A Quiet Revolution: Medicine, Intersex Activism, and the Politics of Consensus

Abstract

Over the past few decades, multiple actors, including clinicians, researchers, activists, intersex adults, and parents of intersex children, have engaged in debates over what intersex is and how—or whether—it should be medically treated at all. The contemporary terrain of intersex, or what is generally considered atypical reproductive or sexual anatomy, remains contested, with updated clinical recommendations for what are now classified as “disorders of sex development” (DSD). In this dissertation, using tenets of social worlds/arenas theory and the tools of situational analysis, I demonstrate how these contestations about intersex are debates over who has the authority to classify and treat particular bodies and more broadly, the ways in which such debates raise questions about the credibility afforded to embodied experiences. Based on interviews with clinical specialists (urologists, endocrinologists, psychologists, and psychiatrists) and intersex activists, participant observation, as well as textual analysis, I trace the diverse actors and communities of practice that have variously engaged in collaborative efforts to classify, (re)define, and standardize the clinical management of intersex. Several key elements led to new clinical recommendations and DSD terminology, including technological advances, evidence-based medicine, and the emergence of health social movements, particularly intersex activism. However rather than resolving uncertainties, efforts at standardization have contributed to new sources of uncertainty. Intersex activists, as my findings show, take various positions around DSD, from pragmatic acceptance to staunch opposition, and employ embodiment in their collective efforts to achieve both medical and social change. Some intersex activists and organizations strategically endorse DSD in order to facilitate collaborative relationships with medical professionals and some parents. Others, many of whom reject DSD and are frustrated with the slow pace of medical change, have expanded their tactical repertoire to include legal and human rights advocacy to change medical practices. Clinicians are sensitive to many of the concerns raised by intersex activists, and I illustrate the ways in which they engage in multidisciplinary team-based care and promote patient-centered communications in order to engage patients and families. In doing so, they also face multiple challenges and negotiate various institutional, interprofessional, and interpersonal dynamics in their clinical work.