The embodied experience of episodic disability among women with multiple sclerosis

Abstract

This paper explores the embodied experience of three women living with an episodic or fluctuating disability within the context of relapsing–remitting multiple sclerosis. I argue that this shifting embodiment is subjectively, performatively, and interpretively experienced in discrediting ways across social, organizational, and local contexts in women's lives. Drawing on findings from my doctoral thesis, three interpretive themes inform the analysis: not looking disabled, more than meets the eye, and institutional bafflement. Respectively, these themes pertain to a woman's physical appearance, cultural assumptions about disabled embodiment, and the contestation of social, organizational, and local institutional practices shaping women's lives. These themes hold implications for an ‘embodied politics' in rethinking the manner in which episodic disability is experientially, conceptually, and socio-politically recognized as a legitimate tier of the experience of disability.

Keywords:

• episodic disability
• embodiment
• women
• multiple sclerosis
• social relationships
• employment practices
• institutional legitimacy
• embodied politics