Introduction: Lessons from the Octopus

The paternalistic surgery-centered model of intersex treatment has been incisively critiqued in recent years. Feminist and antihomophobic analyses have shown how traditional medical protocols privilege male genitalia and heterosexual relationships, in particular through the assumption that penis-vagina penetration within the context of heterosexual marriage is proof positive of a successful surgical outcome. And queer analyses have begun to show that the dichotomous ossification of a patient’s gender identity — another clinical goal — is both unrealistic and politically objectionable. First-person testimonies by patient advocates have largely substantiated these critiques of medical practice. There seems, then, to be a clear narrative of contestation and subsequent change emerging in the treatment of intersex. In other words, we have learned “lessons from the intersexed,” as Suzanne Kessler puts it, initially about genders and gonads, but subsequently about the meaning of ethical patient care.¹

Yet, the history of intersex treatment, which now includes the recent history of its ethical critique, is marked by a curiously disjointed temporality. If there is a lesson to be learned from the intersexed, it is structured by multiple deferrals: the deferred revelation of the outcome of David Reimer’s medical management, on which much intersex treatment has been based; the now seemingly self-evident barbarity of surgical procedures that for years appeared reasonable to many clinicians and parents; the difficulties of choosing treatments, even with informed consent, that will have effects at once long-lasting and unpredictable; the inherent latency in follow-up studies of clinical outcomes, with or without surgery; the dilemma of surgical improvement whereby progress for future patients requires the use of experimental techniques on patients in the present; the stubborn asynchrony between cultural change in gender politics (and sexual politics) and conservative tradition in medicine; and increasingly the time lag between, on the one hand, changes in medical nomenclature and policy and, on the other, the reform of medical practice apparently expedited by new terminology and protocols. In these and other ways, I argue that the most acute “lesson from the intersexed” is that intersex treatment in the present should always be considered, paradoxically, in the light of what may come after it. Hence this special issue’s title, “Intersex and After.”

Accordingly, the essays published here don’t constitute a manifesto for what comes after intersex; rather, they engage with the peculiar “afterwardsness” of intersex and its many lessons.² What happens to feminism after intersex? What happens to intersex after the shift in terminology from intersex to “Disorders of Sex Development” (DSDs)? What happens to clinical practice after multidisciplinary challenges to childhood genital surgery? What happens to the determination of sex and gender after intersex? What happens to the intersex body after surgery, and what might queer theory do about it? What happens to the meaning of ethics in intersex treatment, in the light of other types of body modification? These are some of the key questions considered by the authors of this special issue.

The first essay is “Progress and Politics in the Intersex Rights Movement: Feminist Theory in Action,” by Alice D. Dreger and April Herndon, authors with experience not just of the scholarly analysis of intersex treatment but also of strategic interventions into clinical practice through patient advocacy. Their work with the influential Intersex Society of North America to change medical protocols has been substantial. Dreger and Herndon draw on this range of experience in their essay, documenting the difficult but determined rise of intersex patient advocacy in the United States during the 1990s and examining its connections to the academy, particularly feminist studies, as well as to other kinds of activism, particularly LGBT rights. While there are continuities between intersex issues and issues of gender and sexuality, Dreger and Herndon caution that there are nevertheless significant discontinuities. To this end the authors discuss their involvement in the 2005 formulation of patient-centered standards of care for what have now (by some) been termed DSDs, in an effort to focus clinical attention on those aspects of intersex that, unlike gender and sexual identities, benefit from medical care.

The relation between nomenclature, bodies, and identities is investigated...