Undoing disorder: an artistic engagement with the paradigm shift of functional neurological disorder

Abstract

A resurgence of neuroscientific research and clinical interest in functional neurological disorder (FND) has prompted a paradigm shift regarding this long-misunderstood condition. FND is characterised by motor and sensory symptoms with no clear structural cause. The paradigm shift provides neuroscientific grounds and clinical protocols for this diagnosis, partially in attempt to legitimize the condition amid ongoing disregard and stigmatization toward people living with FND. Informed by feminist science studies and critical disability theory, my dissertation takes up the implications of this paradigm shift. I draw on narrative inquiry to understand how the paradigm shift shapes how individuals come to understand and “do” FND and develop original arts-based methodologies to insist on ways of knowing and doing FND beyond biomedical frameworks. I conducted semi-structured interviews with 23 Canadians living with FND and facilitated a disability art research-creation process with 12 of these individuals. First, I present a methodological intervention into arts-based health research that calls for a more careful, rigorous engagement with art in our research practices. This intervention recognizes, like the paradigm shift, how our methodologies enact new possibilities for living and doing illness or disability, far beyond the bounds of our research process. Next, I discuss my interview findings. I argue that the paradigm shift provides a generative entry-point for meaning-making, yet participants creatively extended, appropriated, and reinvented its concepts to develop new ways of understanding FND based on their specific embodied experience and life history. Participants used these renewed understandings of FND to innovate embodied practices as a form of “treatment” amid virtually non-existent health services. Finally, I theorize the research-creation process through autobiographical affective vignettes that unsettle the pathologizing effects of labelling FND as a disorder. I put forward the concept of “disordered becoming” to reframe disorder as a generative resource in our creative process and a way of recognizing our entanglement in the broader world. Together, these findings illustrate the value of artful, disability-affirming engagements with biomedical thought and the power of art to create new ways of living well with disability.