Maryam Golafshani writes:

Last week I attended the Association of Medical Humanities’ annual conference. The conference was hosted at the Medical University of Sofia, Bulgaria with the theme of ‘Shadows and Ashes’ derived from the Roman poet Horace’s famous description of humans as ‘pulvis et umbra sumus’. The conference opened with remarks by Dr Vassilka Nikolova (conference convenor), a representative of the Medical University of Sofia’s Rector, and Dr Joseph O’Dwyer (AMH President) who made sure to especially welcome those attending the conference from close by. While it is typical to open a conference with a special welcome for those who travelled from afar, this time it was important to note the contribution of those from Bulgaria (and neighbouring countries) to a conference that continues to be dominated by British voices and ideas. This subtle yet significant shift in the welcoming remarks reflect a broader underlying concern throughout the conference: who and what do we welcome as knowledge within the medical humanities? Or to riff off the conference theme: what kinds of knowledge and knowledge bearers still remain in the shadows of the medical humanities?

During a break, I was having a conversation with Dr Jo Winning from Birkbeck when a few volunteers asked us to quiet down because a medical emergency was occurring nearby. This moment crucially reminded us the conference was set in St. Ekaterina Hospital. While presenting our medical humanities research, we were notably surrounded by the very clinicians, patients, students, and informal caregivers we hope to positively impact through our work. This kind of setting reminded us all of the urgent consequences of our research; medical humanities should not merely be an academic curiosity but should strive to impact those who medicine claims to care for. Yet while we were undoubtedly surrounded by patients, the conference still lacked patients as presenters themselves. Medicine has received many critiques in recent years about the lack of patients-as-experts at their own conferences—where patients are talked about rather than with—and I argue that medical humanities conferences must contend with the same critique. I don’t hesitate to guess that there were former/current patients and caregivers amidst the conference attendees and presenters; however, only one of the presentation I attended (given by Dr Davina Kirkpatrick from Plymouth University) addressed such a perspective. Her research on the ‘presence of absence’ was powerfully grounded in her own experiences of grief after the death of her partner.

Dr Kirkpatrick’s presentation thus inspired me to critically reflect on the erasure of the patient perspective from my own presentation. I presented on feminist phenomenology as a foundation for understanding ‘selfies’ as potentially politically powerful self-representations of ‘invisible illnesses’ (e.g. mental illnesses, chronic illnesses, etc.). Despite drawing upon feminist philosophies that importantly bring positionality and lived experience back into academia, I still erased my own positionality as someone with an ‘invisible illness’. I am now left wondering how the medical humanities—as an academic discipline that structures knowledge in particular ways—may have discouraged me from bringing my own patient perspective into my research. As the medical humanities becomes increasingly entrenched as an academic discipline in its own right, does it risk eschewing the ‘personal’ for a fallacious sense of ‘professional’ rigour and ‘objective’ knowledge? Where does that leave the patient voice? Or researcher-as-patient voice?

While the conference may have lacked patient voices, it did include research in an abundant diversity of forms. Presentations took the form of films, visual art, performance art, art-making, exhibitions, workshops, creative writing, and more. For example, Dr. Davina Kirkpatrick read aloud beautifully crafted prose that theorized about grief while presenting photographs of a haunting installation she created by tying pieces of her partner’s clothes along the coastline. In another example, Juliette Mead presented a film that reflected on what literature can teach us about the ethics of end-of-life care. In my ‘home’ disciplines of English literature and critical theory, I simply expect conference presentations wherein a research paper is read aloud; however, I am consistently impressed and inspired by the diversity of forms that research takes at such interdisciplinary conferences. This kind of diversity is crucial because it reflects how the arts and humanities offer not simply knowledge itself, but also unique methodologies and forms for such knowledge.

One of the best parts of any conference is who you meet in-between the presentations. Thus I want to pause for a moment to reflect on meeting Katharina Edtstadler, a PhD candidate at the University of Vienna. We had an exciting conversation about the state of medical humanities in Austria and Canada, and soon realized that our dissertations are fundamentally concerned with the same question: what can one know—if anything at all—about illness through literature? While Katharina is approaching this question through both English and German literature, critical narratology, and poetics of knowledge, I am drawing upon English literature, feminist theory, and phenomenology. This kind of wonderful cross-disciplinary and cross-continental connection could only happen at an international conference like the AMH’s; Katharaina’s research is written in German, and since I cannot read German, I would have never come across her work otherwise. This encounter has since led me to wonder: how much incredible research (like Katharina’s) am I missing out on because I can only read in English and French? What responsibility does the medical humanities (and especially its purportedly international journals and conferences) have in creating space for languages beyond English? What does it mean to host such a conference in Bulgaria without a single talk given in Bulgarian?

As the medical humanities increasingly strives to be transnational and transcultural (especially in an era of increasing interest in global health and cross-cultural medicine), I believe we—as English-speaking/writing medical humanities scholars— have a responsibility to move beyond linguistic borders. During the conference, Dr Jo Winning related the issue of language translation back to the medical humanities in an especially poignant tweet: “As I negotiate Cyrillic script @ med hums conf in Sofia, I am struck that the anxiety I feel is same as patients negotiating unfamiliar NHS systems or biomedical language, & clinicians managing the uncertainties of the non-textbook human body” (27 June 2018). Meanwhile Dr Ayesha Ahmed from St Georges University of London drew upon poetry from various Middle-Eastern languages for her closing keynote presentation, including Persian poets Forough Farrokhzad and Rabia Balkhi (who were especially notable to myself as a Persian speaker). As medical humanities scholars we must reflect critically upon how language may be limiting the impact, reach, and insight of our work—how defaulting to writing in English about English texts may risk reifying colonial power structures around who has access to ‘our’ knowledge, who can produce it, and who is represented by it.

While the conference could improve its diversity across linguistic, national, and cultural borders, I was especially impressed by the diversity of scholars at different stages of their careers—from undergraduate students to Professors. I strongly believe this kind of career-stage diversity is crucial to a successful conference for several reasons. Firstly, it allows those of us early in our careers to begin developing a community. Since so many of us come to the medical humanities from other disciplines (e.g. literature, history, medicine, etc.), we often feel isolated at our ‘home’ departments by virtue of our interdisciplinary interests. Conferences like the AMH’s remind me that I do, in fact, have many peers with similar interests. Secondly, bringing so many young scholars together makes it especially clear where the medical humanities are going. This conference (along with another health humanities conference I attended recently in Canada) have made it clear to me that the new generation of medical humanities scholars are especially invested in issues of justice and power (e.g. feminism, race, etc.) and often drawing upon critical theory to do so. Jessica Duckworth and Emma Romy-Jones’ (both candidates in the Medical Humanities Master’s course at Manchester University) presented a kind of ‘virtual exhibition’ on hysteria, tracing the history of the term forward to its current usage in sexist media headlines. Meanwhile Safi Alsebai, an undergraduate student in political theory, offered a compelling re-reading of Sophocles’ Antigone in order to consider the politics of anatomization and the anatomization of politics. Finally, having a diversity of scholars at different career stages importantly challenges entrenched hierarchies within academia. At the AMH conference, I not only learned from my ‘seniors’ but also my peers and had the opportunity to not simply be a learner but also a teacher. I believe such de-stabilizing of hierarchies is especially crucial in the medical humanities since so many of us are challenging parallel hierarchies between clinicians and patients, and medicine and the humanities.

As medical humanities scholars challenge who claims to ‘posses’ medical knowledge and what ‘counts’ as such knowledge, we must also consistently challenge who ‘possesses’ medical humanities knowledge and what ‘counts’ as such knowledge. How does career stage determine the ‘who’ and ‘what’? How does language? How does genre? How does culture? These are the crucial questions I am left asking from the AMH conference—questions that will always elude easy answers but are important to ask for precisely that reason.

Maryam is a Master’s candidate at the Centre for the Study of Theory and Criticism (Western University, Canada) with research interests in feminist theory, phenomenology, literature, and medicine. She is spending her summer as a visiting student researcher at Durham University’s Institute for Medical Humanities, generously supported by the Mitacs Globalink and the Social Sciences and Humanities Research Council of Canada.

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