What's in a Name?: The Controversy over "Disorders of Sex Development"

Abstract

For a decade now, the two of us have taken a critical stance toward the medical treatment of children with conditions. While clinicians have been overwhelmingly focused on how to turn children with conditions into normal boys and girls, we have asked why bodies that violate gender rules require treatment at all, and we argued that it was the cultural need for a coherent gender--a single and sex, if you will--that drove what was often unethical treatment of these children and adolescents. Intersex, as we understood it, was largely a problem of meaning rather than of medicine: the gender-atypical features associated with conditions have been misconstrued as requiring intervention. So in 2006, when the U.S. and European endocrinological societies published a consensus statement announcing a significant change in nomenclature for those born with atypical anatomy, whereby variations on the term hermaphrodite and intersex would be replaced by the term Disorders of Sex Development, or DSD, we were faced with the question of the meaning of this new terminology and how to understand its implications for the treatment of conditions. (1) Controversy erupted almost immediately over the new nomenclature. The arguments for and against the shift echoed our own internal grappling with this terminology: did it reinforce the tendency to view gender-atypical bodies as pathological, or could it mark an important advance in the treatment of the underlying conditions so frequently associated with gender-atypical bodies? To what extent should we support and make use of the term in our ongoing critical work? One of us initially eschewed it, feeling it left conditions fully medicalized. (2) But our experience with parents and doctors also led us to acknowledge the limitations of the current labels, whose mere utterance could be fighting words. Struggling with the host of competing stakes, we finally found ourselves in a curious and at times uncomfortable position: critics of medicalization arguing in favor of its benefits. Tracing the history of the terminology applied to those with atypical anatomy reveals how these conditions have been narrowly cast as problems of gender to the neglect of broader health concerns and of the well-being of affected individuals. By raising the possibility of rethinking what counts as a medical concern, the new terminology can help to refocus medical care on lifelong health; it could thus not only contribute to improving medical care but also to promoting attention to affected individuals' quality of life. Development of Terminology For centuries, people with atypical anatomy have been labeled hermaphrodite. (3) By the late nineteenth century, a consensus emerged in medicine that gonadal histology was the most reliable marker of a person's true sex and that there were three classificatory types of hermaphroditism: male pseudohermaphroditism, female pseudohermaphroditism, and hermaphroditism. (4) People diagnosed with one of the forms of pseudohermaphroditism were those with either ovarian or testicular tissue whose phenotypes contradicted their true sex indicated by their gonads. Individuals possessing both ovarian and testicular tissue (either as one ovary and one testis, or as what is called an ovotestis) were considered hermaphrodites. Since the nineteenth century hermaphroditism was not only understood as a disorder but referred to a problematic type of person--a connection that would prove important in contemporary debates and in our own thinking. (5) The term has a more recent history. It was first applied to sexual ambiguity in moths in the early twentieth century. (6) Clinicians gradually adopted the term to refer to sexual ambiguity in humans, but its use over the intervening century has been inconsistent and variable. (7) Despite a few isolated instances referring to as a diagnosis (notably, an article by David Williams in 1952), clinicians have not viewed it as a diagnostic term. …