Gender Players and Gender Prisoners: When Intersex Activism, Medical Authority, and Terminology Collide

Between October of 2008 and April of 2011, over three-hundred hours of ethnographic observations in the public meeting spaces of intersex organizational meetings were recorded in addition to sixty-five in-depth interviews with intersex activists, the parents of intersex children, and medical professionals who are experts on such conditions. Data suggest the intersex rights movement has drastically shifted their mobilization strategy from a confrontational approach by protesting outside of medical association meetings in an effort to end the surgical modification of intersex children’s genitalia to a more a collaborative model where they work side by side with medical professionals. The abandonment of intersex terminology altogether in favor of disorder of sex development language (DSD, for short) introduced by medical professionals in the official journal of the American Academy of Pediatrics shows just how far the social movement has come. However, I have found that not all individuals impacted by intersexuality and/or involved in intersex advocacy embrace this nomenclature shift. The difference between those who embrace the newly re-medicalized terminology and those who reject it are as complex as intersexuality itself yet relate to their understanding of gender. This difference has left the movement divided with those collaboratively working within the medical institution gaining necessary institutional support from medical professionals while strengthening familial relationships, but such comes at a cost of increased sense of shame, secrecy, worry, and frustration about being differently bodied. I label these individuals “gender prisoners” because their emotional health and well-being is constrained by their conceptualization of gender. Those who reject the medicalized DSD terminology find it more difficult to access medical and familial support, yet they are more comfortable in their bodies with very little concern about their “abnormality.” I label these individuals “gender players” because they “play” on the periphery of the gender structure by using social constructionist arguments about gender to embrace their “abnormality” in empowering ways.