What is Intersexuality?

By Cheryl Chase, Executive Director Intersex Society of North America (ISNA) as printed in PFLAG’s Tips & Tactics 05/01

Implicit in the question, "What is intersexuality?," is a much more difficult question: "What do people believe to be the necessary or essential sex organs of the female and of the male, such that the combination of those essential organs in a single body would raise a question about the sex of the person?" In fact, although there are indeed generalizable differences between most so-identified women and men, any strict claim about the essential natures of femalehood and malehood will necessarily depend as much on social politics as science.

The fact is that some people are born with something other than the set of organs usually considered to be the "standard female" or the "standard male" type. That is, some people are born with what doctors call "ambiguous" genitalia: they may have a large clitoris, or a small penis, or an organ that isn't clearly either a penis or a clitoris. Some women have XY chromosomes, and some men have XX chromosomes, and there are people with other combinations, including XXY, XO, XO/XY. There are women with internal testes, and men with internal ovaries. This isn't all that surprising when you consider that female and male sexual anatomy share common developmental pathways.

In the 1950s, doctors developed a way of thinking about, and treating, intersexuality. They considered this kind of sexual difference to be intolerably freakish. In order to save the intersexed person from their fate, all possible means must be used in order to conceal the intersexuality. The tools that doctors settled upon were misrepresentation, secrecy, and medically unnecessary surgery. They believed that if they used surgery and hormones to make a child look more like most boys or most girls, and told the parents that science proved the child was "really" a boy or a girl, the child's gender identity and sexual orientation would develop accordingly.

Today, when a child is born with genitals that look unusual, doctors make a decision about what sex to make the child into. If the child has ovaries and a uterus, doctors consider her a girl, even if she has male genitals. Otherwise, they measure what's between the child's legs. If it's shorter than 3/8", the child is considered a girl. If it's longer than one inch (stretched), the child is considered a boy. Anything in between is considered unacceptable, and doctors will remove it and label the child female. By these standards, doctors transform 90% of all children with ambiguous genitals into girls "because it's easier." If the child has no vagina, they will surgically move a piece of colon into the crotch. In order to prevent the surgically constructed vagina from healing shut, they will later perform (or have the parents perform) "vaginal dilatation." Essentially, this means to use a graded series of tubes to simulate intercourse.

At least 2,000 children born each year in the U.S. are treated this way. That's five children each day. Many of these children are subjected to clitorectomy. Every medium or larger sized city in the U.S. has a hospital with a team that specializes in managing intersex children. Very few of these teams include a psychiatrist, psychologist, or social worker. They do not introduce families or intersex adults to each other, because they believe that intersex is shameful, and families are better off not speaking about it with anyone

Though doctors created this system of handling intersex out of good intentions, now that intersex people have come forward to speak about their experiences, we know that medical management has inadvertently created the very feelings of freakishness that it sought to prevent. Genital surgeries damage sexual sensation, interfering with the intersex person's ability to form intimate relationships as an adult. Frequent genital inspections by teams of doctors and medical students, and especially vaginal dilatations, are experienced as child sexual abuse, with similar emotional consequences.

Adults who were treated this way as children have now joined with progressive-minded parents, ethicists, mental health professionals, and doctors to put an end to medical management based on concealment. Instead, the new patient-centered model calls for psychological support for the parents of intersex children. Children born with ambiguous sex should be labeled and raised as boys or girls, based upon all that we know about how other people born with the same condition developed. But the sex should be recognized as tentative (as, indeed, PFLAGers know, children born without any unusual anatomy sometimes grow up transsexual). The parents should be introduced to other parents and to intersex adults. Doctors should be open and honest, sharing what they know (and what they don't know) about development of gender identity and sexual orientation with the parents, and with the child as he or she is able to absorb the information. The parents' grief at having a child who is unusual, and who will certainly face many social difficulties, should be acknowledged as normal and natural, not circumvented with the promise of a quick surgical fix.Resources

Resources

The Intersex Society of North America (ISNA) is devoted to systemic change to end shame, secrecy, and unwanted genital surgeries for people born with atypical sex anatomy. PO Box 301, Petaluma CA 94953-0301 www.isna.org

Parents Celebrating Our Unique Children is a support group for parents of intersexed children. www.intersexsupport.org

Hermaphrodites and the Medical Invention of Sex by Alice Dreger, Harvard University Press, 1998.