If medicine is about stories (the patients’, doctors’, science’s, society’s), when and where do conflicts arise that turn the cure into something perceived as violence? Marta-Laura Cenedese and Clio Nicastro introduce their Violence, Care, Cure symposium (ICI Berlin Institute for Cultural Inquiry, 3-4 February).
In The Illness Narratives: Suffering, Healing, and the Human Condition (1988), Arthur Kleinman foregrounds the distinction between ‘illness’ and ‘disease’ by shifting the focus from the official descriptions and definitions of syndromes to the individual’s experiences and articulations of them. The distinction that Kleinman draws between the scientific/medical classification of symptoms and the individual experience of illness is salient for starting to unlock the tensions within the medical encounter. The doctor and the patient may tell two very different stories of illness, even contradictory ones.
The discipline of narrative medicine has tried to redress this communication gap between patients and physicians by proposing a pedagogy and practice based on the confluence of narrative studies and clinical practices, under the conviction that ‘narrative competence’ has the power to improve patient-doctor communication and, ultimately, healthcare provision. The mismatch that often arises between the medical gaze (Foucault 1963) and the individual’s gaze in the face of the same event can be productively addressed if we pay attention to their visual and narrative representation.
Images, medical science, and the body in history
Sander L. Gilman (1995) distinguishes between ‘illness’ as the subjective experience of a condition that affects (to a greater or lesser extent) the physical and mental health of an individual, and ‘disease’ as a medical category that emerges within a given historical and cultural context and offers a model for understanding and treating a certain constellation of symptoms. The latter, therefore, corresponds to a social construction and not to a mere label, thus suggesting an approach that seeks to take distance from both dogmatic scientism and relativism. The perception of a symptom is not necessarily ‘truer’ than its scientific description because symptoms are, most often, an expression of the psychosomatic relationship between the physical and the psychic. Aware of the inevitable interaction between the two dimensions of illness as an experience (‘illness’) and as a category (‘disease’), Gilman is interested in their distinction in particular when he investigates the relationship between images and medical science, which, in his opinion, the history of medicine has long underestimated and not fully understood in all its complexity. For Gilman, the presence of such images throughout history suggests a tension between the real and the imagined, and therefore tells us about the social construction of diseases, especially the chronic and contagious ones (1988).
The ways diseases have been portrayed with words and images have also affected the (self)perception of the body through history. By delving into the records of an eighteen-century German physician who carefully transcribed the way his female patients described their symptoms, for instance, Barbara Duden (1991) aims to understand how women from another time perceived their bodies and talked about their different bodily manifestations. As a ‘historian of the body’, Duden wishes to overcome the opposition between the body as a series of natural, biological, stable and unchanging phenomena, and the socio-historical dimensions of ever-changing life.
Medical humanities’ engagement with inderdisciplinarity is still wanting
Today, the idea that there is a mutual and constantly evolving influence, rather than a simple illustrative relationship, between medical science and visual representations of the human body – of its anatomy and pathologies – is fundamental for the history of medicine, for philosophy and for cultural studies. As a highly interdisciplinary field, the medical humanities has sought to bring together these different disciplinary approaches, however, its engagement with the limits and possibilities of these entanglements is still wanting. A ‘critical’ lens upon the discipline (as is the case for the critical medical humanities) is thus crucial to account for a field that is “based in mobility, fluidity, movement: a creative boundary-crossing in and through which new possibilities can emerge” (Whitehead and Woods 2016: 8).
The original importance (as in the first wave of medical humanities) attributed to narrative as a linguistic tool to explore and give coherence to an experience of illness is now being expanded by growing scholarship that includes not only a variety of non/narrative and non/linguistic forms that reflect on and convey the embodied experience of illness (see e.g. Aho and Aho 2008, Bolaki 2016), but also different methods, geographies, and territories of knowledge.
Perceptions of violence within medical settings and practices
The Violence, Care, Cure two-day symposium seeks to address the ambiguities of and tensions among perceptions at the cusp of internal (subjective) and external (social, cultural, political) ‘gazes’. What the individual experiences, at either end of the consultation room, is a complex interlacing of personal vicissitudes, global structures, and community practices: a prismatic network in which ‘care’ and ‘violence’ are reflected/refracted in a variety of oftentimes overlapping and divergent interpretative modes.
A black and white opposition between internal/external, care/neglect, cure/violence may seem reductionist, however, engagement with these seemingly contrasting attitudes reveals the complex entanglements among possible scientific dogmatic drifts, social inequalities within healthcare systems, and idiosyncratic projections of individual and collective fears that often lead to stigmatising certain collectivities for the origin or transmission of contagious disease (Gilman 2021). If medicine is about stories (the patients’, doctors’, science’s, society’s), when and where do conflicts/misunderstandings arise that turn the cure into something perceived as violence? Literary and visual narratives contribute to sharing these stories and can offer a vantage point to address larger cultural scripts. How do these narratives represent perceptions of violence within medical settings and practices?
Violence, Care, Cure programme
The conference includes a workshop, a roundtable (3 February 16CET), and a keynote lecture (3 february 19CET).
During the workshop scholars from different disciplinary backgrounds will engage with questions about biopolitics, the encounters in the clinical space, the thorny issue of healing, the filmic approach to the medical body, non-binary and trans experiences in the medical setting, and how both art and curatorial practice interlace with healthcare.
The roundtable is envisaged as a collective moment to reflect on the main themes of the conference, where each panelists’ expertise provides a compelling perspective to explore the entanglements of care, cure, and violence, as well as to propel the debate about their meanings, forms and practices.
Mita Banerjee will talk about the idea of medical practice as social practice, related to the water scandal of Flint, Michigan, and the black maternal health crisis in the US. In keeping with the idea of the twin pandemics that is currently being debated, this would also imply that not only is racism, too, a pandemic, but having to live in a racist society and a society that is unequal itself constitutes a health risk for those who have been relegated to the margins of society. So, in this sense, social violence also exacerbates pre-existing conditions.
Heike Bartel will shed light on the neglected problem of eating disorders in men through a comparative and transnational analysis of autobiographical accounts written by men who suffer from these disorders. Her contribution, centered around her recent book Men Writing Eating Disorders (2020) will enable a conversation on the underrepresented voices of men, boys and the LGBTQ+ population.
Daniele Lorenzini will address the epistemic dimension of the doctor-patient encounter happening in contexts that are marked by racism and other forms of bias and prejudice. His reflections will build on the psychiatric writings of Frantz Fanon, written in Algeria, on the Foucauldian understanding of the relationship between power and knowledge, and on the notion of epistemic injustice
Elisabeth Punzi will talk about mental health, specifically about the tensions between epistemic violence, the coercive violence that is part of psychiatry, and the sublime violence of naming and explaining that has made people in the western part of the world understand ourselves as psychiatrized selves. She will also consider how practitioners, patients and lay people become complicit in this process.
Angela Woods will reflect on the entanglements of care and violence from the vantage point of a medical humanities scholar doing collaborative research with non-academic partners, such as mental health services. The premise of her intervention is the ‘accusation’, from such partners, of a lack of care on the part of researchers, which is perceived as a form of violence. This engenders a reflection on the pragmatics of how work is conducted and the methodologies at play in order to create co-productive spaces of research.
In the keynote lecture, Sander L. Gilman considers the appropriation by anti-vaxxers of pro-choice rhetoric and its transformation into claims about ‘bodily violence’ (‘My body, my choice’), which heralded a shift in the debates about COVID-19 and vaccination. For Gilman central to this is the link between choice and risk. The talk will examine the history of such concepts in times of plague and the role that ‘freedom’ or ‘liberty’ plays in these debates and their precursors. The lecture will compare these debates about care and cure (or at least prevention) with the late 20th-century debates about vaccination, HPV, and risk.
The symposium is co-funded by the ICI Berlin, the VolkswagenStiftung, the Centre Marc Bloch, and the Nordic Summer University.
Header image: © Claudia Peppel, collage 2013 (detail)
Aho, James and Kevin Aho. 2008. Body Matters: A Phenomenology of Sickness, Disease, and Illness. Lanham, MD: Lexington
Bartel, Heike. 2020. Men Writing Eating Disorders: Autobiographical Writing and Illness Experience in English and German Narratives. Emerald
Bolaki, Stella. 2016. Illness as Many Narratives: Arts, Medicine and Culture. Edinburgh: Edinburgh University Press
Duden, Barbara. 1991. The Woman Beneath the Skin. Cambridge, MA: Harvard University Press
Foucault, Michel. 1963. Naissance de la clinique: une archéologie du regard médical. Paris: PUF
Gilman, Sander L. 1988. Disease and Representation: Images of Illness from Madness to AIDS. Ithaca and London: Cornell University Press
—. 1995. Picturing Health and Illness: Images of Identity and Difference. Baltimore: Johns Hopkins University Press
—. 2021. “Placing the Blame for Covid-19 in and on Ultra-Orthodox Communities.” Modern Judaism – A Journal of Jewish Ideas and Experience, 41: 1, 1–30
Kleinman, Arthur. 1988. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic
Whitehead, Ann and Angela Woods (eds.). 2016. The Edinburgh Companion to the Critical Medical Humanities. Edinburgh: Edinburgh University Press.
Zhou Xun and Sander L. Gilman. 2021. ‘I Know Who Caused COVID-19’ Pandemics and Xenophobia. Chicago: Chicago University Press
About the authors
Marta-Laura Cenedese is a postdoctoral researcher in Comparative Literature at the University of Turku and associate researcher at the Centre Marc Bloch in Berlin. Marta is an interdisciplinary scholar whose research focuses on twentieth- and twenty-first-century postcolonial literatures, cultural memory studies, multimodal storytelling practices, critical medical humanities, death studies, and writing methodologies. She co-edited the special issue ‘Connective Histories of Death’ (Thanatos 9:2, 2020) and is the author of the monograph Irène Némirovsky’s Russian Influences: Tolstoy, Dostoevsky and Chekhov (Palgrave Macmillan, 2021). She is the co-convenor of the SELMA Medical Humanities Seminar Series and coordinator of the study circle ‘Narrative and Violence’ (Nordic Summer University)
Clio Nicastro is currently a VolkswagenStiftung Fellow at ICI Berlin and teaches at Bard College Berlin. She studied philosophy at the University of Palermo (Italy), where she completed her PhD in aesthetics and theory of art. From 2016 to 2018 she was a postdoctoral fellow at the ICI Berlin where she founded the series of conferences, lectures, and screenings “In Front of the Factory” with Saima Akhtar and Rosa Barotsi. From 2018 she has been co-curating together with Hannah Proctor and Nadine Hartmann the event series Spellbound (Diffrakt, Berlin). She is the author of La Dialettica del Denkraum in Aby Warburg (Palermo University Press, 2022) as well as the co-editor with Cristina Baldacci and Arianna Sforzini of the volume Over and Over and Over again. Reenactment Strategies in Contemporary Arts and Theory (ICI Berlin Press, 2022).