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Intersexuality: Myth Or Fact

While most of us take for granted that there are two, and only two, biological sexes, anatomical sex actually exists on a continuum. In fact, there are a wide range of intersex conditions, in which individuals are born with sex chromosomes, hormonal patterns, genitals, or reproductive organs that don't fit into tidy categories of male or female.

Intersex conditions have many causes-including genetic abnormalities or prenatal exposure to hormones-and manifest in a variety of ways. In some cases, intersexed individuals are clearly male or female in appearance, and their condition is not identified until puberty or adulthood. Some men with Klinefelter's syndrome, a genetic variation in which men are born with an extra X chromosome in addition to the standard XY, may not become aware of the syndrome until they discover their infertility in adulthood. Individuals with androgen insensitivity syndrome (AIS) are genetically male (they have XY chromosomes and testes), but their androgen receptors are not responsive to male hormones, and they develop female bodies. Sometimes AIS isn't identified until a young woman reaches the age of puberty without menstruating. Women with MRKH syndrome are genetically female (they have XX chromosomes), but are born without a vagina, uterus, and fallopian tubes, a fact they may not discover until becoming sexually active.

Other intersexed individuals are identified at birth. An estimated one in two thousand babies is born with ambiguous genitals-estimates are imprecise in part because most of these infants are surgically altered at birth to be "assigned" one sex (usually female). An even higher number of babies are born with unambiguous genitals that doctors nonetheless consider medically "unacceptable," for example girls with large clitorises or boys with hypospadias, a condition in which the urethral opening is not located at the tip of the penis. The sad truth is that an infant girl born with a clitoris deemed "too long" (longer than three-eighths of an inch) will probably be subjected to clitoral reduction surgery-regardless of the resulting damage to her genital nerve endings. Boys born with penises that are deemed "too short" (shorter than one inch) may be subjected to surgical and hormonal sex reassignment. These horrific procedures take place in modern hospitals every day, with genital surgery performed on an estimated two thousand American infants a year, often resulting in irreparable harm to sexual responsiveness and/or fertility.

The treatment intersexed people have received at the hands of the medical establishment reflects our profound cultural unease with ambiguity of any kind, particularly gender ambiguity. For decades, doctors operated under the assumption that inter- sexed individuals couldn't possibly grow up to be healthy adults unless they received immediate sex assignment; many withheld accurate medical information from intersexed children and their parents with the justification that the truth would be too psychologically traumatic. Since the fifties, the prevailing treatment model has been to "normalize" intersexed people with mutilating surgery and then to deceive them about their own medical histories.

Recent years have seen the rise of activism by and for intersexuals. The Intersex Society of North America (ISNA) was founded in 1993 as a peer support, education, and advocacy organization dedicated to ending "shame, secrecy, and unwanted genital surgeries for people born with atypical sex anatomies." ISNA's goal is to reform the treatment of intersexed children, specifically to establish a model in which doctors defer all nonessential surg- eries until the individual is old enough to give informed consent. A growing number of pediatric endocrinologists and other medical professionals are embracing reform, but until ISNA's model is universally accepted, it will be up to the parents of intersexed children to defend their children's rights to self-determination. We encourage all readers, especially prospective parents, to visit ISNA's website at www.isna.org for up,to-date information and resources.


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