Intersex Advocates Work Against Infant Surgery

Children born with ambiguous genitals often undergo surgery early in life to make them look more male or female. But some intersex advocates say doctors should wait until patients are old enough to make the decision for themselves.

ABC profiles Jim Bruce, who had ambiguous genitals at birth. Doctors decided he couldn’t have a “satisfactory life” as a man, so they removed his penis and testes and started him on female hormones. But, he says, “I knew that I wasn’t a girl.” And when he saw his medical records at 19, he realized the truth: “I was sterilized at birth — and no one ever told me.” Now 34, Bruce has transitioned back to male, and works with Advocates for Informed Choice, a group whose motto is, “promoting the civil rights of children born with variations of sex anatomy.”

According to AIC’s website, “elective genital surgery on infants with DSDs [differences of sexual development] or intersex conditions is still the predominant practice in the U.S.” The AIC doesn’t appear to take a concrete position on infant surgery, but other groups do. The Intersex Society of North America says,

Following diagnostic work-up, newborns with intersex should be given a gender assignment as boy or girl, depending on which of those genders the child is more likely to feel as she or he grows up. Note that gender assignment does not involve surgery; it involves assigning a label as boy or girl to a child. (Genital “normalizing” surgery does not create or cement a gender identity; it just takes tissue away that they patient may want later.)

They add,

Surgeries done to make the genitals look “more normal” should not be performed until a child is mature enough to make an informed decision for herself or himself. Before the patient makes a decision, she or he should be introduced to patients who have and have not had the surgery. Once she or he is fully informed, she or he should be provided access to a patient-centered surgeon.

Katrina Karkazis, senior research scholar at Stanford’s Center for Biomedical Ethics, concurs. She tells ABC,

Pay attention to what child a child is telling you — there may be a switch which needs to be evaluated with expertise. Plenty of kids go through phases — I am a girl or I am a boy — and it ends after a year. But one thing that is irreversible is surgery. […] Once you’ve removed the tissues, you can’t put them back.

Bruce doesn’t blame his parents for allowing doctors to sterilize him — he says, “they were only kids, 27 and 29, and they were scared.” But parents might be less scared if they had access to the kind of counseling the ISNA recommends — and if people in general were more aware of intersex conditions. Doctors have long pursued genital surgery in part as a way to help children fit in and feel “normal” — but if we could recognize that there’s a whole range of normal where sex and gender are concerned, then intersex people might have a better shot at making their own decisions about their bodies and their lives.