What Being Intersex Actually Means

by JR Thorpe

On Tuesday, one of the fashion world's top models, Hanne Gaby Odiele, revealed that she's intersex, and the resulting press furore has proven how little the world in general knows about what being intersex actually means. Intersex people aren't the same as transgender people, and it's considered offensive to call them hermaphrodites. It's not that complicated on paper (they have gender characteristics that don't necessarily fit neatly into one gender binary or the other); but, as Odiele's own story of surgeries and shame proves, intersex people (who comprise up to two percent of the population) can face some serious societal and medical challenges.

Odiele joins a long list of intersex figures in history, including a famous Spanish nun of the 18th century who was surprised to discover herself developing a penis years after taking the veil. The condition leaped into public prominence again with the publication of Jeffrey Eugenides' prize-winning novel Middlesex, about a child with an intersex condition, though it's been criticized by intersex campaigners for the fact that (spoilers) the intersex lead character is born that way because of the family's history of incest.

Odiele will bring it into the limelight once more, so let's have a look at the medical realities and controversial history of what it means to be intersex.

It's Essentially About Physical Sex Ambiguity

Intersex people are born with characteristics that don't fit typical reproductive anatomy. Something about their bodies, visible or not, is discovered that means they can't be neatly categorized as one sex or the other. There are a big array of things that could disrupt sex categorization in this way, from undescended testicles in Odiele's case to hormonal differences. Iain Morland, in Transgender Studies Quarterly, writes:

"Intersex is often popularly conflated with ambiguous genitalia — external sexual anatomy that cannot be easily described as entirely female or male, such as a larger-than-typical clitoris. However, for clinicians, an intersex diagnosis can refer also to attributes that are not apparent on the body's surface, including XXY sex chromosomes or indifference to the hormones that produce effects connotative of masculinity. What such intersex diagnoses have in common is the medicalization of a failure to classify the body as one of two sexes."

It's Not The Same As Being Transgender

Intersex people are often, though not always, distinct from transgender people, whose gender identity doesn't line up with the gender they were assigned at birth. Intersex people possess characteristics on or in their bodies that mean they can't be medically placed definitively as one sex or another (though they may often still identify as one gender or another). The Intersex Society of North America explains that "Most people with intersex conditions come to medical attention because doctors or parents notice something unusual about their bodies. In contrast, people who are transgendered have an internal experience of gender identity that is different from most people." It's respectful to remember that.

Different Causes Of Intersex Conditions Have Different Effects

The causes of people being born intersex are pretty diverse, and many of them are related to hormones. One, for instance, congenital adrenal hyperplasia (CAH), means that adrenal gland over-production creates ambiguous genitals. Two other causes of intersex conditions are partial and complete androgen insensitivity syndrome; androgens are male sex hormones, and being insensitive to their effects in the womb affects how the body develops. Partial androgen insensitivity syndrome causes ambiguous genitalia, while the complete syndrome means there is a vagina but no uterus, and undescended testes.

Surgeries To "Correct" Intersex Genitalia Are Controversial

In Odiele's case, her undescended testicles were removed because of stated health risks by doctors. She has stated, however, that this and later surgeries to "reconstruct" her vagina were distressing, and that plays into a long medical discussion about how best to treat intersex kids and adults. The Atlantic highlighted one particular case in 2014, in which a child's parents were suing surgeons for causing harm for assigning a SEX [DELETE gender] via surgery that later was determined not to fit the child's gender identity.

The controversy around genitalia surgeries in intersex kids goes back to the 1950s, when John William Money's perspective on gender identity held sway. "Money's premise," Sarah Creighton MD explains in the Journal of the Royal Society Of Medicine, "was that children are psychosexually neutral until the age of 2 years and that what is required for a stable ‘normal’ gender identity is unambiguous genitalia and unequivocal assurance from parents as to the chosen gender."

We now know that gender doesn't work like that, but it gets worse, as Creighton notes:

"Money illustrated his guidelines by a case of a normal male infant... who sustained traumatic loss of his penis at the age of 7 months, was reassigned female and underwent gonadectomy and surgical reconstruction. The child apparently developed a female gender identity and was used to prove the importance of ‘nurture over nature’ in gender identity formation. However, subsequently Diamond reported that at the age of 14 years this patient rejected a female identity and at the age of 25 years married a woman and adopted her children."

Ever since that discovery, genitalia surgeries have been subject to scrutiny. The Intersex Society Of North America recommends that "normalization" surgeries "should not be performed until a child is mature enough to make an informed decision for herself or himself."

It's also important to point out that surgeries for intersex children and adults aren't all about making things look "normal" — they can also be concerned with fertility, bowel and bladder functionality, and sexual function. Arguments for surgery center around helping people have a more "normal" life and not risk social ostracizing or a lack of everyday experiences, while arguments against it include the fact that it has risks, and that it indicates shame and a lack of acceptance.