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

Cara E. Jones
In: Hypatia · 2016 · vol. 31(3) , pp. 554–571 · doi:10.1111/hypa.12248 · W2379194635
article OA: closed CC0 ⤵ 31 in-corpus citations
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The paper argues that feminist disability studies must more directly theorize pain by centering the gynecological condition endometriosis (endo), because the highly feminized and sexualized nature of endo pain can function as a major source of disability. Using a feminist disability studies framework, it contrasts medical models that often emphasize fertility-enhancing treatment over pain relief and proposes a pain-centric model of disability politicized through both social-constructionist and medical disability perspectives that foreground lived experience. A caveat is that the article is primarily conceptual and does not provide new empirical data. This paper is centrally about endometriosis — it develops a feminist disability studies reading that frames endo pain as disability.

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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.

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endometriosis

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