Welcome to another installment of our “Defining” series, where we unpack various terms and identities. Do you have a word that needs defining? Let us know!
The definition of intersex is often disputed, but in general, people have used it as either an adjective or a noun to refer to people or bodies that have a combination of what are typically (albeit problematically) considered male and female sex traits (genital, gonadal, or chromosomal, for example). Many researchers have tried to estimate the prevalence of intersex in the general population. These estimates may not be totally reliable, in part because estimating the prevalence of intersex requires a clear definition of intersex, which, again, is a slippery term for lots of reasons.
Although we are taught by our parents, the media, our schools, the government, and more that sex is a simple and binary characteristic—that is everyone is either male or female—this idea is flawed. There is no such thing as a person being 100% male or 100% female. To begin with, there are no clear biological markers of sex found exclusively in male or female bodies. All bodies have both testosterone and estrogen, for example. As another example, testes and ovaries aren’t all that different from one another. Testes and ovaries begin their development as gonads. Furthermore, some people are born with a vagina, internal testes, and XY chromosomes. Others might have a vagina, an enlarged clitoris that resembles a small penis, internal testes, and XY chromosomes. These examples are just a few of many possibilities that challenge the assumption that sex is a simple and binary characteristic. In other words, there is no neat and clear way to medically distinguish male bodies from female bodies.
Medical providers have historically subjected intersex people to medically unnecessary interventions (hormonal and/or surgical treatment) designed to erase any evidence of an intersex trait. As one example, when a person has a vagina, internal testes, and XY chromosomes—an intersex trait known as complete androgen insensitivity syndrome (CAIS) and the trait I was born with—doctors routinely recommend that the internal, and often undescended, testes be removed to prevent malignancy risk.
However, the malignancy risk is a scare tactic rather than a reality. What’s really happening is that doctors remove the testes because a person with a vagina isn’t “supposed” to have testes. The cancer risk is more often than not a cover for these unjustifiable so-called “normalization” surgeries. For instance, if doctors always operated under the guise of minimizing malignancy risk, then women’s breasts would routinely be removed, but they aren’t. Doctors don’t routinely perform bilateral mastectomies to minimize one’s breast cancer risk. Instead, they monitor the breasts for any signs of malignancy with mammography, encourage regular self-exams, and more. In the case of intersex, if the testicular cancer risk was real, the suggested medical approach should be to monitor the testes, not surgically remove them. They do, after all, produce a substantial amount of sex hormones useful to the body. Never mind the fact that removing one’s testes forcibly sterilizes the individual—an increasing concern as reproductive technologies continue to develop in ways that might have allowed an individual with CAIS, for example, to biologically reproduce through surrogacy and an egg donor.
I know first hand what it’s like to be born with CAIS. I was born with a vagina, internal and undescended testes, and XY chromosomes—marking me as intersex. My doctors removed my testes, allegedly to prevent malignancy risk. But, when the pathologist examined my surgically removed testes, no malignancy was detected in either testis. By removing my testes, my doctors surgically forced me into menopause when I was only a teenager. They also left me dependent on hormone replacement therapy for the rest of my life.
Since 2006, many medical professionals, especially in the United States, have controversially referred to “intersex” as a “disorder of sex development.” As I argue in my book, Contesting Intersex: The Dubious Diagnosis, medical providers used this terminology in order to reclaim their authority over intersex and control over the intersex body, which was in jeopardy due to intersex activism challenging the medical treatment of intersex traits. By renaming intersex a “disorder of sex development,” doctors no longer treat intersex, they fix disorders of sex development.
For decades now, intersex activists have challenged the medical profession to end the medically unnecessary interventions doctors routinely perform on intersex people in order to squeeze their bodies into an arbitrary sex binary. These efforts span the world and include efforts by the United Nations, the World Health Organization, lawyers, and more. As an intersex person, I’m deeply indebted to intersex activists around the world who paved the way for today’s advocacy efforts by fighting for intersex rights for the last 30 or so years. I would not be where I am today, personally as an out intersex person, and professionally as a sociologist studying intersex, if it weren’t for their relentless efforts.
Intersex people are not abnormal. What is abnormal is society’s view of sex as a simple and binary characteristic of our bodies.
Intersex is not…
• an abnormality or a disorder. Intersex is a naturally occurring variation found in many different species. Aside from humans, intersex traits have been reported in dogs, cats, butterflies, and more.
• a medical emergency. Intersex traits rarely pose a health threat, so they shouldn’t be treated as problems that need immediate medical attention. When doctors present something as a medical emergency, they are establishing the need for an immediate response, or in the case of intersex, decisions about irreversible and medically unnecessary “normalization” surgeries.
• invisible or rare. Many people wrongly assume that intersex is so uncommon that they might never encounter an intersex person in their day-to-day life. This couldn’t be further from the truth. Intersex people exist around the world in all sorts of careers and familial relationships. There is also a vibrant global community of intersex people who collectively and publicly campaign for intersex human rights through the government, in the courtroom, in the media, and more.
• the same as transgender. While there certainly are some similarities between intersex and trans—specifically around society’s lack of acceptance of intersex and trans lives, which is fueled by narrow understandings of sex, gender, and sexuality—the two experiences are different. For example, intersex people are often subjected to surgeries as minor children without their consent, whereas trans people who desire similar surgeries often encounter numerous difficulties gaining access to such medical services. Of course, intersex and trans are not mutually exclusive categories—some intersex people are also trans.
Many intersex people, myself included, feel empowered and liberated when they connect with other intersex people and learn they aren’t alone as they navigate intersex life. It’s difficult being intersex in a world that more often than not wrongly assumes sex is a simple and binary characteristic of the body.
For more information about intersex or to get connected with the intersex community, check out Organisation Intersex International, InterACT: Advocates for Intersex Youth, or the AIS-DSD Support Group.
Georgiann Davis is assistant professor of sociology at the University of Nevada, Las Vegas. She has written numerous articles on intersex in various venues ranging from Ms. Magazine to the American Journal of Bioethics. In her book, Contesting Intersex: The Dubious Diagnosis (2015, NYU Press), Davis explores how intersex is defined, experienced, and contested in contemporary U.S. society. You can read more about her work atwww.georgianndavis.com. Follow her on twitter @georgiann_davis