What's in a name? Everything. Intersex: Why Naming Matters
by Thea Hillman
When I first learned about intersex, it was from a friend of mine who had just completed a training to work at a sex information hotline. I was horrified when she told me about the cosmetic surgery on infants’ genitals. At the time, I had no idea that the term “intersex” had anything to do with me.
Language shapes the way we see the world. It shapes how we see ourselves, our bodies, and can unite or divide a community. I knew as early as four years old that I had a hormone imbalance. A few years later I was able to say the name of the condition I had: Congenital Adrenal Hyperplasia (CAH). And more than 20 years later, I learned that I could use the word intersex to describe that condition, and the treatments and experiences I’d had. I felt comfortable with all the terms, including intersex, because they described my best understanding at the time.
Intersex has been a hotly contested term, referencing identity, classification and gender. Intersex also has been used differently among activists and people with conditions that might be described as intersex, which include Klinefelter syndrome (XXY), ovotestes, vaginal agenesis, hypospadias, and nearly a dozen other bodily variations.
Martha Coventry wrote in her 1998 article "The Tyranny of the Esthetic, Surgery's Most Intimate Violation," published in On the Issues Magazine, that in "seeing a child's body as wrong and by labeling such a child ‘intersexed,’ we turn a simple variation on a theme into a problem that can and should be fixed." She wrote about her own childhood surgery – a clitorectomy. Her incisive article was one of the first personal stories I read about intersex, and her sharp analysis would inform much of my writing and activism over the next decade. Reading her article again recently, it struck me how much the movement has developed and changed since she wrote it, and also how much of the controversy around intersex is based on language and naming.
Today, there are folks who want to change the terminology, and there’s intense debate among intersex, trans folks, activists, reflecting our society’s understanding of sex, gender and the nature of social change.
From Pathology to Community
Since the Intersex Society of North America began in 1993, "intersex" has gone from a relatively unknown medical term to a unifying catalyst aimed at eliminating shame, secrecy and unwanted sexual surgeries. People like me realized that they didn’t just have a medical condition or differently shaped genitals, they also had a right to have their body intact, to consent to medical treatments and to have their body accepted as is. In one way or another, the vast majority of us hadn’t been allowed these rights, and the term "intersex" described that need.
Some of us considered "intersex" to be an umbrella term for a bodily variation that we had. Others considered it a sexual or gender identity on its own. Some intersex folks went as far as to reclaim the term "hermaphrodite," similar to reclaiming the words "bitch" or "queer."
I think most of us considered “intersex” as an invitation to community. In some ways, it kept that promise, and in many ways it broke that promise and the hearts of intersex people who had never felt that they belonged anywhere.
Regardless of how we defined ourselves in relation to the term “intersex,” most of us agreed on one thing: that the primary goal of the intersex movement was to put an end to non-medically necessary, non-consensual sexual surgeries on infants and children.
“Normalizing” and Stigmatizing
The medical community did not seem to be on the same definitional page. I attended a medical conference of endocrinologists and urologists several years ago. These are the doctors who diagnose intersex and do the genital surgeries. I learned two important things at the conference: the doctors considered self-identified intersex adults to be freaks, and they don’t think intersex is very common.
In fact, they consider just a few conditions to be intersex, whereas the activist community believes there are at least a dozen. I believe that the doctors think intersex applies only to those bodies that on visual inspection of genitalia are difficult to determine as male or female. I would say that the term applies to bodies that aren’t standard for male or female, and I think many intersex activists would agree with that.
A huge expanse exists between medical and activist understandings of intersex. It is the difference between believing that intersex is a rare condition that requires surgery on the child and believing that intersex is quite common and requires information, acceptance on the part of family and caregivers, and medical treatment only where necessary to maintain health. In Fixing Sex, author Katrina Karkazis discusses how "the naming and treating of intersexuality represents one aspect of the increasing tendency to turn social issues into biomedical problems."
With access to all kinds of folks dealing with intersex (parents, adults with intersex, physicians, academics), Karkazis is able to demonstrate how culturally complicated intersex is for all of those involved with treatment, or changing minds about it. What I witnessed at that medical conference, however, is that the biggest concern of the doctors did not seem to be the sexual function and sensation of their patients or the well-being of their patients after they treated them, but what gender to assign patients based on the conditions they had.
And here begins the conflation of sex with gender. Surprisingly (to me, at least), I like the World Health Organization’s simple definition of the differences between the two terms.
"Sex” refers to the biological and physiological characteristics that define men and women.
“Gender” refers to the socially constructed roles, behaviors, activities and attributes that a given society considers appropriate for men and women.
To put it another way:
“Male” and “female” are sex categories, while “masculine” and “feminine” are gender categories.
Gender Conflated with Genitals
Intersex isn’t really an issue of gender, although most people hearing about the issue for the first time are most curious about gender. “What if the doctors and parents chose the wrong gender for the baby?” is the question I hear most often about intersex. For those interested in gender activism, I believe this is a question we should ask about calling any baby a boy or a girl, as all such gender assignments are just our best guess at the time. Transgender and transsexual people can attest to that.
I don’t believe that intersex babies should be raised without a gender, or, as some believe, with intersex as their gender or sex. I know that most intersex people identify as a boy or a girl when they are old enough to tell us who they are. To raise children without a gender is to make them a social experiment, which has its own risks. I also know that many non-intersex babies don’t identify with the gender they were raised, and when they can, change that gender and sometimes also their sex. These are transgender and transsexual people.
Conflation of sex and gender is harmful when it comes to intersex because it distracts potential allies. This includes people who promote the concept that intersex is proof that the gender binary doesn’t exist and also the folks who have so much anxiety about gender conformity that they want to surgically erase any visible sex difference.
The Latest Controversy:
Intersex vs. DSD
A new conflict around language has arisen around the phrase “disorders of sex development,” or DSD. Use of this term is being advanced as an alternative to intersex.
This purpose of the term “DSD,” as I understand it, is to focus physicians away from gender and cultural normalcy and back to treating medical disorders related to intersex, if there are any.
There were many factors motivating this change in terminology. Some in the intersex movement felt ghettoized in the gay community; also, intersex activists were stymied in fundraising, and talking to the medical community became difficult when intersex held implications of freakishness. Among the DSD adopters are many intersex people who identify with the name of a condition (such as, hypospadias, AIS, CAH) rather than intersex. Some, if identifying or declaring at all, didn't want sexual orientation to become the focus, even if they are, in fact, gay or lesbian. These folks wanted to be thought of a person with a condition.
Promotion of the term “DSD” by people who had originally spearheaded the intersex movement shocked many who identify as intersex. They believed that the term “intersex” to be integral to who they are, their identity and their healing. To call them “disordered” felt like the ultimate betrayal. Others, including trans activists fighting to depathologize gender non-conformity, objected to what they viewed as coining another gender variation as a pathology.
For me, the term “intersex,” and the fact that it’s an umbrella term bringing together a variety of different conditions and experiences, allowed me to see the psycho-social ramifications of my medical treatment. I was able to politicize what I had thought were individual experiences. I learned that my treatment was good in that it helped me maintain my health and reproductive potential. However, despite the best intentions of my doctors and parents, I still got the message, through numerous genital examinations and myriad tests, that my body was broken in some way that had to do with sex and with genitals. The word “intersex” taught me that I was not alone: a group of people had vastly different bodies from me and different experiences medically, but we all had bodies that didn’t look or act according to the standards for male or female.
What is at stake when it comes to intersex clearly goes deeper than language. Intersex is about culture, human rights, and quite literally, saving lives. No matter who you talk to, the intentions on all sides of the intersex/DSD controversy are good: to end unnecessary medical treatments or to disallow discrimination based on physical variation or to prevent “normalization” of people who, for whatever reason, don’t meet the narrow confines of acceptable male-female and boy-girl. Everyone is just trying to find the right word, the strongest way to say stop. The challenge is to make sure no one is hurt along the way.
Thea Hillman is an activist and author. Her book, "Intersex (for lack of a better word)" won a Lambda Book Award. For Thea’s performance and appearance schedule, visit www.theahillman.com.