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Short abstract:

This presentation will recount one researcher’s experiment in creative and collaborative research with people living with chronic energy-limiting conditions: the origins of the project, its logistics, some outcomes, and the potential for further activist work it has opened up.

Long abstract:

Among people living with chronic, energy-limiting, post-infectious diseases, definitions of health and illness, of care and recovery fracture and come undone, become vulnerable to contestation, negotiation, change. It is at these disjunctures, in these ruptures that new meanings can emerge. This presentation recounts my attempts to forge new meanings together with people living with myalgic encephalomyelitis (ME) and Long Covid. It is based on a creative and collaborative project that emerged from my work with the ME community, as well as an interest in activist research that seeks to make meaningful change, to participate in transformative action, alongside others. In this part of my research project, I asked people living with ME and Long Covid to submit their responses to the prompt: “What is living with chronic illness like for you?” Submissions could – and did – take a variety of forms, and included a knitted item, photographs, an embroidery, poems, collages, an animation, and more. We then met in groups of three or four to talk about the responses submitted by each participant of that group. I came to think of those meetings as affective encounters in which, yes, participants shared their experiences and interpreted each other’s submissions, but also delighted in each other’s company and understanding, forged new relationships, found commonalities across distance and time. Ultimately, this experiment in collaboration has surfaced a buoyant, defiant creativity, a person-centred way to research with people living with energy-limiting illness, and hopefully a set of powerful activist tools.