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by Emi Koyama, Intersex Initiative
Below is the keynote speech presented at Translating Identity conference held at University of Vermont in February 2006.
Today I'd like to talk about the new term DSD, or disorders of sex development, that is now being promoted as the replacement for the word "intersex." There several reasons that this is happening, but the fact is that it will happen, so I wanted to talk about what that would mean, and how I think about it. I'll go into disability theory also, because more and more disability politics is becoming important in intersex organizing. And since I'm talking about gender, disability and intersex, some of what I will say would be relevant to the controversy over the DSM-IV category of gender identity disorder, which many of you have opinions about, although I won't be directly discussing it.
Last month I was contacted by a producer from BBC, who was hoping to create an episode for the American version of the series titled My Life As A Child featuring an intersex child. This is a very interesting television series: it would arm children with video cameras, allowing them to film their lives, interview people and narrate footages. BBC asked me to help find a family with an intersex child who would be a good candidate for the series.
Now, I was fascinated by the concept. But unfortunately I didn't feel that I could refer any family for them to approach, because of the complex circumstances that surround intersex. Further, I felt that the producer was basing her request on a false premise about what intersex was. It appeared to me that what she was looking for is a story told by a child who is struggling with gender identity issues because of having an intersex condition. Nothing wrong that--but if their intent is to tell a story about a child dealing with gender issues, they should seek out children who are trans or genderqueer, rather than presuming that a child would automatically feel differently about gender just because she or he is born with an intersex condition.
But that's a common misperception, and since not everyone attended Raven Kaldera's wonderful workshop about intersex yesterday, let me list some of the common misperceptions about intersex:
Intersex people are hermaphroditic. The word "hermaphrodite" has been used to mean intersex in the past, but biologically these are two different things. A hermaphrodite is literally both male and female: that is, like snails and earthworms, these organisms have both male and female reproductive capabilities. There are no humans who are hermaphroditic in this sense; intersex in humans refers to bodies that are not clearly differentiated or consistent. Examples of intersexuality in humans include a genetic male born with external appearance of female genitalia, or a genetic female born with an enlarged clitoris that may appear like a penis.
Intersex people have sex chromosomes other than XX or XY. Atypical sex chromosome can influence the development of internal and external reproductive organs, but account for only a small percentage of intersex births. Most people diagnosed with intersex conditions have either XX or XY.
Intersex people are neither male nor female. This one depends on how rigidly you define maleness and femaleness, but most people born with intersex conditions do view themselves as belonging to one binary sex or another. They simply see themselves as a man (or a woman) with a birth condition like any other.
Intersex people suffer from incorrect sex assignment. This is true for some people, and for these people it is a very important issue, but not for the majority of people born with intersex conditions. Intersex activists have criticized cosmetic genital surgeries on unconsenting children because of the physical, emotional and sexual hazards that may result, and not necessarily because a large number of intersex adults feel that they were assigned the "wrong" gender.
Biologically speaking, there are five sexes. This myth comes from Anne Fausto-Sterling's infamous article, "The Five Sexes" from 1993, but even she was merely discussing the five-sex system as a "tongue-in-cheek." Since human sex is on a continuum, how many sexes there are depends on where one draws the lines--and in that sense, dividing humans into two categories is no different from using five categories. That said, to say that there are five sexes biologically would require a radical re-formulation of what "sex" means in Biology as a discipline, and therefore it is premature, if not wrong.
LGBT groups should add the character "I" to include intersex. While many organizations have taken this path, intersex groups are not pushing for this change. There are both benefits and risks to associating intersex with LGBT that must be evaluated case-by-case. LGBT groups can and should act as allies to the intersex movement, as they are also allies to women's movement and other progressive causes, without hastily changing their acronyms or mission statements.
So with this awareness, think about how a child could narrate her or his own intersex experiences in the BBC program. If not focusing specifically on gender issues, as I suspected that the producers had assumed, what other issues can be depicted?
Certainly, the number one issue activists have been rallying around is the issue of medical maltreatment of intersex through unnecessary surgeries, vaginal dilation--that is, the forced and repeated insertion of foreign objects into the child's surgically created vagina by trusted adults--and the public display of naked bodies in front of large number of medical professionals and students supposedly for educational purpose.
But I can't imagine making a child tell these current and ongoing stories for national or potentially international audience. For one thing, children being treated in that way are frequently denied access to any information about their conditions, and are taught from early age not to reveal any of what's going on to a friend, teacher, anyone. Even if we had a child with stories to tell, I doubt that the parents would go along with that, and I have serious doubts that airing such footages would be ethical.
On the other hand, if we were to imagine giving a camcorder to an intersex child who is given appropriate care and support, the story won't be interesting at all. Of course, I think it's great to tell ordinary stories of an ordinary child who just happened to have an intersex condition, but I highly doubted that this was what BBC was looking for.
As you see from this episode, there is a certain difficulty to represent intersex experiences. Intersex stories that can be told in the mainstream media often involve gender issues, childhood trauma, or both. For the majority of intersex individuals who do not particularly feel the need to explain their gender status because they are not trans or genderqueer, or to re-live the horrors of childhood trauma by telling their stories in front of an audience (which may feel like the refrain of the exam room exposure) because they are not activists, there is nothing that motivates them to speak about their intersex experiences.
In the past, I had assumed that more intersex people would publicly come out and tell their stories once more of them had the opportunity to meet each other. In fact, that's precisely what happened in LGBT communities. But this has not truly materialized among intersex people. Representatives of the intersex "community" that are speaking publicly about intersex now are virtually the same small group of people who were doing the same five years ago.
To be sure, those of us who are activists hear from these silent intersex people all the time. There is a huge demand for psychological and medical care for adults who recently discovered their intersex status or who have known it but couldn't tell anyone else about it until now. There are virtually no services for adults who are intersex, because by definition intersex adults do not exist. Intersex children are "cured" of their intersexuality once the surgery takes place, so according to doctors these are just a bunch of "formerly intersex" patients.
So clearly there is a fairly large, socially distinguishable group of people marked by a common need. But to this date it has not materialized as a visible intersex community or culture. And with the recent introduction of the new term, DSD, or disorders of sex development, the intersex existence may once again retreat into the shadows of public consciousness, leaving behind activists and intersex individuals who also happen to be trans or genderqueer as the only people who still refer to DSD as "intersex."
What went so wrong with the term "intersex"? Well, it was wrong from the beginning, considered slightly more tolerable than the mystifying and misleading term, "hermaphrodite." The word "intersex" obviously came from the idea that it is in between the standard sexes, male and female. As I said earlier, most people born with intersex conditions do not consider their bodies "in between" male and female, but simply a male or female with a birth condition.
Parents of intersex children tended to be even more hostile to the notion that their baby is neither male nor female: many of them would absolutely refuse the label "intersex," only accepting specific condition names such as congenital adrenal hyperplasia or androgen insensitivity syndrome. In fact, I fear that hearing the word "intersex" would make them more likely to pursue drastic measures to eliminate that factor, be it surgery or complete secrecy.
How have activists responded to the term "intersex"? In early part of the intersex movement, which is in the early-to-mid 1990s, there was little hesitation toward the label. In fact, not only did intersex activists appropriate the medical label "intersex" as part of their identities, they also liberally used the word "hermaphrodite," which is now considered offensive, for example by naming the newsletter of Intersex Society of North America "Hermaphrodites With Attitude" and demonstrating under that name.
Such tactic was obviously influenced by queer identity politics of the 1980s and 90s that were embodied by such groups as Queer Nation and Lesbian Avengers. But unfortunately, intersex activists quickly discovered that the intersex movement could not succeed under this model. For one thing, there were far fewer intersex people compared to the large and visible presence of LGBT people in most urban centers. For another, activists soon realized that most intersex individuals were not interested in building intersex communities or culture; what they sought were professional psychological support to live ordinary lives as ordinary men and women and not the adoption of new, misleading identity.
To make it worse, the word "intersex" began to attract individuals who are not necessarily intersex, but feel that they might be, because they are queer or trans. Many of these people felt that to be intersex meant a social and biological justification for being who they are, as in it's okay that you're queer or trans because they were literally "born that way." This obviously clashes with the majority of people born with intersex conditions, who despite their intersex bodies feel that they are perfectly ordinary heterosexual, non-trans men and women. Accusations of being imposters or being assimmilationist were exchanged, making it extremely difficult to continue providing supportive environment for people who seek healing from trauma.
Fortunately, the intersex movement did not rely solely on queer identity model for its strategies. Among several different approaches promoted by various members of the small intersex activist and scholarly circle was the approach learned from the radical disability rights movement, and its poststructuralist academic cousin that is the Disability Studies.
Critical disability theories point out that our flesh and bones are consistently given meanings and interpretations through social structures. While most people understand the word "disability" to refer to a list of physical characteristics that cause difficulties or inconveniences to people who possess them or those around them, and from that point of view one could argue that intersex has nothing to do with disability because it does not cause any difficulties or inconveniences on its own. But to a disability theorist, disability is not simply a characteristic of one's body, but the product of social institutions that divide human bodies into normal and abnormal, privileging certain bodies over others.
In this view, the physical condition that necessitate the use of a wheelchair in order to move about is not itself a disability; social and architectural structures that deprives a wheelchair user of full participation in the society is what disables her. Similarly, intersex activist Esther Morris's observation that "not having a vagina was not my problem; having to get one was," can be paraphrased to say: not having a vagina was not a disability; the social expectation that she needed to get one in order to live happy and productive life marked her body disabled.
In 1992, Lisa Blumberg broke a secret surrounding a medical procedure she termed public stripping. What she is referring to is a common but mostly unspoken practice of making children with rare disabilities and birth conditions take off clothes so that they can be displayed to a large number of medical professionals and students. Children are ordered to take different poses to expose different body parts and angles and are sometimes photographed. While some may argue that such practice is sometimes necessary for research and educational purposes, but there is little evidence that medical professionals involved paid efforts to minimize and repair the psychological damages from the experience. Many of these children were deeply traumatized by this experience into their adulthood, and yet could not speak out about it because of shame and isolation.
Disability activists have long fought discrimination, violence and lack of accessibility, but it took much more courage to break the silence around the medically sanctioned sexual shaming of young children. Part of this difficulty could be explained by the sexual nature of the damage; but the other important part is the fact that it was done by the supposedly well-intentioned medical professionals.
Children who have disabilities are taught to behave appropriately as a disabled child from early on. They are taught a pattern of socially acceptable behaviors known to sociologists and disability theorists as the impaired role. "Impaired role" is a set of scripts that people with disabilities are expected to stick to in exchange for the non-disabled society to tolerate their presence. The primary feature of this role is that a disabled person must act as the passive mirror of other people's affection and good will, so that non-disabled people can affirm their own goodness. The forced lifelong immersion in this role makes it extremely difficult to question or to challenge potentially self-serving or manipulative motives behind others' presumably altruistic actions.
Intersex movement discovered "public stripping" on its own, although their chosen term was "medical display." This term includes not only the actual "public stripping" of naked intersex children in front of the audience, but also the use of photos taken of those children which often show the genitalia only, or with a black rectangle blocking their eyes to make them anonymous. Intersex ally and medical historian Alice Dreger observed these photos and pointed out that while the black rectangle protects the privacy of the person being photographed, it also dehumanizes her or him, reducing the subject to her or his genitalia. Intersex activist Cheryl Chase said it more emphatically: the only thing that the black rectangle accomplishes is that it keeps the viewer from being stared back.
Alice Dreger had earlier written about the medical treatment of intersex in the Victorian era before intersex activists challenged her to examine the medical treatment of intersex today. After the initial research, she was shocked: it appeared that every fundamental ethics of medical profession has somehow gone out of the window when it came to intersex. That is, from the routine practice of deceiving patients and their family members to the medically unnecessary cosmetic surgeries on unconsenting children, it seemed like a big exception to a generally humane medical system.
But two years ago, Dreger reverses this position. She wrote: "Back in 1998, I thought the standard treatment of intersex was so morally outrageous that, once exposed, it would quickly change. [�c] I'm often asked why intersex medicine hasn't changed, and nowadays I think that the reason must be because, in spite of what I thought in 1998, the treatment of intersex actually looks a lot like other realms of modern medicine. [�c] I have come to realize that [�c] I was really nai�Nve about medicine."
If the physical condition directly causes pain or illness, nobody could criticize doctors for attempting to remedy it. But medicine insists on solving pains caused by social structures and attitudes as well. Aside from intersex, there are limb-lengthening surgeries that prioritize "normal" appearance over function, growth hormone treatment for the short children, overzealous surgeries to fix cleft lips and palates even when it's not medically necessary, over-diagnosis of ADHD and over-prescribing of Ritalin in lieu of educational and welfare initiatives, and so on.
But we cannot simply criticize medicine for trying to solve our social problems, because we are the society that fear and discriminate people with atypical bodies. These "normalizing" medicine do make many people's lives less horrible, while we are slowly working toward the long-term goal of eliminating the social factors that make medical interventions socially necessary.
Some have said that intersex is different from other disabilities because it evokes people's deeply held anxieties about gender and sexuality. But the same can be said for many other disabilities as well. For example, Dreger points out that somewhere deep into the multitude of reasons the society has for not recognizing that conjoined twins can live happy and productive lives without separation surgeries is our anxiety about sexuality and individuality: after all, you can't date or have sex when your brother or sister is sitting next to you. And the long history of eugenic policies and impulses that have regulated disabled people's sexual reproduction is a proof that our anxieties about sexuality and our anxieties about bodily differences are intertwined. Of course, that homosexuality was considered in need of medical intervention--and that gender identity disorder continues to be construed as such--is another sign.
Let's bring the subject back to the new term, DSD. After speaking with many people, intersex activists and non-activists, as well as parents and advocates, I came to the conclusion that I would endorse the change from intersex to DSD. The main reason for this is pragmatic: the word "intersex" simply didn't work, and I don't foresee that situation changing. Even with the negative connotation associated with the word "disorder," DSD is a term that I think many patients and their family members can use to describe who they are.
Of course, the shift from "intersex" to DSD might be seen by some as the collusion with conservative politics. Two legitimate challenges can be raised against my decision to endorse the move. First, whereas intersex movement of the past has critiqued the medical model, the new intersex (or DSD) movement is now dropping this struggle and embracing its former enemy. Second, whereas intersex movement of the past has pushed the envelope of our gender and sexual discourses, the new intersex movement is now retreating from these frontlines. Again, these are legitimate questions.
To the first question, and for all others worried about the negative connotation associated with the word "disorder," I'd like to think of the shift not as the embracement of the medical model, but a commitment to the political strategy that seeks to radically redefine and re-read it. I'd like to think of the medical label not as the source of stigma, but a link to the rich analyses and history of accomplishments of the radical disability rights movement and Disability Studies.
To the second question, I'd like to remind ourselves that our gender and sexual frontlines are not distinct from the battleground of disability politics. The fact that the society often treats disabled people as if they are de-sexualized, gender-neutered persons is actually a reflection of how nervous our society is about the sexuality and gender of the disabled people. For intersex people to truly achieve acceptance, it makes no sense to retreat from the conversations about gender and sexuality; it's not one or the other, but both at the same time.
Rather than attempting to de-pathologize this condition or that condition, I'm interested in de-pathologizing the concept of pathology itself. Medical categories can be useful if it existed solely to identify people's needs for medical services and technologies and to provide them. In the end, I hope to live in a society in which people with various so-called "disorders," or specific needs for medical services and technologies, can live their lives to their fullest potential, without having to become "normal."
Of course, it's not easy to overthrow a medical paradigm that revolves around what is "normal" and what isn't and replace it with the one that maximizes happiness. But I believe that the radical disability movement and critical disability theories have the framework needed to begin that effort.
In conclusion, I am endorsing the shift from "intersex" to DSD not as a simple gesture of either defeat or confidence, but as a way to affect gradual reforms of the medical model that pathologizes intersexuality and simultaneously to collaborate, to build links with the tradition of radical disability activists and theorists who are seeking to uproot it.
