The Pain of Endo Existence: Toward a Feminist Disability Studies Reading of Endometriosis

Abstract

Disability scholars have critiqued medical models that pathologize disability as an individual flaw that needs treatment, rehabilitation, and cure, favoring instead a social-constructionist approach that likens disability to other identity categories such as gender, race, class, and sexuality. However, the emphasis on social constructionism has left chronic illness and pain largely untheorized. This article argues that feminist disability studies (FDS) must attend to the common, chronic gynecological condition endometriosis (endo) when theorizing pain. Endo is particularly important for FDS analysis because the highly feminized and sexualized nature of endo pain is a major source of disability. Because medical treatments of endo enhance fertility rather than provide pain relief, those with endo must not only have access to medical services to manage their pain, but also demand better medical management of their pain as well as disability accommodations for their pain. Thus, I propose a pain-centric model of disability that politicizes pain through social-constructionist and medical models of disability by attending to the lived experiences of pain.