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Making The Cut
http://www.msmagazine.com/oct00/makingthecut.html
On New Year's Eve, I sit with an acquaintance and talk. We are nearing the end of a long, pleasant evening. My friend, also a writer, leans toward me into the little circle of privacy we've created. "So you mean what happens to African girls?" she asks, after I tell her what I am working on. "No," I say. "I mean what happens to children in the United States." And as I explain the details of the story, she earnestly watches my face, then sits back, stunned. "I am astonished," she says, and I have to agree with her. It is an astonishing story.
The tale begins in England. It is 1858, and the Victorian Age is in full swing. A respected gynaecologist named Isaac Baker Brown, who later served as president of the Medical Society of London, has an interesting theory about women: most of their diseases, he believes, can be attributed to over-excitement of the nervous system, and the pubic nerve, which runs into the clitoris, is particularly powerful. When aggravated by habitual stimulation, this nerve puts undue stress on the health of women. He lists what he calls the eight stages of progressive disease triggered by masturbation: first comes hysteria, followed by spinal irritation, hysterical epilepsy, cataleptic fits, epileptic fits, idiocy, mania, and finally, death.
Baker Brown wasn't alone in his focus on "excessive venereal indulgence." A cultural obsession with masturbation had been building since the end of the eighteenth century and would reach its zenith in Britain and the U.S. in the early 1900s. Various methods had been tried for decades to curb the habit in girls and women, including applying caustic substances to the clitoris and vulva to produce a chronic sore, but masturbation continued unabated. Its consequences, believed to be chiefly hysteria and epilepsy, were becoming nearly epidemic in some people's opinion. The cure Baker Brown offered was complete excision of the clitoris with scissors, packing the wound with lint, administering opium via the rectum, and strictly observing the patient. Within a month, the wound usually healed, and according to Baker Brown, intractable women became happy wives; rebellious teenage girls settled back into the bosom of their families; and married women formerly averse to sexual duties became pregnant.
Physicians had been recommending clitoridectomy for masturbation since the writings of ibn Sina, the tenth-century Persian scholar, but it never became a regular procedure. And they had been removing clitorises that were diseased or so large they interfered with intercourse for at least a century before Baker Brown. But what made Baker Brown the "inventor" of the medical clitoridectomy was his sterling reputation, the scale on which he carried out his surgeries, and the fact that he popularized his method in a book called On the Curability of Certain Forms of Insanity, Epilepsy, Catalepsy, and Hysteria in Females.
Eventually Baker Brown fell out of favour with a medical establishment that would have preferred more discretion about women's genitals. But before his fall from grace, Baker Brown influenced U.S. doctors, who were discussing his procedure in medical journals by 1866. It was used off and on for decades to stop masturbation, nymphomania, and hysteria. In 1894, a surgeon reported in the New Orleans Medical and Surgical Journal that he had excised the clitoris of a 2 1/2-year-old to stop her from masturbating and slipping into insanity. He noted that after the operation, she had "grown stouter, more playful, and (had) ceased masturbating entirely." As late as 1937, Holt's Diseases of Infancy and Childhood, a respected medical-school text, stated that the author was "not averse to circumcision in girls or cauterization of the clitoris." A couple of years ago, I spoke with a 66-year-old woman in Michigan who had a secret to tell me: as a 12-year-old in 1944, her parents took her on a car ride that ended at a doctor's office. There, as she sat on the exam table, an attendant clamped an ether-soaked rag over her mouth from behind. When she woke up, her clitoris was gone. "They tried to keep me from masturbating," she said. Then, after a pause, added, "Didn't work."
Toward the middle of the 1950s, just as U.S. medicine seemed to be awakening to the brutality and ineffectiveness of clitoridectomies as a means to control behaviour, it found another use for the procedure. This time the rationale was that the operation could be used to make a child whose clitoris appeared bigger than other girls' look "normal," thus helping the child, and everyone around her, feel more comfortable. In 1966, a full century after Baker Brown's clitoridectomies were first discussed in this country, this recommendation appeared in the Journal of Surgery: "Some persons have been reluctant to advocate excision of even the most grotesquely enlarged clitoris. . . . half-way measures are much less satisfactory than complete clitoridectomy." Given this attitude, in 1966, was any girl in the U.S. whose clitoris protruded noticeably beyond her labia at risk of getting it amputated? Yes. Would a girl in the year 2000 still be at risk of losing at least part of her clitoris? Yes.
The rationale for clitoridectomy in Baker Brown's time was straightforwardly terrible, and ridiculously unscientific. By contrast, modern theories seem slightly more humane, but when you get down to it, the same question of gender links the Victorian Age's clitoridectomy to its Dot-Com Age cousin. We have been altering the healthy genitals of our children-—boys as well as girls-—for 135 years so that a girl will look and act like a girl, and a boy will look and act like a boy, according to social norms. The strict division between female and male bodies and behaviour is our most cherished and comforting truth. Mess with that bedrock belief, and the ground beneath our feet starts to tremble.
To begin with, we rely on the notion that the bodies of females and males are distinctly different. We imagine a dividing line with penis, scrotum, testicles, testosterone, and XY chromosomes on one side, and clitoris, vagina, uterus, ovaries, oestrogen, and XX chromosomes on the other. But were we to look between the legs and into the chemical and chromosomal makeup of real people, we would see that nature often refuses to abide by that tidy division.
Over the past 50 years, medicine has established standards for female and male bodies. Girls, if they want to perceive themselves, or be perceived, as fully "feminine," should have clitorises no longer than about 3/8 inch at birth. Boys, if they hope to grow up "masculine," should have penises that are about one inch in stretched length at birth. (Variation in phallus length can be a sign of an underlying medical problem, but it is also used for non-medical judgments about "normality.") Girls should have vaginas fit for future intercourse, and boys should have urethral openings at the tip of the penis.
By eight weeks gestation, all external foetal genitals have the potential to develop into what we think of as female or male genitals. The genitals will become female if testosterone, or a hormone that mimics testosterone, does not interfere. If it does, then the clitoris extends to make a penis and the inner labia wrap around the underside of the penis and fuse to form the penile urethra. The outer labia come together to create the scrotum. The process for the internal sexual organs is similar. All foetuses start out with precursors of female and male sex organs. By the third foetal month, if the rudimentary male ducts have not been triggered to mature into testes and vas deferens, they will disappear. The female ducts will then grow and develop into ovaries and a uterus.
But this intricate and elegant development of external and internal sexual organs is a journey prone to detours caused by all sorts of influences like maternal hormones, drugs, genetic disposition, environmental hazards, and chance. Sometimes clitorises look more like penises. Sometimes the outer labia on a girl baby fuse into a scrotal-looking sac so her genitals may appear almost indistinguishable from a typical newborn baby boy's. Sometimes a boy's scrotum is empty, his testes undescended, and his penis tiny. Some vaginas end before they reach the uterus.
These variations occur more frequently than most of us assume. According to Anne Fausto-Sterling, professor of biology and women's studies at Brown University, and author of Sexing the Body: Gender Politics and the Construction of Sexuality, in almost 2 percent of live births, or approximately 80,000 births a year, there is some genital anomaly. And out of those, about 2,600 children a year are born with genitals that are not instantly recognizable as female or male. Once Baker Brown's methods fell into disfavour, most such children, if born in the U.S. in the first half of the century with non-life-threatening differences, would have been left alone to navigate the world with genitals that someone might notice as odd. But by the 1950s, attitudes toward intervention were changing. Research by John Money, a young sexologist at Johns Hopkins University, suggested that a child's genitals could be altered during the first 18 months of life without undue problems for that child. Along with improved surgical skills and commercially available hormones, this led medicine into a protocol of intervention that still stands. If a girl's clitoris looks a bit too much like a penis, then all or part should be removed. If a boy's penis is too small to function as a "real" man's, that boy would be better raised as a girl, his penis pared down to approximate a clitoris, and his body further altered by hormones and surgery to look female. This remains a practical, not a theoretical, protocol. Approximately 2,000 children a year have genital surgery in the U.S. Experts say the vast majority are girls who lose parts of their clitorises and, less commonly, little boys who are changed into girls in an attempt to give them what doctors believe will be a better life.
These children are called intersexed by the medical world, no matter what their chromosomal makeup. Surgeons perform cosmetic genital surgeries on these children so that they, their parents, and caregivers will have an unwavering notion of them as one sex or the other.
Most modern surgeons prefer techniques that strive for a better cosmetic result than the "clear-cut" look of earlier procedures. (Though as pediatric urologist Kenneth Glassberg points out, "good cosmetic appearance does not guarantee good sexual function.") All procedures to remove or change the appearance of the clitoris are now grouped under the term "clitoroplasty"-—a word coined in the early 1970s as an inclusive term and perhaps as a way to distance new surgical techniques from the old. Clitoroplasty can be part of a broader procedure called "feminizing genitoplasty" that includes the building of a vagina and the fashioning of labia to make a more feminine-looking genital area.
There are basically three ways to make a clitoris look smaller without removing the entire organ. The most frequently used method is clitoral reduction, where surgeons free the shaft and glans from the surrounding tissue and peel away the skin that covers it. Then they cut out pieces of the shaft to shorten the clitoris before sewing the glans up tighter to the pubic bone. (It's a little like someone taking out sections of the bones in your arm and sewing your hand up closer to your shoulder.) Sometimes a surgeon will make a running stitch along both sides of the shaft and accordion the entire clitoris back, sort of squishing it against the pubic bone. The third technique is what one surgeon calls "magic with skin." The skin is repositioned around the clitoris so it looks smaller, without actually taking away any tissue.
All over this country there are people whose clitorises have been removed, either totally or partially. They range from your great-aunt's roommate in the nursing home to your neighbour’s two-year-old. They include hundreds of women from every generation. Some were born clearly female; some were born clearly male but were reassigned as female and then had their genitals altered; and some were babies whose sex was not so easy to define. Although statistics for childhood clitoral surgery are extremely difficult to gather, one can extrapolate a figure from the number of babies born each year in the U.S., the number born with conditions that produce enlarged clitorises, and the number-—most of them-—who will undergo clitoroplasty. Approximately five times a day in the U.S., surgeons change the size and shape of a child's healthy clitoris. Few of these children are capable of expressing what they want. Some, if given the choice later in life, might choose clitoroplasty. But judging from the responses of women who had the surgery done either without their agreement or at an age when they were too young to know what they were agreeing to, many would have preferred to stay the way they were.
Gaby Tako was born in the Bronx just before Christmas in 1960. She arrived so fast that her mother had to give birth at home. The neighbourhood doctor hurried over to help and announced to the waiting parents, "Congratulations! It's a boy!" before quickly adding that he wasn't exactly sure about that. Gaby had labia fused into a scrotal-looking sac, a vagina that shared an opening with her urethra, and a big clitoris—not an untypical presentation for a girl with CAH-—congenital adrenal hyperplasia—a condition that causes the adrenal glands to produce too many male steroids, which in the case of girls, can masculine their genitals. One in about every 10,000 children is born with CAH. Because the disease can wreak havoc with the balance of chemicals in the body, it can be life-threatening. The large clitoris that often accompanies CAH gets bundled in with other medical concerns and often a clitoroplasty is done—primarily for cosmetic reasons. According to Cathy Kusch, spokesperson for Magic Foundation, which supports families whose children have CAH, many parents do seek second or third opinions when it comes to clitoral surgery, but in the end, the majority choose clitoroplasty. A medical paper written in 1994 affirms that "parents will feel reassured [after genital surgery on their child] when they know that their daughter can develop heterosexually just like other girls." In Gaby's case, her endocrinologist, unlike other doctors at that time, didn't think surgery on newborns was worth the risk. The decision was made to wait.
Gaby's early childhood was rough. Her body was different, and she knew it. "Between birth and age 13, I was never outright ashamed about my body because there are certain things you don't talk about in polite society. I don't remember anyone telling me that it was bad, but I picked up on the fact that I was different and that this was not a 'good' difference. The doctors would poke and prod me and because my genitals were always the centre of attention, that made me ashamed."
After having put the doctors off for several years, Gaby's mother and stepfather consented to surgery for her when she was 13. The surgeon told Gaby he was going to "fix her." "But I didn't know I was broken," says Tako. "I knew I was different but not that I was broken." As she awaited surgery, Gaby fantasized about climbing out of the windows of the hospital, escaping across the rooftops. "I had no way to articulate that this was not necessary." She awoke from surgery with searing pain. The surgeons had created a bottom portion for her vagina to make an outlet for menstrual blood. They split her labia and, in a procedure popular in the 1970s, buried her clitoris under a layer of skin. "Three and a half inches of coiled phallus with nowhere to go," is how Tako describes it now.
"I felt dirty after the surgery," she says. "I was, as we say, F.I.N.E.—fucked-up, insecure, neurotic, and emotional. My genitalia were never painful before, but since then, to one extent or another, they have been a source of pain." In a postsurgical visit to the doctor, Gaby asked, "Can't we undo this?" and the surgeon answered, "Why would you want to do that?" Today, Tako, who lives as a lesbian, considers herself a product of "forced feminization."
Until about six years ago, no one challenged the established protocol of altering the clitoris of a girl like Gaby, nor of any other child in our country. The U.S. public had no idea these surgeries were going on, and most doctors considered them a necessary treatment for a rare group of people. Medical schools spend only a few hours on the subject of intersexuality, with surgery hardly mentioned at all. Intersexed children with "abnormal" genitals are depicted in medical books naked and with a black band across their eyes in photographs, lending an aura of freakishness to them. They historically have been given the label "hermaphrodite," and further categorized as "true hermaphrodites" (people who have some ovarian and some testicular tissue), or "pseudohermaphrodites" (boys with testes and some feminine characteristics or girls with ovaries and some masculine characteristics). These names also serve to marginalize the children, hiding the fact that this is a far larger group than anyone realizes. Even the doctors who care for these patients as children know little or nothing about them as they grow into their adult lives. They are "fixed," like Gaby, and lost to follow-up.
For decades it was assumed that everything was more or less all right with these patients. Ian Aaronson, a pediatric urologist with a history of performing genital surgeries on girl babies, believes that most, who are now adult women, "have no idea they had surgery done and regard themselves as absolutely fine, and they look absolutely normal"—although he acknowledges there is no proof of that. But in 1993, a letter to the editor of The Sciences magazine began to cast doubt on the optimism of people like Aaronson. In an earlier issue of the magazine Anne Fausto-Sterling had written an article that she hoped would rattle the public's narrow thinking about sexual dimorphism. With tongue-in-very-erudite-cheek, she proposed that there are not two sexes, but five—male, female, herm (for hermaphrodite), ferm (for female pseudohermaphrodite), and merm ( for male pseudohermaphrodite). At the time, Cheryl Chase, a young businesswoman, had just returned to the U.S. from Japan, where she had helped found a successful software company. Chase had been born in 1956 and named Charlie. He was a little boy with a little penis. Eighteen months later, doctors found that Charlie had a uterus and ovaries and that each ovary had a small corner of testicular tissue. But because the ovaries were found to be functional, the decision was made to change his sex of rearing.
Charlie became Cheryl. What doctors had considered a "tiny" penis was now seen as a grossly large clitoris. In order to feminize the toddler, the surgeon incised deeply to obliterate any trace of a clitoris, removing the shaft along with the glans. Chase was left with a smooth, Barbie-doll look and a thin layer of scar tissue with no erotic sensation. On the advice of the doctors, her parents destroyed all evidence of her as a boy, and when it was time for her to begin school, they moved to another town where no one knew them.
When Cheryl was ten years old, her parents told her that when she was a baby, her clitoris had been "enlarged" and had had to be removed. Everything was fine now, they continued, but she should never tell anyone what was done to her. Chase describes herself as growing into a "withdrawn, depressed adolescent, trying to steal a glance of a woman's genitals" so she could figure out what she was supposed to look like. At age 19, she went searching for her medical records. After several years of struggle, she finally obtained them and discovered what had been done to her. The fact that her parents, doctors, and relatives had hidden the truth so completely from her confirmed its unspeakable nature. Suicide beckoned. "It is not possible," she remembers telling herself. "This cannot be anyone's story, much less mine. I don't want it."
Fifteen years later, in Japan, Chase suffered a "complete meltdown." She came back to the U.S. partly because she thought there would be help for her here. There wasn't. Not a single clinician she contacted, including John Money, the sexologist at Johns Hopkins, would acknowledge that her treatment might have done more harm than good, nor would they introduce her to others like her. It was during this time that she read Fausto-Sterling's article and fired off a letter to the editor announcing the formation of the Intersex Society of North America (ISNA) complete with post-office box address. Within weeks, Chase found her postbox stuffed with letters from people from all over the country who had had cosmetic genital surgery performed on them as children. All of them had grown up thinking there was no one else like them in the world. As of today, hundreds of intersexed adults and families, and scores of physicians worldwide, have contacted ISNA.
Chase's letter to The Sciences is noteworthy for three reasons: it marked the first time a person subjected to cosmetic genital surgery as a child had publicly broken the silence around this practice. It gave intersexed people a way to find each other. And it fostered the growth of a grassroots movement to change a surgical protocol so entrenched that surgeons fly all over the world to perform it gratis as a humanitarian gesture.
Justine Marut Schober is a paediatric urologist who specializes in surgery on children's genital and urinary systems. A respected surgeon in a male-dominated field, she has performed many clitoroplasties. In the late 1980s, as a paediatric urology fellow in London, she first began to wonder about the wisdom of changing a child's healthy genitals. "Even though we were taught to be very conservative with surgery, the more I thought about it, the more uncomfortable I became."
Back in the U.S., she was shocked to find that feminizing genitoplasties, including clitoroplasties, were used even more widely than in England. But she continued to perform them, even as her discomfort grew. Soon she began to seek out grown women who had been subjected to this procedure as children. She found Cheryl Chase and, through her, many others. "One of the worst things I learned was that they felt deprived of choice. Because this surgery might not be their choice. And with this surgery, you may deprive people of sexual sensitivity or possibly orgasmic potential or even just the right to have sex in the gender they feel most comfortable. It just started sickening me. I looked at the literature and there was nothing that told me if this surgery helped or hurt. That's when I stopped."
At a recent meeting of intersex specialists, Marut Schober described new research that shows the clitoris is more densely laced with erotic nerves than formerly believed, nerves one cannot avoid cutting in a clitoroplasty. She also pointed out that no one has ever found or cited a single case to support the long-term physical and psychological success of this surgery. And that is the most confounding issue. We simply do not know. Ian Aaronson may be right, maybe the good outcomes do outweigh the bad, but only now are studies being designed to register all patients with atypical sexual anatomy in order to accurately assess their quality of life and to follow them all the way through childhood and into adulthood.
Activists like Cheryl Chase and health care providers like Justine Marut Schober are calling for a new protocol-raise children with atypical genitals in a gender most appropriate to their bodies, provide counselling for them and their families, and allow decisions about genital plastic surgery to be made by the person whose genitals will be changed, at an age when they, not their anxious parents or well-meaning doctors, can give informed and educated consent. As William Reiner, a paediatric urologist turned child psychiatrist at Johns Hopkins, puts it, "If you've got a 14-year-old girl who comes in and says, 'I absolutely cannot tolerate this. It makes me think I'm a boy. I'm a girl, and I want my clitoris made smaller,' then after appropriate counselling, if she's still serious, we have to listen to her. She's a human being. She's not an adult, but so what? In other words, you can leave these clitorises alone for a long time and let the kids decide what they want to do."
Journalist John Colapinto recently wrote a book called As Nature Made Him: The Boy Who Was Raised as a Girl. It's about the boy John Money put forth as evidence that we can make a child any sex we want if we get to her or him early enough. Although Money was considered the leading exponent of genital surgery from the mid-fifties on, Colapinto points out that even then, research showed that surgery was not necessary. In his book, Colapinto reports on a careful study done in 1951 in the U.S., four years before the establishment of surgical protocols for atypical genitals. The study investigates 250 people with atypical genitals who were left untreated as babies. The study also includes interviews with ten people who either never received surgical or hormonal treatment or chose it when they were old enough to make their own decisions. Colapinto comments that the lives of these individuals, "only strengthened the investigator's impression that the condition of the genitalia plays a strikingly insignificant part in the way a person develops a stable and healthy gender identity, not to mention a secure and confident self-image."
This positive picture of gender development with either a large, healthy clitoris or a small, healthy penis was painted by none other than John Money, whose work helped convince four generations of doctors that such a clitoris or penis would cause a child irreparable difficulty. The study was Money's Ph.D. dissertation, never commercially published or distributed. After reading of this study and knowing what followed-—the long, unexamined practice of cutting into children's genitals to make them more acceptable-—the practice seems like a sad, avoidable mistake.
A big clitoris on a girl or woman in the 1600s, when discovered by a witch hunter, was seen as a "devil's teat." It alone was enough to condemn her to death. We are more civilized today. We're beyond witch hunting, and we're appalled by countries that routinely clitoridectomize their daughters. But we still treat a bigger than average clitoris on a child as fair game. If her parents or doctors want it made smaller, it will be made smaller. She can do nothing to stop it. But the world is changing. People with atypical genitals are no longer solely relegated to "interesting case" status and tucked away in medical books. Their stories, in their own voices, can be read in books, magazines, or on the Web. These stories bring a new and crucial perspective to an old and damaging view of difference.
Recently, a paediatric endocrinologist wrote to me that he believes children born with atypical genitals face difficulties in our culture, whether their genitals are surgically corrected or not. "The point," he said, "is how to make the landing as soft as possible." In the fall of 1999, the North American Task Force on Intersexuality was created to develop that soft landing. The task force is a small group of strange bedfellows-psychologists and surgeons, social scientists and medical doctors. Ian Aaronson, Justine Marut Schober, and William Reiner are members, as is Cheryl Chase. People are talking to each other at last and change is in the air. The story of clitoridectomy in the U.S.-—a procedure whose name, technique, and intention changes with the society it serves-—began with Isaac Baker Brown, but it just might end with us.
Martha Coventry writes about medicine, family, and the "beauty of the world" from her home in the Midwest.
Contact the Intersex Society of North America at P.O. Box 3070, Ann Arbor, Mich. 48106-3070
>>e-mail: >> Web: www.isna.org.
Copyright Ms. Magazine 2002- 2005
