When Shakespeare asked what’s in a name, I doubt he was thinking about intersex, disorders of sex development, or how terminology can shape lives and obstruct social change. But I’ve been thinking about these issues since 2008, when I started exploring the language used to describe intersex people, that is, people whose bodies defy arbitrary markers of sex, including genital, chromosomal, and gonadal characteristics.
As an intersex person who has conducted research in the intersex community, I’ve seen how many of us have endured medically unnecessary surgery designed to “fix” our “abnormalities” so that we can more easily fit into our culture’s rigidly binary sex system, which recognizes male, female, and nothing in between. This surgery, and the lies that surrounded it in order to allegedly protect the development of my gender identity, has physically and emotionally scarred me, and many intersex people I know.
Since the early 1990s, intersex activists have organized to change intersex medical care and eliminate such harmful interventions. They have protested at medical association meetings, appeared on The Oprah Winfrey Show and 20/20, and, have been featured in the New York Times, among other outlets.
As I argue in my forthcoming book, Contesting Intersex: The Dubious Diagnosis (NYU Press, 2015), this public criticism put the medical profession under fire. For a time, it seemed unlikely that doctors could continue to treat intersex as they had been.
But that all changed in 2006, when a “Consensus Statement on Management of Intersex Disorders” renamed intersex “disorders of sex development,” or DSD for short. The statement was published in Pediatrics, the official journal of the American Academy of Pediatrics, and today DSD terminology has replaced intersex language in virtually all corners of the medical profession.
By renaming intersex—and specifically by calling it DSD—providers used the power embedded within diagnostic terminology to linguistically reinvent intersex, and thus to thwart our public criticism of their harmful practices. Medical providers no longer fix intersex—they treat disorders of sex development. But although medically unnecessary surgery on intersex bodies has continued, so has intersex activism.
In March, four intersex activists bravely shared their experiences with harmful medical care in a BuzzFeed video, “What It’s Like to Be Intersex?,” which already has over 1.3 million views. This video was part of a recent activist media blitz, which included a segment on ABC’s Nightline titled “Intersex Children: A Journey Between Genders.”
This intersex buzz got me thinking about how intersex activists, myself included, rarely, if ever, refer to disorders of sex development when we are talking about intersex—and for good reason, because such language pathologizes our personhood. I know I consciously avoid it in my writing, like in my piece “Standing with Susie the Dachshund.”
But now I’m left wondering if we are minimizing the potential effect of this current media boom by using intersex language, rather than DSD terminology, in our public discourse? If we do not engage with DSD terminology in the media, are we letting providers off too easy? Are we making it possible for them to escape our intersex buzz? Might new parents who were positively moved by the BuzzFeed video fail to make the connection between intersex and DSD when a doctor informs them that their child has a disorder of sex development that can be surgically “treated”? Could sympathetic medical students who tweeted the video or posted it on Facebook forget about our intersex community’s all-too-common harmful medical experiences when they interact with patients diagnosed with disorders of sex development?
I don’t want to suggest that intersex activists use terminology they find offensive, but I do wonder if the power embedded in medical terminology might once again be working against us.
One possible approach to this dilemma is to be strategically flexible about terminology. We could, for example, point out in interviews and media appearances that intersex is also controversially—and problematically—referred to as a disorder of sex development. We could also reclaim the acronym DSD by replacing “disorder” with “difference.”
Whatever strategy activists enact, we need to make sure medical providers experience the critical media attention they deserve when they continue to treat people having disorders of sex development without humanity, and refuse to listen to the needs of intersex families. Our intersex buzz needs to reach all its targets.
Georgiann Davis is Assistant Professor of Sociology at the University of Nevada, Las Vegas and author of Contesting Intersex: The Dubious Diagnosis (NYU Press, 2015). She is the current president of the AIS-DSD Support Group for individuals with differences of sex development.