Paper short abstract:

Drawing on photographic and narrative methods, this paper explores how people with multiple long-term health conditions morally navigate narrative experimentations. I will argue how multivocal analysis and participatory methods can highlight the transformative potential of narration.

Paper long abstract:

For people living with complex, long-term illness, telling a life story is a delicate endeavour: many chronic illnesses are rooted in traumatic pasts, then blamed on people through “lifestyle”-narratives, and finally framed as incurable, thus diminishing the possibility of imagining a hopeful future. Through a Bakhtinian analysis of multivocality in people’s biographical narratives, I am exploring multiple ways in which narrative is employed to learn how to “live well” with chronic illness. In their stories, people experiment with constructing ‘worthy’ identities by trying out different causal structures in which to frame their illness, and by imagining potential, sometimes hopeful, sometimes less so, future imaginaries. These experimentations form part of people’s efforts to come to terms with long-term illness, and are shaped by the socio-material resources and past experiences that people can draw from. These imaginaries are teased out further through participants’ participation in a PhotoVoice-inspired photography project in which they construct and share creative images with each other that represent, but also further develop imaginative narratives and collectively shape new, potentially transformative imaginaries. The images produced by the research participants are not just another form of “data gathering”, but also function as a collaborative research output. Photography and film as accessible research tools make it possible for people to participate in creating representations. For an exploration of “good care”, this is especially important: arguably, a reversal of the medical gaze takes place when participants take up a camera and document their experiences with illness and care.