This condition is rare and still shrouded in mystery, but it shouldn't be.

By Jessica Migala and Taylyn Washington-Harmon
Updated July 29, 2020
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If you've noticed the I in LGBTQIA+, you may wonder what it means and where it came from. The I stands for intersex, a biological variance that means a person's sex doesn't fit neatly into the boxes of "male" or "female"— based on their chromosomes, genital presentation, reproductive tissue, or some combination of the three. Up to 1.7% of the world population is born intersex, a figure roughly equivalent to the number of redheads. Find out what it means to be intersex and why more intersex individuals are embracing this identity.

What does it mean to be intersex?

"A person is said to be born with intersex biology when she or he is born with a body that doesn’t fit the medical standards for male or female,” Alice Dreger, PhD, founding board chair of the Intersex Society of North America, tells Health. “There are a few dozen different ways to be born intersex, because sex development is really complicated. It involves genes, hormone receptors, organ development, and more." Intersex used to be known as hermaphroditism, but the latter term is outdated and no longer used. 

What does intersex look like?

Intersex is not about gender identity or sexual orientation; it's about physical sex traits. An intersex individual may have female chromosomes but ambiguous to male-appearing genitals, or male chromosomes but ambiguous to female-appearing genitals. An intersex person could have what's called true gonadal intersex, having both ovarian and testicular organs. They could also have a complex or undetermined disorder of sexual development that doesn’t fit neatly into any of these categories. 

“People can have combinations of chromosomes, XX or XY; some have mosaics of chromosomes in some cells and others,” Arlene Baratz, MD, the board member of the Androgen Insensitivity Syndrome-Disorder of Sex Development (AIS-DSD) Support Group, tells Health.

Intersex individuals are considered a health disparity population by the National Institutes of Health, says Baratz. But intersex people typically face the unique challenge of deciding how they want their bodies to look. "Sometimes those choices are made for intersex individuals before they're old enough really to even express themselves,” she adds.

Georgieann Davis, PhD, an associate professor of sociology at the University of Nevada and author of Contesting Intersex: The Dubious Diagnosis, was born with complete androgen insensitivity syndrome, which results in female-associated external genitalia but XY chromosomes and undescended testes. “My parents, in my case and many others, didn't know I was intersex until I was in my teenage years and I didn't menstruate,” Davis tells Health. “That's when they discovered what they didn't expect to find inside.” 

What happens if you’re born intersex?

If a baby was born with intersex traits in the past, doctors and parents would typically chose a gender for the child, who might have had surgery so their sex organs matched their gender. These days, doctors and parents still often choose gender assignment surgery for intersex children, but it's a contentious issue. More parents are forgoing surgery and letting the child decide when they're older if they want surgery or treatment. 

"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," the ISNA states. "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."

“Many of these surgeries are not necessary for the health and well-being of the child,” says Ellen Feder, PhD, a professor of philosophy at American University in Washington, DC. Well-meaning parents may be simply uninformed about what it means to be intersex, or doctors advocate surgery because they feel that parents won't love an intersex child, says Feder.

“If something is framed as a medical problem or emergency, parents are likely to move forward with medical intervention because that's the option they’re presented,” says Davis. “Parents may later express decisional regret because they didn't have the information presented to them, that [intersex] is a natural variation of one's body that does not have to dictate one's gender identity.”

Indeed, “doctors have started realizing that the approach they’ve used has resulted in a lot of people feeling they were sexually and medically violated,” says Dreger. “Thirty years into the intersex rights movement, we have yet to hear from anyone who has come out to say, ‘I’m glad my parents chose surgery for me.'"

How can I be an ally to intersex individuals?

“The most important thing would be to advocate for people to make their own choices about their bodies,” says Dr. Baratz. “The person having that intervention has to have some agency in the decision.”

Davis suggests that parents of intersex children reach out to other parents of intersex kids, and then rely on their experience and support so their children can make informed decisions about their bodies. “I haven't met an intersex person or activist who's been against surgery,” says Davis. “We're against having these surgeries done on those who don't have a say in what's done to their bodies.”

Both Davis and Baratz emphasize the roles of psychosocial support in the form of psychiatric counseling as well as support groups to help intersex individuals navigate any challenges. "We as advocates would like to see the psychosocial part of care be the predominant thing," says Davis. "While surgeons and endocrinologists are key, psychological counseling is of utmost importance in handling our unique identities and traits in day-to-day life. There's no proof that growing up with a body that looks different is inherently harmful."

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