Talking About Disorders of Sex Development: Interview with Intersex activist Amy Hinton

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Talking About Disorders of Sex Development: Interview with Intersex activist Amy Hinton

By Gregory Esteven

Editor's note: Amy Hinton works with the Intersex Society of North America.

Political Affairs: For our readers who don't know, intersexuality and its alternative, "disorders of sex development," are modern names for what used to be called "hermaphroditism." But intersex really refers to a variety of conditions. Would you mind giving us an idea of this variety?

AMY HINTON: Intersex or Disorders of Sexual Development is basically an umbrella term for a number of conditions. Androgen Insensitivity Syndrome, 5-alpha reductase syndrome, congenital adrenal hyperplasia, gonadal dysgenesis, Klinefelter syndrome, etc. are all under the umbrella of "intersex" or DSD. Each condition has some effect on the sexual development, which creates a situation where sex chromosomes, genitalia, and/or secondary sex characteristics are not exclusively male or female, hence the term intersex—between sexes. However, since that isn't always the case, we have advanced our terminology to say disorder of sexual development.

PA: How common is intersex?

AH: Generally, 1 – 2% of live births are born with some form of intersex.

PA: You have what's called Androgen Insensitivity Syndrome. Could you explain to us what that is?

AH: AIS is a condition where an XY (male) fetus does not respond to androgens. All XY fetuses have androgen receptors. Our bodies do not respond to those receptors, basically ignoring them. So when the sexual development occurs in utero, we just ignore it, and we stay in a form that would most likely be associated as being female. All fetuses in development, look female. A cleft forms where a vagina will be and tissue to form a clitoris. However, the same tissues are in all fetuses. That cleft can also fuse to form scrotal sacks and the tissue grows to form a penis. AIS doesn't really form either, and keeps a female appearance. Internally, all fetuses have gonads. This tissue in XX (female) ascends to form ovaries. In XY (male) they descend to form testes. With AIS, they remain in the lower abdomen region. Typically it is the gonads that are the cause for someone to be diagnosed with AIS, because they will form what appears to be a hernia in the lower abdomen. Or one of the gonads will "drop" or descend, or try to, and that is when the child is rushed to the doctor. These unknown masses are taken out and tests show XY chromosomes.

In most cases of AIS the child is born appearing like a female. This was true in my case. No signs indicated otherwise. And it was the hernia that brought me to the doctor and tests found that I had AIS. So I've been a female all my life and identify as such.

PA: Like many people with disorders of sex development, you didn't find out until you were an adult. Were you aware of being different when you were growing up?

AH: No, I did not know. However – feeling something – I can admit that I felt different, but it was something I couldn't put my finger on. Like I was just not like everyone else. My mother told me when I was 11 years old that I would not be able to have children, and that I would never get a period like other girls. She told me that I was born with a condition that had no name and was very rare. And being me, I believed her. I did not question this until years later. Thankfully the internet came to be during my teenage years and I was able to research and find out about AIS.

http://www.politicalaffairs.net/article/articleview/7284/