A personal, compelling perspective on how medical diagnoses can profoundly hurt, or help, the lived experiences of entire communities
Winner, 2017 Sex and Gender Distinguished Book Award, presented by the American Sociological Association
Winner, 2016 Donald Light Award for the Applied or Public Practice of Medical Sociology, presented by the American Sociological Association
When sociologist Georgiann Davis was a teenager, her doctors discovered that she possessed XY chromosomes, marking her as intersex. Rather than share this information with her, they withheld the diagnosis in order to “protect” the development of her gender identity; it was years before Davis would see her own medical records as an adult and learn the truth. Davis’ experience is not unusual. Many intersex people feel isolated from one another and violated by medical practices that support conventional notions of the male/female sex binary which have historically led to secrecy and shame about being intersex. Yet, the rise of intersex activism and visibility in the US has called into question the practice of classifying intersex as an abnormality, rather than as a mere biological variation. This shift in thinking has the potential to transform entrenched intersex medical treatment.
In Contesting Intersex, Davis draws on interviews with intersex people, their parents, and medical experts to explore the oft-questioned views on intersex in medical and activist communities, as well as the evolution of thought in regards to intersex visibility and transparency. She finds that framing intersex as an abnormality is harmful and can alter the course of one’s life. In fact, controversy over this framing continues, as intersex has been renamed a ‘disorder of sex development’ throughout medicine. This happened, she suggests, as a means for doctors to reassert their authority over the intersex body in the face of increasing intersex activism in the 1990s and feminist critiques of intersex medical treatment. Davis argues the renaming of ‘intersex’ as a ‘disorder of sex development’ is strong evidence that the intersex diagnosis is dubious. Within the intersex community, though, disorder of sex development terminology is hotly disputed; some prefer not to use a term which pathologizes their bodies, while others prefer to think of intersex in scientific terms. Although terminology is currently a source of tension within the movement, Davis hopes intersex activists and their allies can come together to improve the lives of intersex people, their families, and future generations. However, for this to happen, the intersex diagnosis, as well as sex, gender, and sexuality, needs to be understood as socially constructed phenomena. A personal journey into medical and social activism, Contesting Intersex presents a unique perspective on how medical diagnoses can affect lives profoundly.
viiContentsAcknowledgments ix1. Introduction: “You’re in the Monkey Cage with Me” 12. The Transformation of Intersex Advocacy 263. Medical Jurisdiction and the Intersex Body 554. The Power in a Name 875. A Different Kind of Information 1166. Conclusion: The Dubious Diagnosis 145Appendix A: Table of Research Participants 171Appendix B: Conference Agenda 173Notes 179References 191Index 209About the Author 221
“Davis presents acompelling and beautifully-crafted text about the complex issues of gender andsexual identity. How medicine and diagnosis can either come in aid of, orbrutally disrupt the experience of intersexuality is an important paradox,worthy of reflection and debate. With this book, Davis gets the ballrolling and demands our attention. It is well-worth the read.”-Annemarie Jutel,author of Putting a Name to It: Diagnosis in Contemporary Society
“Davis provides her readers with a concise overview of her research as well as lists calls to action. Davis’s strengths lie in the seamless blending of research, ethnography, interviews, and personal activism.”-American Book Review
“Contesting Intersex is an unapologetic coalescence of Davis’ first-hand experiences of an intersex diagnosis and her academic inquiry into the topic. Whilst this, as she acknowledges, ‘may make the book read like an autoethnography at certain points,’ theory, politics and practice have never been discrete in intersex studies. Davis’s own history and current participation in the intersex community help her to provide a circumspect consideration of the tensions at play.”-Sociology of Health & Illness
“Contesting Intersex is an essential update to studies of the intersex and a must-read for those interested in social movements, gender, medicalization, diagnosis, and the relationship between science and culture.”-American Journal of Sociology
“The histories of medicine, social movements, and gender productivity collide in sociologist Davis’s compelling account of how activists, parents, assorted medical specialists and institutions, and people with intersex traits respond to the diversity of human reproductive development...[T]his book will inspire and inform the wide readership it deserves.” -Choice
“Through piercing interviews and astuteanalysis, and in a readable style, Contesting Intersex gets at the heartof recent controversies about the medical management of intersex andperceptively tracks the political engagement of intersex activists.”-Elizabeth Reis,author of Bodies in Doubt: An American History of Intersex
“With refreshingly honest prose and an insider'sinsight, Georgiann Davis illuminates the ongoing, heated, and often painfuldebate about how best to respond to the naturally occurring diversity of sexdevelopment in human beings. This is groundbreaking work that is sure to becomerequired reading for scholars of gender and the social history of medicine.”-Sharon Preves,author of Intersex and Identity: The Contested Self