{"paper_id":"bc280a01-53ff-4d6f-b729-c9b7470b9eab","body_text":"Published online by Cambridge University Press: 01 January 2020\nDisability 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.\n- Type\n- Articles\n- Information\n- Copyright\n- Copyright © 2016 by Hypatia, Inc.\nAmericans with Disability Act (ADA). http://www.ada.gov/pubs/adastatute08.htm#12102 (accessed June 5, 2015).Google Scholar\nAyuso, A., Fadare, O., and Khabele, D. 2013. A case of extrauterine endometrial stromal sarcoma in the colon diagnosed three decades after hysterectomy for benign disease. Case Reports in Obstetrics and Gynecology (4): 1–3.CrossRefGoogle ScholarPubMed\nBallweg, Mary Lou. 2004. Endometriosis: The complete reference for taking charge of your health. New York: McGraw‐Hill.Google Scholar\nBawin, I., Troisfontaines, E., and Nisolle, M. 2013. Rare case of ureteral endometriosis nine years after hysterectomy. Revue Médicale de Liège 68 (7–8): 378–81.Google ScholarPubMed\nBridge‐Cook, Philippa. 2014. Endometriosis and risk of suicide. Hormones Matter. http://www.hormonesmatter.com/endometriosis-risk-suicide/ (accessed September 24, 2015).Google Scholar\nCarol, Ruth, ed. 1994. Alternatives for women with endometriosis. Chicago: Third Side Press.Google Scholar\nCrow, Liz. 1996. Including all our lives: Renewing the social model of disability. In Encounters with strangers: Feminism and disability, ed. Morris, Jenny. London: The Women's Press.Google Scholar\nDenny, Elaine, Cully, Lorraine A., Papadopoulos, Irena, and Apenteng, Patricia. 2011. From womanhood to endometriosis: Findings from focus groups with women from different ethnic groups. Diversity in Health and Care 8 (3): 167–80.Google Scholar\nDenny, Elaine, and Mann, Christopher H. 2007. Endometriosis‐associated dyspareunia: The impact on women's lives. Journal of Family Planning and Reproductive Health Care 33 (3): 189–93.CrossRefGoogle ScholarPubMed\nErevelles, Nirmala. 2011. Disability and difference in global contexts: Enabling a transformative body politic. New York: Palgrave Macmillan.CrossRefGoogle Scholar\nFox, Luke. 2014. Endometriosis and transgender: Beyond gendered reproductive health. Hormones Matter. http://www.hormonesmatter.com/endometriosis-transgender-beyond-gendered-reproductive-health/ (accessed September 24, 2015).Google Scholar\nFukunaga, M. 2012. Paratesticular endometriosis in a man with prolonged hormonal therapy for prostatic carcinoma. Pathology Research and Practice 208 (1): 49–61.CrossRefGoogle Scholar\nGarland‐Thompson, Rosemarie. 2011. Integrating disability, transforming feminist theory. In Feminist disability studies, ed. Hall, Kim Q.Bloomington: Indiana University Press.Google Scholar\nGiannarini, Gianluca, Scott, Cathryn Anne, Moro, Umberto, Grossetti, Barbara, Pomara, Giorgio, and Selli, Cesare. 2006. Cystic endometriosis of the epididymis. Urology 68 (1): 203.e1–3.CrossRefGoogle ScholarPubMed\nGupta, Jhumka. 2014. Endometriosis is a social justice issue. The Huffington Post, October 21. http://www.huffingtonpost.com/jhumka-gupta/endometriosis-is-a-social_b_5986690.html (accessed June 5, 2015).Google Scholar\nJones, Georgina, Jenkinson, Crispin, and Kennedy, Stephen. 2004. The impact of endometriosis upon quality of life: A qualitative analysis. Journal of Psychosomatic and Obstetric Gynecology 25: 123–33.CrossRefGoogle ScholarPubMed\nJung, Karen Elizabeth. 2011. Chronic illness and education equity: The politics of visibility. In Feminist disability studies, ed. Hall, Kim Q.Bloomington: Indiana University Press.Google Scholar\nLamp, Sharon, and Carol Cleigh, W. 2011. A heritage of ableist rhetoric in American feminism from the eugenics period. In Feminist disability studies, ed. Hall, Kim Q.Bloomington: Indiana University Press.Google Scholar\nLevy, B. S., Apgar, B. S., Surry, E. S., and Wysocki, S. 2007. Endometriosis and chronic pain: A multispecialty roundtable discussion. Journal of Family Practice 56 (3): S3–13.Google ScholarPubMed\nLinton, Simi. 2006. Reassigning meaning. In The disability studies reader, ed. Davis, Lennard. New York: Routledge.Google Scholar\nLinton, Simi. 2010. My body politic: A memoir. Ann Arbor: University of Michigan Press.Google Scholar\nManero, Manuel García, Royo, Pedro, Olartecoechea, Begoña, and Alcázar, Juan Luis. 2009. Endometriosis in a postmenopausal woman without previous hormonal therapy: A case report. Journal of Medical Case Reports 3 (1): 135.CrossRefGoogle Scholar\nMartin, C. D., Johnson, E., Wechter, M. E., Leserman, J., and Zolnoun, D. A. 2011. Catastrophizing: A predictor of persistent pain in women with endometriosis at 1 year. Human Reproduction. 26 (11): 3078–84.CrossRefGoogle ScholarPubMed\nMartin, J. D., and Hauck, A. E. 1985. Endometriosis in the male. American Surgery 51 (7): 426–30.Google ScholarPubMed\nMcRuer, Robert. 2002. Compulsory able‐bodiedness and queer/disabled existence. In Disability studies: Enabling the humanities, ed. Garland‐Thompson, Rosemarie, Jo Bruggemann, Brenda, and Snyder, Sharon L.New York: MLA Press.Google Scholar\nMcRuer, Robert. 2006. Crip theory: Cultural signs of queerness and disability. New York: New York University Press.Google Scholar\nMintz, Susannah B. 2011. On a scale from 1 to 10: Life writing and lyrical pain. Journal of Literary and Cultural Disability Studies 5 (3): 243–60.CrossRefGoogle Scholar\nMissmer, S. A., Hankinson, S. E., Spiegelman, D., Barbieri, R. L., Marshall, L. M., and Hunter, D. J. 2004. Incidence of laparoscopically confirmed endometriosis by demographic, anthropometric, and lifestyle factors. American Journal of Epidemiology 160 (8): 784–96.CrossRefGoogle ScholarPubMed\nMollow, Anna. 2012. Is sex disability? In Sex and disability, ed. McRuer, Robert and Mollow, Anna. Durham, N.C.: Duke University Press.Google Scholar\nMorris, Kerry‐Ann. 2006. Living well with endometriosis: What your doctor doesn't tell you that you need to know. New York: Harper‐Collins.Google Scholar\nNielsen, Kim. E. 2012. A disability history of the United States. Boston: Beacon Press.Google Scholar\nNnoaham, K. E., et al. 2011. Impact of endometriosis on quality of life and work productivity: A multicenter study across ten countries. Fertility and Sterility 96 (2): 366–73.CrossRefGoogle ScholarPubMed\nOlder, Julia. 1985. Endometriosis—an often undetected cause of infertility and other major medical problems. New York: Charles Scribner's Sons.Google Scholar\nOlive, David, ed. 2005. Endometriosis in clinical practice. Abingdon, U.K.: Taylor and Francis.CrossRefGoogle Scholar\nPatsavas, Alyson. 2014. Recovering a cripistemology of pain: Leaky bodies, connective tissue, and feeling discourse. Journal of Literary and Cultural Disability Studies 8 (2): 203–18.CrossRefGoogle Scholar\nPhillips, Robert H., and Motta, Glenda. 2000. Coping with endometriosis: A practical guide. New York: Avery.Google Scholar\nPrice, Margaret. 2015. The bodymind problem and the possibilities of pain. Hypatia 30 (1): 268–84.CrossRefGoogle Scholar\nRedwine, David B. 2009. 100 questions and answers about endometriosis. Sudbury, Mass.: Jones and Bartlett.Google Scholar\nRedwine, David B. 2013. Endopaedia. http://endopaedia.info/ (accessed January 14, 2016).Google Scholar\nRimke, Heidi Marie. 2000. Governing citizens through self‐help literature. Cultural Studies 14 (1): 61–78.CrossRefGoogle Scholar\nRoberts, Dorothy. 1997. Killing the black body: Race, reproduction, and the meaning of liberty. New York: Vintage.Google Scholar\nRousso, Harilyn. 2013. Don't call me inspirational: A disabled feminist talks back. Philadelphia: Temple University Press.Google Scholar\nSamuels, Ellen. 2003. My body, my closet: Invisible disability and the limits of coming‐out discourse. GLQ: A Journal of Gay and Lesbian Studies 9 (1/2): 233–55.CrossRefGoogle Scholar\nSanmiguel, Lisa. 2000. From “career woman's disease” to “an epidemic ignored”: Endometriosis in US culture since 1948. PhD diss., Department of Communication, University of Illinois at Urbana‐Champaign.Google Scholar\nSchuster, Meike, and Mackeen, Dhanya A. 2015. Fetal endometriosis: A case report. Fertility and Sterility 103 (1): 160–62.CrossRefGoogle ScholarPubMed\nScott, Cameron. 2015. The personal, painful ordeal of women with endometriosis. Healthline, June 18. http://www.healthline.com/health-news/personal-painful-ordeal-of-women-with-endometriosis-061815#2 (accessed September 24, 2015).Google Scholar\nSeear, Kate. 2009. The etiquette of endometriosis: Stigmatisation, menstrual concealment and the diagnostic delay. Social Science and Medicine 69 (8): 1220–27.CrossRefGoogle ScholarPubMed\nShakespeare, Tom. 1999. The sexual politics of disabled masculinity. Sexuality and Disability 17 (1): 53–64.CrossRefGoogle Scholar\nShohat, Ella. 1992. Lasers for ladies: Endo discourse and the inscription of science. Camera Obscura 10 (2 29): 57–89.CrossRefGoogle Scholar\nSiebers, Tobin. 2001. Disability in theory: From social constructionism to the new realism of the body. American Literary History 13 (4): 737–54.CrossRefGoogle Scholar\nSiebers, Tobin. 2008. Disability theory. Ann Arbor: University of Michigan Press.CrossRefGoogle Scholar\nSimoens, S., Hummelshoj, L., and D'Hooghe, T. 2007. Endometriosis: Cost estimates and methodological perspective. Human Reproduction Update 13 (4): 395–404.CrossRefGoogle ScholarPubMed\nSimsek, Gulcin, Bulus, Hakan, Tas, Adnan, Koklu, Seyfettin, Yilmaz, Suleyman Burhan, and Coskun, Ali. 2012. An unusual case of inguinal hernia in a male patient: Endometriosis. Gut and Liver 6 (2): 284–85.CrossRefGoogle Scholar\nVidali, Amy. 2010. Out of control: The rhetoric of gastrointestinal disorders. Disability Studies Quarterly 30 (3/4). http://dsq-sds.org/article/view/1287/1313 (accessed January 11, 2016).CrossRefGoogle Scholar\nWendell, Susan. 1996. The rejected body: Feminist philosophical reflections on disability. New York: Routledge.Google Scholar\nWendell, Susan. 2001. Unhealthy disabled: Treating chronic illnesses as disabilities. Hypatia 16 (4): 17–33.CrossRefGoogle Scholar\nWilkerson, Abby. 2011. Disability, sex radicalism, and political agency. In Feminist disability studies, ed. Hall, Kim Q.Bloomington: Indiana University Press.Google Scholar\nYoung, R. H., and Scully, R. E. 1986. Testicular and paratesticular tumors and tumor‐like lesions of ovarian common epithelial and mullerian types. American Journal of Clinical Pathology 86 (2): 146–52.CrossRefGoogle ScholarPubMed\nZamecnik, M., and Hostakova, D. 2013. Endometriosis in a mesothelial cyst of tunica vaginalis of the testes. Ceskoslovenska Patologie 49 (5): 134–36.Google Scholar\n- 71\n- Cited by\nCited by\nCrossref Citations\nGupta, Jhumka\nCardoso, Lauren F\nHarris, Courtney S\nDance, Arielle D\nSeckin, Tamer\nBaker, Nina\nand\nFerguson, Yvonne O\n2018.\nHow do adolescent girls and boys perceive symptoms suggestive of endometriosis among their peers? Findings from focus group discussions in New York City.\nBMJ Open,\nVol. 8,\nIssue. 6,\np.\ne020657.\nPrzybylo, Ela\nand\nFahs, Breanne\n2020.\nThe Palgrave Handbook of Critical Menstruation Studies.\np.\n375.\nBergman, Mindy E.\nSiuta, Rose L.\nLiu, Sin-Ning C.\nand\nCapuchino, Briana G.\n2020.\nPushing our Understanding of Diversity in Organizations.\np.\n53.\nBobel, Chris\nand\nFahs, Breanne\n2020.\nThe Palgrave Handbook of Critical Menstruation Studies.\np.\n1001.\nJones, Cara E.\n2021.\nQueering gendered disabilities.\nJournal of Lesbian Studies,\nVol. 25,\nIssue. 3,\np.\n195.\nJohnson, Merri Lisa\n2021.\nNeuroqueer Feminism: Turning with Tenderness toward Borderline Personality Disorder.\nSigns: Journal of Women in Culture and Society,\nVol. 46,\nIssue. 3,\np.\n635.\nGupta, Jhumka\nCardoso, Lauren\nKanselaar, Samantha\nScolese, Anna M.\nHamidaddin, Alzahra\nPollack, Anna Z.\nand\nEarnshaw, Valerie A.\n2021.\nLife Disruptions, Symptoms Suggestive of Endometriosis, and Anticipated Stigma Among College Students in the United States.\nWomen's Health Reports,\nVol. 2,\nIssue. 1,\np.\n633.\nDrabble, Sarah J\nLong, Jaqui\nAlele, Blessing\nand\nO’Cathain, Alicia\n2021.\nConstellations of pain: a qualitative study of the complexity of women’s endometriosis-related pain.\nBritish Journal of Pain,\nVol. 15,\nIssue. 3,\np.\n345.\nJohnson, Lucy\n2022.\nAdapt and Adjust: Doing UK-Based Ethnographic Fieldwork During the Covid-19 Pandemic.\nMedical Anthropology,\nVol. 41,\nIssue. 8,\np.\n763.\nGillberg, Claudia\n2022.\nThe Oxford Handbook of Jane Addams.\np.\n603.\nHolowka, Eileen Mary\n2022.\nMediating Pain: Navigating Endometriosis on Social Media.\nFrontiers in Pain Research,\nVol. 3,\nIssue. ,\nHawkey, Alexandra\nChalmers, K. Jane\nMicheal, Sowbhagya\nDiezel, Helene\nand\nArmour, Mike\n2022.\n“A day-to-day struggle”: A comparative qualitative study on experiences of women with endometriosis and chronic pelvic pain.\nFeminism & Psychology,\nVol. 32,\nIssue. 4,\np.\n482.\nIengo, Ilenia\n2022.\nEndometriosis and Environmental Violence.\nEnvironmental Humanities,\nVol. 14,\nIssue. 2,\np.\n341.\nNève, Margaux\n2023.\nIdées reçues sur les menstruations.\np.\n85.\n2023.\nActivist Affordances.\np.\n293.\n2023.\nActivist Affordances.\np.\n191.\nRemnant, Jennifer\nSang, Katherine\nMyhill, Katriona\nCalvard, Thomas\nChowdhry, Sushila\nand\nRichards, James\n2023.\nWorking it out: Will the improved management of leaky bodies in the workplace create a dialogue between medical sociology and disability studies?.\nSociology of Health & Illness,\nVol. 45,\nIssue. 6,\np.\n1276.\n2023.\nActivist Affordances.\np.\n87.\n2023.\nActivist Affordances.\np.\n71.\nLindgren, Simon\nand\nRichardson, Lorna\n2023.\nEndometriosis pain and epistemic community: Mapping discourses in online discussions among sufferers.\nSocial Science & Medicine,\nVol. 326,\nIssue. ,\np.\n115889.","source_license":"CC0","license_restricted":false}