Why "Disorders of Sex Development"? (On Language and Life)
I just gave a talk at the Kinsey Institute about the history and politics of the term “intersex” and alternative terms for intersex, including “disorders of sex development,” and since a number of people who couldn’t make the talk have asked me for a summary, here it is. (Some of this material is covered in an article I have authored with April Herndon in the journal GLQ.)
The challenging thing about talking about the history and politics of the term “intersex” is that the term is a moving target. That is to say, it’s meaning seems to change even as we talk about it. But for purposes of this essay, let me define “intersex” the way it has usually been understood: A person is intersex when she or he is born with a body type that mixes or blends what are usually thought of as the standard male and standard female types. That mixing might occur at the level of “sex chromosomes,” or gonads (ovaries, testes, or ovotestes), or external genitalia, or internal reproductive anatomy, or some combination of those.
Thus, there are lots of ways one can be intersex. The two ways most people have heard of are (1) being born with “ambiguous genitalia” (for example, having a phallus that is something between a penis and a clitoris) or (2) having 5-alpha-reductase deficiency, the condition of the protagonist Cal in Jeffrey Eugenides’ novel Middlesex. A person with 5-alpha-reductase deficiency is born looking female but develops more along the masculine pathway at puberty. But, like I said, there are lots of other ways to be intersex. Some people with intersex look typically female on the outside but have some internal male organs, or vice versa. Not all types are noticeable at birth. No one is born with all the parts of males and females; that is physiologically impossible. The majority of people with intersex conditions have male-typical (XY) or female-typical (XX) sex chromosomes.
How you define intersex depends on how you define males and females. The category of intersex, like the category of male and female, has been (and will continue to be) constructed in different ways at different times and places. Nature is messy, even though we try to create neat categories from nature’s mess.
Until quite recently (like, oh, yesterday), in medical practice and the medical literature, doctors tended to use a very outdated nomenclature and taxonomy for intersex. Basically, there were five ways you could be classified:
male pseudohermaphrodite (having testes plus some blending or ambiguity of other sex anatomy)
female pseudohermaphrodite (having ovaries plus some blending or ambiguity of other sex anatomy)
true hermaphrodite (having both ovarian and testicular tissue)
I’m not going to into depth here about why this system came about, because I already traced its origins and motivations in chapter 5 of Hermaphrodites and the Medical Invention of Sex. I’m also not going to go into depth here about why this system is so utterly useless and also harmful today, because I and four co-authors laid all that out in an article that called for a new taxonomy and nomenclature for intersex conditions. (Plus, I don’t know anyone hankering for an upholding of the five-part system based on the root “hermaphrodite.”)
“intersex” has been used in place of “hermaphroditism” steadily, though irregularly, in medical practice and the medical literature since the mid-twentieth century. When Cheryl Chase founded the Intersex Society of North America (ISNA) in 1993, she used that medical term, and in doing so, she and other early intersex activists gave the term a political valence it hadn’t had before. Now “intersex” started to mean something other than—or something more than—a biological state, a medical condition. It began to carry with it a political identity. And that was an identity that was pretty firmly associated with queer rights, in part because most of the early intersex activists came out of a queer rights consciousness. (It was also because queer activists tended to really understand intersex issues, so we allied with them.)
As an aside, let me just note that there was a built-in irony to early intersex rights activists using the term “intersex,” since intersex was until that time pretty much a medical term, and one of the chief goals of intersex rights was de-medicalization. (The central goal of the early intersex rights movement was to stop unwanted genital surgeries, gonadectomies, and hormone treatments.) This built-in irony laid the groundwork for terminology difficulties yet to come…
OK, so flash forward to 2005. Under grants from the California Endowment and the Arcus Foundation, I’m working on producing two major new handbooks for intersex conditions, one a set of clinical guidelines and the other a handbook for parents of children with intersex. I’m taking drafts written for ISNA by social workers Sallie Foley and Christine Feick several years earlier. As I’m doing this, it is clear to me that the time is ripe for bringing together people who used to say they disagreed over points they now agree on. (They’re agreeing on a lot more than I expected!) But to do so, we’re going to have to use a new term for what we’ve been calling “intersex.”
Why? Two major reasons.
The first is sort of semantic, but very real. My ten years of work on medical reform in intersex care had taught me that you just can’t get doctors and patient advocates to agree on what you’re talking about when you use the term “intersex.” Even the most sane, smart, pro-intersex-rights docs and patient advocates can’t seem to agree on which conditions count. To state the obvious, if you can’t get people to agree on what you’re talking about, you can’t get anywhere. I was spending so much energy playing the “Is CAH intersex? Is AIS intersex? Is hypospadias intersex? Is Klinefelter Syndrome intersex?” name game that I couldn’t get people to talk about the (problematic) clinical practices that all these conditions had in common.
As I work on the handbooks, I know that affected individuals, their families, and their clinicians will all be better off if we can get them to see that a multi-disciplinary team approach that focuses on long-term psychosocial well being is the way to go for all of these conditions. But first we have to get them to see them as alike—as fitting under some logical umbrella term. And “intersex” isn’t going to be the one. It doesn’t work.
And that’s in part because of the second major reason we needed a new term: a few of the docs helping with the handbooks, a lot of the parents, and a small number of the affected adults made it clear that they found the term “intersex” shaming and stigmatizing. They didn’t want to talk about care for “intersex” people because they felt about the term the way we felt about the term “hermaphrodite”—that it was a pathologizing misnomer. (That was a shock to me! Helps to get out sometimes.)
So, what new term?
To figure that out, I asked around the clinicians helping with the handbooks, to see if there was a term out there that might work to do what we wanted—i.e., get people (especially clinicians, since they hold the scalpels and syringes) past a discussion of terms onto a discussion of care. Proposals included “disorders of sexual differentiation”—rejected because different disciplines mean different things when they say “differentiation.” I also heard about “disorders of sexual development.” But “sexual” seemed to mean “erotic,” so we rolled that middle word back to “sex.”
“Disorders of sex development,” or DSD for short.
I put together the handbooks using this term and sent the new drafts around. And lo and behold, a number of powerful folks who had historically been hostile to the reform model of care proposed by ISNA explicitly expressed unqualified relief at the new term, and signed up for the rest of the package—including delaying optional genital surgeries, optional gonadectomies, optional hormone treatments, until the patient him/herself could decide! Including full truth-telling to patient and family! Including active introduction of psycho-social professionals!
When I asked them why they liked the term “disorders of sex development,” they told me they felt that “DSDs” gave them a means to talking openly about what had happened, talking without shame. “Intersex” didn’t do that for them.
In a strange sort of way, I learned that, for some of these folks, using the term “disorder of sex development” meant in their minds that you could afford to do less medical intervention on affected children. “Intersex” had a way of feeling totalizing, because it had come to represent an identity (thanks to the intersex rights movement). The people who were uncomfortable with intersex wanted to make it go away in children—they didn’t want their defenseless babies being drafted into a political identity movement. If their children just had a DSD, well, then they just had something that went funny in development, but it didn’t mean their whole bodies and identities were taken over by this thing. It was manageable; they could manage with less medical intervention….
Now, a few people with intersex didn’t like the new term. In terms of the handbook contributors, this included David Cameron, Esther Morris Leidolf, and Peter Trinkl. They requested (and got) a disclaimer to that effect on the handbooks. (Incidentally, in the memories section of the Handbook for Parents, I let everyone define themselves however they wished, and folks varied on that.)
OK, meanwhile, as I’m finishing up the handbooks, there’s a “consensus” meeting of pediatric endocrinologists coming about in Chicago. I put “consensus” in quotes because this was an invitation-only meeting of mostly M.D.’s; no parents were invited, only two adults with intersex were invited, and most of the medical specialties who care for people with intersex were either not represented or very underrepresented. Nevertheless, this was an important meeting, and we knew that it was a chance to move the system forward, towards more patient-centered care. So a few of us who had been working on the handbooks got together on the phone—including a few of the people who had been invited to the meeting—to talk about what we should try to get passed at the meeting. And one of the things we thought we could swing was a nomenclature change. Get rid of the crazy-making nomenclature/taxonomy based on “hermaphroditisms” once and for all and replace it with something new and better for patients.
A new system based on the central term “intersex” was never going to fly. By then, not only could the docs not agree on what it meant clinically, not only was the term heavily politicized, the term had started to be used by people who were transgendered but who weren’t intersex in any of the conventional ways. For example, it was being used by people who had not been born with an intersex condition (as docs and I would generally define it) but who were actively and intentionally changing their hormonal systems from male-typical to female-typical; they would say, “now I am intersex.” More politicization and confusion around “intersex,” not less…
If we wanted to develop a comprehensive system of care for children marked as being sex anomalous, we were going to have to have a new, workable term. So the folks who went to the Chicago consensus meeting in October 2005 pushed “disorders of sex development.” And the people there were ready for it. It passed.
Thus, in the mainstream medical literature, disorders of sex development are now “defined as congenital conditions in which development of chromosomal, gonadal, or anatomical sex is atypical.” (For the consensus statement reference, click here.)
That doesn’t mean everyone has been happy with the shift. A number of adults with what I think of as intersex (and a lot of folks with what I think of as non-intersex transgender) have been upset with the terminology. They want to be called “intersex.” And I understand completely why a lot of people feel like the term is a step backwards towards pathologizing and medicalizing sex anomalies.
But here’s the thing. The term seems to be helping. Really helping to accomplish those basic goals of the intersex rights movement. When I finished the handbooks and started distributing them, as I used “DSD” instead of “intersex,” the medical professionals providing pediatric care immediately got past the usual defensiveness they had and got to talking with me about how to make things better.
A couple of people at my Kinsey talk pressed me about the terminology and asked me to work more on trying to find a new, better term. What about, for example, “variations of sex development,” as some have suggested? Honestly, I don’t see that term flying in the medical system; I’ve asked about it, and it doesn’t go anywhere. Part of the reasonable fear among medical professionals is over-de-pathologizing sex anomalies. (If a girl is born with a big clitoris, you don’t just say “gee, that’s just one of nature’s variations,” you say “there’s nothing wrong with a big clitoris but we do need to find out if this baby has congenital adrenal hyperplasia or some other underlying metabolic problem that might risk her health, fertility, or life.” Sometimes a big clit is just a big clit, and sometimes—albeit rarely—it’s a sign a girl is going to die in a few days if you don’t get her a good endocrinologist.)
In a paper just published in a special issue I edited with Paul Vasey, historian Elizabeth Reis proposes “divergence of sex development” as an alternative. I think this is a good idea in general, and I hope that the big players will consider this term as an option.
But in general, I’m not interested in spending more time on nomenclature for sex anomalies and sex variations. Nomenclature is, at some level, a problem of luxury. Given a choice between spending energy on trying to get the perfect term or trying to save perfectly healthy clitoral tissue from well-meaning pediatric surgeons, I’ll go for the later. I’ll also willingly put off efforts at finding the perfect nomenclature until no more patients are lied to, displayed in ways that traumatize them for life, gonadectomized without cause, treated as psychosocial disasters without actual cause and without ever being referred to a psychosocial professional, etc.
So, people look at my upcoming speaking gigs and wonder, how come I’m still using intersex when I talk about it to general audiences? Because as a political term, “intersex” makes perfect sense to me. That’s why I do and will continue to use the term “intersex” when I’m talking about the politics of intersex. That’s why the last paper I wrote about the politics of intersex uses the term intersex, even as the ethics paper I’m now writing for a textbook on pediatric bioethics will use the term “disorders of sex development.”
Am I schizoid? Hypocritical? Irresolute? Nah. I’m pragmatic. Just like my seven-year-old son, I’m old enough and smart enough to know that words can have different meanings in different contexts, and that sometimes a word that can make one person laugh and smile will make another cringe. We use the language that makes sense for what we want to achieve, given the context. When you speak a word, it doesn’t just matter what you say; it matters how the other person hears it.
You know, it would have been nice if it had turned out that the term “intersex” could do what everyone needed. But that’s not how it worked out. Intersex is, unfortunately, still divided at the age of 18. What do I mean?
I mean that there is, still today, one system for intersex in minors, and that is a medical system virtually devoid of political consciousness, and that there is a separate system for intersex adults, and that is a politically-conscious activist system nearly devoid (tragically) of specialist medical care. Hopefully someday this divide will disappear. Docs and parents will become much more politically conscious about why families with intersex suffer, and they’ll do something about those social politics, and all adults with intersex (including those who have no interest in activism) will have access to quality specialist healthcare for adults with their particular needs.
In the meantime, what I think we need to do is to take care of all the involved people as much as we can. As a mother, I can understand why pediatricians and parents are wary of using a deeply politicized term like “intersex” to help the children for whom they care. And as an activist for intersex rights, I really, really want to see patient-centered care happen, and in my medical reform work I’ll use the term I have to in order to stop medical specialists from using the still-common concealment-centered alternative. Now, also as an activist, I can understand why many intersex adults want to retain a word that gives them a unifying political identity that is maximally destigmatizing, and I understand why that word is “intersex.”
And as long as I’m going through all of my identities here…as a historian, I have to wonder whether a lot of the intense discussions among intersex adults is happening because it is something they can do. Most politically-conscious intersex adults want to see change happen in medicine and society, but they don’t have the resources to do major social change or medical reform work.
But there are things they can do instead of ripping into each other over language, as some have done. What I’ve told some people who want me to engage in long discussions over the language of intersex is this: Don’t lose sight of all the other things that matter. Language is just one of those things. You’ve asked me to stop unwanted genital surgeries and hormone treatments, to line up referrals to mental health care professionals and peer supporters, to get long-term adult care. All of that stuff matters to me, and I think it still matters to you, too. When you’re sitting on a closed-loop listserv, arguing with insiders who have not so much power, think about whether your time is better spent engaging those with power. Think about writing to doctors and telling them what happened to you and what you wish had happened to you. Think about providing positive, constructive support and education through the diagnosis-specific groups and through your community’s religious institutions, schools, and other non-profit organizations.
Remember to make the goal the goal.
If you’d like to read more about DSD terminology, I recommend Elizabeth Reis’s new article, as well as what intersex activist and theorist Emi Koyama has written at the Intersex Initiative site. Also check out ISNA founder Cheryl Chase’s remarks on the subject. At ISNA’s site you can also read the thoughts of Sherri Groveman, founder of the AISSG-US.
Note: See also Footnote to a Footnote