What if it's (sort of) a boy and (sort of) a girl? 1/2

The New York Times Magazine
WHAT IF IT'S (SORT OT) A BOY AND (SORT OF) A GIRL?
Written by ELIZABETH WEIL
Sunday, 24 September 2006

When Brian Sullivan — the baby who would before age 2 become Bonnie Sullivan and 36 years later become Cheryl Chase — was born in New Jersey on Aug. 14, 1956, doctors kept his mother, a Catholic housewife, sedated for three days until they could decide what to tell her. Sullivan was born with ambiguous genitals, or as Chase now describes them, with genitals that looked “like a little parkerhouse roll with a cleft in the middle and a little nubbin forward.”

Sullivan lived as a boy for 18 months, until doctors at olumbia-Presbyterian Medical Center in Manhattan performed exploratory surgery, found a uterus and ovotestes (gonads containing both ovarian and testicular tissue) and told the Sullivans they’d made a mistake: Brian, a true hermaphrodite in the medical terminology of the day, was actually a girl. Brian was renamed Bonnie, her “nubbin” (which was either a small penis or a large clitoris) was entirely removed and doctors counseled the family to throw away all pictures of Brian, move to a new town and get on with their lives. The Sullivans did that as best they could. They eventually relocated, had three more children and didn’t speak of the circumstances around their eldest child’s birth for many years. As Chase told me recently, “The doctors promised my parents if they did that” — shielded her from her medical history — “that I’d grow up normal, happy, heterosexual and give them grandchildren.”

Sullivan spent most of her childhood and young-adult life extremely unhappy, feeling different from her peers though unsure how. Around age 10, her parents told her that she had had an operation to remove a very large clitoris. They didn’t tell her what a clitoris was but said that now things were fine. At 19, filled with rage and feeling suicidal, she started trying to access her medical records and finally succeeded when she was 22. As a means of recovery, she threw herself into her work. She graduated from M.I.T. with a degree in math and then went on to study Japanese at Harvard. Soon after, she moved to Japan and helped found a successful tech company, assuming she’d work really hard for now and be happy later. At 35, realizing that being happy later was not going to happen, she flew to Florida with a list of questions to ask her mother, to whom she was never close. According to Chase’s notes from that conversation (both of her parents have since died), her mother maintained that the clitoridectomy had not impacted her daughter’s life. “When you came home,” Cathleen Sullivan told Chase about her return from the hospital after surgery, “there seemed to be no effect at all. Oh, yes, wait a minute. Yes, there was one thing. You stopped speaking. I guess you didn’t speak for about six months. Then one day you started talking again. You had known quite a lot of words at 17 months, but you forgot them all.”

After that conversation, Chase, an extremely ambitious, focused and analytical individual, decided it was time to heal herself, and she gave herself a year. As part of that project, she moved to San Francisco and started calling and writing to doctors, academics and gender activists — anybody who might have something concrete to say about the predicament of being born part male, part female, or who might be able to tell her why it had been necessary to have her clitoris removed and if she’d be able to get any sexual function back. Along the way, in 1993, Sullivan called Anne Fausto-Sterling, a professor of biology and gender studies at Brown, who had published several papers on intersex (the term that has come to replace “hermaphrodite”) and who was about to publish an article in a magazine called The Sciences. Sullivan wrote a letter that was published in the next issue calling for people with intersex conditions to get in touch with her, and she signed it Cheryl Chase, the Intersex Society of North America, though neither a person named Cheryl Chase nor an organization called the Intersex Society of North America yet existed.

Thirteen years later, Chase, as Sullivan began calling herself, is now known throughout the urology and endocrinology establishment as a passionate advocate for the rights of those born with ambiguous genitals, and she has succeeded in stirring a contentious debate among those doctors over how intersex babies should be treated. At the heart of the controversy is the question of whether intersex children should have surgery to make their genitals look more normal. Chase has talked to thousands of doctors and others in the medical profession, making the case that being born intersex should not be treated as shameful and require early surgery. In doing so, she has assembled an impressive intellectual arsenal, drawing on everything from the Nuremberg Code and its prohibition against experimental medical procedures without patient consent to the concept of “monster ethics” — the idea that we perform questionable medical procedures on certain patients, like intersex people and conjoined twins, when we consider those patients to be less than human. Reports on the frequency of intersex births vary widely: Chase claims 1 in 2,000; more conservative estimates from experts put it at 1 in 4,500. Whatever the case, intersex is roughly as common as cystic fibrosis, and while the outcome of the debate Chase has stirred is directly pertinent to a limited number of families, her arguments force all of us to confront some basic issues about sexual identity, birth anomalies and what rights parents have in physically shaping their kids. Will a child grow up to enjoy a better life if he or she is saved from the trials of maturing in a funny-looking body? Or will that child be better off if he or she is loved and accepted, at least at home, exactly as he or she is?

The old protocol for dealing with an intersex birth, the protocol Chase was subjected to as a child, was based on the belief that children should be saved from the anguish of looking weird, or of even knowing they were born looking weird. This would come to be known as the “optimal gender of rearing” protocol and was put forth by John Money, a psychologist who in 1965 founded the Johns Hopkins Gender Identity Clinic, which specializes in transgender surgery. Money’s protocol guided doctors to perform genital surgery on intersex babies and then discourage families from discussing the child’s ambiguity, for fear that the child would grow up questioning his or her sexual identity.

This protocol held for 40 years, until Chase began agitating against it in the mid-1990’s. For a dozen years, she chipped away at its logical underpinnings, and last month Money’s protocol officially fell. The journal Pediatrics published a paper signed by 50 international experts, primarily doctors but including Chase, titled “Consensus Statement on the Management of Intersex Disorders.” The consensus promotes the traditional idea that every child should be assigned a gender as soon as possible after birth, and that this should be done by doctors examining the baby’s genes, hormones, genitalia, internal organs (via ultrasound), electrolytes, gonads and urine. These doctors then make their best guess as to whether that child will want to live his or her adult life as a man or a woman. Where the consensus departs from tradition is that it also instructs doctors to discourage families from rushing into surgery. The paper is a bit vague on this point; it doesn’t directly tell doctors not to operate but does state that no good scientific studies prove infant cosmetic genital surgery improves quality of life.

Chase says she believes that every child should be assigned a gender at birth but that the assignment should not be “surgically reinforced” and that parents and doctors should remain open to the idea that they may have assigned the wrong sex. She contends that the most important thing is for a child to feel loved by her parents, despite her difference. An operation, she says, should not be done to assuage parental embarrassment or anxiety; it should be chosen, if it is chosen at all, by an intersex individual who is old enough to make her own decision and give proper consent.

The consensus is a major victory for Chase. Yet making progress from here may prove extremely difficult. Chase now must take her arguments not just to medical professionals but also to parents of intersex children, almost all of whom will be feeling intensely stressed and almost none of whom will have considered the complexity of raising an intersex child. One doctor, who didn’t want to be named, put her chances of persuading parents not to choose surgery for their intersex children at “honestly, zero.” From the parents’ perspective, the argument for surgery is almost impervious to reason. As one mother of an intersex girl wrote on a message board: “How can anyone possibly think that a child can grow up and feel confident of her sexuality looking down at her genitals that look like a penis? Come on.”

One day last spring, Chase traveled from her home in Sonoma County, Calif., to Chicago to tell her story to a group of genetic counselors and to distribute the Intersex Society’s latest handbooks, one for medical professionals and one for parents. On this morning, Chase, who is 50, has short white hair, fashionable glasses, intelligent eyes and a strong build, was wearing a wide-necked sweater meant to fall off her shoulders, exposing a black bra. She lives as a woman and as a lesbian, and while she imagines she doesn’t look or feel exactly as other women do — for instance, she can’t find any gloves made for women that fit — she has no desire to be a man.

Chase had been invited to speak by Rebecca Burr, a genetic counselor who several years ago found herself dealing with a 26-year-old woman who’d never menstruated, knew she’d had multiple operations as a child but didn’t know that she was intersex. Burr felt ill prepared to handle the case and tracked down the Intersex Society. In Chicago, Chase stood in front of 30 members of the Genetic Task Force of Illinois, telling them about the parkerhouse roll, the trashing of her baby pictures, the hospital stay at age 8, when she was told doctors would be helping her stomachaches but when she really had the testicular part of her gonads removed.

When Chase began her activism, more than a decade ago, few doctors were open to her ideas about the way intersex babies should be treated. “When I first started doing this, it took some extreme kinds of conversation to get people to listen up,” she told me. She also organized a picket of a pediatric convention; she sneaked into medical conferences and buttonholed attendees. In 2000, however, the esteemed Lawson Wilkins Pediatric Endocrine Society finally invited her to speak, and since then Chase’s technique has evolved. She now receives and solicits speaking engagements from groups of all kinds. She addresses nurses’ associations, doctors, medical students, anybody who will listen.

Among the Intersex Society’s primary goals is ending the shame and secrecy surrounding being intersex, and toward that end, upon founding the society in 1996, Chase organized an intersex retreat. She wanted to help people, herself included, become more comfortable speaking openly about their condition. So she invited the 62 intersex people she had made contact with for a weekend at her farm in Sonoma. Eleven came. Chase made a raw and moving documentary of their time together, titled “Hermaphrodites Speak!” Ten people directly address the camera. Nine tell stories of surgery and lives nearly wrecked. One man refers to himself as a monster. Another says she’s “damaged goods.” One person, however, did not have an operation, and she alone looks fit and confident, sitting with great posture and seeming at home in her body. She grew up in a Catholic family, and when she first saw another naked woman up close, at age 12, her initial thought was, What’s wrong with her? She modeled her sexuality on Grace Jones and David Bowie. Her story, though just one account, is consistent with the findings of Sarah Creighton and Catherine Minto, two London gynecologists. The two have reported, albeit with small samples, that genital surgery is likely to have a negative impact on sexual function and quality of life.