Open Letter from Monica Casper, Ph.D.
Executive Director, Intersex Society of North America (ISNA)
To the Presidents of the NAS and IOM
 
May 28, 2003

 

 

Bruce Alberts
President, the National Academy of Sciences
The National Academies
2101 Constitution Avenue NW
Washington, D.C. 20418

Harvey V. Fineberg
President, the Institute of Medicine
The National Academies
2101 Constitution Avenue NW
Washington, D.C. 20418

Dear Dr. Alberts and Dr. Fineberg:

I am writing at the suggestion of Lynn Conway, a member of the National Academy of Engineering, to offer comment concerning the controversy surrounding publication of The Man Who Would be Queen by J. Michael Bailey. I am not directly involved with the transgender/transsexual community nor am I transgendered, but I run an advocacy and policy organization focused on intersex issues and consider transgendered people allies and supporters of our work. In addition, I am an academic researcher in medical sociology, sex and gender studies, and bioethics. I am currently on extended leave from the faculty of the University of California, Santa Cruz while serving as Executive Director of the Intersex Society of North America.

At the outset, let me state that my comments here do not pertain primarily to the quality or content of Bailey's book. Nor do I wish to protest publication of the book. As a scholar who has published two books on controversial topics-one on fetal surgery and one on environmental health-I am well aware of the need for academic freedom and the corresponding great need for peer review. However, I also believe that academics must be responsible in using their freedom; we must be ethical in our data collection and analysis practices, and in our relationships with the communities we purport to represent.

It is not clear to me that Dr. Bailey has behaved responsibly as a researcher. Letters to NAS from Dr. Joan Roughgarden at Stanford University as well as others, made public through internet resources, identify several methodological and ethical flaws in Dr. Bailey's research design. I believe the National Academies, especially, as one of the nation's highest intellectual authorities, have an obligation to ensure that research supported and published by NAS meets at least minimal scholarly standards.

I implore the leadership and membership of the National Academies to take the Bailey controversy seriously along the grounds suggested by Ms. Conway, Dr. Roughgarden, Ms. Christine Burns from the UK, and other transgendered people in recent correspondence directed to you. Releasing the book under the imprimatur of the NAS confers a degree of legitimacy and approval that suggests we need to assess such work through an even more stringent measure of peer review. In addition, as a researcher, I have not yet been satisfied with Dr. Bailey's reaction to claims that his methods are shoddy nor the fact that some of his informants have come forward discrediting his arguments. I believe the transgendered community and others have raised important issues about NAS sponsorship of the book, as well as methodological flaws in the study.

Ms. Conway hoped that I might also be able to offer some much needed historical and sociological insight into the field of sex research from the perspective of the intersex community, which has been damaged by research and biomedical treatment. I see clear parallels here between intersex research of three decades ago and contemporary research on transsexualism such as that espoused by Dr. Bailey and others. I also see parallels to another historical case study that would be worth your review: efforts by the lesbian and gay community to have "homosexuality" removed from the DSM. In all of these cases-intersex, homosexuality, and transsexualism-bodies that look and behave differently than we might expect, or look and behave outside the "norm" as it is constituted through social practices, are pathologized and subject to dehumanizing research and "treatment."

In the case of the Bailey volume, theories about "homosexual transsexuals" and "autogynephiles", themselves suspect, may have lasting impact on the future of sex research, on social acceptance of transsexualism and transgendered people, on health care for vulnerable and marginalized populations, and on human rights discourses and practices. Bailey himself has remarked that "we" must study "them"-that is, non-transsexuals/transgendered people must study the transgendered-so that we can better understand and accept them. However, above and beyond the problem of portraying transgendered people as specimens on a slide, this view sounds suspiciously like what we hear from physicians specializing in intersex treatment. Surgery on intersex infants is seen as "for their own good"-just as treatments such as hysterectomy were once performed for "women's own good" and electroshock was once performed for "homosexuals' own good."

Let me focus here on the history of intersex. In the 1960s, psychologist John Money advanced a then-radical idea: that gender could be socially shaped rather than biologically determined. In the ongoing battle between those scholars who advocated a "nature" argument and those who advocated a "nurture" argument, Money came down firmly on the side of nurture. At the time, with much of the Western world caught up in the sexual politics and civil rights movements of the decade, the nurture thesis offered a welcome nod of approval from the academy. Feminists, biologists, endocrinologists, and others all supported the nurture thesis and began building theories, research careers, and biomedical practices around it. These ideas contributed significantly to new scholarship in feminist studies, sex and gender research, psychology, biology, and various fields of medicine. However, these ideas also created a lasting negative impact on people with intersex conditions.

Dr. Money believed so strongly that a child's gender could be socially determined that he advocated gender assignment for infants born with intersex conditions. Intersex is an umbrella term for a constellation of conditions leading to genital and/or reproductive anatomy that is not considered standard for males or females. Intersex affects approximately 1 in 2,000 births, and in some cases ambiguity is strong enough that determination of male or female is quite challenging. Given that we live in a highly gendered society, with male and female categories defining everything from behavior and appearance to social institutions, such ambiguity is considered deeply problematic. Indeed, the American Academy of Pediatrics currently defines intersex births as "a psychosocial emergency." For Money, there was a relatively simple solution to the problem of intersex: gender assignment in infancy (preferably before age 2), and reinforcement by surgery, prescription hormones, and social practices such as dress, play, and language.

Money's research became the foundation for intersex "treatment", in which children born with intersex conditions have been subject to "normalizing" cosmetic genital surgery as infants. In the vast majority of these cases, there is nothing physiologically wrong with these children; they merely have genitalia that do not "measure up" to society's standards of normal male and female anatomy. As a number of adult intersexuals and scholars of intersex have pointed out, these surgeries carry risks of death, incontinence, loss of sexual pleasure/function, further surgeries, and stigma. Many adults who as children had surgery such as clitorectomy or removal of their gonads report that their genitalia look anything but normal, and that the secrecy surrounding their treatment and gender assignment created lasting trauma and shame.

This is an important point, as secrecy was a hallmark of Money's ideas and has also inflected much work on transgendered populations. He believed that parents must be fully supportive of the gender assignment; the less they knew about the ambiguity, the better. So for decades, parents were lied to about their child's condition. They were told that the true sex/gender had to be discovered through tests, rather than assigned. And when gender assignment was made, it was made overwhelmingly by doctors with little parental input. Money's ideas were thus adopted wholeheartedly by the medical establishment, which even today continues to operate on five babies a day in the U.S. alone to normalize intersex anatomy. These surgeries proceed in the absence of any clinical trial suggesting that surgery is the best option, and in the absence of any long-term follow-up study. There has also been relatively little quality of life research on intersex people regardless of treatment status. What resources we do have, such as recent research by Sharon Preves, Alice Dreger, adult intersexuals, and physicians Catherine Minto and Sarah Creighton, illustrates that intersexuals suffer from poor quality of life, particularly if they were treated surgically as infants. Minto et al., reporting in the Lancet, found that a majority of women whose clitorises were reduced or removed experienced long-term sexual dysfunction and psychological difficulties.

Treatment for intersex is shrouded in controversy in part because of the efforts of the intersex patients' rights movement, but also in part because John Money's ideas, and much of sex research generally, have come under fire. The much-publicized case of David Reimer, referred to as the "John/Joan" case in the clinical and psychological literature, has discredited John Money, who was found to have lied repeatedly about his research methods and findings. Reimer's penis was accidentally burned off during routine circumcision by electrocautery when he was eight months old; he was later castrated (at age 22 months) during sex reassignment when his testes were surgically removed. Money convinced the boy's parents to raise him as a girl, with disastrous consequences. Yet while David Reimer struggled in real life with gender identity issues, Money continued to advance his theories using John/Joan as a "successful" case study of sex reassignment. He claimed that the child was perfectly well-adjusted and had no gender identity issues. Milton Diamond and Keith Sigmundson revealed these findings in their March 1997 article in Archives of Pediatric and Adolescent Medicine. The publication in 2000 of John Colapinto's book As Nature Made Him, based in part on the Diamond and Sigmundson research, revealed Money's deception to a much broader audience.

However, despite the discrediting of Money's theories and the outspoken presence of intersex activists and advocates, medical "treatment" of intersex children continues apace. It is precisely with respect to this issue-the nexus of scientific theories and social practices such as medical treatment-that intersex is relevant to the Bailey controversy. As any scholar knows, ideas have consequences. In the case of intersex, Money's ideas about sex and gender have had consequences in the bodies and lived experiences of hundreds if not thousands of people with intersex conditions. And while a healthy debate about those ideas has been going strong for a decade, such theories have proven remarkably resistant to change. Some ideas, once radical, become so taken-for-granted that they come to be seen as natural. The transgendered community, who stand to be most affected by Bailey's theories about sex and gender, deserve to be heard on this issue, just as people with intersex conditions have been a major part of challenging John Money's research.

I have enclosed for your review several materials that may be of use in better understanding the history of intersex research and practice. I hope that this controversy helps to shed light on the Bailey affair, and that it helps you to compassionately, ethically, and reasonably respond to the concern of the transgendered community and others.

Thank you for your interest and time. Please do not hesitate to contact me with questions or if you need additional information.

Sincerely,

 

Monica J. Casper, Ph.D.
Executive Director

(Associate Professor of Sociology,
University of California, Santa Cruz,
on leave 2002-2005)

 

Encl.