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Contesting Intersex: The Dubious Diagnosis

Georgiann Davis, intersex educator and advocate, seeks to inform the current sociopolitical discourse on the subject through her new book.

Research  |  Dec 15, 2016  |  By Dan Michalski

Georgiann Davis presents "This Girl Has Balls" at TEDxUNLV Living in the Extreme, held in the Black Box Theatre on April 8, 2016. (R. Marsh Starks / UNLV Photo Services)

When UNLV sociology professor Georgiann Davis began hearing political debate about “bathroom bills,” she couldn’t help but shake her head.

New legislation recently introduced in several states has sought to require students in public schools to use gender-specific facilities, with gender determined by their chromosomes and external anatomy at birth. For Davis, who is intersex, abiding by such statutes would prove impossible.

“The idea that my body can be neatly categorized into one sex or another is flat out illogical,” Davis says, adding that many of these bathroom laws fail to take into account the complexities of sex and gender. Because of their wording and the way she was born — with anatomical traits that don’t fit in a traditional male-female binary—the laws would prohibit her from using either restroom.

While she finds the intense national focus on bathrooms a bit absurd, she adds that the debate does point to the work ahead for the intersex advocacy community, which is striving to find its voice in social and political discourse.

Davis seeks to inform this discourse with her recent book, Contesting Intersex: The Dubious Diagnosis, which describes the circumstances of people born “intersex” — with traits that are neither exclusively male nor female.

In Contesting Intersex, Davis introduces some of the key intersex issues through personal narrative; her own journey provides an effective framework for discussing the medical history of intersex. But the book goes well beyond her own experiences to tell the stories of others also living with intersex as well as the unfolding history of an emergent group of activists attempting to define a community that is larger than many once believed.

Davis began researching the subject of intersex in 2008 for her doctoral dissertation, which she eventually transformed into the book. She conducted in-depth interviews with 65 research subjects — intersex people, their families, advocates, and medical experts. Through the interview, she began to glean a more thorough understanding of issues at play as well as the commonalities and differences among intersex individuals.

By definition, intersex includes up to 30 conditions related to sex “ambiguity.” Davis has Complete Androgen Insensitivity Syndrome, which for her meant being born with external female genitalia as well as typically male XY chromosomes and undescended testes. Many other intersex variations exist, determined at birth by either genital, chromosomal, or hormonal characteristics that fall somewhere on a spectrum biologically between male and female. By contrast, transgender refers to people who are born with typical male or female anatomies but feel limited by the sex binary, and, in some cases, elect to alter their bodies through hormone therapies or gender confirmation surgeries.

Davis hesitates to quantify the occurrence of intersex traits — data are still too incomplete to be scientifically valid — but currently accepted conservative estimates suggest that at least one in 2,000 people are born with an intersex trait, some of which don’t become apparent until puberty.

What is certain is that intersex individuals, archaically known as hermaphrodites, are far more prevalent in society than previously recognized, she says.

Davis grew up as a typical kid in the Chicagoland area in the 1980s and ’90s. As a child, she played teacher to a classroom of Cabbage Patch dolls and stuffed animals; in kindergarten, she dressed up as a football player for Halloween. Punky Brewster was her preteen TV hero.

Davis had no particular medical issues until age 13, when she experienced unrelated abdominal pain that left her mother slightly concerned that she hadn’t started menstruating. That’s when doctors would learn that she was intersex, as X-rays revealed a lack of ovaries, uterus, and fallopian tubes, and genetic tests found a chromosomal makeup that was XY, not XX. But she would know none of this before having a surgery that she believed at the time was for removing dangerously precancerous ovaries. A few years later, however, when moving across town to be nearer to a boyfriend, a routine process of transferring medical records revealed the truth: What the doctors really removed were testes.

“It scared me to death,” she says. “I threw those records away. I never wanted to see them again or talk about them with anyone. I felt abnormal, like a freak.”

At the time, she never could’ve imagined she’d spend so much time talking about her genetic makeup later in life. She has written about the subject extensively in Contesting Intersex and delivered a TEDx talk at UNLV, in which she shared her story via a presentation titled “This Girl Has Balls.”

A key focus of her book is on the role of the pediatric medical establishment. References to intersex traits in medical journals date back to the 1800s. By the 1950s, leading doctors from Johns Hopkins were beginning to routinely perform medical procedures to quickly “correct” intersex traits. Surgical and hormonal interventions became standard treatment, with parents and doctors agreeing to keep diagnoses secret, believing doing so had psychological benefits. These practices have persisted.  

“It’s happening today. There are intersex kids getting surgeries to ‘fix’ something that they are not even aware of,” she says. “The practice of forced surgeries is something we need to stop, especially when the diagnosis isn’t completely disclosed.”

What made the real change for Davis came not from her surgery but from the discovery that as an intersex person, she was not alone. Carrying her own secret quietly, Davis was in a feminist theory class as a graduate student at the University of Illinois at Chicago when she learned there was an active and welcoming intersex community.

One commonality she found among intersex people was being lied to by doctors and parents about medically unnecessary, irreversible surgeries.

Now as an adult and professor, Davis sees herself as uniquely positioned to bridge the gaps among the intersex and medical communities and the public. In addition to writing the book, she has penned op-eds and other articles about intersex people and intersex lives. She served as president of the Androgen Insensitivity Syndrome – Differences of Sex Development Support Group from 2014-2015 and is currently a board member of interACT Advocates for Intersex Youth.

In her book, Davis argues that influencing change starts with language use.

“The intersex experience shows how rhetoric can influence actions,” she says. “It makes a difference. It determines how people see it, how they treat it, and how society constructs itself around the term.”

For instance, doctors no longer “fix” intersex; they now “treat” disorders of sex development. But by calling it a disorder, doctors still give the impression that intersex is an abnormality that can be medically corrected.

“Too often a diagnosis of intersex traits is presented as an emergency, a problem—a problem we can fix with a scalpel,” she says. What’s important, she adds, is assuring that intersex youth can make informed decisions about their own bodies, which in many cases involves refusing surgeries that have proved to be medically unnecessary.

“I can’t go back in time and know how I would’ve handled learning about being intersex [before the surgery]. But I do know how kids today are handling it,” Davis says. “Almost all say they are OK with being intersex. Most embrace their uniqueness. I ask, ‘If you could, would you change your intersex trait?’ And overwhelmingly they say no, it’s who they are.”

Davis continues her research on intersex, authoring scholarly articles on a wide range of related subjects. Recently, Contesting Intersex was named the 2016 winner of the American Sociological Association’s Donald W. Light Award for the Applied or Public Practice of Medical Sociology.