When Hida Viloria was born in New York in 1968, her South American parents had to decide if she should have surgery. The infant Viloria did not have a defective heart or sick lungs; in fact, she did not have any disease at all. The only thing different about her was that the doctors had difficulty telling if she was a boy or a girl.
Viloria’s father went to medical school in Colombia before sexual corrective surgery became the norm for children born intersex. Her father refused the surgery for his baby, believing surgery should be avoided in infants unless completely necessary. Viloria was raised a girl in a strictly religious Latino home in which sex was not discussed.
“I didn’t even know I was intersex, and I had no identity issues,” said Viloria, who now works as a spokesperson for the Organisation Intersex International. “I didn’t want to be a boy, I didn’t think I was a boy.”
One day, when Viloria was eight years old, her mother let slip that the doctors didn’t know if Viloria was a boy or a girl when she was born. Viloria, ignorant of how she was physically different from the other girls, thought that she meant her aggressive behavior and attraction to girls.
There are several physical conditions that can cause an infant to be intersex. Typically, women have a pair of sex chromosomes in the shape of XX while men have a pair of sex chromosomes in the shape of XY. However, sometimes a baby will be born with a triplet instead of a pair.
When the triplet is XXX or XYY, the child is still a female or male, respectively and will often not be diagnosed unless they have a genetic test for another reason. When the triplet is XXY on the other hand, a condition called Klinefelter’s Syndrome, the affected male will experience infertility and small testicles and may also experience other physical and neurological issues, such as language impairment, gynecomastia (increased breast tissue) and possible osteoporosis later in life.
Even if the chromosomes are structurally typical, they may still contain mutations in the DNA itself to cause an intersex condition. For example, the sex chromosomes may be XY but the Y chromosome lacks the sex determinant gene (called Swyer Syndrome); therefore, the child would be chromosomally male but have female characteristics.
Something similar happens in Androgen Insensitivity Syndrome in which the Y chromosome has the sex determinant gene but the cells can’t adequately process the androgens (male sex hormones like testosterone). The expression of this condition ranges from a male with not fully masculinized genitals (partial AIS) to having female external genitalia but internal testes (complete AIS).
Ambiguous genitalia can also be caused by mutations in the genes encoding sex hormones or by the prenatal environment. A female fetus could experience clitoromegaly (enlarged clitoris) from an enlarged adrenal gland that produces excess androgens, or from a mother using anabolic steroids while pregnant.
Viloria did not know that she had clitoromegaly until she went to college at UC Berkeley in the 1980’s.
“It was just bizarre, but I already had an identity as the bizarre goth girl, so it wasn’t as bad as if I were trying to be Miss Clean-Cut,” Viloria said.
Unlike Viloria, most intersex people at the time had experienced life-altering surgeries and hormone therapies.
Sexual corrective surgery was being developed for infants around the 1950s, and by the 1960s the surgical techniques were widely admired and performed upon intersex babies. Clitorectomies, complete removal of the clitoris, were performed up until the 1970’s when they were largely abandoned in favor of “nerve sparing” clitoral recession.
“It was a cosmetic issue, not a health issue,” said Viloria, who in college became more involved in intersex activism.
Today, Viloria works for Organisation Intersex International. She spoke at UC Davis last Wednesday to bring awareness to the fact that gender isn’t just about men and women – intersex individuals are variations, not disorders.
Viloria recently served as an intersex representative during the Caster Semenya incident, the South African runner who won the 2009 World Championships and was subsequently accused of not actually being a woman. Through gender testing she was found to be externally female but with internally male anatomy.
Viloria and the OII oppose sexual corrective surgery for infants due to the lack of evidence that the surgery is needed at all for psychological health. The organization is working to keep the medical establishment from enforcing gender binary through surgeries.
“They can try to heal their psychological scars,” Viloria said, “but the physical wounds are irreparable.”
AMY STEWART can be reached at science@theaggie.org.
