Queering gendered disabilities

Abstract

This project defines gendered disabilities broadly, including chronic illnesses that involve the uterus, ovaries, and other body parts traditionally classified as “female.” I interrogate the usage of language such as women’s health and gynecological using endometriosis, a common chronic illness that can cause severe pain, fatigue, system-wide effects, and infertility. It affects at least ten percent of cisgender women as well as unmeasured numbers of cisgender men and transgender and gender nonconforming people, occurring more commonly than migraines or Crohn’s disease. Endometriosis symptoms are often debilitating and can lead to un-/under-employment, reduced quality of life, and even suicide. Once nearly invisible, endometriosis has enjoyed recent public discussion, as major news outlets have reported the individual and social costs of endometriosis, and public figures have spoken out about their experiences. However, increased public spotlight has led to the proliferation of a narrative that endo is primarily a reproductive disease, a myth begun in medical literature nearly a century ago, which overlooks significant medical evidence and drives interventions that have high rates of failure and often cause further impairment. This paper examines locations where queerness meets gendered ableism, arguing that imagining endo as a gendered disability would be a first step toward decoupling compulsory heterosexuality from compulsory able-bodiedness. I also articulate gender-neutral ways to discuss endo and recommendations for more inclusive and accurate language and practices.

Keywords:

• Women’s health
• gynecology
• disability
• queer
• crip
• endometriosis

Disclosure of interest statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Notes

1 Research funding was secured through the DOD’s Congressionally Directed Medical Research Program, which “pursue[s] novel approaches to biomedical research that affects the American public, the military and Congress. As endometriosis affects all three of those population segments (directly or indirectly)” (Research Funding, 2018).

2 As diagnoses such as multiple sclerosis are shortened (MS), I alternate endo with endometriosis to demystify it, de-medicalize it, and make it more accessible.

3 I use Ella Shohat’s “endo discourses,” which “encompass[es] the whole textual body produced around endometriosis that refers to both hegemonic medical and alternative discourses” (1992, p. 84).

4 Endometriosis means “inflammation within the uterus,” despite involving lesions outside the uterus, and there is a small movement to replace hysterectomy with the more appropriate uterectomy to sever connections between women, the uterus, and hysteria as well as to be more intelligible to people with non-medical backgrounds (Gomez et al., 2018).

5 The primary, inaccurate, theory of endometriosis development is called “retrograde menstruation,” which happens when menstruation flows backward throughout the pelvic/abdominal cavity. This occurs in the vast majority of menstruators, not just those with endo.

6 Interestingly, PubMed automatically included “sexual and gender minorities” and “homosexuality” both with and without the qualifier “female.”

7 Rei et al. summarize previous studies of cisgender men with endometriosis. However, they frame intersex people as cisgender men and hypothesize that obesity-related hormone deregulation could cause endo without offering an intersex studies or fat studies analysis.

8 Crenshaw’s (1991) analysis of race and gender as “mutually reinforcing” (p. 1283)—conveyed by neologisms that succinctly communicate intersectional concepts, such as Bailey’s (2013) misogynoir that expresses the specific anti-black sexism Black women experience—informs my use of the phrase compulsory heterosexual able-bodiedness.

9 Rich’s “articulation of compulsory heterosexuality is predicated on the nondisabled body,” as Kafer (2003) has astutely noted, and Rich leaves behind a legacy of anti-trans theorizing. I reference her concept of "compulsory heterosexuality” to illustrate how endo “(re)produce[s] the able body and heterosexuality” (McRuer, 2006, p. 31).

10 Facebook groups such as “Endo Knows no Gend-O,” “Rainbow Endo Support,” and “Endoqueer and more” use this language.

Additional information

Notes on contributors

Cara E. Jones

Cara E. Jones is an Assistant Professor of Women's and Gender Studies at California State University, Sacramento, where she specializes in feminist disability studies. Her research explores how medical discourses of women's health are informed by and perpetuate social injustice. She is especially interested in how life writing and activism accept and resist medical models of gendered chronic illness.