual healthcare practitioner’s and learner’s responsibility to rectify this problem by honing their attention, interpretation, and empathy through the arts and humanities. While this initial focus remains crucial, scholars at this year’s conference consistently came back to the “yes and” refrain: yes, we need to think about the practitioner-patient encounter, and we need to recognize the wider systems and structures that condition such encounters. Modern medicine and healthcare have zoomed too far out; the health humanities has sometimes zoomed too far in. So, this new phase of the health humanities involves finding a critical balance between the two: scoping into the intimate encounter while also scoping out to the wider contexts those encounters are embedded in. 

In her opening plenary talk and the following discussion, MK Czerwiec (a.k.a. “Comic Nurse”) emphasized the potential of graphic medicine to hold multiple, at times even conflicting, perspectives together. I think this can be extended to the broader health humanities project: to hold multiple perspectives together, from up-close perspectives to wider views of the systems that shape healthcare. The discussion that followed Czerwiec’s talk was especially illuminating in this regard: some audience members shared their experiences with the difficulty and/or discomfort of “reading” both image and text at once, and these comments led to further discussion of how we might consider this discomforting “reading” experience in relation to the disability studies concept of crip time. That is: perhaps reading comics is discomforting for some as it challenges ableist expectations for reading to be a fast, linear experience—and that critically reflecting upon that discomfort may be key to recognizing, valuing, and even imagining diverse experiences of time, like crip time. In this discussion, those of us in the audience bore witness to the health humanities’ shift from the individual reader-text experience to wider, structural concerns.

Dr. Anand Prahlad’s plenary on “Disability, Race, and the City of Imagination” also brought forth critical insights from disability studies and his own personal experiences with disability and race. Dr. Prahlad began by remarking on a crisis of imagination wherein people do not realize that imagination is socially determined. Most people think of imagination as an inherently positive force that is inextricably tied to creativity. But Dr. Prahlad argues that while not everyone is creative, everyone largely acts upon what they imagine, and that this imagination is socially determined in ways that can be highly negative, like racist imaginings of Black people as inherently violent. Imagination thus serves a social and political function; thus, the health humanities must attend to not only the individual’s imaginative capacity, but also the political and social forces that structure imagination. It is only by attending to these structures that we can imagine things anew and potentially subvert such oppressive structures in healthcare. Dr. Prahlad thus coins disability studies as “disimagination studies,” as it dis-imagines the ableist society in which we currently live. In the discussion following his talk, Dr. Prahlad offered an important disability-informed critique of empathy: he shared how he has read a lot about how people on the autism spectrum “cannot” empathize, yet when he sees the injustices perpetrated by people who “can” empathize, it leaves him wondering if empathy is really such a desirable thing. This “disimagination” of empathy as a key concept in the health humanities instead imagines a kind of healthcare that does not necessarily require empathy, but is just and compassionate nonetheless.

This movement away from individual healthcare encounters to structures of (in)justice emerged repeatedly in the panels. In their presentation on “Narratives of the Other in Dominant Social Consciousness,” Dr. Em Rabelais offered the crucial yet too-often forgotten reminder that race is not the health risk factor—racism is. Dr. Rabelais argued that while narrative-approaches to clinical care do shift some power back to the patient to tell their story, they cannot wholly address the power imbalances wrought by, for example, racist structures in healthcare. My own presentation turned to Sara Ahmed’s feminist phenomenology in order to implicate such structural inequalities in the singular clinical encounter. Meanwhile, Dr. Brian Volk’s presentation brought us back to the realm of medical education. Dr. Volk reflected on the challenges of teaching Wendell Berry’s literature and essays to medical students and residents (e.g., objections to his strongly worded critiques of contemporary healthcare), as well as some suggestions on how to mitigate resistance by students and residents (e.g., introducing students to Berry’s other literature before his essays). He ultimately argued that Berry should be more widely taught because of his important critiques of how healthcare systems problematically focus on the health of isolated individuals, rather than recognizing how health or illness is produced through communities and systems. Finally, Dr. Stephanie L. Shively’s presentation focused back on healthcare providers. She critically analyzed the rhetoric around physician burnout to reveal how it problematically focuses on individual physicians’ suffering rather than institutional factors that contribute to the problem. This led to a lively discussion on how “wellness” is used to deal with an individualistic understanding of burnout and how even health professional school admission processes now focus on admitting “resilient” students with “longer batteries.”

There was also critical movement from thinking about patients in relation to practitioners to, instead, thinking about patients in relation to non-human entities. In his presentation on “Is the Bacterial Resistome a Hyperobject?”, Dr. Lorenzo Servitje used ecocritical theory to consider the immense network of material assemblages that render antibiotic resistance a hyperobject: a system of such diverse human and non-human ecologies that it can never be wholly grasped. He argued that we must scope out far beyond individual patients with antibiotic resistance in order to truly grapple with the bioethical challenges posed by the issue as it transcends healthcare’s anthropocentric focus. In another panel, Drs. Kirsten Ostherr, Andrea Charise, and Mikki Kressbach considered how the health humanities can contribute to the rapid developments in health technologies. Dr. Ostherr revealed how healthcare data-mining that purports to capture the social determinants of health actually reproduces power inequities; Dr. Kressback focused in more closely on how mobile menstrual tracking applications reinforce gendered stereotypes and bodily alienation for their users; and Dr. Charise brought us back to the site of singular healthcare stories around aging in Scarborough, Canada, as told through digital storytelling. Thus, in this single panel we saw an immensely wide spectrum of scope for health humanities scholarship: from the wider structures of healthcare technology to the intimate, singular health and illness stories told through technology.

Finally, I want to end by reflecting on Dr. Shannon Guillot-Wright’s presentation on “Migrant Workers’ de Jure vs. de Facto Access to Health”, which focused on the labour and health conditions of Filipino migrant seafarers. Her mixed methodology of photo-voice, participant observation, and semi-structured interviews not only attended to the unique experience of individual seafarers, but also situated those experiences within wider economic, political, and social conditions. For example, Dr. Guillot-Wright’s analysis revealed how the “culture” of not seeking healthcare is more often a result of cultures of structural violence, not simply cultural identity factors. As such, sickness for the Filipino migrant sea-farers is too often a literal embodiment of structural violence. More broadly, Dr. Guillot-Wright’s presentation emphasized how the doctor-patient encounter is but one of many encounters a person will have with regards to their health, which reminded me of Dr. Prahlad’s plenary remark that “there is no such thing as a single interaction between a patient and healthcare provider.” Put together, these two insights importantly remind us that the patient-provider encounter is always already a multiplicity of encounters both within and beyond it. This is perhaps the most crucial insight I take away three incredibly rich days at the conference: that we must be always scoping both into and out from the patient-provider encounter.

Maryam Golafshani (@margolafshani) is an MA Candidate at the Centre for the Study of Theory and Criticism, Western University, Canada.

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