Intersexuals Fight Back

By Katherine A. Mason, New Haven Advocate. Posted April 3, 2001.

Carl* looks like a man. He's compact and strong, with unshaven stubble on his cheeks and construction boots on his feet. His West Haven home is filled with man stuff: military paraphernalia, sporting equipment, hardwood furniture that could take a pummeling. He works with his hands for a living, has a steady girlfriend and lifts weights. To all appearances, he is 100 percent red-blooded Man.

Appearances are deceiving.

"Don't be fooled by all of this," Carl says, giggling like a nervous schoolgirl, a shrill, uneasy giggle that repeats itself every time he reveals something new about his past. "I'm overcompensating. This isn't me. But this is what I have to do." Carl behaves like a stereotypical man, he says, because that's what society expects of him. But he's pretty sure that man is not what nature intended for him. From an early age, he felt more like a girl than a boy. He preferred the company of girls, their games, hairstyles and clothing. He began cross-dressing as a child, and continued through high school, later risking discharge from the military for the sake of women's underwear.

Unlike with most transgendered individuals, Carl's psychological gender ambiguity is matched by a physical ambiguity. Carl is intersexed.

Like many thousands of other people across the country, he was born neither clearly male nor clearly female. In the words of Greek mythology, he was a hermaphrodite. (Because of the monsterlike mythical creature this term refers to, the intersexed movement has rejected it.) Although he now functions as a male, his external genitalia were ambiguous enough at birth that doctors initially labeled him female.

"'When you were born, the doctor thought you were a girl. It was on the birth certificate and everything,'" Carl recalls his mother telling him when he was a child. But somewhere along the line, Carl became a boy. He doesn't know when or how this happened, and, though Carl is now in his 30s, his parents still won't discuss it with him. "My mother said, 'Everything was done to make sure that you were a boy.' What she meant by this, I didn't really understand. But I believe that things were done to me," he says.

Despite his anger, Carl is too burdened by the shame and deception surrounding his birth to seek out medical records on his own. He knows that something terrible was done to his body that determined that he would be male-a decision made without his consent and, he believes, without his own best interests in mind. He knows that later, at puberty, he was subjected to countless hospital visits in New Haven, where he was given pills and injections that he believes contained testosterone. He also knows that he is infertile. But his knowledge stops there. Carl's mother has taken care to hide any evidence of his life as a girl. After he caught sight (as an adult) of his birth announcement in a family photo album-and saw that it was an announcement for the birth of a daughter, not of a son-Carl's mother hid the announcement and later denied that it was ever there.

"My parents have their own brand of ethics," he says. "Families first, individuals second."

Carl's story is repeated hundreds of times each year with babies born everywhere in the United States and in most European countries. Doctors regularly use surgery and hormones to make a child look male or female when nature will not make up its mind-which happens in an estimated 1 of every 2,000 births. Like Carl, many become angry as teenagers and adults when they learn what their doctors and parents did. Now the intersexed are fighting back. They have enlisted the help of doctors who have had second thoughts about the practice they took for granted and of intellectuals who believe the system should be changed. In the process, they are challenging all of society to rethink the strict notions of what makes us male or female. Standard medical practice dictates that intersex births like Carl's are emergencies that must be "assigned" male or female and "corrected" immediately to spare the parents the anguish of uncertainty, with no thought as to what the children would want. The primary obligation, as in Carl's case, is to the family.

"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," says Dr. Aydin Arici, an obstetrician and gynecologist at Yale-New Haven Hospital who specializes in reproductive endocrinology and has dealt with many intersex births.

Arici and many other physicians regularly recommend drastic cosmetic surgeries on intersexed infants, usually within the first year and often within the first months of life. The initial procedures are usually followed with hormone treatment and often with further surgeries. The goal is to create an appearance of normality, so that relatives and later sexual partners who see or touch the genitals will not be surprised or upset, and will not transfer their own distress onto the child.

"The assumption is that the kid won't grow up feeling normal if her genitals look bad, because she will be treated like a freak," says Dr. Charlotte Boney, a pediatric endocrinologist at Rhode Island Hospital in Providence. "There is little medical evidence to support the assumptions. But there is circumstantial evidence that babies operated on are unhappy."

Carl's misery-and his resentment toward his parents and doctors-are not circumstantial but very real. "My father said, 'We did a lot of things for you when you were born. You should be thankful,'" Carl says. He giggles and then becomes deadly serious. "I don't know if I can thank him for it now."

If Cheryl Chase has her way, Carl will no longer be expected to thank anyone. Born a "true hermaphrodite" (see accompanying story, "The Science of Intersexuality") and labeled a boy at birth, Cheryl was reassigned female 18 months later. At that time, surgeons performed a complete clitorectomy, removing her entire phallus, which they reinterpreted as a large clitoris, and destroying her potential for sexual pleasure later in life. At age 8, the testicular portions of her gonads were removed, and Cheryl eventually began menstruating. Doctors considered her lucky: Cheryl, unlike many intersexed people, was fertile. "They said that the clitoris was something that might have been a penis if I were a boy, but that since I was a girl I didn't need a clitoris because I had a vagina," Cheryl says of her parents' first attempts to explain what had happened to her. "Female sexual function was worth nothing."

By adolescence, Cheryl knew enough about sexuality to disagree with her parents' assessment. But she still did not know why she didn't have a clitoris. Her parents told her nothing. Like Carl's parents, they took pains to hide her brief life as a boy from her, and Cheryl did not discover her complete history until she was in her 30s.

The secrecy and shame associated with her intersexuality, Cheryl says, destroyed her family and, at least temporarily, her own sanity as well.

"The humiliation for my parents and the way that doctors dealt with it made me feel its impact from an early age. My parents were always mad at me and filled with anxiety," says Cheryl, who currently lives in Ann Arbor, Mich. "I felt betrayed by the people who are supposed to take care of me."

Unlike Carl, Cheryl isn't just getting angry. She's getting organized. In 1993, she formed the Intersex Society of North America, or ISNA, from her home in San Francisco's gender-twisting community, with the primary goal of healing intersexed people, particularly those maimed by childhood surgeries and other unwanted treatments. At first she was mostly concerned with simply reaching out to people who thought no one else in the world understood their plight. But in the years that followed, the ISNA rapidly politicized, developing goals that were strict and unforgiving: destigmatize intersex births and stop genital surgery on infants. End the shame and the secrecy. Fight back.

But exactly who-or what-were they fighting?

"I knew I was different from the moment I was capable of thought."

Max Beck, now a married father in his mid-30s who lives in Atlanta, is recalling his uneasy childhood as a girl as he balances his own baby daughter-an unambiguously female infant-on his knee. She gurgles and he coos at her. "I knew that something was weird and off. There were dark, secret, clandestine appointments once a year in New York where they looked between my legs. I knew there was something horrible there that wasn't talked about."

Max was 24 before he found out what that something was. At birth, doctors thought he was a boy. Then they changed their minds. "I was assigned a female because they didn't think I had a viable penis. At 17 months, the small phallus was a clitoris. It hadn't changed but their perceptions had."

The clitoris was mostly removed, along with his underdeveloped testes, and Max was raised as Judy. He was always an uneasy girl. "I thought I was a freak, a monster-but it never occurred to me that stuff I was feeling and ways I was acting had to do with a masculine gender identity."

Judy dropped out of college, attempted suicide and was briefly married to a man before meeting her current wife, Tamara, and making contact with the ISNA. The group, Max says, saved his life.

"I felt like I'd never meet another like me in my life," he says.

Soon after that, he began taking testosterone and transitioned into a male. But he remained sterile and without a functioning penis. That was taken away from him as a child. This act, over which he had no control, is what makes him angry now. "If you take something out, you can't put it back," he says. For all the suffering he has endured, however, he does not blame his parents for what they did. "They were both incredibly ignorant and helpless. They were going to do anything the doctors told them."

Angela Lippert, of Peoria, Ill., blames no one for what happened to her-she just hopes that it can be prevented from happening to anyone else. When she was 12 years old, Angela, who had been born unambiguously female, began to change. Her clitoris grew dramatically, but she was not concerned. "It was just an observation," she says.

Her mother was not as easygoing. After glimpsing her daughter's body as she emerged from a bath, she rushed Angela to several doctors, who diagnosed her (without Angela's knowledge) with partial androgen insensitivity syndrome. (See "The Science of Intersexuality.") She was sent into surgery, and her internal testes and clitoris were both removed. Like Max, Cheryl and Carl, Angela was given almost no explanation for her condition, nor for what was done to her.

"They told me that my ovaries hadn't developed properly and if left would become cancerous," she says. When she awoke and found her clitoris gone as well, she was too embarrassed to ask questions.

Angela suffered from bulimia for years afterward before finally seeking out the truth about her past. Soon after that, she made contact with the ISNA. That's when she allowed herself to become angry. "[The ISNA] helped me to conceive of this issue as a matter of human rights," Angela says.

She now likens her clitorectomy to female genital mutilation performed in Africa, a practice that the United States has publicly denounced. "I had read Alice Walker's Possessing the Secret of Joy, and I remember identifying with the protagonist-the story of her ritual circumcision. Over the years I came back to that novel and I began to believe in my sense of it that our experiences were similar," she says.

The ISNA endorses this comparison. But most physicians resist it, even those who make up the small yet growing group of doctors sympathetic to the ISNA's cause. "This is a complex issue that is often oversimplified," says Dr. Patrick McKenna, a pediatric urologist who until very recently worked at the Connecticut Children's Medical Center in Hartford and who supports a reassessment of protocol in the care of intersexed children.

McKenna says physicians are just trying to do what's best for the patients. Surprisingly, most intersex activists and their sympathizers agree with him.

"Physicians are not bad people, they are just using a system that is flawed," says Alice Dreger, a leading medical historian and ethicist in the intersex field and a firm backer of the ISNA. "The parents are not bad people either-they were just listening to what they were told."

But more and more, what they were told seems tragically misinformed. McKenna and Yale-New Haven's Arici insist that modern techniques of clitoral recession-a procedure that trims the clitoris rather than totally removing it (see accompanying story, "Snipping and Building")-preserves sensation in the clitoris. The ISNA calls that fiction. Several doctors agree. "Most of the procedures routinely done over the last several decades run the risk of terrible outcomes-loss of sensitivity, pain on intercourse, unacceptable appearance, etc.," says Dr. Philip Gruppuso, a Rhode Island Hospital pediatric endocrinologist.

According to Cheryl, it's more than just a risk. The very procedure that doctors claim is saving clitoral sensation, she says, virtually guarantees that sensation will be sacrificed. Modern surgical techniques remove the shaft of the clitoris and preserve the head, or glans. But it is not the glans that most women stimulate when they experience an orgasm. Parents and doctors may be satisfied that the child's clitoris is now small and "normal"-looking, but its later functioning has little relation to its appearance.

Even with all the risks, Arici and most of his colleagues view the clitoral procedure as essential, simply because the psychological effects of not doing it are too grave. Arici makes vague allusions to studies that he claims show a correlation between delayed sex assignment and serious psychological effects, ranging from depression to anxiety to suicide. Yet others believe that current medical literature is incomplete. "No one has any good long-term studies on this. There is little medical evidence to support one way or the other," says Rhode Island Hospital's Boney.

Part of the reason for this lack of information is that pent-up rage prevents many intersexed teenagers and adults from taking part in follow-up studies. Their lack of participation has helped to bolster the myth that children of surgery grow up healthy and happy.

The myth is wrong.

Carl's eyes still tear up when he recalls his tortured childhood. Small and frail, carried like a doll to class on the shoulders of bigger kids and teased for playing with girls and studying ballet, Carl struggled constantly with his desire to dress and act like a girl and his family's pressure to do the opposite. "My father tried to get me to play baseball and basketball and all that. But I was not into it at all. I couldn't even catch a softball. And as much as I tried, I was continually having problems in school," Carl says. His parents argued constantly. When Carl asked what was wrong with him, they always had the same answer: "It all goes back to when you were born."

"The message was conveyed to me in many ways: Take the pill, your questions are irrelevant, do not ask them. It became quite clear over time that my body was a frightening and dangerous thing," says Kristi Bruce, an intersexed adult living in Oakland who uses masculine pronouns when talking about her girlhood. "It also became clear that something was not being discussed and that this little tomboy, who just wanted to play soccer and read, was the source of heartbreaking despair for his doctors and parents."

Intersexuality and the treatment that accompanies it are the sort of dark family secret that many parents hope to carry to the grave. But the more parents try to keep it a secret, the more their kids suffer from the shame.

"Our experience is that intersex genital mutilation and other medical management of intersexed children result in post-traumatic responses similar to other forms of childhood sexual abuse," Emi Koyama says. Koyama, is an intersex activist and board member of Survivor Project, an organization based in Portland, Ore., that addresses the needs of intersexed and transgendered survivors of domestic and sexual violence. She compares the physical violation of children's bodies, the fact that trusted adults perform this violation, and the secrecy and shamefulness to traditional definitions of sexual abuse.

Indeed, many of the later procedures performed on children, particularly those necessary for keeping artificial vaginas open (see "Snipping and Building"), would under any other circumstances be considered a form of sexual child abuse.

Vernon Rosario, a sexologist and child psychiatrist at the University of California at Los Angeles, treats intersexed children and teenagers. Rosario once considered a position at the Yale Child Study Center in New Haven, but decided in favor of UCLA. He sensed that Yale's program, like most of its kind in the Northeast, pays little heed to issues of gender and sexuality.

Rosario has observed in his patients much of what Koyama describes, including symptoms similar to post-traumatic stress disorder. But he insists that there is simply not enough information on intersexuality to make any sweeping generalizations about the psychology of intersexed youths.

"Some kids are probably perfectly well-adapted, but those are not the ones referred to me," he says.

Among those who do come through his office, Rosario notes pervasive anger toward parents and uneasiness involving sexuality and gender identity. He is quick to add, however, that some of these symptoms could also be construed as normal teen angst. But for the intersexed adults who have lived through it, their uneasiness did not seem like teen angst. Most teenage boys worry about whether they will ever have a girlfriend. An intersexed teenage boy might worry about whether he will ever be a girl.

As an adult, Carl became so certain that he should have been raised a girl that he sought a sex change operation three times. He was three times refused because he failed to get psychiatric approval for the surgery.

"It became so frustrating," he says. "I started taking out medical books, and I came very close to doing the operation on myself."

While many intersexed children are genetically male, almost all of them are raised female. (See "The Science of Intersexuality." Carl was an exception to the rule.) This means that many children who have XY chromosomes or who were exposed to high levels of male hormones in utero are being coaxed into female gender roles that nature may not have intended for them. The results have been dubious at best.

Establishing a gender identity is a process that most people take for granted, but that no one completely understands. Scientists and sociologists agree that traditional gender roles are in many ways socially constructed-girls learn to wear dresses and boys learn to wear pants. But no one seems to understand what makes a child raised in a female gender role embrace the male role as her own and vice versa. And no one can even begin to explain why so many intersexed children raised as one sex eventually migrate back to the gender that their genetics or their prenatal hormonal environment would have predicted.

"You have to learn somehow what it means to be a boy or a girl. You don't come born with this idea. But enough people say, 'I always knew I was a boy but I was raised as a girl' that I can't doubt they have these feelings," says Bill Summers, a professor of medical history at Yale who has studied the science behind gender and sexuality.

Summers points to the work of John Money, a physician at Johns Hopkins University who became famous in the 1960s for turning a boy with a botched circumcision into a girl. Money initially declared victory, but his work was later undermined when the girl grew up with a masculine gender identity anyway.

"The whole idea that given hormone treatment and the right social environment, you can determine gender identity. It's not really quite so simple," Summers says.

Gruppuso cites the example of one of his patients, an XY intersexed child raised as a female, who decided at adolescence to transition to a male. "The traditional approach assumed that assigned gender would be accepted by the patient when he or she grew up, as long as the assignment was accepted by the parents in an unambiguous way. We now have reason to suspect that assigned gender may not be accepted by the patient later on," he says.

But if gender roles such as wearing makeup are socially constructed, as almost everyone believes, why would an intersexed child like Carl have such an urge to embrace this female gender role despite discouragement from his family?

Some scientists claim that subtle cues from parents contribute to divergent gender identities in intersexed children. But studies of intersexed siblings who are both genetically female, are both raised as girls in similar environments and both unexpectedly masculinize at puberty show that one sibling might embrace a new masculine identity while the other one rejects it. While social cues were undoubtedly important, the children's identity must have at least partially come from something inside of them. Since both children were genetically female, this identity could not have been entirely genetic.

Some scientists believe that sex hormones acting upon the brain during development play a big role. This seems to be true for establishing both gender identity and future sexual orientation. People interviewed for this article say that babies born with male characteristics but raised female are apparently more likely than other female children to grow up to live as lesbians-Cheryl, for example, lives with a woman; Max was a lesbian before he became a man-while genetic males who look and feel female are almost always attracted to men. But scientists still cannot explain how hormones could make someone feel like a member of a particular sex, as so many intersexed people say they do.

The bottom line: We just don't know where gender identity comes from. But it is unlikely that either biology or society operates independently from the other. Given this mix, the danger inherent in operating on a non-consenting intersexed infant increases manifold. If surgeons turn a genetically male child with testes and an "inadequate" penis into a girl, they not only destroy his future fertility and sexuality, but may compromise his chosen gender identity as well.

"How does [intersexuality] affect the brain? I don't know," Boney admits. "But we shouldn't change the genitals because we just don't know if the child will want them later."

Cheryl, Max, Angela and Kristi did want their genitals later. And while Carl is too shy and uncertain to reveal in an interview whether he lost any physical parts, he says that the changes his treatment did to his body have made it very difficult for him to ever be the woman he wants to be. "It would be very, very hard for me to change now," he says. "I would have to get a new job. I would have to move."

All five of these intersexed people can see how life might have been better for them had their parents and doctors made the choice not to choose at all. That is what makes it so hard for them to accept the consequences now.

"I would have preferred to stay in between or to be a girl until I was old enough to determine what I wanted in life. I would have avoided a lot of problems that way," Carl says.

Although intersexuality will always be painful, Cheryl hopes to make it less devastating. In short, Cheryl wants to shift from Carl's parents' mantra of "families first" to a new slogan of "individuals first." She has no mercy for anyone who is not willing to abide by that new rule.

"Parents often want doctors to make it go away with surgery. But this option shouldn't be offered," she declares. "Parents who can't love their child without plastic surgery should be encouraged to give the child to someone else."

Cheryl believes that soon, genital surgery on infants will be considered despicable and cruel rather than routine. If an intersexed person decides later to have genital surgery, she can make an informed decision herself, Cheryl says. Meanwhile, doctors can assign a temporary gender without surgery, based on medical tests and physical appearance, with the understanding that the child may wish to transition to the opposite gender later in life. (Interestingly, the ISNA does not support any attempt to break down the binary system of gender and allow for a "third sex." It calls such a designation impractical and arbitrary.)

But not everyone-even those who work with intersexed people-believes that surgery is necessarily inherently evil. "The ISNA is particularly unhappy about the surgeries. But this is a skewed population. That's why those people join the ISNA, because they are upset," says Rosario, the UCLA sexologist and child psychiatrist. While some ISNA members hope that intersexed children will be allowed to make their own decisions about genital surgery once they reach adolescence, Rosario is unsure that intersexed teenagers can make decisions any better than their parents can.

"Teenagers are freaking out about pimples-how can they even begin to think about correcting their genitalia?" he says. Still, the ISNA's propositions are gradually gathering support. Last year Dreger, Boney, Gruppuso, McKenna and others joined with Cheryl in forming NATFI: the North American Task Force on Intersexuality. This organization hopes to put some of the ISNA's ideas into practice through education and medical reform.

The process is slow. Many physicians have never even considered that what they are doing could be wrong. And many parents feel desperate to "fix" their children. Gruppuso no longer recommends surgery for intersex births, but he is still in a minority. "[Parents] will always be able to find a surgeon who will be willing to operate," he says.

In light of these obstacles, Yale historical bioethicist Susan Lederer advocates a more conservative approach to reform. She would emphasize parental education with the support of intersex patient advocacy groups, but would stop short of banning parental consent to surgery. "Parents should not be making decisions in a vacuum," she says.

Rosario would encourage children and their parents to make decisions together sometime before adolescence. But even that is a hard demand to meet. Not every family is secure enough in its own relationships to make such a difficult decision together.

Take Carl's family. When he was an adolescent, his parents were still making decisions for him-and he didn't know how to object. "They said, 'It's medicine, take my word for it, it's good for you,'" he says of the mystery pills that he took for years. He shrugs and giggles again, a shrill giggle of pure helplessness. "What could I do? I took it."

The ISNA dreams of the day that the pain of being intersexed will subside. But that day could be very far off. Even if infant genital surgery were ended, the perceptions not only of doctors, but of parents, other children and the world would have to change before most intersexed children could feel comfortable looking the way they do and being who they are. It's nice to believe in the dream that children whom nature refused to fit into our binary categories of male and female can be welcomed in our binary world. The dream may never come true.

Carl does not even dare to dream. His world is far away from the academic and political debate. It is a world of tough guys and feminine women, a world where he believes that being "normal" is not just desirable; it is a necessity.

"Sometimes the world is just not an understanding place," Carl says, explaining his intense fear of speaking openly about his condition. Still, his eyes glow with hope when he learns of the ISNA.

"You mean this isn't uncommon? These people can help me?" he asks. His face breaks into a smile and he does not giggle.

"Maybe it's not too late to be female," he says.

Snipping and Building

Doctors have a list of standards according to which they determine the "normality" of a newborn's genitalia. To pass inspection as a normal boy, for example, a baby must have a phallus longer than 2 centimeters (about 1 inch), with a urethra opening at the tip (rather than on the side or base of the penis) that releases urine, and a scrotum that contains testes. If the penis is significantly smaller than 2 centimeters-at which point it is termed a "micropenis"-the baby may be reassigned a female, even if he has testes.

This is especially the case if the urethra does not open at the tip of the phallus, a condition known as hypospadias.

"If a baby has hypospadias, the urinary function will not be the same as other males," says Dr. Aydin Arici, a Yale-New Haven Hospital obstretrician and gynecologist who specializes in reproductive endocrinology, explaining why male babies with such a condition might be reassigned. "For example, that individual will not be able to urinate standing up." If the penis is much smaller than 2 centimeters, doctors claim that later sexual performance will be compromised.

A clitoris longer than 1 centimeter, on the other hand, is considered unacceptably enlarged, and is shaved down purely for purposes of looking normal, even though many intersexed individuals find that the large size enhances sexual performance and sensation.

"There is a huge element of sexism here: Sexual function is important to be a male; reproductive function is important to be a female," says Dr. Charlotte Boney, a pediatric endocrinologist at Rhode Island Hospital in Providence.

Appearance is not the only factor used in sex assignment-many laboratory tests are also done to determine the child's genetics and potential for fertility. But once an assignment is made, the parents are usually informed that the child was "meant to be" that sex and that surgery must be performed to ensure that nature's supposed wish is fulfilled.

In the vast majority of cases of significant ambiguity, however, a female assignment is made-mostly for the sake of medical expediency. "It's easier to dig a hole than to build a pole," one activist quotes some doctors as saying.

When doctors make a female sex assignment, they remove testes, if present, and cut the phallus down to a "normal-sized" clitoris by a technique called clitoral recession, which attempts to preserve sensation by saving certain nerves and blood vessels. Pure clitorectomies, though common 30 years ago, are rarely performed today. It is uncertain whether the change really preserves later sexual function; activists with the Intersex Society of North American claim that it does not.

A vaginoplasty may be performed later in the child's life. Tissue from the child's colon is transplanted and fashioned into an artificial vagina that is capable of acting as a receptacle for a penis. The vagina must be dilated either through regular intercourse or with an artificial dilator up to several times a day, sometimes for years, to ensure that it remains open.

Doctors usually don't perform vaginoplasties until the child reaches adolescence, but they are sometimes performed at young ages, requiring parents to perform the dilations on their children-an act that would normally be considered sexual abuse.

If doctors make a male assignment, they surgically repair hypospadias conditions and may remove the testes if they are undescended (i.e., inside the body instead of in the scrotum), sentencing the child to a lifetime of hormone treatments. They may repair the scrotum to make it look more normal as well.

The Science of Intersexuality

The terms "intersexuality" or "hermaphroditism" refer to a wide variety of different medical conditions, all of which can lead to anomalies in external genitalia. When an intersexed child is born, doctors' first priority is to discover the underlying medical condition. While intersexed genitalia themselves are rarely dangerous, some of the disorders that cause them can be fatal. Intersexed activists agree with physicians that these conditions must be immediately treated, even if surgery is involved.

An important principle in understanding intersexuality is that male and female genitalia form from the same primary structures during the development of the fetus. The hormones in our bodies, released by our gonads (ovaries or testes), cause those structures to develop differently. This holds for both our internal genitalia (the uterus, Fallopian tubes and cervix in the female and the semen-producing and semen-carrying structures in the male) and our external genitalia. The clitoris and the phallus develop from the same initial structure, as do the labia and scrotum.

The gonads also start out the same, but in males are differentiated into testes by a signal from the Y chromosome. A female developmental pattern, including the development of ovaries and then internal and external genitalia, is a developmental default: Femaleness occurs because of a lack of maleness.

When hormone levels or signals are altered, mixed development can occur, resulting in an intersexed condition. These are among the most common:

* Female pseudohermaphroditism: A genetically female (XX) child is exposed to excess androgens in utero. This results is an otherwise normal, fertile female whose clitoris is large enough that it could be interpreted as a phallus, and whose labia may resemble an empty scrotum. Congenital adrenal hyperplasia, or CAH, is the most common F.P. condition and also the most dangerous. It involves a salt imbalance that can be fatal. Medication can control the CAH while leaving the genitals intact.

* Male pseudohermaphroditism: A genetically male (XY) child is deprived of androgens in utero. This results in a child who may appear entirely female or may look male but have a small penis and some genital ambiguity. Adult M.P.s are sterile. Based on what Carl (see main story) knows about his symptoms and treatment, it seems likely that he has this condition, although he also could have CAH. Androgen Insensitivity Syndrome, or AIS-also called Testicular Feminization Syndrome-is an acute form in which the infant appears unambiguously female, with the potential for masculinization at puberty. Angela (see main story) has this condition. Women with AIS have internal testes and no uterus and are infertile, but can otherwise appear and feel like normal females for their entire lives. Internal testes impose a high risk of cancer and are usually removed, but the enlarged clitoris that Angela developed poses no health risk. Five-alpha reductase deficiency is another M.P. condition with a similar physical condition but a higher rate of masculinizing at puberty.

* True hermaphroditism: This child usually has a mixture of XY and XX or XO cells (XO means a cell has only one sex chromosome instead of the usual two). Cheryl and Max (see main story) have this condition. These individuals' gonads often (but not always) have both ovarian and testicular tissue, and external genitalia are mixed to different degrees depending on the case. -K.A.M.

Raising an Intersexed Child

"It was emotionally as if I had twins."

When doctors told Debbie Hartman that her son was actually a daughter, she was devastated. After giving birth two months earlier, she had already bonded with a son, whom she named Kyle. But when two sets of experts agreed that her child would be "better off raised as a girl," she felt she had to agree. Doctors convinced her to consent to genital surgery, and, terrified, Debbie signed the papers. At seven weeks she sent Kyle into the operating room for his transition into Kelli.

"They both went into surgery and only one came out. It was as if Kyle had died, but thank God I had Kelli," she says. Seven years later, Debbie is angry. She has joined forces with the Intersex Society of North America to add a fresh perspective to their fight: the parent's view. "I don't know if I'm comfortable that the doctors made the right decision," she says.

While most parents of intersexed children hide from their children's condition, Debbie is eager to talk about it. "I want to be honest with Kelli. If enough people do that, maybe it won't be a big secret anymore."

When Kelli was born, Debbie says, doctors told her that no one else was experiencing what she was experiencing. She wants to make sure that parents no longer feel that way when they give birth to an intersexed child. With community support, Debbie also hopes that parents won't be pressured into surgery the way she was.

Kelli is not an unhappy child, but the traumas associated with her surgical interventions have had a lasting effect, despite her mother's best efforts. Debbie notes that Kelli often expresses a wish that she were a boy. "I know that there's a chance that Kelli would say, 'Why did you let them cut it off,'" she says. "I think there's a big chance she might end up identifying as male." Kelli has also suffered from the treatment associated with the vaginoplasty that was performed, at doctors' urgings, at the age of only 2 1/2. Debbie had to dilate her daughter with a long tube three times a day, causing trauma both to herself and to Kelli. "She was not verbal yet, but she hated it. My mom would have to lie across her torso while I was doing it," Debbie says. Doctors had told her that doing the vaginoplasty early would actually save Kelli from remembering any of the trauma associated with it. But just a few weeks ago, Kelli asked Debbie the question she had been dreading.

"She asked me, 'Why did you stick that thing down there?'" Debbie says. "It was the first time that I could see her bothered emotionally by what had happened."

Katherine A. Mason writes for the New Haven Advocate, where this article first appeared.

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