Care as content and practice: responses to ‘Curating Health’

KL: We approached this conference from different disciplinary perspectives, although we both have a particular interest in health and self-representation: I’m completing a PhD on life-writing and mental illness based in a literature department, whereas your PhD (on self-portraits by artists with HIV/AIDS) was carried out in a department of art history and visual culture. And while I’ve been working on graphic narratives for the final chapter of my thesis, you came to this conference relatively new to the field of graphic medicine, am I right?

FJ: Yes, and curious to learn more about it, but also interested to see what other forms of visual culture might be discussed under the rubric of ‘representations of illness’ as set out in the second-half of the conference’s subtitle. Graphic medicine is a pretty well-established area of scholarship (at least in the UK and US, as well as Spain), although I was surprised to hear that there are relatively few people working on graphic medicine in the Nordic countries); but these other areas – which might include art practice, exhibition curation, photography, film and popular media – have so far remained relatively under-examined by medical humanities researchers.

KL: Although much of the content of the conference was dedicated to graphic medicine, there were a number of papers touching on these other areas: Tony Pickering spoke about his graphic narrative Diabetes Year One; Nina Eide spoke about her experiences as an artist working on a multidisciplinary project to curate an exhibition on anxiety; Elena Carter from the Wellcome Collection presented on the ethics of archival practices; Päivi Miettunen spoke about figurative sculpture; your talk, of course, focused on photography and conceptual art; Rosanna Stevens analysed stock photos in popular menstrual discourse; and Isa Dussauge’s presentation was about creating an animated cultural history of the foetus.

FJ: I missed so many of those papers! I was also really frustrated not to be able to attend the talk by artist Katy Connor (presenting with Maria Fannin, University of Bristol, and Julie Kent, UWE) on her arts-science collaboration at the Toye Lab (University of Bristol), where researchers are exploring the possibilities of synthetically manufacturing red blood cells for transfusion purposes. What were you hoping to gain from the conference?

KL: I was hoping to find examples of what a literary studies analysis of graphic medical narratives could look like. In my own research, I’d been struggling to find examples of criticism that really grapples with these texts (other than Hilary Chute, but she works on trauma rather than illness).[1] Much of the existing scholarship in the field is still relatively evangelical – praising graphic medicine’s benefits, particularly its uses in medical education, but not performing much of an analysis of the texts at hand. I was encouraged to hear Ian Williams (of Graphic Medicine) say in his keynote that it’s time for graphic medicine to move on from these evangelical beginnings, and that this has been emphasised in the recent CFP for the 2019 Graphic Medicine conference. Hearing Lisa Diedrich’s keynote on “doing graphic analysis” was so helpful because it provided me with examples of ways into opening up and analysing graphic texts.

FJ: Yes, I really enjoyed Lisa’s presentation. It made me wonder about the histories of visual self-representations of illness. Tamar Tembeck has written about autopathographic photography carried out by people like Jo Spence in the early 1990s (see Auto/Pathographies) and the recent phenomena of ‘hospital selfies’[2] but I’m interested in knowing what examples might precede this. I often think of the AIDS crisis as a point of emergence for a critical mass of autopathographic imagery (as it seems to be for the emergence of autopathography and auto-thanatography as distinct literary genres), but can any pre-histories be identified that run earlier than this? When I raised this question in the Q&A, Lisa Diedrich pointed out that there were already a number of graphic representations of illness circulating as part of the underground comix movement in the 1960s and 1970s; she also mentioned Justin Green’s comic Binky Brown Meets the Holy Virgin Mary (1972), which is one of the first examples of graphic medicine. Aside from graphic narratives though, I would be interested to know more about other visual (self)-representations of illness pre-1980s (other than well-known examples such as Goya, Munch, Van Gogh, or Kahlo).

KL: I’m intrigued that such histories don’t already exist. In literary studies, Ann Jurecic, in Illness as Narrative,[3] traces the notable absence of illness narratives during the influenza outbreak post WW1 to their emergence during the AIDS crisis. Binky Brown Meets the Holy Virgin Mary is also frequently cited as one of the first graphic memoirs, so it’s interesting how the two – autobiography and self-representation of illness – co-emerge. Before coming to the conference I had, somewhat naively, assumed that there were established ways of engaging with these texts from a visual culture background that I just hadn’t managed to find in my own reading. So I was surprised to learn from you that actually literary schools have been much quicker on the uptake.

FJ: I recently had an interesting conversation on Twitter about this! Whilst a number of people agreed with my speculation (admittedly based on nothing more scientific than personal experience) that graphic medicine is mainly taught and researched in departments of literature rather than art or visual culture, Ernesto Priego, editor in chief and co-founder of The Comics Grid: Journal of Comics Scholarship pointed out that many comics scholars are in fact based in art schools, citing the recently launched Comics Research Hub at London College of Communication (UAL). Other respondents from a variety of disciplines (geography, biomedical communications), argued that graphic medicine is at its best as an example of inter- or trans-disciplinary research. Interestingly enough, although some of the most exciting work at this conference was interdisciplinary – like Katy Connor’s arts-science collaboration at the University of Bristol, mentioned above – the majority of papers seemed to be presenting work generated from within a single discipline. This seems odd, given that the capacity for interdisciplinarity research is one of the greatest strengths of the medical humanities.

KL: I wonder if this is as much an issue of logistics as anything else. Certainly much of the most stimulating work in the medical humanities, including in graphic medicine, is inter- and trans- disciplinary, but it’s also the most time-consuming and painstaking to bring about. Making connections and fostering relationships across departments, between institutions, and with external organizations produces incredible, engaged research, but also requires funding, a lot of guidance, and, speaking as a PhD student soon to start applying for post-docs, a degree of stability in your employment prospects! In contrast, approaching new material from my single discipline, albeit with awareness of other methods of engagement, is a realistic goal. But, obviously I still approach opportunities like this conference with the hope of making connections with people that could lead to something in the future!

FJ: I was struck by the use of the word ‘curating’ in the title, which comes from the Latin cura, meaning care, and thus has associations with caring for a person, as well as with caring for an archive or with exhibition-making. How do we attend to different people’s stories, as evidenced through their art-making, with care, particularly when that person is no longer around to tell us what they would want? That question has been in my mind throughout the process of writing my PhD and monograph (on self-portraits by HIV positive artists); it was also at the forefront of Elena Carter’s presentation on the archive of the late Audrey Amiss, which Carter has recently been cataloguing for the Wellcome Collection. Amiss (b. 1933) was a trained artist, diagnosed as a paranoid schizophrenic at an early age, and spent her life in and out of institutions, working as a secretary during periods of more stable health. The most intriguing objects in her archive are a multi-volume series of scrapbooks complied by Amiss from the 1980s to 2013, which contain pasted-in food packaging, annotated with her views on the food and other matters. Carter was clearly concerned that her act of curation (as an archivist), should also remain one of care in an ethical sense: she wanted to do justice to Amiss and her work.

KL: I’d never thought about the root of the word curation, that’s fascinating! One of the first pieces of criticism that got me interested in graphic narrative was an article by Amelia DeFalco on life writing, comics, and the ethics of care.[4] It occurs to me that care can be the content of our research, but must also be embedded in our practice.

My presentation was about intersections of anorexia and trauma, and my slides included images of sexual assault. I decided to give a content note at the start of my presentation because normally when you read comics, you control the pace and space of consumption; this is part of the form’s fundamental difference from film because, with comics, you can flick through and chose how much time you spend on different images. However, when I present these images in a PowerPoint, I not only decontextualize them, but also become the controller of how long I spend on them and what they are juxtaposed with. Consequently I decided to have black slides in-between some of the images so that I was only ever showing the image as I actively analysed it – it never became a passive background for my talk. I think we have to show an awareness of the sensitivity of our topics, and that they might prompt things for people in the room. It isn’t about mollycoddling, but creating a space in which we can actively engage with the uncomfortableness of the visual. And, as you say, doing justice to someone else’s history and their work.

FJ: I love that phrase about the ‘uncomfortableness of the visual’. I wonder if there is a certain messiness about certain forms of visual culture that can be quite anxiety-provoking for the researcher, but which can also be extremely productive?

KL: Definitely, and I think that productivity relies on the crafting of a certain kind of space. I’m thinking about the atmosphere of care that surrounded the whole conference. I was struck by how frequently people were bringing their own experiences to the table, not as mere anecdotal material, but as something that adds to our critical discussion. This ranged from personal histories of depression, menstruation, abortion, diabetes, cancer, and fatness.

FJ: Yes, one stand-out paper for me was Kimiko Tobimatsu’s paper “Straight Cancer in A Queer Body”, which looked at exerts from her upcoming graphic memoir, Kimiko Does Cancer, illustrated by Keet Geniza. Tobimatsu offered a powerful critique of the white, straight, gendered biases of the medical world, as evidenced by her doctor’s assumption about the uniform desirability of breast reconstruction surgery, based on a set of normative beliefs about what women might want from their breasts. Tobimatsu argued that mainstream cancer narratives can risk flattening the diversity of lived experience, and drew attention to how the work of Ericka Hart offers an alternative cancer narrative by a non-binary person of colour.

KL: I was gutted not to hear that talk – the curse of parallel sessions. I was thrilled by how queer so many of our conversations were. Ryan Prout talked about desirability and fatness in his paper on obesity politics in Spanish graphic novels and film, and your discussion of Mark Morrisroe’s photographic self-portraits and the ways he played with pin-up style poses from his hospital bed has really stayed with me. And of course, Lisa’s keynote discussed the ways in which comics is a queer form.

Yet while the papers celebrated a diversity of queer subjectivities, I noticed, as with so many academic spaces, how white / white-passing the attendees were, and the whiteness of our talks. This has prompted me to go away and actively research comics by people of colour. The Cartoonists of Color Database is a great resource, and I love Lawrence Lindell’s ‘Couldn’t Afford Therapy, So I Made This.’

FJ: Yes, the original CFP stated that the conference organisers were particularly interested in papers that explored “the power differentials of gender and sexuality, race and ethnicity, crip, queer and ageing” – gender and sexuality were certainly addressed across a range of presentations, but race and ethnicity much less so. Other than attracting a more diverse set of delegates and presentations, is there anything about the conference that you would like to have seen done differently?

KL: I’d be intrigued to see what would happen if we were to have a comics-making workshop at a conference like this. I attended one in Leeds a couple of months ago run by Una, author of Becoming Unbecoming,[5] and I really struggled, even just making a zine. We get so used to analysing these narratives, but trying to create them, even on a small scale, changes how we approach the form. I know that a lot of scholars who teach modules with graphic narratives have compulsory creative components on them.

FJ: I’d love to try something like that! I think that overall, the conference left me with more questions than answers (maybe this is the sign of a successful academic event!) The issue of media specificity was always at the back of my mind but was not explicitly addressed in any of the papers or discussions. Do different media do different work in the telling of stories of health and sickness? How does a comic operate that is different from a photograph, or a film from an exhibition? Also, a number of papers (my own included) seemed to be moving towards the idea that illness necessitates formal innovation and new forms of creative expression. This is a seductive theory, but I am wary; I would argue that formal innovation cannot always be reduced to a response to sickness, but can equally de understood as a sign that the work is situating itself in dialogue with other developments in art-making or creative practice. Essentially, I am suspicious of scholarship that reduces illness narratives to ‘just’ being about illness:  poor health is not simply a totalising, individual experience, but is also a social, cultural, economic, and indeed, creative and artistic phenomenon.

Curating Health: Graphic Medicine and Visual Representations of Illness was organised by the Nordic Network for Gender, Body and Health in collaboration with the Division for Gender Studies, Stockholm University, and took place in Stockholm, 3-4 December 2018. We would like to thank the conference convenors for creating a stimulating and thought-provoking event.

Over the coming weeks, The Polyphony will publish a selection of articles based on presentations given at Curating Health. Watch out for texts by: Lisa Diedrich on her keynote “Graphic analysis: On drawing illness and care as queer in graphic narratives”; Liz Brewster on using graphic medicine for teaching medical students; Katy Connor, Maria Fannin and Julie Kent on their arts-science collaboration Blood Cultures; Elena Carter and Anthony Day of the Wellcome Trust on working with Audrey Amiss’ archive; Kimiko Tobimatsu on her graphic novel Kimiko Does Cancer; Tony Pickering on drawing his father’s dementia; and Nina Eide and Marte Huke on their collaborative exhibition U;REDD (FEARLESS) – exhibiting anxiety.

[1] Hillary L. Chute, Graphic Women: Life Narrative and Contemporary Comics (New York: Columbia University Press, 2010), and Disaster Drawn: Visual Witness, Comics, and Documentary Form (Cambridge, Mass.: Harvard University Press, 2016).

[2] Tamar Tembeck, ed., Auto/Pathographies (Alma: Sagamie édition d’art, 2014); Tamar Tembeck, ‘Selfies of Ill Health: Online Autopathographic Photography and the Dramaturgy of the Everyday’, Social Media + Society 2, no. 1 (2016), https://doi.org/DOI: 10.1177/2056305116641343.

[3] Ann Jurecic, Illness as Narrative (Pittsburgh, PA: University of Pittsburg Press, 2012).

[4] Amelia DeFalco, ‘Graphic Somatography: Life Writing, Comics, and the Ethics of Care’, Journal of Medical Humanities 37, no. 3 (2016): 223–40.

[5] Una, Becoming Unbecoming (Myriad, 2015).