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Normalizing Intersex NORMALIZING INTERSEX PRODUCED AND DISTRIBUTED FOR THE FOUNDATION FOR NARRATIVE INQUIRY IN BIOETHICS BY Mission Statement The Foundation for Narrative Inquiry in Bioethics exists to foster research and education in bioethics and related fi elds primarily through the publication of Narrative Inquiry in Bioethics: A Journal of Qualitative Research. We are a 501(c)(3) nonprofi t public charity (EIN 27-1069500). We welcome gifts to support our mission. We may be con- tacted at [email protected]. Further information on the Foundation and future activities are provided on its website: www.narrativebioethics.com © 2016 by Johns Hopkins University Press. All rights reserved. VOICES is an occasional publication of the Foundation for Narrative Inquiry in Bioethics, distributed by Johns Hopkins University Press. The articles that appear in VOICES are reprinted from Narrative Inquiry in Bioethics. Permissions. No portion of VOICES may be reproduced by any process or technique without the formal consent of the publisher. Copies for personal or internal use may be made on the condition that the copier pay a fee of $8.00 per copy through the Copyright Clearance Center, 222 Rosewood Dr., Danvers, MA 01970, for copying be- yond that permitted by Section 107 or 108 of the U.S. Copyright Law. This consent does not extend to other kinds of copying, such as copying for general distribution, for advertising or promotional purposes, for creating new collective works, or for resale. Direct all other permissions requests to Permissions Manager, The Johns Hopkins University Press, 2715 N. Charles Street, Baltimore, MD 21218-4363; or visit www.press.jhu.edu/cgibin/permis- sions.cgi. POSTMASTER: Send address changes to Voices, Johns Hopkins University Press, Journals Division, 2715 N. Charles Street, Baltimore, MD 21218-4363. Readers of VOICES may be interested in subscribing to Narrative Inquiry in Bioethics. For more informaition, please see our website: https://www.press.jhu.edu/journals/narrative_inquiry_in_bioethics/ This publication is designed by Journals Production, Johns Hopkins University Press. The paper in this publica- tion meets the requirements of ANSI/NISOZ39.48-1992 (Permanence of Paper). ™ Contents NORMALIZING INTERSEX Introduction Editors, James M. DuBois and Ana S. Iltis Normalizing Intersex: The Transformative Power of Stories 1 Georgiann Davis, Symposium Editor Personal Narratives 5 Konrad Blair, Diana Garcia, Laura Inter, Amanda, Lynnell Stephani Long, Pidgeon Pagonis, Jay Kyle Petersen, Emily Quinn, Daniela Truffer, Hida Viloria, Sean Saifa Wall, Karen A. Walsh, Kimberly Zieselman Commentary Cris de Coeur and the Moral Imperative to Listen and Learn from Intersex People 41 Arlene Baratz and Katrina Karkazis Beyond Good Intentions 47 Ellen Feder, Symposium Editor A Pediatrician’s View 53 Joel E. Frader Stonewalling Emotion 57 Lih–Mei Liao EDITORS James M. DuBois, PhD, DSc Center for Clinical Research Ethics, Washington University School of Medicine Ana S. Iltis, PhD Center for Bioethics, Health, and Society, Wake Forest University ASSOCIATE EDITOR FOR RESEARCH ARTICLES Emily E. Anderson, PhD, MPH Neiswanger Institute for Bioethics & Health Policy, Loyola University Chicago Stritch School of Medicine ASSOCIATE EDITOR FOR CASE STUDY ARTICLES Rebecca L. Volpe, PhD Assistant Professor of Humanities, Penn State College of Medicine MANAGING EDITOR Susan DuBois, MA Foundation for Narrative Inquiry in Bioethics, St. Louis, MO DIRECTOR OF COMMUNITY ENGAGEMENT Gianna McMillan, MA Patient Advocate/Research Subject Advocate EDITORIAL BOARD Dan Bustillos, JD, PhD Charles Lidz, PhD Nursing and Health Studies Center for Mental Health Services Research, University of Washington, Bothell University of Massachusetts Tod Chambers, PhD Hilde Lindemann, PhD Medical Humanities & Bioethics Program, Department of Philosophy, Michigan State University Northwestern University Martha Montello, PhD Rita Charon, MD, PhD Department of History and Philosophy of Medicine, Department of Medicine, College of Physicians & University of Kansas Medical Center Surgeons of Columbia University Kathryn Montgomery, PhD Raymond De Vries, PhD Medical Humanities & Bioethics, Northwestern University Bioethics Program, the Department of Obstetrics and Eric Racine, PhD Gynecology, and the Department of Medical Education, Neuroethics Research Unit, Institut de recherches cliniques de University of Michigan Medical School Montréal, Université de Montréal, and McGill University Renee Fox, PhD Laura Roberts, MD Department of Sociology, University of Pennsylvania Department of Psychiatry & Behavioral Sciences, Arthur W. Frank, PhD Stanford University Department of Sociology, University of Calgary Cynda Hylton Rushton PhD,RN, FAAN Elisa Gordon, PhD, MPH Berman Institute of Bioethics, Johns Hopkins University Division of Organ Transplantation, Department of Surgery, Martin L. Smith, STD Feinberg School of Medicine Northwestern University Center for Ethics, Humanities and Spiritual Care, Amy Haddad, PhD, MSN Cleveland Clinic Center for Health Policy and Ethics, Jeffrey P. Spike, PhD Creighton University Medical Center The John P. McGovern, M.D. Center For Health, Anne Hudson Jones, PhD Humanities, and The Human Spirit, The University The Institute for the Medical Humanities, of Texas Health Science Center at Houston University of Texas Medical Branch Jeremy Sugarman, MD, MPH, MA Barbara A. Koenig, PhD Berman Institute of Bioethics, Johns Hopkins University Department of Social & Behavioral Sciences Institute for Health Laurie Zoloth, PhD and Aging, University of California, San Francisco Center for Bioethics, Science and Society, Northwestern University This issue of VOICES is made possible through the generosity of: The Open Society Foundation interACT interACT uses innovative legal and other strategies to advocate for the human rights of children born with intersex traits. www.interactadvocates.org The Anna Julia Cooper Center The Anna Julia Cooper Center is an interdisciplinary center at Wake Forest University that supports, generates, and communicates innovative research at the intersections of gender, race, and place in order to ask new questions, reframe critical issues, and pursue equitable outcomes. www.ajccenter.wfu.edu Special Thanks to Gianna McMillan, MA for her belief in this project and all the work she did to help bring it to fruition. All the authors in this issue for sharing their stories with all of us. NARRATIVE SYMPOSIUM Introduction Normalizing Intersex: The Transformative Power of Stories Georgiann Davis1* 1) University of Nevada, Las Vegas *Correspondence concerning this article should be addressed to Georgiann Davis at the University of Nevada, Las Vegas, 4505 S. Maryland Parkway, Box 455033, Las Vegas, NV 89154–5033. Email: [email protected] Background started to engage with the complexities of “sex” and “gender” as distinct social constructs. Sex is allegedly I’m intersex. I was diagnosed with complete andro- a binary biological phenomenon that allows for the gen insensitivity syndrome (CAIS) when I was a categorization of bodies as either “male” or “female” young teenager in the early 1990s, although I didn’t based on any number of arbitrary markers of sex, be it learn the truth about my body until I obtained my gonadal, genital, or chromosomal. Some phenotypical own medical records years later as an adult. A sur- females—myself included—have (or in my case had) geon removed my internal testes in 1997, when I was internal testes, a vagina, and XY chromosomes. Simi- 17 years old. The surgery was an attempt to normal- larly, what we understand as “masculine” or “femi- ize my “abnormal” body because testes don’t belong nine” gender characteristics depends on the cultural in a female body. I thought the doctor was removing context, including the historical moment in which the premalignant underdeveloped ovaries, but as I later categorization occurs. Take for example the profession learned that was a lie he told me allegedly to ensure of medicine, which was historically dominated by that I would see myself as the girl I had been raised men. Today, far more women are entering the medical to be. Although I no longer hold any animosity for profession, even though they are disproportionately how I was treated by a medical provider I admired represented in lower prestige areas of specialization and respected as a teenager, I wish he knew that the (Davis & Allison, 2013). surgery he performed created a new set of abnormali- I’m intersex, but I’m also a sociocultural scholar ties in my life. Having my body surgically modifi ed who studies how people with intersex traits, their for a medically unnecessary reason, I came to feel parents, and doctors experience intersex in con- that my core was, from the beginning of my life, temporary U.S. society. In 2008, I was compelled damaged. I felt like I was a freak of nature. For years to bridge my personal and professional interest I wondered how different my life would be had my in intersex after I learned it was controversially body been left intact, and rather than lied to about renamed disorders of sex development, or DSD for my diagnosis, I had been told I was a unique, and, short, in the 2006 “Medical Consensus Statement most importantly, natural variation, even if most of on Management of Intersex Disorders” (Lee, Houk, us have been taught that sex is simply binary. Ahmed, & Hughes, 2006). My research reveals that I’m intersex, but for years I never shared it. It medical providers no longer use intersex
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