Ilene Gregorio, a Pennsylvania urologist, was doing her residency when she encountered her first intersex patient, a young woman who only became aware of her condition when she never got her period.
The teenager was diagnosed with Androgen Insensitivity Syndrome (AIS), a genetic condition that affects sexual development. People with AIS have XY chromosomes, meaning they're genetically male; however, their bodies don't respond to male sex hormones so they look female.
"I've always wondered what became of her, and how she came to terms with her diagnosis," Gregorio said. "Did she have a boyfriend? What happened the first time she tried to have sex? Was she sad that she could never have children?"
That same year, the results of South African runner Caster Semenya's gender-verification test were leaked to the media, revealing that she has both male and female characteristics.
"It made me truly think about what it meant to be a woman," Gregorio said. "Is biology destiny, or is it just a suggestion? More importantly, what role do chromosomes play not only in whom you love, but who loves you?"
These questions inspired her to write "None of the Above," a novel about a teenage girl named Kristin who learns she was born intersex and what happens when her secret is revealed to the entire school.
As Kristin comes to terms with her diagnosis, she also dispels numerous myths about what it means to be intersex — myths that Gregorio says even medical professionals can buy into.
Photo: Shih-Shiuan Kao/flickr
What is intersex?
The term intersex is an umbrella term that describes a variety of conditions in which a person is born with sexual anatomy that doesn't fit the typical definition of male or female.
Like Kristin, a person could be born appearing female on the outside but have male anatomy on the inside. A person could also be born with ambiguous genitalia, such as a girl born with a conspicuously large clitoris or a boy born with a divided scrotum that resembles labia.
It's helpful to think of sex as a spectrum with male at one end and female at the other and numerous variations in between — a vast category we refer to collectively as intersex.
"I think that most humans like to categorize people as a way to make sense of the world, to make order out of chaos," Gregorio said. "Certainly we've been conditioned by the patriarchy — and even by religious texts — to view the world as binary. Most of the time your chromosomes do dictate very specific anatomy and reproductive traits, but not all. Furthermore, I think that the idea that biology does not dictate gender is a relatively new concept."
Intersex isn't always obvious at birth. Some people may not realize they have intersex anatomy until puberty or when they learn they're infertile, while others may die without ever knowing.
Intersex = transgender
To understand the difference between intersex and transgender, you first need to understand the difference between sex and gender.
Sex refers to biology, or one's sexual anatomy at birth, while gender is a social construct that refers to how a person perceives oneself and wants to be identified.
Transgender people are those born male or female who don't identify with their birth gender.
Intersex people are hermaphrodites.
In biological terms, hermaphrodites are living things that have fully functioning male and female reproductive anatomy at some point during their lives. Certain species of plants and animals are hermaphrodites — but not humans. However, until recently the term was also used in medical textbooks as shorthand to describe certain syndromes in humans.
To many intersex people, the term hermaphrodite is an offensive slur; however, some intersex people have reclaimed the inaccurate term in much the same way that homosexuals have reappropriated the word "queer."
"No intersex story is the same," Gregorio said. "There are dozens of different 'types' of intersex conditions with varying manifestations. While most people who are intersex identify as either male or female, others are more fluid regarding their gender."
Intersex is a rare condition
Conservative statistics suggest that one in every 2,000 people are intersex, meaning that intersex people are nearly as common as redheads.
"As the wonderful people at Inter/Act Youth say, 'Intersex isn't rare. It's just invisible' because of the shame and stigma surrounding anything that has to do with sex organs and genitalia," Gregorio said.
Photo: ISNA/Wikimedia Commons
Should it be 'fixed'?
Intersexed people are often taught since birth that they need to be fixed, and many receive unnecessary surgeries.
When intersex activist Cheryl Chase, pictured right, was born in 1957, doctors were unable to determine her sex, but she was eventually labeled a boy.
However, before she was 2 years old, another doctor changed Chase's sex assignment and advised her parents to have her undergo a clitorectomy, a procedure in which the clitoris is surgically removed.
"They told my parents to move to another town and not tell anyone where they went and never tell me what happened," Chase told CNN. "All those things were so traumatizing, frightening and pain-producing for my parents that it made it hard for them to relate normally to me."
Many intersexed people undergo numerous surgical procedures, often as infants, to "normalize" their sexual characteristics.
For example, if doctors decide that what they see is too small to be a penis or too big to be a clitoris, they may recommend surgery. What you see above is a satirical ruler designed by the Intersex Society of North America that illustrates how medical professionals may decide if a person should undergo surgery.
"From the parent perspective, I can truly understand the impulse to act when a healthcare provider tells you there's something different about your child," Gregorio said. "I'm a doctor, so I understand the desire to heal people. However, it's becoming more and more clear that very rarely do people who are intersex need to be 'cured.' More often than not, they need liberation from medical intervention."
Often such surgeries are purely cosmetic, and they can have disastrous consequences, including painful scarring, reduced sensitivity and possible sterilization.
There's also a chance that a child can be assigned a gender they don't feel fits them, such as the case of M.C., a 9-year-old child who was born intersex and underwent feminizing surgery at 16 months old.
While there's no reliable data on the number of surgeries performed on intersex children, medical literature shows that the surgeries are continuing.
"There's no evidence of a change in clinician practice over the period since 2000. This is a key reason why intersex advocacy is still so important," according to Morgan Carpenter of Intersex International.
"For a long time, I bought into the medical model of intersex, that I was some kid of girl-thing-person-whatever, and that it was the doctors' jobs to make me normal — to erase the parts of me that were too strange," writes intersex activist Claudia Astorino.
"We're comfortable with the fact that there aren't just two heights, or two weights or two skin colors that people come in. Why should sex be any different?"
To learn more about intersex, Gregorio recommends the following:
- For the newly diagnosed: AIS-DSD Support Group, Intersex Society of North America
- For intersex youth: Inter/Act Youth
- For healthcare professionals: Accord Alliance
- For people interested in social justice/activism: Advocates for Informed Choice, Oii International
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