Making Sense of Intersex

Changing Ethical Perspectives in Biomedicine

Ellen K. Feder

• Publisher: Indiana University Press
• Year: 2014
• Print ISBN: 9780253012289
• eBook ISBN: 9780253012326
• Topic: Philosophy
• Subtopic: Ethics in Medicine

A philosopher offers a framework for the treatment of intersex children, and a moral argument for responsibility to them and their families. Putting the ethical tools of philosophy to work, Ellen K. Feder seeks to clarify how we should understand "the problem" of intersex. Adults often report that medical interventions they underwent as children to "correct" atypical sex anatomies caused them physical and psychological harm. Proposing a philosophical framework for the treatment of children with intersex conditions—one that acknowledges the intertwined identities of parents, children, and their doctors—Feder presents a persuasive moral argument for collective responsibility to these children and their families. "In a voice both urgent and nuanced, Feder squarely faces the complexities that accompany the care of people with atypical sex anatomies in medical science.... Rich with cross-discipline potential, Feder's engaging argument should provide a new approach for doctors and parents caring for children with atypical sex anatomy." — Publishers Weekly, starred review "Feder's book is a welcome injection of new ideas into feminist scholarship on intersex, post-Consensus Statement era." — Women's Review of Books "Is a work of philosophy capable of bringing insightful new perspectives or illuminating and forceful arguments to an urgent social matter so as truly to effect a felt change in the lives of people concerned by it? Feder's book is capable of this effect. As such, it takes the risk of calling forth a new public, or a new readership, and so is a work whose appeal could well be ahead of its time. But its time should be here." — International Journal of Feminist Approaches to Bioethics " Making Sense of Intersex significantly enhances our understanding of intersex and the ethical issues involved in medical practice more generally." — Kennedy Institute of Ethics Journal

1 The Trouble with Intersex

History Lessons

In a Short talk he delivered in 2000 at the American Association for the History of Medicine, pediatric endocrinologist Jorge Daaboul reflected on the revelatory character of history in his own practice. He recounts that he had begun to have serious doubts about the standard of care that made imperative the surgical normalization of atypical genitalia in children. Though this was the standard in which he had been trained—in the tradition of Lawson Wilkins, the founder of pediatric endocrinology, and John Money, the preeminent psychologist of sexual difference—he began to pose to his colleagues the questions he had come to ask himself, namely, whether the standard was genuinely in the best interests of their young patients. The uniform responses to his questions, he told his audience in 2000, yielded two arguments in defense of the standard. First, “intersexed individuals,” his colleagues told him, “could not possibly live normal lives as intersexed individuals and . . . the only chance they had for happiness and psychological well being was the establishment of a secure male or female gender identity. Second, there simply was no precedent for [such individuals] living as normal people in our society” (Daaboul 2000).

Just at the time that he was engaged in these conversations, Daaboul went on to say, he read Hermaphrodites and the Medical Invention of Sex (Dreger, 1998b), Alice Dreger’s account of the Victorian “discovery” of hermaphroditism. From Dreger’s history he learned that until the late nineteenth century, individuals with intersex were not automatically objects of medicine as he had been trained to see them; until the start of what Dreger calls the “Age of Gonads” (1870–1915) (29), people with atypical sex anatomies in England and France lived unremarkable lives. It couldn’t be, Daaboul realized, that it was necessary to correct the bodies of individuals with atypical sex in order to secure their happiness. The category of “the normal,” which he had been trained to see as natural and necessary, was all at once a historical artifact. “For me,” he concludes,

the study of history proved invaluable in my formulating an approach to intersex. The moment I realized that there was a historical precedent for individuals with intersex leading happy, normal productive lives I revised my approach . . . and have become a strong advocate of minimal intervention. The study of the history of intersex gave me the knowledge to improve and refine my approach to this condition. Consequently, I am a better doctor to my patients. (Daaboul 2000)

Daaboul’s account is compelling. It is a remarkable personal story of transformative insight ignited by the study of history and an understanding that truths one has taken for granted may be contingent—that is, neither necessary nor inevitable, but the result of human practices, actions, and ideas. In the case of atypical sex, these include truths about sex and gender, about normality and abnormality, about sickness and health. That is not to say that these categories, and what we take to be our natural responses to them, do not matter; they obviously do, for these categories are the ground from which we make sense of ourselves and each other. It is to say that what we may take to be “the way things are” could be different. Daaboul’s reading of Dreger’s historical account belied the training that had inculcated in him a certain vision of the way things are, of how they always would be. He now understood that many of the ways he had been taught to see the world and his patients ought to be challenged. It was this understanding, he says, that enabled him to be a “better doctor to [his] patients.”

Daaboul’s lesson in history invites a closer look at the meaning of the changes that prevailing beliefs, attitudes, and treatment concerning those with atypical sex have undergone. What may not be clear from Daaboul’s account is the historical tension between competing views of atypical sex anatomies as a threat to the social body literally embodied by those with what was called “doubtful sex” (Dreger 1998b, 41), on the one hand, and the view that intersex is a danger to the health and well-being of those individuals with atypical sex anatomy, on the other. If this tension is not fully evident in his account, I would suggest that it is because the history turns out to be more complicated than Daaboul could have known at the time of his presentation. Daaboul’s identification of his own training in the traditions of Wilkins and Money is right, I suggest in the first part of this chapter, but unraveling the threads that identify Wilkins and Money so closely lays bare important tensions in the ways that atypical sex anatomies are constituted as a “threat,” first to the social order, and then to the individual who bears the alleged affliction. These competing views—the first marking the late nineteenth and early twentieth centuries, and the second the emergence from that period—intertwine in the mid-twentieth century, precisely at the point when the training Daaboul himself underwent as a physician was shaped. Existing historical accounts suggest that it was this dual constitution of the threat posed by atypical sex that prevailed at least through the end of the twentieth century. Using Daaboul’s presentation as a guide, I want to clarify the historical developments that can help to make sense of how the commitments to care for “individual well-being” and what we might call “social adjustment/accommodation” may be at once in concord and conflict.

It is not often that ordinary people recognize that they are at a crossroads of historical change, and it is not entirely clear that when Daaboul made his presentation he was aware of the position he occupied in this regard. The explicit aim of his presentation was to argue for the importance of an historical sensibility, but more than a decade later we know that it is also evidence of his own place in the recent history of the medical management of atypical sex that begins with the founding of the Intersex Society of North America (ISNA) in 1993. In the second part of the chapter, I discuss another important element of this history: normalization. Michel Foucault’s understanding of the power of “normalization” can help us make sense of the history of medicalization and its repressive influence; it can also guide our understanding of the significant changes that occur at the beginning of the twenty-first century, when the work of activists, academics, and a growing number of physicians critical of the standard of care resulted in the meetings of the U.S. and European endocrinological societies in 2005 and the publication of a groundbreaking Consensus Statement in 2006 (Hughes et al., 2006). These meetings heralded significant change, including the replacement of the nineteenth-century diagnostic nomenclature. Foucault’s account of normalization is perhaps particularly helpful in examining and reckoning with what are evidently “repressive” effects of the history of medicalization, which in his view begin in the Victorian period, as well as what I argue we should regard as the positive possibilities marked by the changes announced in the 2006 statement.

Focused on removing sexual ambiguity, medical management of atypical sex anatomies since the mid-1950s has emphasized medical (and especially surgical) fixes for what might otherwise be understood in contemporary terms as social, political, or psychological matters of sexual identity. One might reasonably ask why it wouldn’t be simpler to take intersex conditions out of medicine altogether, to “demedicalize” conditions that might otherwise count as ordinary human variations. The case for understanding differences in genital appearance as matters of variation is undeniably convincing, and yet there is an equally compelling case that some of the conditions with which genital variation are associated bring genuine health challenges that require not less, but substantially more, medical attention than has been afforded them. The best example, and the one on which this chapter focuses, is the case of congenital adrenal hyperplasia (CAH), a condition that in some forms poses grave dangers to an individual’s health. Understanding the history of the medical management of atypical sex anatomies in general requires careful study of the treatment developed by Lawson Wilkins at Johns Hopkins University for treatment of CAH in particular. Wilkins’s work is significant not only for the consequential advancements in the care of children with CAH for which he is rightly celebrated, but also because the surgical normalization of affected females with CAH became a generalizable model for managing atypical sex anatomies figured as a problem to “fix” in early childhood. While pediatric research on the pathophysiology of CAH begun by Wilkins still thrives today and continues to advance in major medical centers nationwide, including at the National Institutes of Health, it is striking that, given that CAH is a disease that may require lifelong management, there is no comparable work that investigates the effects and management of CAH into adulthood.¹ To understand how care for those with atypical sex continued to emphasize matters of appearance over those of health through the end of the twentieth century, we must look more closely at the history of medicalization of atypical sex. As different historians have provided detailed accounts of key eras that make up this history, we may trace a development in the treatment of atypical sex anatomies, but this history does not move in linear fashion. Rather, there is a kind of cyclic movement constituting atypical sex as a threat, first to society, then to individual well-being and back again.

From the Victorian Age to the Clinical Age: Circling Forward and Back into the Past

Dreger’s Hermaphrodites and the Medical Invention of Sex recounts the moment at which the threat of doubtful sex becomes, for medicine, something that must be carefully measured, classified, and mastered. Interest in hermaphroditic bodies was at once entirely characteristic of the modernization of medicine that took place in Western Europe in the late nineteenth and early twentieth centuries, interested as it was in measuring, classifying, and mastering knowledge of the human body and its functions, normal and aberrant. It was also distinctive: hermaphroditism would prove an inordinately rich object of scientific and medical interest that combined medical and scientific curiosity and concern with managing a social menace.² The publication of the cases of hermaphroditism that fascinated and preoccupied late nineteenth and early twentieth-century physicians occurs just at the time that transcontinental dissemination of one’s observations and findings became a mark of one’s professional distinction (Dreger 1998b, 61). It is no coincidence that this period coincides with what Foucault identifies as the shift in medicine from a reliance on the judgment of individual patients with respect to their health to the expertise of the physician authorized to make judgments and to treat them. As Daaboul notes, it does not appear that immediately preceding the period that Dreger studies, atypical sex was the problem he and his cohort understood it to be. Furthermore, the cases that span the developments Dreger traces—of Marie-Madeline Lefort or Herculine Barbin in France, and Louise-Julia-Anna or “S. B.” in England, for example—were cases of “mistaken sex” that posed significant challenges to a social order that depended on the clear and verifiable distinction between the sexes. Cases that did not present such challenges, one expects—because they were not written up and disseminated, or because people did not consult doctors or surgeons to the extent that they eventually would come to—were not extraordinary. In an era without sophisticated surgical practices, and in the absence of any genuine uncertainty of sex assignment by an individual or a physician, one would expect that the majority of cases of “genital ambiguity” that Daaboul would encounter in his practice at the end of the twentieth century would not have caused particular consternation in a social climate where anatomical variation would be unremarkable and not regarded as the problem it would become in the middle of the next century.

Attending to the gap that Daaboul identifies between practices at the end of the twentieth century and those preceding the “Age of Gonads”—before “hermaphroditism” became an object for modern European medicine to diagnose and to manage—requires that we look at the interval between the Victorian era and the period Daaboul locates in the mid-1950s, when John Money began work at Johns Hopkins University’s pediatric endocrinology clinic. Daaboul’s recounting of history falters here—not because he traces the origins of his own discipline to the work of Wilkins, the “father” of pediatric endocrinology, but because he so closely identifies the critical part of Wilkins’s work at mid-century, when, we learn from historian Sandra Eder, it belongs to an earlier period, preceding the Second World War. The error turns out to be consequential for the understanding of the history, as we will see, because the objects of medical practice in the mid-1930s differ significantly from those twenty years later. Understanding that difference, I argue, is critical for identifying the ethical problems we must confront today. But there is a further wrinkle in the history of pediatric endocrinology (and psychoendocrinology) that we find in the corollary history of normalizing genital surgery with which pediatric endocrinology is also bound. Wilkins shared a number of pediatric patients with his senior colleague at Johns Hopkins, renowned surgeon Hugh Hampton Young, “the Father of American Urology,” as described in his 1947 obituary (Wesson 1947, cited in Kenen 1998, 37). Young earned this title with his treatment of men with enlarged prostates, but he was also a founder of the Journal of Urology, still the leading journal in the field today. Young’s extensive practice of surgical sex reassignment—what usually entailed the reshaping of sex anatomy of a child with typically male (46,XY) chromosomes so that the child could appear, and function, as a girl—locates him fundamentally as a late nineteenth-century figure who brings urological surgical practice into the modern era, even as his concerns and interests appear to have remained in the preceding era. In contrast to what appears to be Wilkins’s interruption of the prevailing concern with doubtful sex as a threat to the social body, we might understand Young’s to be a dogged insistence on this view, one that may have been motivated and reinforced by the surgical advances he pioneered.

In his account, Daaboul traces his once-secure faith in the standard of care to the specialized training he received, a training established by Lawson Wilkins. It was Wilkins’s founding of a fellowship in pediatric endocrinology in the 1950s at Johns Hopkins Hospital that produced the leaders in the field whose influence continues still. According to Daaboul, Wilkins had trained nearly every physician who in the 1960s would go on to become program directors of pediatric endocrinology; for this reason, most pediatric endocrinologists practicing today, he says, are “descended” from Wilkins. That the Pediatric Endocrine Society was, from its founding in 1972 until 2010, called the “Lawson Wilkins Pediatric Society” is a testament to the abiding strength of Wilkins’s legacy and its continued influence.

Wilkins’s opening of a fellowship program occurred precisely at the point when the newly minted psychologist John Money began work at Johns Hopkins to assist Wilkins in the psychological counseling of, and research concerning, Wilkins’s patients. Most anyone who knows anything about the medical management of intersex today will readily identify the prevailing standard of care with the work Money carried out from that time until his death in 2006. But those outside of the field will likely not recognize the importance of Wilkins’s work, which occurred in the interval between the end of the European era that Dreger’s history details (in the 1910s) and the beginning of the mid-1950s, the point to which Daaboul traces the origins of his training.³ Indeed, the history in which Daaboul locates himself should more precisely be understood to have begun two decades before Wilkins’s establishment of the fellowship in pediatric endocrinology, in Wilkins’s 1936 opening of the endocrinology clinic in the nation’s first pediatric medical center, Johns Hopkins University’s Harriet Lane Home.

Sandra Eder’s history of Wilkins’s work fills in a picture that validates Daaboul’s and his colleagues’ loyal faith in their founding father and, by extension, their high regard for Wilkins’s treatment of children with CAH, still the most frequent cause of atypical sex in girls throughout the world. CAH is a genetic disorder that involves malfunction of the adrenal glands. It affects males and females in equal numbers, and both may suffer from metabolic problems soon after birth (when it is usually detected) and throughout one’s life. In the “classic,” salt-losing form, it results in vomiting and dehydration and, if left untreated, can lead to death. Increased vulnerabilities—caused by ordinary illness or injury that can exacerbate various sorts of imbalances associated with CAH—are among the problems that require careful attention in early childhood and beyond. CAH also prompts premature development of bone growth, which ultimately results in adult short stature—a particular concern for affected boys—and of secondary sex characteristics. In addition to metabolic problems, what Wilkins called the “androgen push” may result in virilization of sex anatomy, which can make a male look, as Wilkins put it, like an “infant Hercules” (Eder 2012, 71) and can make a genetic female appear more like a male.

Wilkins’s treatment was groundbreaking in a number of ways, but first and foremost for the detailed clinical understanding he developed of the disease and its effects. Wilkins’s years of study of the disease led, in 1949, to his first attempt to determine whether CAH would be responsive to cortisone, reported by a Mayo Clinic physician to bring dramatic relief of rheumatoid arthritis (Eder 2012, 73). Wilkins refined the administration of cortisone over several years. It did not lead to the promised cure of the condition, but when administered in the dose appropriate to each individual patient, cortisone could control the effects of CAH, which encompassed a range of what most would regard without controversy as ailments.

Examination of the history of CAH is a complicated matter. Though today it is clear that there is a close identification of genuine medical problems caused by CAH with the social problem atypical sex is taken to present, this was not always the case. Indeed, there is little evidence that “hermaphroditism” during the period Dreger studies was associated with any condition we would regard as a disease or malady, as most forms of CAH obviously are now recognized to be.⁴ In other words, it was not the fact that atypical sex posed a medical...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Acknowledgments
• Introduction. Disciplinary Limits: Philosophy, Bioethics, and the Medical Management of Atypical Sex
• 1 The Trouble with Intersex: History Lessons
• 2 “In Their Best Interests”: Parents’ Experience of Atypical Sex Anatomy in Children
• 3 Tilting the Ethical Lens: Shame, Disgust, and the Body in Question
• 4 Reassigning Ambiguity: Parental Decisions and the Matter of Harm
• 5 A Question of Ethics as/or a Question of Culture: The Problem of What Is and What Ought to Be
• 6 Neutralizing Morality: Nondirective Counseling of Parents of Children with Intersex Conditions, 2006–
• 7 Practicing Virtue: A Parental Duty
• 8 Protecting Vulnerability: An Imperative of Care
• Conclusion. Lessons from Physicians
• Notes
• References
• Index