Brad Miller

When Cynthia was born, doctors took their best guess as to whether she was a girl or a boy, and a surgeon altered her ambiguous genitalia to match. But her experience and the experience of other adults like her have led doctors and activists to radically reconsider the treatment of intersex children.

By Dennis Rodkin
February 2, 2007

CYNTHIA HAS BREASTS, a vagina, and the Y chromosome of a man. She was born with the chromosome; the breasts are largely the result of hormone therapy and the vagina is partially a surgical creation. But Cynthia, 41, is not a transsexual, at least not by choice. Her parents, counseled by physicians at Children’s Memorial Hospital, made the decision for her when she was seven weeks old. “That made me a tranny infant, I suppose,” Cynthia says. “The difference between me and a transsexual is that sex-assignment surgery was done to me without anyone asking me if I wanted it.”

Cynthia was born in 1965 at Evanston Hospital with ambiguous genitalia. Something that looked too small to be a penis and too large to be a clitoris, about a centimeter and a half long, protruded from a cleft that could be seen as partially fused vaginal lips. Testicles were hidden inside the body. Doctors told the newborn’s parents—the father a physician, the mother a nurse—to consider the child a boy, and accordingly they sent out announcements welcoming their third son, Stephen.

But over the next few weeks they developed doubts. For one thing, the baby urinated through a hole that was not on the tip of what Cynthia now calls “my little phallo-clitoris.” Her father consulted a pediatric endocrinologist at Children’s Memorial. “‘Oh, wow, this child is not someone who should be raised as a boy,’” the endocrinologist told him. A plastic surgeon at the hospital fashioned what the child was born with into something more closely resembling a vulva and removed the testicles. The hospital arranged for a substitute birth certificate to be issued, her father says, and Cynthia came home to join her two brothers. Her parents didn’t send out a new round of birth announcements.

“We had sort of a head-in-the-sand approach,” recalls Cynthia’s father, who asked that his name not be used in this story. “We had some friends and relatives who knew what had happened, but we didn’t chat about it.” When Cynthia was three, he says, they acted on “the advice we had gotten from the doctors early on, to move away from Chicago so the baby girl wouldn’t grow up in a place where everybody knew about the change.” They went to southern California, where Cynthia, her father, and her two older brothers still live; her mother died there last year.

Four decades after being assigned to the female gender, Cynthia has entered a many-layered coming-out process. It entails gradually letting people at work understand that “there’s a reason I never have a time of the month when you see me take my purse into the ladies’ room with me.” And she’s working with a California endocrinologist on reformulating the mix of artificial hormones she’s been taking since adolescence. Testosterone contributes to the sex drive of women as well as men, and she wants to see, among other things, if ramping up the male hormones will boost not only her sexuality but her general feeling of vitality and well-being. “Having one’s gonads removed early in life is just not a good thing,” says Cynthia.

After a long history of living in shame and secrecy, people like Cynthia—commonly referred to as intersex—have done what other marginalized groups did before them: they’ve lifted the veil of secrecy and set out to take charge of society’s image of them. Many want to abolish the sort of infant surgery that Cynthia believes led to the profound confusions of her life. Leave the children the way nature made them, they argue, so that each can decide, after experiencing the onset of sexual feelings, who to be. Medical standards are gradually changing to agree with them.

Cynthia with her mom

HOW MANY PEOPLE like Cynthia are there? According to UCLA geneticist Eric Vilain, one in 4,000 children is born with genitalia that cannot be clearly identified as male or female. That means about 1,000 intersex babies are born in the U.S. each year, about 45 in Illinois, 11 in Chicago.

The movement to raise awareness of intersex issues dates back to at least 1993, when the Intersex Society of North America (isna.org) was founded. Ten years later, Jeffrey Eugenides won a Pulitzer Prize for his novel Middlesex, whose protagonist was intersex. Last September the New York Times Magazine profiled a leading intersex activist. Here in Chicago, a 2005 conference of medical professionals called for use of a new term, disorders of sexual development, or DSD, to replace the more mysterious-sounding intersex, though ISNA didn’t change its name.

But even if this is an auspicious time for Cynthia to come out and explore her own history, doing so isn’t easy. “I’m just now waking up and saying, ‘Whoa, these few millimeters of my flesh, this little phallo-clitoris part of my natural-born anatomy, had so much power to create real heavy human drama,’” she says.

Her father seemed to bear a burden of anxious guilt for years, she says. Her mother “was an emotional basket case about anything about me.” And the price they paid to protect her was to uproot themselves and leave both sides of the family behind in Chicago. Cynthia herself felt bottomless angst for decades. When at the age of 40, still a virgin, she signed up at a dating Web site, she wasn’t sure how to classify herself.

“Cynthia has an understandable feeling of incompleteness,” says Alice Dreger, a Northwestern University bioethicist who advocates for the medical rights of people she describes as having “socially challenging” bodies. “We’re all looking to feel complete and normal, but you can see that for someone in her situation, those questions are multiplied.”

Late last summer, Cynthia met Dreger at an intersex meeting in Bloomington, Indiana. Soon Dreger was doing for Cynthia what she’s done for several other people, largely at her own expense—ferreting out decades-old medical records and translating them into plain English.

Dreger helps people acknowledge the strange facts of their lives. “Everyone feels their body is somehow wrong,” she says, “but there’s a profundity to that aloneness when the truth about you doesn’t match the truth of what seems like everyone else in the world. I tell people like Cynthia, ‘Yes, this really did happen to you, and you’re not the only one,’ and they feel believed and connected.”

UCLA’s Eric Vilain agrees: “It’s extremely important for these patients, even if they are in their 50s or 60s and nothing will change for them in a tangible or objective way, to learn about what they have been through, what was done to them.” Dreger and others say that in the past parents often told intersex children who were raised as girls that their ovaries had been twisted or cancerous, and that as a result they couldn’t menstruate or have kids. “There’s this feeling of having been lied to,” Vilain says, “often by their parents and their doctors, people they put tremendous trust in, and it’s often unbearable.”

On top of that, “the surgery stinks,” says Joel Frader, head of general academic pediatrics at Children’s Memorial and a professor of pediatrics and medical humanities at Northwestern. “If the child is born with a clitoris that looks more like a penis, most of the things that are done to make the child look more like a girl have a pretty negative effect on sexual pleasure later on and have other health effects.” These effects, he says, include an artificial vaginal opening that must be surgically reopened from time to time for the rest of the child’s life. Creating a penis is worse: “The surgical options are terrible, actually,” Frader says. “They might get better and someday be fabulous, but now what you get does not look enough like a penis.”

The most common reason for the failure of the genitalia of a fetus with XY chromosomes to develop fully is known as androgen insensitivity syndrome, an inability of the fetus to respond to the male hormones that normally generate male structures. An adult with partial AIS (like Cynthia) looks neither completely male nor completely female. An adult with complete AIS is more likely to look completely female, the external genitalia included, but with a vagina that ends “blind,” without connecting to any reproductive parts, and with hidden testicles.

Intersex babies used to be left alone because there was nothing surgeons could do for them, but in the 1960s the standard response became to assign a gender. Much of the new thinking was based on the pioneering (but later discredited) work of Johns Hopkins researcher John Money, who argued that nurture, not nature, was the key to gender identity. With surgery, hormone treatments, and the affirmation of parents and other adults, a child would come to fit into the assigned gender. “The notion was that children are born as blank slates,” Frader says. “Their sexual identity and beliefs and practices can be inculcated in them depending on how they are nurtured and how they are raised, which, as more information has accumulated over 20 to 40 years, turns out to be at best a naive view, if not simply a wrong, mistaken notion.”

“At the time,” says Cynthia’s father, “we were hearing from the head of pediatric endocrinology at Northwestern and the head of pediatric surgery at Children’s Memorial. These were men of some stature, and what they were telling us would be the right thing to do for our child made some sense. Any parent who loves a child would want that kind of advice in the situation we were in.”

As far as she can remember, Cynthia’s parents didn’t say much at all about her sex until she started asking, but they didn’t lie to her. Perhaps as a result, Cynthia—though she admits to bouts of rage and depression—can talk about her condition in a breezy, no-judgment style laced with self-deprecating jokes. (“One of the reasons they assigned me to female and not male,” she tells me, “is that it’s easier to make a hole than to build a pole.”) She speaks affectionately of her father and ascribes his reluctance to speak to her about her condition to his reluctance to speak about most things. She lunches with him once a week and even moved in with him for several years to help care for her mother, who suffered from Alzheimer’s.

“I love my dad and I’m very interested in keeping my relationship with him,” she says. “But there’s a chasm with my dad. He loves me and he wants to have a relationship, but there’s this space between us. It’s his shame, his embarrassment, his pain. It’s ‘Look what we did to you.’”

Cynthia’s father says that when he and his wife brought Cynthia home to their Evanston apartment after her gonads were removed, they told her two brothers, a preschooler and a toddler, “Do you know what we found out at the hospital? We thought this was your little brother, but really it’s a little girl. Aren’t we lucky!” He says, “You’re talking about little tiny boys. They bought into it. ‘Whoa. We’re so lucky. We have a sister instead of a brother.’ And it never came up again.”

Cynthia in kindergarten and in high school

IN CHILDHOOD CYNTHIA’S sexuality mattered little to her, but in adolescence she started to notice that she was different. She was in sixth grade when her brother in junior high saw that she’d covered her school binder with that iconic picture of a toothy, nipply Farrah Fawcett. “He was like, ‘You’re a girl! People will think you’re a weirdo.’ I was like, ‘What do they have against Farrah?’ You realize now that I am an XY individual, so I was just being an average guy. But it looked to him like I was into something homoerotic. And it was just my body telling me what I liked.”

Her sexuality would only get more confusing. “Come the teen years and I start hearing that friends are getting their period,” she says. “Now, I was more clueless than the average girl, so I’m in 10th or 11th grade before I realize all my friends have been having their periods for years already. I was sitting around at a friend’s house and they’re all talking about when theirs are each month. I was like, ‘Oh, problem here. I haven’t ever had mine.’ I confided in my friend’s mom, and she said I was fine, a lot of girls get it late.

“In high school you would have likened me to an awkward boy. I played bobby-socks softball and I roller-skated and was rambunctious and I smoked pot. But boys weren’t interested in me and girls weren’t interested in me. I wasn’t giving off any mojo. I mean, I was like, ‘Where is my mojo?’”

Her parents decided on hormone therapy—the female gender she’d been assigned clearly needed to be prodded along. What her mother told her, Cynthia says, was that “we’re going to get you some pills to help you get your period.” The quest for pills turned into a visit to a Los Angeles hospital for a complete workup by an endocrinologist—a trip her mom promised would conclude in a shopping spree. “I’m supposed to be a girl, I’m supposed to love shopping,” Cynthia says. “But inside I’m thinking, ‘What’s wrong with me that I have to go see these specialists?’”

Cynthia’s parents told her brothers about her when they were in high school. The boys were driving them to the airport—flying made them feel their mortality, and they wanted their sons to know in case she became their responsibility. “So my brothers knew about my situation before I did,” Cynthia says. Her father remembers one of the boys crying at the news and both vowing they’d always be there for her. The three are still close.

But Cynthia says her parents never spoke to her as clearly as they spoke to her brothers. From her doctor’s visits and her father’s medical books, she developed a hazy notion of her situation. But “I pretty much understood this was something we were not going to talk about. I remember coming home from college for Easter break once and confronting my parents—‘Why don’t we ever talk about this?’ And my mom’s crying and my dad’s like, ‘When did you want to be told that we were raising you as a daughter but you have XY chromosomes? All we know is that we don’t know everything.’ There was this general level of angst in the family about me, and I was looking to my parents for something, and their angle on it was basically, ‘What did you want us to say? We took you to doctors we respected.’”

Some earlier “exploratory poking” had told her she had an extra hole down there, which turned out to be because her labia were partially fused. When she was in college she had surgery to open the cavity so she’d have something “sufficient for penetrative intercourse.” She traveled alone to UCLA for the procedure, but afterward she was in so much pain she allowed her parents to drive her home. “I didn’t talk much on the way home,” she says. “I was not going to talk about this if they hadn’t talked to me about it all those years.”

She says she was pretty hostile toward her parents then. The vaginoplasty could have been done several years earlier, “and I would have been able to have sexual encounters at the age when those are blossoming naturally.” But in the years since, she’s mellowed. She wonders, “What would have been the right time and the right way for them to say, ‘Look, we raised you as a girl but maybe you were a boy’?” As for the timing of the vagina surgery, “I think it would be unfair to put too much blame on my parents for not insisting I have that done sooner. They wouldn’t have thought that their good Catholic girl needed a fully sexually functioning vagina until marriage, right?”

After college, Cynthia spent several years living in San Francisco. She hooked up with a lesbian, gay, bisexual, transgender, and intersex community and got somewhat radicalized. Her father remembers those as the tense years when “she bought into the message that we shouldn’t have let those things happen to her.” But when Cynthia moved home to help out with her mother, the combination of that burden and her job “put me off my own issues for a decade. I just didn’t think about it.”

At 5 feet 11, she grew taller than her parents by several inches, but with “very pretty and curvaceous, very nice female features,” says her father. Cynthia points out that although some tall women can wear regular women’s shoes, “I definitely have a man’s feet. Buying shoes is almost impossible.” She has a large frame, like a man’s; her father says “buying jewelry for Cynthia was always difficult, and there’s a masculine appearance to her gait.”

“Most people guess I’m a lesbian, and that’s OK with me,” says Cynthia. “It’s the easy choice for them.” But it hasn’t worked for her. When she moved back into her own home and at last felt ready “to try the dating thing,” she visited Match.com. “But right at the start you have to click whether you’re a man who’s into men, a man who wants women, a woman who wants men, or a woman who wants women. I was like ‘all of the above and none of the above.’ They didn’t have a box for ‘I don’t know what I want but I want something.’” Eventually she figured out how to describe herself as intersex and as someone who identified with women looking for women. Pretty quickly after that, she landed her first date ever.

“I’m thinking, ‘Oh my God, how am I going to tell this woman my life story?’” Cynthia says, “and she turns out to be an even bigger basket case than I am!” Her date was an incest victim who’d had an abortion because of that rape, crashed her car in a possible suicide attempt, and said she’d had lots of sex but no orgasms. “I’m like, ‘Jesus, this is my match?’ So my attitude is that I’m gonna lay it all out there, so I told her my story. The intersex thing didn’t mean much to her, but what she really threw back was that I was a virgin and had not been sexually active with anyone. That freaked her out. So I’m like, ‘Maybe before you pass judgment have you considered I might just knock a hole in your world? Lady, don’t consider inexperience frigidity. The brain is the quintessential sex organ, and my brain hasn’t had any surgery.’”

Cynthia says her subconscious knows for sure that she desires women: “I’ve had some very good orgasms in my life and they mostly have been in my dreams, erotic dreams that might have been wet dreams if I had the plumbing to make them so. But they all have female subjects in them.”

But she hasn’t had a second date. She’s put that off while she works on her hormonal mix. Never in her life has she felt settled in her body, and her hope is that endocrinology will achieve that for her. And if she knows who she desires, she is less clear about how she desires them. “It comes in waves,” she says. “A while back I was feeling totally lit up to be a woman, but that changed. I mean, if you show me some good hot female-on-female action I’ll like that and want that. But then I see the good old hetero male-on-female action, and that’s for me, too. It’s all good.”

Intersex activists would say her confusion is largely the result of the decision made early in her life to equip her as a girl. If the decision had been left to her, they would say, however hard growing up might have been, one day she could have chosen genitalia that matched the sexual identity she’d matured into.

“THERE’S NO MEDICAL danger to the child from having funny-looking genitals,” says Northwestern’s Alice Dreger. “It’s a social danger. Parents’ motivation to change their intersex children’s genitals comes out of their lovingness and supportiveness. They want the child to fit in, which I can understand. But we’re finding that it doesn’t work out well in the long run.”

Joel Frader

Kathy Richland

“You’re talking about life-altering surgery performed on an infant,” Joel Frader says. “It’s a paternalistic decision, and it has involved secrecy by physicians and in some cases parents.” Parents today may be far more comfortable discussing intersex than they were, but to Eric Vilain that doesn’t mean they should be making the decision on surgery. “I argue that the parent is not the patient,” he says. “The child is the patient.”

For the past 15 years Vilain’s been on the UCLA team that meets the parents of intersex infants within 24 hours of the birth. He says the physicians and counselors on the team lay out the options and tell parents that “there is no real evidence that surgery will do better for the child in the long run.” Most parents still choose surgery, he says, “but that is changing, changing quickly in the past five years.”

In Chicago, Frader says, the wind has shifted dramatically. In 2001 he and Children’s endocrinologist Jorge Daaboul wrote an influential paper on the ethical questions surrounding infant sex-assignment surgery. They argued for candor all around—from doctors to parents and from parents to children. The standards that had prevailed since John Money’s day, Frader says, boiled down to “one tells the parents what they ought to do, gives them no choices and options, and says, ‘We need to make this child into somebody who looks clearly like a boy or girl, and here’s how we’ll do it.’ Then you don’t tell the kid anything and you pretend it never happened. That clearly violates any modern notion of informed consent.”

Frader and Daaboul argued in “Management of the Patient With Intersex: A Middle Way” that parents, not doctors, should decide. Physicians should fully describe the risk of later-in-life complaints that surgery entails, tell parents there’s no solid evidence that it improves the intersex person’s life, and then let them choose. According to Dreger, that paper helped alter the standards by which medical people handle intersex cases.

But Frader’s thinking has continued to evolve, and today he says the right to choose belongs to the child. “When we were writing that paper, activists from ISNA were saying that nobody should do anything surgical to those children until they are old enough to make the decision for themselves. I rejected it then,” he says, “but the more I think about it the more I think that is the correct way. It seems to me there are almost no situations where early surgery makes sense.” This is a conclusion he has yet to argue in writing.

So how do you raise a nongendered child? You don’t, says Dreger: “You have to assign the child a gender, because there are boys and there are girls.” Frader adds, “You can assign a gender and raise the child as a boy or a girl without assigning a sex. Sex has to do with biological functions that we can’t say much about in infants and children and that won’t become clear until puberty, or puberty plus time for the kid to make choices.”

Minefields like gym class can be avoided, he thinks. “We worried a lot about gym class when we were writing the paper, but since then I’ve become pretty convinced that in situations like this it’s pretty common for schools to make exceptions and help protect kids so they don’t have to undress in the locker room. Let them have private space, or excuse them from showering or something. It doesn’t seem as insurmountable as it once did.”

It’s asking a lot of parents to allow a child’s sexual identity to go undecided for more than a decade, and it asks even more of the child: that in the tumultuous years when it seems like everything else in life needs to be sorted out, he or she must decide whether to become a man, a woman, or, for lack of a better term, neither. The new thinking is too new to have produced any success stories; like previous theories, it could prove detrimental in ways no one has predicted.

But Cynthia’s life has shown her what’s wrong with the alternative. That’s why at 41 she’s embarked on yet another adventure in endocrinology: “I’m kind of thinking there might be a moment when I go ‘Shazam, look who’s here. This is who I was supposed to be all along.’”

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