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Note: The following article appeared on Jan. 17, 2003 issue of Just Out, a Portland, Oregon area bimonthly newspaper for the LGBT community. The text is reprinted here with the permission of Just Out and the author. With the permission of the author, we have included comments ([note: ...]) in order to correct factual errors.
In the documentary Hermaphrodites Speak! Angela Moreno describes an operation she had at age 12. This intervention was treated as an "emergency" but with a twist: It was essentially to correct a cosmetic condition. While "emergency" and "cosmetic" would seem to be mutually exclusive terms, in one particular area the medical establishment has for decades reconciled them in a radical--and largely destructive--way.
Moreno's surgery was a clitorectomy (also called clitoridectomy), performed because it was determined that her clitoris was "too large." This was not a life-threatening condition, nor did it indicate illness or disease. Still, "experts" determined that surgery was essential.
As it turns out, Moreno's story is one of many variations on a theme. Since at least the 1920s, but more popularly from the 1950s to today, genital ambiguities--most typically a micropenis on a male or an oversize clitoris on a female--are considered so problematic they require "corrective" surgery. Typically, in the presence of an underdeveloped penis, the penis is removed, a vagina is fashioned, and the child is raised as a girl. A large clitoris on a female child is either reduced or removed.
While the term "hermaphrodite" has been denounced by, among others, activist and professor Alice Dreger, who calls it "a nasty Victorian term invented in an effort to make intersexuality go away," Moreno is clear about what was lost in her operation and that of others who have undergone the same treatment: "a hermaphroditic eroticism," a "sacred sexuality" that was "ripped from us."
Of course, by age 12 Moreno had some conception of what this meant. She had a conscious previous life, an identity determined in part by her physical self and her sensations as a post-surgery basis for comparison. Children operated on within the first two years of life (the usual time) have no way to judge whether the procedure makes sense and no way to protest or stop it if it doesn't.
Moreno's loss of a kind of erotic feeling is echoed in the stories of many intersex people, but in some cases all physical sensation is lost (hence a mild to extreme lack of sexual satisfaction) as well as a firm sense of identity that allows the person to exist reasonably in the world.
For activists like Emi Koyama, writing on her Intersex Initiative of Portland Web site, the trauma is not only physical. "Many intersex adults report that it was not necessarily the surgery that was most devastating for their self-esteem: For many, it is the repeated exposure to what we call 'medical display' or the rampant practice where a child is stripped down to nude and placed on the bed while many doctors, nurses, medical students and others come in and out of the room, touching and prodding and laughing to each other. Children who experience this get the distinct sense that there is something terribly wrong with who they are and are deeply traumatized."
In the past 10 years, perhaps influenced by ACT UP and the wave of psychiatric and queer-tinged patient advocacy groups, the protests against radical surgery as a blanket response to genital ambiguity have become increasingly vocal--and surprisingly successful.
What does "intersex" mean?
Intersex is an elusive concept, but both the medical establishment and the activist community agree that the starting point for definition is "atypical genitalia." This can take many forms: having both ovarian and testicular tissue in one individual; the commonly remarked micropenis/hypoclitoris phenomenon; and varying kinds of discrepancies between chromosomal identity and the external genitals, where, for instance, the chromosomes indicate male but the genitals appear to indicate female.
While increasingly replacing loaded words like "hermaphrodite," the term "intersex" is still so misunderstood in the popular mind-set that the most famous "intersex" story is not really about intersex at all. This is the widely reported case of David Reimer, born Bruce, a twin whose circumcision was botched.
Reimer's doctor, acting according to accepted protocol, amputated his penis and convinced the family to raise the chromosomal boy as a girl, with the identity reinforced by therapy and hormones. Baby Boy Bruce became Baby Girl Brenda, just like that.
The case was frequently cited to prove Johns Hopkins University psychologist John Money's theory that gender could be "assigned" for up to two years after birth, being the product of nurture rather than nature. Reimer's twin, Brian, whose circumcision was successful, was used as a "control" in the experiment.
The only problem was that at age 14, after a very difficult childhood, Reimer's parents told him about his medical history, and he immediately renounced his female identity, changed his name to David, underwent phalloplasty and eventually got married and became father to his wife's children from a previous marriage.
Money's theories have been crucial in supporting the medical establishment's widespread use of sex reassignment surgery, and the case of Reimer continues to act as proof of success despite the fact that he reverted to his original genetic identity of male.
Conservative estimates, based on studies at Brown University and elsewhere, indicate that 1 in 2,000 babies, or five a day, is born intersexed in the United States. Yet data on how many have suffered as Reimer did have been difficult to gather. The silence around this issue, both from the medical establishment and in the families affected, has been deafening until recently.
Another statistic: 9 out of 10 of these surgeries are clitorectomies. A quote from a Harvard doctor is often cited in this context: "It's easier to dig a hole than to build a pole."
The medical establishment
At the Creating Change conference last November in Portland, the New Jersey-based intersex advocacy organization Bodies Like Ours presented a forum on this complex issue. According to outreach director and co-founder Betsy Driver, parents are kept in the dark about the entire process and may in fact be frequently misled to think that "there are no people who survived like her."
They are simply told that in the case of boys with micropenises, for example, "This child is better off being raised female." The medical motto, according to Driver, seems to be "Do it, do it early, and don't discuss it."
The activist, who described an array of emotional and physical problems that have plagued her since her surgery, asserts, "Surgeries rob children of the quality of life and the right to bodily integrity." She spoke about the strange "desperation" by the medical establishment to "make it right" regardless of the cost on the individual child.
Koyama, who taught the first course in intersex studies at Portland State University, agrees. "They don't want queer bodies."
Getting rid of these troubling "queer bodies" has for decades been the province of doctors. One of the tools used by advocacy groups such as the Intersex Society of North America and Bodies Like Ours is a standard medical training video in which a doctor calmly describes what must be done about the condition once it becomes apparent. His choice of words is telling. "The finding of ambiguous genitalia in a newborn is a medical and social emergency. When the cause is established and gender assignment is made, the abnormal genitalia must be corrected."
Advocates increasingly question why this is such an emergency. Medically speaking, radical surgery is not necessary unless there is an underlying pathology, which is frequently not the case. Socially speaking is another matter.
"Many doctors believe [surgery] will make the parents' distress end and will prevent the child from feeling any distress," ISNA board member Alice Dreger says. "In fact, these surgeries carry great risks, including risks to genital sensation, which the child will need later for a healthy sex life; continence; fertility; and life."
Koyama talks about the difficulty of dealing with doctors, who tend to dismiss the concerns of intersex activists, even those who can personally attest to the failure of these surgeries and the long-term consequences that are essentially irreversible. She notes a typical doctor's reaction: "You say you have problems with your sexual sensation because of surgery, but 30 percent of women are not orgasmic anyway, so how do you know it's because we chopped off your clitoris?"
For Koyama and others, the whole process has the aura of ritual abuse. These operations are "something done by adults who are supposed to be trusted, perceived as normal," she says. "There is so much secrecy and silence going on that the children grow up feeling the secrecy and isolation. You can't tell anybody about it. Children learn that there's something horribly wrong with them and their sexuality"--a concept reinforced by the frequent genital scarring and a pervasive feeling of disconnect between the body and the mind that makes the much-touted goal of a "normal life" elusive.
"Society doesn't want deviation in general," Koyama continues. "Physical differences are corrected without consent, even if it doesn't help the child's quality of life." The goal of the ISNA and other activist organizations is to change the protocol.
The medical establishment's reaction--with some recent exceptions--is typified in comments like that of Dr. Aydin Arici, an obstetrician and gynecologist at Yale-New Haven Hospital, who performs such surgeries: "It is irrelevant if the sex assignment is male or female, as long as there is an early sex assignment, and the parents understand what they have: either a boy or a girl." Nurture trumps nature.
The ISNA
Leading the charge against unwilling sex-reassignment operations are those most viscerally affected by them: the now-grown children who have been subjected to genital surgeries for decades. Wresting power from an often hidebound medical establishment is never easy, but groups like ACT UP have shown how effective grassroots organizing can be.
Hermaphrodites Speak! director Cheryl Chase was born a boy but surgically altered to become a girl at 18 months when doctors decided that her micropenis was in fact an unnaturally large clitoris and had to be removed. What followed were a troubled adolescence, a family nearly destroyed by what she calls the "secrecy and shame" and eventually a move to San Francisco, ground zero for gender-bending.
There she found a vibrant, welcoming queer and tranny community, as well as the emotional and financial support necessary to start ISNA, the world's first advocacy group for the intersexed, in 1993. This month the group is moving its headquarters from northern California to Seattle.
"I found others who had been treated in ways very similar to myself," Chase told Curve magazine. "Everybody that I had met had suffered in complete and total shame and isolation and believed that they were the only one."
ISNA, she decided, would be organized around ending that shame. The stated mission: "to create a world free of secrecy, shame and unwanted genital surgery for intersexed people."
Koyama, who has worked with ISNA as an activist-in-residence, notes the group's success in outreach to both the intersex community (partially through a robust Web site) and to the medical community, which has been a tougher sell. "Before ISNA," she says, "there was no organizing. Nobody was making a political movement. Cheryl was really persistent and really patient."
The organization has been highly visible, working through the media and at academic and medical conferences to make more people aware of the issue. This success has also spawned other, more specialized groups. Bodies Like Ours, for example, has shown particular expertise in the medical issues surrounding intersex.
"They do a really good job of speaking to the medical field," affirms Koyama. "It's easy to shout something at the medical community, but it's really difficult to get them to listen." [note: the "they" in the first sentence refers to ISNA.]
ISNA's message has not been to stop all surgeries, only medically unnecessary ones. The organization supports a "patient-centered model" rather than a "concealment-based model."
This preferred model calls intersex "a problem of stigma and trauma, not gender" and emphasizes the need for professional mental health care to handle the challenges involved. Parental distress should not be treated by surgery on the child. And "all children should be assigned as boy or girl, without early surgery."
Some of the complexity and controversy surrounding intersex is evident from the last item. Even intersex advocates diverge on the issue of binary gender roles, with some saying there should be a third gender indicated from birth.
The idea of an "I" being placed on a driver's license has been proposed, but as Koyama says: "I don't think driver's licenses need gender, but as long as they have it, it should be based on what people identify as, not on what their genitals look like. What people who want to create the 'I' category in the driver's license are saying is, if your genitals look like this, then you have to be this."
ISNA and Bodies Like Ours have convinced an increasing number of medical facilities--including hospitals in Oakland, Calif., and Ann Arbor, Mich.--to stop automatically performing these surgeries and rethink the protocol.
There have also been conversions of individual doctors, such as Johns Hopkins' Bill Reimer, who has acknowledged ISNA's influence on his decision to switch from performing surgeries to becoming a pediatric psychiatrist whose practice includes treating children with atypical genitalia.
The media
The media remain a crucial but often fickle friend to queer communities--more so to intersex people. Koyama cites episodes of ER (good) and Friends (bad) as examples of growing awareness, for better or worse, of the issue in the popular imagination. [note: Emi actually did not say that ER did a good job. Everwood, yes. Freaks and Geeks, yes. ER, no.]
More in-depth portrayals have been presented by the Discovery Channel, PBS and ABC's 20/20 in the past year or so. Discovery's special Is It a Boy or a Girl?--nominated for an award by the Gay and Lesbian Alliance Against Defamation--presented a balanced account, but PBS failed to interview a single intersex person for its one-hour Nova documentary on the subject (except David Reimer, the "intersex poster boy" who is not intersex). The 20/20 segment "Intersex Babies" included a long clip from Hermaphrodites Speak!
Interestingly, the issue of the genital mutilation of African and Middle Eastern women has received considerable media attention in the past decade or so. Alice Walker's book and film Warrior Marks introduced the subject into the national dialogue, and some intersex advocates have complained that the same sense of outrage has been absent from discussions of the phenomenon in the United States.
Even some prominent feminists, including Germaine Greer, have shown indifference or hostility to the idea of intersex (echoing prominent feminists' indifference or hostility to the idea of lesbian decades ago).
Activism
Queer observers may find the hysteria around the issue of intersex reminiscent of historical homophobia. There's a familiar ring to the "concealment-based model" used by the medical establishment, the shame and secrecy associated with the intersex condition, the need to protect parents from the distress of knowing their child is different, the feeling that being different from one's peers is so horrific that any intervention is justifiable.
The "queer bodies" Koyama speaks of have an enormous power but also represent a considerable threat to cultures used to enforcing rigid gender norms. With the queer community now well entrenched in the larger world and activism expected, if not always welcome, there's little the medical community can do but accept (even if there's still a long way to go). And education on homosexuality and transsexuality has been increasingly widespread, allowing a consistent, undeniable discussion of these issues.
On the other hand, intersex people, most of them altered irrevocably at or near birth, continue to be defined largely by the medical community.
Are intersex people and queer people thus natural partners in this struggle? It's a complicated issue.
Koyama's work extends into many activist areas (she describes herself as a "multi-issue social justice slut"), and she has found important allies in the queer community. "In 1996 the Transsexual Menace said: 'You should do direct action. You can't just have a conversation with people who want to eliminate you.' So [ISNA] had the first public demonstration in Boston," she says, during a big medical conference. Activists handed out fliers, alerted the media and had an intersex person and several transsexuals help with questions and comments. [note: Transexual Menace needs to be spelled with one "s," not two. See Read My Lips by Riki Wilchins for explanation.]
"The media went to see the doctors," remembers Koyama, "and they denied it. So we went back and found the document from the AMA and said, 'Look, this is the medical standard that they publish, this is what they say.'" [note: first, Emi was not involved in intersex activism at the time; second, it was American Academy of Pediatrics, not American Medical Association.]
Shedding light on the disparity between perceived outcome of patient care and reality is ISNA's strong point. "The doctors always say all the patients are happy with what they receive," grouses Koyama. "I met a doctor who told me that every single patient was satisfied with the treatment. We knew three people who were operated on by this same guy--what the doctors really mean is that nobody has threatened to kill them!"
Are they queer?
Koyama has compiled the pamphlet Introduction to Intersex Activism: A Guide for Gay, Lesbian, Bisexual and Trans Allies. It offers a basic introduction to the topic and suggests ways to build coalitions between the intersex and queer communities, including listening to intersex people, supporting the work of intersex activists and being realistic in understanding that there are differences in priorities and agendas between the two--including the serious medical issues affecting the intersexed.
Asked the inevitable question of whether "I" should be added to GLBT, Koyama cautions: "Intersex people as a group generally do not take it on as an identity the way that many GLBT people do. If a group or organization is about pride and cultural activities, adding 'I' may not include most intersex people but only certain ones who claim intersex as an identity."
An identity, however, can provide activist clout. "There's a certain political significance to taking it on as an identity," Koyama notes. "Some organizations have added 'I' without really thinking. But we [ISNA and others] are talking about stopping people from butchering kids. Honoring diversity and celebrating bodies is wonderful, but it's not the agenda we have as intersex activists."
Want to learn more?
The Web has been an essential part of publicizing and building the intersex movement, countering misperceptions and making the many issues that surround intersex intelligible. Here are a few places to surf for important resources and virtual community centers: