Bodies in Doubt: An American History of Intersex

EPILOGUE. Divergence or Disorder? The Politics of Naming Intersex

153 epilogue Divergence or Disorder? The Politics of Naming Intersex In the time that it took to write this book, the term “intersex” has come under scrutiny and is the subject of much debate from many quarters. The epilogue will analyze the current controversy, placing it in the historical context of over three hundred years of intersex management in this country. Though the disagreement centers on what to call “intersex ,” its ramifications are much more than lexicological. Indeed, the debate underscores the central dilemma of this book: the evolving perception of atypical bodies, particularly bodies that raise our anxiety level because they seem to muddle clear gender divisions. Readers will come to see, I hope, how our contemporary standpoint is no less fraught with cultural biases than our predecessors’. Understanding the naming issue from an informed historical perspective may help us to see how we have arrived at this point and where we might go from here. As a historian, I am accustomed to thinking about change over time, and I know that change often happens slowly. Not so with the recent nomenclature shift in the world of intersex. In medical settings, many of the conditions previously grouped under the broad categories of “intersex” and “hermaphroditism” are now generally being called “disorders of sex development” (DSDs). The new term was agreed upon in October 2005 at a conference hosted by the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology (hereafter called the Chicago Consensus Conference) and is quickly becoming ubiquitous. Though participants at the Chicago conference reached the decision to change the nomenclature by consensus, it has not been universally embraced. Each of these three terms—“intersex,” “hermaphrodite,” and “disorders of sex development”—is controversial and divisive. Here I suggest a modified new term, “divergence of sex development.” Having 154 bodies in doubt surveyed the history of medical management of intersex conditions and recognizing the distrust it has created, I hope that you agree that using “divergence of sex development”—and eschewing the loaded word “disorder ”—might reduce conflict and satisfy intersex people, their parents, and physicians. How to name diverse conditions involving aspects of external genitalia, sex chromosomes, internal reproductive anatomy, and gender identity raises political as well as medical questions. The choice of nomenclature influences not only how doctors interpret medical situations but, also and as important, how parents view their affected children, how intersex people understand themselves, and how others outside medical settings— such as gender and legal scholars, historians, and media commentators— think, talk, and write about gender, sex, and the body. The three terms, “hermaphrodite,” “intersex,” and “disorders of sex development,” might seem synonymous, but there are significant differences , and their use has controversial consequences. “Hermaphrodite” and “hermaphroditism,” as we have seen, are archaisms that can still be found in medical writings, but they are vague, demeaning, and sensationalistic . Historically, “hermaphrodite” has been one of the more neutral descriptors; derogatory terms such as “freak of nature,” “hybrid,” “impostor ,” “sexual pervert,” and “unfortunate creature” pervade early medical literature. In an 1842 article on malformations of the male sexual organs, for example, one doctor referred to “these mortifying and disgusting imperfections.”1 As the word “hermaphrodite” continues to evoke images of mythical creatures, perhaps even monsters and freaks, it is not surprising that people would want to avoid the label. Starting in the early 1990s, activists instead advocated “intersex” (first introduced by the biologist Richard Goldschmidt in 1917) to describe the set of conditions previously called hermaphroditism—namely, discordance between the multiple components of sex anatomy.2 The Intersex Society of North America (ISNA), founded by the intersex activist Cheryl Chase in 1993, sought to erase the stigma perpetuated by negative labeling and support those with congenital conditions that fall under that rubric . While most often using “intersex” to refer to themselves, some of the affected as well as their supporters also consciously reclaimed the term “hermaphrodite,” co-opting the negative label in a bold effort to call attention to their concerns and to dispel pathological connotations associ- Epilogue 155 ated with these conditions.3 “Intersex” thus took on a political valence, as many of the intersexed proudly sported t-shirts that proclaimed themselves “Hermaphrodites with Attitude” and, wearing these shirts, protested at medical conferences against stigmatization and unnecessary infant genital surgeries.4 Some parents, though, were uncomfortable with the “intersex” label for their affected children. To them, “intersex” meant a...