What is “intersex”? A response to June42, a woman with Turner’s syndrome

This week, someone named June42 contributed a guest post about how she views her place as a woman with Turner’s syndrome in (radical) feminist movement on the controversial lesbian-feminist activist and attorney Cathy Brennan’s blog.

As a long-time activist involved in the intersex movement (former staff at Intersex Society of North America, director of Intersex Initiative, and board member of Advocates for Informed Choice) I wanted to respond to June42’s post as well as to some of the questions that are coming up from readers. But Cathy probably doesn’t want me to comment on her blog, nor do I want to comment there either, so I decided to post my response here.

(In case you are wondering why: I never had any hostile interaction with Cathy before, but last June I saw her attacking a trans woman I know by intentionally using what I thought was her pre-transition (male) name. I wrote to Cathy: “I don’t know if that’s her previous name, but using it feels creepy and reminds me of stalker behavior, not to mention silencing. Say whatever you will about her politics or behavior, but can you please stop that?” She responded “Um, no. ***** [the trans woman’s previous name] is a liar. We point out MISOGYNISTS who THREATEN FEMALES. ***** is one of them. Also, fuck you.” After that, I decided not to interact with Cathy any further.)

I appreciate that June42 is sharing her story, and I agree with her feminist analysis that the medical treatment of intersex conditions (I will discuss more on that category later, so for now please think of it tentatively as a shorthand for any condition that might be considered intersex under some definition) is based on the society’s (which is to say, straight men’s) assumptions about “healthy” or “normal” sexuality and gender relations that are deeply sexist and heterosexist. I also agree that the intersex medical “management” is often experienced as traumatic and damaging by many patients, especially children (see my article, “Intersex Medical Treatment and Sexual Trauma.”)

I am particularly sad that June42 has experienced what disability activist Lisa Blumberg has called “public stripping,” or intersex activists have called “medical display”: a procedure in which children with rare medical conditions are routinely stripped naked or near-naked and exposed to a room full of doctors, interns, medical students, and others, as if it is a freak show. I have known many people with intersex and other medical conditions (like neurofibromatosis) who had to go through this experience, and many report that it was the most traumatizing and shaming aspect of their medical treatment, more so than medically unnecessary genital surgeries. I am sorry that June42 and some other women with Turner’s also had to experience it. And disability and intersex activists are certainly carrying the torch of feminist revolution, as June42 suggests, when we problematize the medical gaze that reduces our organs and bodies to objects to ogle, study, and manipulate.

Now, the difficult question: is Turner’s syndrome an intersex condition? June42 writes that Turner’s syndrome is “incorrectly described as an ‘intersex condition’ by some ‘Queer’ gender theorists,” showing their “complete misunderstanding of [Turner’s syndrome] as a condition,” but it seems to me that queer theorists are more often wrong, generally, about what intersex is, rather than whether or not Turner’s syndrome fits in there. June42 points out, correctly, that the vast majority of women with Turner’s syndrome view themselves as women, and consider the labeling of their bodies as “intersex” to be “profoundly damaging to women […] whose sense of themselves as women has already been undermined.”

But it is not just women with Turner’s syndrome who feel this way; most women and men with intersex conditions do not use the label “intersex” to describe themselves, and often do not consider their condition to be part of the “intersex” umbrella.

There are a couple of problems here. First, there is no single, agreed-upon definition of the term “intersex,” and doctors do not even agree with each other about it–for example, geneticists are more likely to consider Turner’s syndrome as an intersex condition, but endocrinologist or urologist might not. There are only a couple of conditions that pretty much everyone agrees are “intersex,” and the rest of dozens of conditions may or may not be included depending on the definition. That said, the “Consensus Statement on Management of Intersex Disorders” which was adopted by Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology does include Turner’s syndrome as a “sex chromosome DSD (disorder of sex development–the term replacing “intersex” within the medical community).”

Second, and more significantly, there is a problem with the word “intersex” itself, which implies that it describes someone who is neither male or female but is something else in between. As June42 points out, this impression is harmful to many people with intersex conditions who do not view themselves as anything other than men or women who have particular health and reproductive concerns. In fact, this was one of the reasons many patient groups and families welcomed the introduction of the term “DSD,” even though many are not entirely happy about the stigmatizing term “disorder” in the new acronym.

The mistake queer theorists and activists often make (as Judith Butler did in her 2002 paper, “Doing Justice to Someone“) is that they do not attempt to understand or address actual lived experiences of people with a specific intersex condition, but treat “intersex” as a homogenous group, or worse, a theoretical tool to advance their own theories about social construction of gender and sex (see my old paper, “From Social Construction to Social Justice: Transforming How We Teach about Intersexuality“).

I use the term “intersex” not as a gender or an identity term, but as a political term, to address commonalities of our experiences of sexism and heterosexism as they inform the medical mistreatment of people who have “different” bodies, particularly those that affect sex development and reproduction. I do not personally identify as an “intersex person” because “intersex” is not an identity label for me, and would not call anyone that way unless they actually identify as such (that said, I sometimes use “intersex person” as a shorthand–and I apologize if I’ve done that to any of you). But I do identify as an intersex and disability activist as well as a feminist, because what I experience in medicine has a larger context that I share with those who do not necessarily share my exact condition.

In the meantime, people who do not have any of these conditions should stop arguing whether a particular condition is intersex or not. Instead, they need to listen to people with these conditions to understand their specific concerns–some of which are similar across various conditions that are considered (and sometimes not considered) intersex, while others may be more unique to people with that particular condition. And generally understand that if you keep talking about “intersex people,” you would in effect exclude many people whom you intend to include (read What Is Wrong with ‘Male, Female, Intersex'”).