Performing Illness: A Dialogue About an Invisibly Disabled Dancing Body.

Abstract

Disability is defined by the World Health Organization as resulting “from the interaction between individuals with a health condition such as cerebral palsy, down syndrome and depression as well as personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support” (WHO, 2021). Yet disability scholar Simi Linton notes: The liberal arts, particularly the humanities, have barely noticed disability beyond the models they accept uncritically, handed down from the sciences and medicine. The tools for inquiry in the humanities have, until recently, rarely been applied to understanding disability as a phenomenon (Linton, 1998, pp. 147–148). Global disability communities have famously located disability in the environment. This is recognised as the social model of disability. Social modelling of disability rooted in British activism (Oliver, 1990) diverges from medical modeling—wherein “disability” originates from the individual—by resituating “disability” in the environment. This opinion paper builds from recent efforts in disability studies to define disability experience as intersubjective (Donaldson and Prendergast, 2011; Titchkosky, 2011; Kafer, 2013; Price, 2015) to suggest a move toward an interpretation of disability as an intersubjective ecological phenomenon. To invite this reflection, we discuss the case of Pini's experience of illness and hidden disability related to her oncological treatments for Hodgkin Lymphoma, and the development of her artistic project INFINITO, a longitudinal short dance film series that explores the relationship to cancer and its transformational aspects from a phenomenological and auto-ethnographic perspective (Pini and Pini, 2019) (Figure 1). Open in a separate window Figure 1 Snapshot from Pini and Pini video article “Resisting the ‘Patient' Body: A Phenomenological Account” (Pini and Pini, 2019).