Disturbing stories: a pathway to performative research on eating disorders

Too often, cultural representations of the stories of those who experience eating disorders situate the understanding of the disorder, as well as efforts to address it, exclusively within the individual and medical spheres. While a diagnosis helps describe the origin of the condition and localize or objectivize its cause, it also imposes a label around which narratives take shape. The words chosen to narrate an experience of distress serve as powerful epistemic tools. When a person is "taken into care" by the services, they become a "patient," often subject to plans and evaluations that risk reducing the discursive universe through which their experiences are expressed. Drawing on the individual stories of those who have experienced eating disorders—investigated using methods such as autoethnography and duoethnography—cooperative and performative research has been proposed as a pathway for the emergence of narratives and bodies with political significance. The sharing of personal stories within relational and collective learning frameworks, coupled with the use of performance art as a political act of dissent, has allowed the grief of those affected by eating disorders to gain recognition. This approach has also helped maintain a transformative tension within the narratives.