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  • Fixing Sex: Intersex, Medical Authority, and Lived Experience

    Author(s): Katrina Karkazis
    Published: 2008
    Pages: 384
    Illustrations: 1 table
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    978-0-8223-4318-9
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  • Acknowledgments  ix
    Introduction  1
    Part 1. What is Intersexuality? History and Theory  
    1. Taxonomies of Intersexuality to the 1950s  31
    2. Complicating Sex, Routinizing Intervention: The Development of the Traditional Treatment Paradigm  47
    3. From Socialization to Hardwire: Challenges to the Traditional Treatment Paradigm  63
    Part 2. Making Decisions For and About a Baby with an Intersex Diagnosis  
    4. Boy or Girl? Bodies of Mixed Evidence and Gender Assignment  89
    5. Fixing Sex: Surgery and the Production of Normative Sexuality  133
    Part 3. Living the Medicalized Body  
    6. Waning and Deciding What is Best: Parents' Experiences  179
    7. Growing Up under the Medical Gaze  216
    8. The Intersex Body in the World: Activism and Social and Medical Change  236
    Notes  291
    References  321
    Index  343
  • Fixing Sex marks a groundbreaking contribution to the bioethical literature
    concerning the medical management of intersex conditions, taking up
    standard Western medical practice as a cultural artifact burdened with conventional understandings of masculinity and femininity, normal and abnormal, and indeed, medicine and culture. Karkazis’s investigation of the experiences of those involved in the management of ambiguously sexed bodies brings into conversation an unprecedented number of points of view: of persons with intersex conditions, parents of children, and the physicians who treat them. . . . Fixing Sex indubitably demonstrates the importance of the living perspectives of those affected by medical management. It also provides insight into the ways in which history may be essential for biomedical ethical thinking.” — Ellen K. Feder, International Journal of Feminist Approaches to Bioethics

    Fixing Sex is an eloquent and engaging exploration of the ways in which intersexuality is understood, treated, and experienced in the US today. . . . Fixing Sex is a wonderful book that will be of enormous value to individuals with intersex diagnoses and their parents and families, clinicians, counsellors, activists and academics. The book additionally has the ability to empower intersexed individuals and their care-givers to make considered and informed decisions regarding treatment, and validates those who refuse all treatment.” — Sharyn Graham Davies, Anthropological Forum

    Fixing Sex is an important text for scholars concerned with the numerous issues related to ‘intersex’ as well as individuals looking for a comprehensive introduction. As with all research there are many more questions to be answered and examined; Karkazis’ work contributes to the growing body of literature in ‘critical intersex studies’ while pointing the way toward the work that must still be done.” — Robert J. Davidson, Liminalis

    Fixing Sex is the result of meticulous research and in depth interviews with those most closely involved; it aims to help readers understand this unusual condition. I found the book fascinating for other reasons as well—namely how intersex conditions illuminate our taken for granted assumptions about what makes people male or female.” — Daisy Grewal, Psychology Today blog

    “[A] sensitive yet trenchant critique. . . .This important book gives voice to persons with intersex conditions whose experiences of pain, shame, isolation, and anger as a result of their medical treatment may have heretofore been dismissed by clinicians. By presenting these experiences in the context of ethnographic research that problematizes the objectivity of biomedicine, Karkazis may persuade the medical establishment to listen.” — G. Conti, Women’s Studies

    “[C]aptivating aspects infuse this book with life. . . . If Karkazis proffers one overall suggestion, it is the need for a multidisciplinary team that treats not just the affected children but the team as a whole: yes, physician, parent, and child. The child and adolescent psychiatrist will enjoy this book and obtain a preparation for getting involved. This book pleads for child psychiatric involvement. Perhaps it will be the initiator.” — William Reiner, M.D., Journal of the American Academy of Child and Adolescent Psychiatry

    “[T]his book would be an interesting read for all involved in the study of disorders of sexual development (DSD), including pediatricians, geneticists, gynecologists, and urologists.” — Claude J. Migeon, American Journal of Human Genetics

    “[W]hile not all who share their experiences in Fixing Sex are activists, their
    statements will certainly speak truth to power. Were medical authorities to engage with Karkazis’s important book, and I strongly recommend they do, they might recognize their latent hypocrisy and be humbled by their professional hubris.” — Pamela L. Geller, American Ethnologist

    “Anyone interested in the health and well being of intersex individuals will be informed by reading this book.” — Vic Muñoz, Journal of Health Psychology

    “I’ve taught from Karkazis’s book in several courses already, and find that her extremely fluent prose and clear arguments work well for both undergraduates and graduate students. . . . Fixing Sex is a theoretically sophisticated and nuanced ethnography of medical practice related to intersex conditions. . . .” — Rebecca Jordan-Young, Women’s Studies Quarterly

    “In incorporating the voices of not only medical professionals, but also the people whose lives have been affected in major ways by the results of medical decisions enacted on their or their children's bodies (and identities), Karkazis presents a more complete view of the topic than has been offered in the past. . . . Karkazis doesn't claim to offer any answers, but she brings the discussion up to date in a way no one else has yet, raising the difficult questions necessary to move the discourse on intersex issues forward.” — Kiri Oliver, Feminist Review blog

    “Karkazis explores the process the medical establishment uses to assign sex to infants whose anatomy deviates from the norm—and the consequences for those involved. Her research with clinicians, parents and intersex individuals provides a chilling look at an issue that deserves further critique.” — Curve Magazine

    “Karkazis has written a definitive treatment on a topic for which there is no decisive answer. And she does not try to provide one. What she does is productively unsettle the assumptions that much of the medical approach works from by respectfully positing gender as a mystery not reducible to the simple construct we operate under currently.” — Jennifer Reed, Feministe

    “Karkazis never loses sight of the authentic lived experiences of intersexed people and their families. . . . Fixing Sex . . . offers a compassionately written discussion of interest to anyone concerned with gender and sexuality, health activism, and human rights.” — Summer Wood, Bitch

    “Karkazis reveals great ambition, curiosity, and compassion in her book, which affords precious insights. She eloquently identifies many matters that merit further discussion, and deserves our applause for getting the discussion started.” — Rick Docksai, World Future Review

    “Katrina Karkazis’s excellent Fixing Sex is an anthropological investigation into the triangulation of clinical medicine, intersexed persons, and parents. Written in three parts, Karkazis offers the reader a succinct history of the medical management of intersex since the late nineteenth century, an ethnographic account of intersex treatment in the contemporary clinical milieu, and a measured inquiry into the variety of issues faced by people who have intersex conditions, or ‘disorders of sexual development’ (DSD), and their parents.” — Alison Redick, GLQ

    “Katrina Karkazis’s stimulating book, Fixing Sex: Intersex, Medical Authority, and Lived Experience, masterfully examines the concerns and fears of all those with a stake in the intersex debate: physicians, parents, intersex adults, and activists. . . . Karkazis’s honest, multi-pronged approach poses critical
    questions.” — Elizabeth Reis, American Journal of Bioethics

    “Katrina Karkazis' new book, Fixing Sex, made me sense that there really are some glimmers of hope. . . . Here is an ethicist who stands back from this debate and looks at it objectively and then takes the time to discuss issues that are of importance to intersex people.” — Sophia Siedlberg, Organization Intersex International

    “The cultural rules of gender are complex, and they are never more tested than in the case of intersex. Fixing Sex is a huge addition to the field, encompassing as it does the views of clinicians, patients, parents, and others. The topic is intrinsically interesting, but Katrina Karkazis's wonderful writing makes this a compelling story and a great read.” — Dr. Faisal Ahmed, Scottish Genital Anomalies Network Newsletter

    “The strength of her book is in pulling together the multiple social worlds of intersex: stories of doctors, activists, parents, and adults with intersex are presented alongside scientific and clinic histories, taxonomic controversies, treatment battles, and the quest for technological fixes to corporeal and ontological problems. We also get the best account of the intersex patients’ rights movements, and its recent splintering, that I’ve read. The book offers a nuanced analysis of medical authority without crucifying doctors, and at the same time embodies a humanistic commitment to compassion, choice, and care in addressing the needs of intersex people.” — Monica J. Casper, Women’s Review of Books

    “Theoretically savvy and politically engaged, Karkazis is one of the founding board members of the new Accord Alliance. Yet her work is one of the most balanced in the field. . . . I suspect it is her close connection with intersex patients and their parents that most tempered her analysis.” — Vernon A. Rosario, Gay and Lesbian Review Worldwide

    Fixing Sex is the best book I have ever read over the years which deals with the ethical issues which have plagued the intersex community, parents and doctors. One reason is that it is meticulously researched and in the introduction, the author helps the reader understand her methodology and also makes it transparent and easy to grasp for the reader who is not familiar with such research. . . . Katrina Karkazis has written a book that both I (an intersex activist) and a medical doctor can read and understand and not be upset about. Now that is a tour de force.” — Curtis E. Hinkle, Intersex News

    “In addition to interviewing individuals with intersex syndromes and their parents, Karkazis interviewed the clinicians socially authorized to assign and surgically produce gender. Hearing them express in their own words their professional convictions, private doubts,misplaced loyalties, and mounting uncertainties adds a previously missing dimension to the discussion. The accumulated layering of these varied perspectives makes this an insightful, disquieting, appalling, and heartbreaking book. . . . This book will be a vital resource for scholars of gender and sexuality. . . .” — Lynn Morgan, American Anthropologist

    “Karkazis allows patients, their families, and their physicians to speak for themselves. The lived experiences that Karkazis weaves into her book are a poignant reminder of the inadequacy of patient education and of social support for many of the patients and their families. . . . If the goal of an author is to promote new ways of seeing, then Karkazis has succeeded well and has done so eloquently.” — Gary Berkovitz, New England Journal of Medicine

    “Karkazis. . . has produced a valuable, compelling account of historical, medical, and lived perspectives on the condition known as intersex or disorder of sex development. . . . Karkazis’s adroit scholarship—science illustrated in human terms-- makes a vital contribution to a complex, inadequately understood subject. Highly recommended. Lower-level graduates and above; general readers.” — P. Lefler, Choice

    Reviews

  • Fixing Sex marks a groundbreaking contribution to the bioethical literature
    concerning the medical management of intersex conditions, taking up
    standard Western medical practice as a cultural artifact burdened with conventional understandings of masculinity and femininity, normal and abnormal, and indeed, medicine and culture. Karkazis’s investigation of the experiences of those involved in the management of ambiguously sexed bodies brings into conversation an unprecedented number of points of view: of persons with intersex conditions, parents of children, and the physicians who treat them. . . . Fixing Sex indubitably demonstrates the importance of the living perspectives of those affected by medical management. It also provides insight into the ways in which history may be essential for biomedical ethical thinking.” — Ellen K. Feder, International Journal of Feminist Approaches to Bioethics

    Fixing Sex is an eloquent and engaging exploration of the ways in which intersexuality is understood, treated, and experienced in the US today. . . . Fixing Sex is a wonderful book that will be of enormous value to individuals with intersex diagnoses and their parents and families, clinicians, counsellors, activists and academics. The book additionally has the ability to empower intersexed individuals and their care-givers to make considered and informed decisions regarding treatment, and validates those who refuse all treatment.” — Sharyn Graham Davies, Anthropological Forum

    Fixing Sex is an important text for scholars concerned with the numerous issues related to ‘intersex’ as well as individuals looking for a comprehensive introduction. As with all research there are many more questions to be answered and examined; Karkazis’ work contributes to the growing body of literature in ‘critical intersex studies’ while pointing the way toward the work that must still be done.” — Robert J. Davidson, Liminalis

    Fixing Sex is the result of meticulous research and in depth interviews with those most closely involved; it aims to help readers understand this unusual condition. I found the book fascinating for other reasons as well—namely how intersex conditions illuminate our taken for granted assumptions about what makes people male or female.” — Daisy Grewal, Psychology Today blog

    “[A] sensitive yet trenchant critique. . . .This important book gives voice to persons with intersex conditions whose experiences of pain, shame, isolation, and anger as a result of their medical treatment may have heretofore been dismissed by clinicians. By presenting these experiences in the context of ethnographic research that problematizes the objectivity of biomedicine, Karkazis may persuade the medical establishment to listen.” — G. Conti, Women’s Studies

    “[C]aptivating aspects infuse this book with life. . . . If Karkazis proffers one overall suggestion, it is the need for a multidisciplinary team that treats not just the affected children but the team as a whole: yes, physician, parent, and child. The child and adolescent psychiatrist will enjoy this book and obtain a preparation for getting involved. This book pleads for child psychiatric involvement. Perhaps it will be the initiator.” — William Reiner, M.D., Journal of the American Academy of Child and Adolescent Psychiatry

    “[T]his book would be an interesting read for all involved in the study of disorders of sexual development (DSD), including pediatricians, geneticists, gynecologists, and urologists.” — Claude J. Migeon, American Journal of Human Genetics

    “[W]hile not all who share their experiences in Fixing Sex are activists, their
    statements will certainly speak truth to power. Were medical authorities to engage with Karkazis’s important book, and I strongly recommend they do, they might recognize their latent hypocrisy and be humbled by their professional hubris.” — Pamela L. Geller, American Ethnologist

    “Anyone interested in the health and well being of intersex individuals will be informed by reading this book.” — Vic Muñoz, Journal of Health Psychology

    “I’ve taught from Karkazis’s book in several courses already, and find that her extremely fluent prose and clear arguments work well for both undergraduates and graduate students. . . . Fixing Sex is a theoretically sophisticated and nuanced ethnography of medical practice related to intersex conditions. . . .” — Rebecca Jordan-Young, Women’s Studies Quarterly

    “In incorporating the voices of not only medical professionals, but also the people whose lives have been affected in major ways by the results of medical decisions enacted on their or their children's bodies (and identities), Karkazis presents a more complete view of the topic than has been offered in the past. . . . Karkazis doesn't claim to offer any answers, but she brings the discussion up to date in a way no one else has yet, raising the difficult questions necessary to move the discourse on intersex issues forward.” — Kiri Oliver, Feminist Review blog

    “Karkazis explores the process the medical establishment uses to assign sex to infants whose anatomy deviates from the norm—and the consequences for those involved. Her research with clinicians, parents and intersex individuals provides a chilling look at an issue that deserves further critique.” — Curve Magazine

    “Karkazis has written a definitive treatment on a topic for which there is no decisive answer. And she does not try to provide one. What she does is productively unsettle the assumptions that much of the medical approach works from by respectfully positing gender as a mystery not reducible to the simple construct we operate under currently.” — Jennifer Reed, Feministe

    “Karkazis never loses sight of the authentic lived experiences of intersexed people and their families. . . . Fixing Sex . . . offers a compassionately written discussion of interest to anyone concerned with gender and sexuality, health activism, and human rights.” — Summer Wood, Bitch

    “Karkazis reveals great ambition, curiosity, and compassion in her book, which affords precious insights. She eloquently identifies many matters that merit further discussion, and deserves our applause for getting the discussion started.” — Rick Docksai, World Future Review

    “Katrina Karkazis’s excellent Fixing Sex is an anthropological investigation into the triangulation of clinical medicine, intersexed persons, and parents. Written in three parts, Karkazis offers the reader a succinct history of the medical management of intersex since the late nineteenth century, an ethnographic account of intersex treatment in the contemporary clinical milieu, and a measured inquiry into the variety of issues faced by people who have intersex conditions, or ‘disorders of sexual development’ (DSD), and their parents.” — Alison Redick, GLQ

    “Katrina Karkazis’s stimulating book, Fixing Sex: Intersex, Medical Authority, and Lived Experience, masterfully examines the concerns and fears of all those with a stake in the intersex debate: physicians, parents, intersex adults, and activists. . . . Karkazis’s honest, multi-pronged approach poses critical
    questions.” — Elizabeth Reis, American Journal of Bioethics

    “Katrina Karkazis' new book, Fixing Sex, made me sense that there really are some glimmers of hope. . . . Here is an ethicist who stands back from this debate and looks at it objectively and then takes the time to discuss issues that are of importance to intersex people.” — Sophia Siedlberg, Organization Intersex International

    “The cultural rules of gender are complex, and they are never more tested than in the case of intersex. Fixing Sex is a huge addition to the field, encompassing as it does the views of clinicians, patients, parents, and others. The topic is intrinsically interesting, but Katrina Karkazis's wonderful writing makes this a compelling story and a great read.” — Dr. Faisal Ahmed, Scottish Genital Anomalies Network Newsletter

    “The strength of her book is in pulling together the multiple social worlds of intersex: stories of doctors, activists, parents, and adults with intersex are presented alongside scientific and clinic histories, taxonomic controversies, treatment battles, and the quest for technological fixes to corporeal and ontological problems. We also get the best account of the intersex patients’ rights movements, and its recent splintering, that I’ve read. The book offers a nuanced analysis of medical authority without crucifying doctors, and at the same time embodies a humanistic commitment to compassion, choice, and care in addressing the needs of intersex people.” — Monica J. Casper, Women’s Review of Books

    “Theoretically savvy and politically engaged, Karkazis is one of the founding board members of the new Accord Alliance. Yet her work is one of the most balanced in the field. . . . I suspect it is her close connection with intersex patients and their parents that most tempered her analysis.” — Vernon A. Rosario, Gay and Lesbian Review Worldwide

    Fixing Sex is the best book I have ever read over the years which deals with the ethical issues which have plagued the intersex community, parents and doctors. One reason is that it is meticulously researched and in the introduction, the author helps the reader understand her methodology and also makes it transparent and easy to grasp for the reader who is not familiar with such research. . . . Katrina Karkazis has written a book that both I (an intersex activist) and a medical doctor can read and understand and not be upset about. Now that is a tour de force.” — Curtis E. Hinkle, Intersex News

    “In addition to interviewing individuals with intersex syndromes and their parents, Karkazis interviewed the clinicians socially authorized to assign and surgically produce gender. Hearing them express in their own words their professional convictions, private doubts,misplaced loyalties, and mounting uncertainties adds a previously missing dimension to the discussion. The accumulated layering of these varied perspectives makes this an insightful, disquieting, appalling, and heartbreaking book. . . . This book will be a vital resource for scholars of gender and sexuality. . . .” — Lynn Morgan, American Anthropologist

    “Karkazis allows patients, their families, and their physicians to speak for themselves. The lived experiences that Karkazis weaves into her book are a poignant reminder of the inadequacy of patient education and of social support for many of the patients and their families. . . . If the goal of an author is to promote new ways of seeing, then Karkazis has succeeded well and has done so eloquently.” — Gary Berkovitz, New England Journal of Medicine

    “Karkazis. . . has produced a valuable, compelling account of historical, medical, and lived perspectives on the condition known as intersex or disorder of sex development. . . . Karkazis’s adroit scholarship—science illustrated in human terms-- makes a vital contribution to a complex, inadequately understood subject. Highly recommended. Lower-level graduates and above; general readers.” — P. Lefler, Choice

  • “I couldn’t put Fixing Sex down once I started it! Masterfully balancing all aspects of one of the most polarizing, contentious topics in medicine, this thoughtful book is destined to become the most recent authoritative treatise on intersex. Non-medical persons will find it easily digestible, yet it is a ‘must-read’ for every pediatrician and pediatric subspecialist caring for children with disorders of sex development.”—Kenneth C. Copeland, M.D., Jonas Professor of Pediatrics, University of Oklahoma College of Medicine, and former President of the Lawson Wilkins Pediatric Endocrine Society —

    “This book is a velvet-gloved punch to the gut. Fixing Sex is astonishing, a tale told straight from the mouths of affected adults, parents, and physicians in tender and lyrical prose. It resonated deeply with my memories of motherhood in the disorders of sex development community. But the chapters devoted to clinicians made me weep. A physician myself, I remember my disbelief as the worlds of intersex and medicine collided in my own family. An extraordinary book for a wide audience, it is a huge step toward reconciliation and spiritual healing for its protagonists.”—Arlene B. Baratz, M.D., family and medical consultant, Androgen Insensitivity Syndrome Support Group and Accord Alliance —

    “The cultural rules of gender are complex, and they are never more tested than in the case of intersex. Fixing Sex is a huge addition to the field, encompassing as it does the views of clinicians, patients, parents, and others. The topic is intrinsically interesting, but Katrina Karkazis’s wonderful writing makes this a compelling story and a great read.”—Abraham Verghese, M.D., author of The Tennis Partner and Senior Associate Chair for the Theory and Practice of Medicine, Stanford University —

    “This meticulous, sensitive, and brilliantly executed book will transform our knowledge of intersexuality, gender, and the ethnographic study of medical practice.”—Gayle Rubin, Assistant Professor of Anthropology and Women’s Studies, University of Michigan —

    “With her fascinating field data, Katrina Karkazis exposes the contentious disagreements among theoreticians, physicians, intersex adults, and parents—and all that those debates imply about the changing landscape of gender and intersex management.”—Suzanne J. Kessler, author of Lessons from the Intersexed

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  • Description

    What happens when a baby is born with “ambiguous” genitalia or a combination of “male” and “female” body parts? Clinicians and parents in these situations are confronted with complicated questions such as whether a girl can have XY chromosomes, or whether some penises are “too small” for a male sex assignment. Since the 1950s, standard treatment has involved determining a sex for these infants and performing surgery to normalize the infant’s genitalia. Over the past decade intersex advocates have mounted unprecedented challenges to treatment, offering alternative perspectives about the meaning and appropriate medical response to intersexuality and driving the field of those who treat intersex conditions into a deep crisis. Katrina Karkazis offers a nuanced, compassionate picture of these charged issues in Fixing Sex, the first book to examine contemporary controversies over the medical management of intersexuality in the United States from the multiple perspectives of those most intimately involved.

    Drawing extensively on interviews with adults with intersex conditions, parents, and physicians, Karkazis moves beyond the heated rhetoric to reveal the complex reality of how intersexuality is understood, treated, and experienced today. As she unravels the historical, technological, social, and political forces that have culminated in debates surrounding intersexuality, Karkazis exposes the contentious disagreements among theorists, physicians, intersex adults, activists, and parents—and all that those debates imply about gender and the changing landscape of intersex management. She argues that by viewing intersexuality exclusively through a narrow medical lens we avoid much more difficult questions. Do gender atypical bodies require treatment? Should physicians intervene to control the “sex” of the body? As this illuminating book reveals, debates over treatment for intersexuality force reassessment of the seemingly natural connections between gender, biology, and the body.

    About The Author(s)

    Katrina Karkazis is a Senior Research Scholar in the Center for Biomedical Ethics at Stanford University.

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