Georgiann Davis’ Contesting Intersex: The Dubious Diagnosis is a compelling sociological assessment of the intersex rights movement in the United States and is an excellent read for anyone who wants to learn more about the current state of intersex activism. Using insights from the sociology of diagnosis, interviews with various stakeholders in intersex health care, and the work of major intersex organizations Davis effectively argues the medical profession introduced Disorders of Sex Development (DSD) nomenclature in order to reassert their jurisdiction over the intersex body after activists had successfully challenged their authority.
In her examination of the strategies currently employed within major intersex organizations such as Accord Alliance and the AIS-DSD Support Group Davis finds today’s intersex activists tend to take on strategies of contested collaboration with medical professionals rather than collectively confront medical authority like they have in the past. As part of this shift many organizations focused on intersex activism have adopted DSD nomenclature over the last decade in spite of how it inevitably pathologizes intersex bodies. While these less confrontational strategies have been useful for opening up conversations between intersex activists and the medical professionals who wish to care for them as well as for increasing access to biological citizenship for certain intersex people, there is always the danger that working with medical professionals may turn into working for medical professionals. Meanwhile intersex infants and children are still subjected to medically unnecessary surgeries with lifelong consequences despite formal changes on paper strongly advising against such “treatments.” Only now medical professionals can justify these practices in reframing their actions as part of treating abnormalities under the umbrella term Disorders of Sex Development. These findings act as a warning to activists that while collaborative strategies such as the use of DSD nomenclature may get us in the room and help some of us gain access to biological citizenship they can easily be co-opted, used to strengthen medical jurisdiction over intersex bodies , and create divisions within the community. To avoid these pitfalls Davis recommends cautious flexibility when it comes to terminology choices and collaborating with medical professionals and argues for strategic combinations of confrontational and collaborative strategies when seeking to transform intersex medical care.
Along with this analysis Davis also offers her own perspective as an intersex person diagnosed with Androgen Insensitivity Syndrome. Throughout her analysis Davis shares aspects of her own experiences with intersexuality and how her personal experiences with the topic affect her work as a sociologist. This makes Contesting Intersex a very personal work as well as an academic one. Such a personal touch is excellent for readers of similar intersex experiences.
Then there is the analysis of the various views and linguistic strategies of intersex people. Over the course of the research process Davis interviews members of various intersex organizations on their views concerning terminology. These views ranged from those who take on the new DSD nomenclature to those who embrace an intersex identity to those who are flexible in their language choices. Together these interviews yield important insights into the wider debate over terminology within the community at a macro-level as well as how individuals approach language on a micro-level. This includes the benefits and drawbacks of each position for individuals and communities, especially when interacting with families and medical professionals. The one limitation of these interviews is the participants are predominately white, upper to middle class, college educated adults with access to support group memberships, conferences, medical services, and the internet. Hence the issues intersex people who do share in these privileges are left out. However, even with these limitations, this portion of Davis’s investigation does generate questions for further research and offers important insights into intersex issues and community at this point in history.
Beyond the intersex community other stakeholders in intersex health care may find Contesting Intersex valuable for expanding their knowledge of the community and what it means to be intersex. This includes parents and medical professionals brave enough to listen. For this reason I would recommend Contesting Intersex to those who are intersex as well as those who love them and wish to care for them.