Donna McCormack and Ingrid Young discuss their photography project, Capturing Chronic Illness

Capturing Chronic Illness emerged from the current COVID-19 pandemic. One of us was struggling to recover from surgery while also shielding, and we were discussing our previous collaborations on HIV and transplantation and what might be possible in terms of doing such public-oriented events where the aim is discussion. The conversations quickly shifted to the fact that we’re both passionate about photography: one of us takes photographs using old cameras and film, and both of us regularly attend photography exhibitions (and sometimes even together). Photography, we thought, was a medium that captured something unique about illness, or at least we were convinced that it offered something different from the written word. We were thinking of photographers, such as Zanele Muholi, Claude Cahun, Tsoku Maela, Francesca Woodman, Justin J Wee, and Jo Spence, and how their work conveys trauma, illness and non-normative embodiment in ways that capture experiences that exceed dominant narratives and that do not always focus on the traditional portraiture form (and indeed challenge this in many ways).

We had already been thinking about how HIV and organ transplantation could be described –   and are often experienced – as chronic illnesses. How have these viruses, illnesses, and biotechnological interventions shifted from life-destroying or lifesaving, in the acute sense, to life-long health conditions? Indeed, through these reflections and discussions, we have been prompted to consider: what changes in how we think, experience and conceptualise something like organ transplantation when it is understood not as a life-saving therapy but as a chronic illness? We also recognise that narratives and experiences of HIV and transplantation reveal how health and illness may be denied, silenced or confined to specific narrative and health expectations. Through our ongoing discussions and collaborative explorations, we want to ask: what happens to silenced experiences; why do certain narratives dominate the experience of illness; why is it that some narratives cannot be heard; what challenges do such narratives and experiences pose to health care; and, finally, how might we listen differently to such unspoken or unheard narratives?

What it means to listen – to bear witness – to illness as a chronic, ongoing experience became an important foundation to our work. Both of us have been asking such questions in our individual work (Donna in her Transplant Imaginaries project, and Ingrid in her work on Sex, Drugs and Activism), and therefore what representation might mean for those of us who are not heard, cannot be heard in a clinical context and do not get access to adequate treatment as a result became central to us starting this new project on Capturing Chronic Illness. What does the visual offer when words fail, or how might the turn to the visual offer a space to articulate silenced or unspoken experiences? How does form – the photograph – challenge us to think differently about presenting illness to publics, and does it foreclose certain possibilities? How is the history of photography, which foregrounds freakish (e.g. Rosemarie Garland-Thomson), exotic, queer bodies, a medium that is repetitive of normative colonial framings, and is it possible to resist such epistemological and ontological violences (e.g. Saidiya Hartman)? How do we also recognise such violent limits and engage with its potential for life otherwise (e.g. Judith Butler, Michelle Murphy)?

To explore these ideas, we wanted to engage with a wide range of possibilities for visualising chronic illness through photography. We put out a call for submissions for a digital photography exhibition, where we made explicit that we were open to any experience or definition of chronic illness, including undiagnosed illnesses, as well as that we were particularly interested in queer contributions and photographs that interrogate or destabilise normative structures of power (be this in relation to race, gender, ability or photography itself). We received 35 contributions from across the globe that explored chronic conditions including transplants, HIV, ME/CFS, fibromyalgia, diabetes, asthma, endometriosis, auto-immune diseases, lung disease, mental health, scoliosis, chronic pain and cancer. The photographs varied greatly: some were portraits of faces staring at the camera, whole bodies turned away from the camera, and others out of focus and unable or refusing to look into the lens; some were funny, showing collectives and/or focusing on isolated body parts; there was a wide range of engagement with what might be called medical equipment, particularly showing the complex relationships between bodyminds (Schalk 2018) and systems of health care; and landscape photographs engaging with bodies in space and spaces as integral to and constitutive of bodily health and illness.

This exhibition ran as part of the UK Being Human Festival in November 2020. In addition to the exhibition, we organised a panel discussion to explore the range of images submitted and to reflect on if and how photography bears witness to silenced narratives and chronic conditions which are not always apparent. We were joined in the discussion by Marc Thompson (the LoveTank co-founder and HIV and social justice activist) and Dr Chisomo Kalinga (medical humanities scholar specialising in sexualities, HIV and decolonisation, University of Edinburgh). Bringing together diverse disciplinary perspectives and positionalities, we wanted to engage in discussion with panel members who had worked or engaged in the arts, had personal experience of illness, and had links to photography. Panel members reflected on their own experience with photography and illness followed by discussions of a selection of photographs from the exhibition. Issues relating to the colonial history of photography, how easily illness can be defined through whiteness, the possibilities of queer intimacies, the role of portraiture in illness experiences, and experimental forms of photography ran through the lively panel discussions. Participants also reflected on if and how we might create ‘safe’ spaces within which to explore these issues and what sharing photographs of oneself – or of illness – might mean. Indeed, the issue of safe space emerged as a key theme where listening to others became a way of being heard and therefore having one’s experiences recognised.

We continue to experiment with forms other than writing, exploring how these relate to our scholarly work, and also how the writing form may be challenged by a shift to the visual. We are interested in methods and want to explore this further. To this end, we are organising a second Capturing Chronic Illness event to continue these explorations as part of the Nordic Network Gender, Body, Health seminar series. This event, which will take place on 10^th June (12pm GMT/1pm CET/2pm EET), extends our collaboration further into the field of dance, working with practitioners on what it means to articulate or express illness through the body. This panel includes Claricia Parinussa and Dr Chisomo Kalinga, as well as the two authors of this blog post. Where this leads us is as yet unknown, but there are many stories to be heard in the photographs we received and we would like to be able to continue listening to and perhaps even finding ways of speaking with, to and about them. [Register for Capturing Chronic Illness: Panel Discussion here]

We are immensely grateful to all of the contributors who made this exhibition possible. Their work moves us in many ways, personal and professional (revealing the uncertainty of this boundary), and prompts us to continue examining how and why illness experiences are silenced and how we may bear witness to illness that does not repeat the violence to which many have been subject and do not repeat photography’s violent histories. We walk this line, engaging with it, not ignoring it, and still are not sure where it might take us as carers, people living with chronic illnesses, photographers, audience members and academics…

Donna McCormack is an AHRC Leadership Fellow on the project Transplant Imaginaries and a senior lecturer in English Literature at the University of Surrey. @transplanttalks

Ingrid Young is a Chancellor’s Fellow at the Centre for Biomedicine, Self and Society at the University of Edinburgh with an interest in gender, biotechnologies, sexual and reproductive health, and inequalities. @ingridkyoung

References

Butler, Judith. 2004. Precarious Life: The Powers of Mourning and Violence. London and New York: Verso.

Garland-Thomson, Rosemarie. Ed. 1996. Freakery: Cultural Spectacle of the Extraordinary Body. New York: New York University Press.

Hartman, Saidiya. 2019. Wayward Lives: Beautiful Experiments. London: Serpent’s Tail.

Murphy, Michelle. 2018. ‘Against Population, Towards Alterlife.’ In: Clarke, Adele E. & Haraway, Donna, eds. Making Kin Not Population. Chicago: Prickly Paradigm Press: 101–124.

Schalk, Sami. 2018. Bodyminds Reimagined: (Dis)Ability, Race, and Gender in Black Women’s Speculative Fiction. Durham: Duke University Press.