News » Up Front

Between the lines

Coming to terms with children born "intersexed"

by

comment

Cheryl Chase hid in her brain until she was in her mid-30s. An attractive woman with short cropped hair and strong features, Chase was not always that comfortable with herself. Nor was she always what she appears to be. Until she was 18 months old, Chase was a boy. She had a different name, clothes and toys that symbolized boyhood, and a birth certificate that had an “M” inked in the gender box. Then, before she reached the age of two, she was “reassigned” female. She was given a new name, new clothes and toys, and with a new birth certificate in the files, the family moved to a different town where no one knew them. She also underwent a clitorectomy, the surgical removal of her entire phallus, which they reinterpreted as a large clitoris instead of an undersized penis, a procedure that all but destroyed her potential for sexual pleasure later in life. Seven years later as a grammar school kid, she had her testes trimmed and from then on endured yearly trips to the doctor to be poked, prodded, and photographed. No one told her why she was different, though she knew she was. Her parents fought and whispered. Her questions were left unanswered. She felt like a stranger in her own skin, her body a prison of shame and secrecy instead of a temple. It was not until she was in her early 30s that Chase learned the whole truth: She had been born intersexed, what was once called a hermaphrodite.

“When an intersex baby is born, the default is usually to perform surgery. Doctors want to ‘fix’ what is not right, then slap a diaper on the baby, close the file, and send it off into its life,” says Chase, who spoke in Missoula last week. “It is difficult for parents and doctors to think of an infant as a person who will grow up into a sexual being, an adult with drives and the ability to make lifestyle choices.”

Despite the myth that intersex babies are rare—anomalies that are as freakish and monster-like as the mythical being, Hermaphroditus, from whom their name was derived—as many as one in 2,000 infants are born intersexed.

An intersex baby is born with ambiguous genitalia, or more precisely, with an anatomy that someone decides is neither standard male nor female. Though there are several dozen variations on the diagnosis, an intersex baby is not born with two sets of genitals, but rather a phallus that can be interpreted as a “mini penis” or an “enlarged clitoris,” as well as gonads that can present as either testicles or ovaries. Because nature could not seem to make up its mind in utero, many doctors believe that the best course of action is surgery. That way, the child grows up looking more “normal” (or so it’s long been thought), resembling friends and being happier and more well adjusted. But to date, there have been virtually no follow-up studies on intersex individuals who were surgically altered during childhood.

“Intersex is definitely a queer issue,” says Chase. “I mean, how do you know someone’s sex? You might ask them, or you could make a guess based on physical appearance, bone structure, clothing choices, mannerisms, behaviors. You can’t see sexual desire. You can’t divorce gender identity from sexuality. They are inextricably linked.”

Defining gender identity can be a tricky business. Every individual has a chromosomal sex, a hormonal sex, and a “mental” sex or gender, though these don’t always line up for everyone. Who is to say that an intersex baby who is assigned male and surgically altered to match that assignment won’t grow up to feel like a woman trapped in a man’s body? According to Chase, the reason doctors—and parents—often want to surgically “fix” their intersex infant is because they worry the child might grow up to be gay or lesbian instead of heterosexual. Though the medical profession and society at large have come a long way with dealing with issues like death and dying, adoption, and cancer, usually people don’t want to talk or even think about intersexuality.

Doctors mean well, says Chase. They don’t opt for surgery to be cruel or mutilate these babies. Rather, they are just thinking “inside the box.” A lot of times, doctors don’t believe in changing a practice unless they have a better one, and this takes education and open-mindedness. “At a medical meeting, a doctor showed a slide of an intersex child’s genitals almost as if it were a freak show. The slide included the genital area only, no arms or legs, no face. Implying that surgery is the only choice, the doctor asked rhetorically: ‘Would you send this to kindergarten?’” Chase says. “When I went to kindergarten, I wore clothes.”

To endure the shame and confusion she felt as a child and later as a young adult, Chase tried to concentrate on her brain instead of her body. “I went to MIT and studied math and science. I learned Japanese. Then I moved to Japan and got a job doing intense computer and translation work. I was good at all the hard stuff, the non-emotional stuff that’s considered more masculine,” she says. “But I was miserable. Suicidal for a long time. I kept thinking that I’d feel better, but at 35, I realized that the future was here.”

In Tokyo, Chase volunteered as an English speaker for a crisis hotline. “To volunteer, we had to go through low-level training for therapists. I thought they would teach solutions to offer over the phone, but I ended up learning how to talk to people, how to deal with myself and others on a more emotional level, something I had never done before.”

At 36, Chase returned to America. Finally able to recover her medical records after being lied to and turned away on many occasions, she confronted her mother. “I was a mess. Angry. I found it harder and harder to believe that the people who were supposed to take care of me would have done this,” she says. “I was worried my mother wouldn’t tell me anything, but I needed her to fill me in on the emotional stuff. She said she didn’t have any shame, and yet she still couldn’t admit anything. The whole thing had been traumatic for her too. It became too painful for her to see me after that.” Chase’s mother died 10 years later. They never got the chance to share truths, losses, compassion.

Though the decisions that need to be made for an intersex child are never easy or simple, Chase believes vehemently that a person should be able to make his or her own choices. “Surgery does not make everything perfect. It might make you look more female or male, but it certainly does not make you look or be ‘normal,’” she says. “A person should be able to make a choice when they are a teenager, when they have some sense of their sexuality and gender identity. And with all the information on the table, so secrets, no lies, they should have a realistic view of what doctors can and cannot do. Honest and complete disclosure is good medicine.”

For Angela, an intersex woman, the choice never belonged to her. She did not present as intersexed until she was 12, around the time she discovered masturbation and enjoyed the pleasure her enlarged clitoris afforded her. When her mother saw her emerge from the shower with what looked like a small penis, she rushed her to the hospital. She was told she had ovarian cancer and went immediately into surgery. She awoke with no ovaries and no clitoris. A boy has a penis, a girl a vagina. A clitoris, she was told, was considered unnecessary. Angela was too ashamed to ask what had happened. She can no longer enjoy her body as she once did.

Another intersex child who was assigned female was given a vaginoplasty, a vagina often formed from a stretch of colon. In order to have it remain open it has to be manually stretched with what amounts to various sized vibrators. The child’s grandmother had to hold the baby down as it screamed while the mother did the “therapy.”

Vaginoplasties often result in infection. They can separate, leak mucous most of the time, and be very painful. Though this procedure is not used for transsexual operations, it is still used for intersex infants.

Though increasing public awareness and working toward policy change can be slow, Chase already sees the hopeful beginnings of a sea change. At a recent meeting with the National Institutes of Health, Chase says she met doctors whose viewpoints ran the gamut. “One doctor admitted to me that it had never occurred to him that quality of life was an issue for intersex individuals. Just that he made that mental leap was hopeful,” she says. Another doctor, a surgeon, recently returned to medical school to become a pediatric psychologist specializing in the children he used to operate on. “I think he, as well as some others in the medical field, are realizing that you can repair a gender assignment, but you can’t put back what you’ve surgically taken away.”

The work “to create a world free of shame, secrecy, and unwanted surgery for intersex people” can be slow going. One surgeon Chase met recently said he has never talked to a “formerly intersexed” person, nor done any follow-up studies on adults. “He said he doesn’t want to talk to any of them because he might then be swayed by emotion.”

According to Chase, counseling is one of the major links missing in helping families and individuals deal with intersexuality. “We need to normalize this by talking about it, not by cutting things off or creating new parts,” she says. “Parents of intersex babies feel guilty, ashamed, often traumatized. They need to have tools to deal with their children and the questions and situations that are going to come up. And the individuals themselves need to be able to express themselves in ways that help them deal with being different. They need peers. They need to meet other people who have gone through a similar journey.”

To date, there are few therapists equipped for the job. “They are scared that the issues will be too medical, too scientific. They also think the work would be too gender-oriented for their expertise,” she says. “They want to know if the person is male or female then go from there. And ironically, many therapists seem afraid of dealing with trauma. People—doctors, psychiatrists, families—still think that by keeping everything secret that they will be helping these children, saving them from themselves.”

In 1993, Chase founded the Intersex Society of North America (ISNA). Already, ISNA has made significant steps in education and advocacy for intersex issues, putting forward a patient-centered model that is being adopted in more medical facilities. Chase and her colleagues are in the process of creating a training video and accompanying handbook for doctors, which they hope to ultimately sell to hospitals, psychiatrists, libraries, and schools. Among others, it features Chase, a pediatric-endocrinologist nurse, a pediatric psychologist, a biomedical ethicist, and the mother of an intersex child who was surgically assigned female as an infant and who now, at 9, knows he is a boy.

“If intersex people never get to talk about the issues surrounding their differences at birth, they never get to mourn what they weren’t born with, or without,” says Chase. “They remain stuck.” And like Hermaphroditus, they remain trapped in the myth that they are not right until that myth is shattered simply by the act of speaking and sharing.

For more information, visit the Intersex Society of North America Web site at www.isna.org.

Add a comment