What does it mean to be intersexed, and how common is it?

Originally Published: December 14, 2001
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(1)
Dear Alice,

Can you explain to me what "intersexed" persons are?

(2)
Dear Alice,

How common is a hermaphrodite (looking for percentages)?

Dear Readers,

The term "intersex," more commonly used than "hermaphrodite," has been receiving more media attention lately. Usually people are born with clearly identifiable genitals that signify gender: "It's a boy!" or "It's a girl!" Intersexed people are born with reproductive organs and genitals that are less clearly identifiable. They may have varying degrees or levels of development. As an analogy, think of biological sex as a spectrum of color, where one color represents "female" and another color represents "male." "Intersexed" would then correspond to any shade of color in between. Keeping this in mind, a wide array of variation can occur. Fetal development is a complicated process involving chromosomes, genes, gonads (ovaries and testes), hormones, and hormone receptors. Variations in all of these elements can occur, causing a child to be born with variations in their genitals or in their internal reproductive organs. External variations are generally noticed at birth, while variations in internal organs might not be recognized until puberty.

According to the Intersex Society of North America, "The most common intersex condition is congenital adrenal hyperplasia. What happens in this case is that a fetus with XX chromosomes has a genetic disorder which affects the function of the adrenal glands. The adrenals produce hormones which cause her to be born with a larger than average clitoris." These individuals with XX chromosomes (typical "female" chromosomes) may have typical "female" anatomy, and have an enlarged clitoris. Other intersexed people may have XX chromosomes (typical "female" chromosomes), feel and act "masculine," have a penis, no testes, two ovaries, a uterus, and fallopian tubes. Others who may feel and act "feminine" have XY chromosomes (typical "male" chromosomes), two testes, and some internal male reproductive organs. These are a few of the types of chromosomal variations that can occur. Some boys, for example, who have Klinefelter's Syndrome (XXY chromosomes) appear to develop "normally" until puberty, when they don't experience "typical" changes. They are also unable to produce sperm, making them sterile.

In our society (and perhaps most), gender and our ideas about gender affect how a person speaks, acts, and is treated. It is estimated that 1 in 2,000 infants have reproductive anatomy that appears "confusing" and makes it difficult to clearly identify whether the child is "male" or "female." In an attempt to neatly fit intersexed individuals into one of these two categories, it is not uncommon for surgery to be performed at birth or at a young age to alter the genitals to make them look "normal." Often, these surgeries are done for cosmetic reasons and may possibly compromise the functioning of the genitals, causing a form of genital mutilation. For instance, doctors may perform "cosmetic" surgery on an individual who has an enlarged clitoris. This surgery generally involves reducing the size of the clitoris to one that is considered "normal." However, this can alter sexual response since clitoral nerves can be damaged by or during surgery.

Many adult intersexed individuals strongly oppose surgery. They have felt mutilated, not accepted, discriminated against, disempowered, and forced into an "either/or" mold that may not fit for them. In retrospect, they would have preferred to have been raised without surgery. They advocate that the individual needs to be able to make decisions concerning surgery, and his or her gender, with appropriate info and support, when s/he is at an age when s/he can give consent.

The Intersex Society of North America (ISNA) provides information, support, and resources. The following sources have more information about intersexuality:

The Discovery Channel: "Is it a boy or a girl?" (originally broadcast on March 26, 2000)
Parents Celebrating Our Unique Children Web site
Support for parents, children, and individuals with intersex conditions
Intersex in the Age of Ethics (Ethics in Clinical Medicine Series), by Alice Domurat Dreger (Editor)
"When Medicine Goes Too Far in the Pursuit of Normality," an essay by Alice Dreger (The New York Times; July 28, 1998)
The Missing Vagina Monologue, by Marguerite Morris

What we can offer intersexed people is compassion and caring, and not to further marginalize them, but to integrate them, through education, advocacy, support, and personal stories.

Alice