Historically, it has been common practice for doctors and parents to withhold the diagnosis from their minor intersex patients. This study seeks to integrate intersex…
Historically, it has been common practice for doctors and parents to withhold the diagnosis from their minor intersex patients. This study seeks to integrate intersex youth experiences into the growing body of literature on diagnosis disclosure for intersex patients.
Using gender structure theory as a model, 16 intersex youth were given in-depth surveys regarding their experiences with their intersex identity in individual, interactional, and institutional contexts.
Participants more positively experience intersex than the earlier generations of intersex people. They were not deeply troubled by their diagnosis as doctors have historically feared, and they are open about their diagnosis with their non-intersex peers and teachers. They also find peer support valuable.
Data was collected from a single event and cannot represent all intersex youth. Future research must continue to engage with intersex youth experiences both inside of and beyond activist and support group networks.
These findings are strong exploratory evidence for the importance of diagnosis disclosure for intersex youth. Policies of withholding intersex diagnoses in clinical and familial contexts should be reevaluated in light of the experiences of intersex youth.
Diagnosis disclosure for intersex youth creates the potential for increased medical decision-making participation and increased capacity for activism and community building around intersex issues.
Our results encourage future studies that center the experiences of intersex youth, for we conclude that theorizing the lived experiences of intersex people is incomplete without their perspectives.
Purpose – Intersexuality is examined from a sociology of diagnosis frame to show how the diagnostic process is connected to other social constructions, offer new support…
Purpose – Intersexuality is examined from a sociology of diagnosis frame to show how the diagnostic process is connected to other social constructions, offer new support that medical professionals define illness in ways that sometimes carries negative consequences, and illustrate how the medical profession holds on to authority in the face of patient activism.
Methodology/approach – Data collection occurred over a two-year period (October 2008 to August 2010). Sixty-two in-depth interviews were conducted with individuals connected to the intersex community including adults with intersexuality, parents, medical professionals, and intersex activists.
Findings – Medical professionals rely on essentialist understandings of gender to justify the medicalization of intersexuality, which they currently are doing through a nomenclature shift away from intersex terminology in favor of disorders of sex development (DSD) language. This shift allows medical professionals to reassert their authority and reclaim jurisdiction over intersexuality in light of intersex activism that was successfully framing intersexuality as a social rather than biological problem.
Practical implications – This chapter encourages critical thought and action from activists and medical professionals about shifts in intersex medical management.
Social implications – Intersexuality might be experienced in less stigmatizing ways by those personally impacted.
Originality/value – The value of this research is that it connects the sociology of diagnosis literature with gender scholarship. Additional value comes from the data, which were collected after the 2006 nomenclature shift.
Purpose/approach: This introduction provides an overview of the themes and chapters of this volume.
Research implications: The chapters in this volume present original research employing empirical and textual methods illustrating the complex responses and policy challenges posed by contemporary understandings and misunderstandings of the nature of gender. Various forms of gender panic and responses to it within individuals, institutions, national states, and the world society are explored.
Practical and social implications: Research demonstrates that gender panic can lead to potentially harmful reactions and fruitless policies that reinforce rather than dismantle the gender binary, thereby, impacting vulnerable members of societies.
Value of the chapter: The chapter and the volume are intended to illustrate the nature of current gender panics and related policies and to encourage further scholarship with the goal of promoting greater understanding as well as developing constructive solutions to issues raised.
Throughout the late 19th and early 20th centuries, one of the many techniques used by physicians and psychiatrists to diagnose patients involved external and highly public examination. Typically conducted as a lecture to other medical experts and students, the patient was placed in the center of a round room with onlookers arranged in tiered seating to guarantee an unobstructed view. As the lead physician detailed the list of symptoms, using the patient's body as an illustration, observers witnessed the behavioral signs for themselves and discussed the possible underlying conditions or pathologies. This process of consultation and naming worked to increase the relative reliability among experts and bolster the professional reputations of medicine and psychiatry alike (Conrad & Schneider, 1992; Gillis, 2006; Grob & Horwitz, 2010). As researchers have noted (Aronowitz, 2001; Foucault, 1973), this change from focusing on disparate, idiosyncratic symptoms as expressions of individual illness to a system that recognized disease states comprised of symptom clusters marks a historical turning point in the history of medicine. The shift toward a classification scheme that linked medicine with science and technology bolstered medical authority and the power of physicians. In addition to professional credentials, accumulated knowledge, and institutional legitimacy, the authority of modern medicine both rests on and is expressed by medicine's decisive power to name and categorize through diagnosis (Jutel, 2009). Even as medical prestige has eroded, ceding some of its power to other entities,1 physicians remain the final arbiter of official medical categories (Pescosolido, 2006), judges of what is, and what is not, a “real” diagnosis. In the diagnostic process, one looks within to reveal the nature of disease from without – empirical observation becomes immutable fact. Of course, as critical perspectives on medicine have long pointed out (Conrad & Schneider, 1992; Zola, 1972), the scientific “fact” of one time and place is the mythology or ignorance of another. Diagnosis, as both category and process (Blaxter, 1978), is infused with all manner of things social, historical, and cultural. This volume explores some of these infusions. In so doing, it aims to clarify and contribute to the emerging sociology of diagnosis – an endeavor first called for by Brown (1990), but more recently revived by Jutel (2009).