The politics of disability identity in online endometriosis communities

• In Event: The Political and Social Dimensions of Ableism and Its Impact on Everyday Life

Abstract

Endometriosis is a chronic reproductive illness affecting an estimated 1 in 10 people assigned female at birth (Alderman, Yoder, and Taylor 2017), whose definition is contested but frequently characterized as occurring when tissue similar to the uterine lining grows outside the uterus (Seear 2016). Its symptoms are wide-ranging and often disruptive to daily live: chronic pelvic pain, dysmenorrhea, infertility, and bowel and urinary complications are among its most common manifestations (Becker et al. 2021). The language used to describe these effects across the biomedical, social science, and self-help literatures often analogizes endometriosis with disability; words such as crippling, debilitating, and incapacitating appear with regularity, suggesting a tacit recognition that endometriosis impairs functioning in ways that parallel conventional understandings of disability (Jones 2016).

Yet despite this rhetorical proximity to disability, endometriosis and other chronic reproductive illnesses remain largely absent from both disability policy frameworks and scholarship on health and disability. Little is known about how people with endometriosis themselves understand and negotiate disability as it relates to their condition, or how the social and institutional contexts in which they live and work shape those understandings. This study begins to address that gap by examining how members of two online endometriosis communities discuss, contest, and claim disability identity.

Author

• Colleen Kavanagh, Case Western Reserve University