8-20-08, 10:10 am
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.
PA: How did you finally find out about your medical history?
AH: I did not find out the truth that I was in fact intersex, or genetically male, until I was 21 years old. I was in college, and after a few years of research, I finally got the courage to talk to my mother. Again, I thought she had no clue about any of this, so I had to approach the conversation as though I was telling her I might be genetically male. Well, I was definitely stunned and shocked to know that she had the answer. This was in 2003 not long after my 21st birthday. Later that summer while I was home on break from school, we went to see the geneticist and endocrinologist I saw as a child. They gave me copies of my medical records and we talked. However, I was stunned still, and confused. Our agreement was for me to come back and continue seeing them, but I did not.
PA: How has having AIS intersected with your gender and sexual identity?
AH: After the first few months of finding out about being AIS I was really confused. Not so much about my gender identity, but how to cope with being one thing and living as another. However, I found a wonderful support group of wonderful people who really helped me understand that regardless of what I have, I'm still me.
PA: What are some of the difficulties that intersex people face due to ignorance and prejudice?
AH: I think on a social spectrum, people are so afraid to tell anyone about themselves. Some people that I know did not find out until they were in their 30s and 40s that they were even intersex. These women are married to men. And all of the sudden they are being told they are genetically male. Well, it really rattles their foundations and core beliefs, especially those with really conservative and religious backgrounds. All of the sudden, they find themselves in a genetically homosexual relationship even though socially they are heterosexual. It's a hard thing to grasp. Many people would also lump intersex people with transgendered people. However, although I am a big supporter of transgendered issues, I must stress that intersex and transgender are two totally different things. We (intersex) have a medical genetic condition where our sex chromosomes do not match our gender at birth (in most cases). Transgendered people's sex chromosomes match their gender at birth, and even have functioning bodies to reproduce. Intersex cannot reproduce.
PA: The Intersex Society of North America advocates a new 'patient-centered model' for dealing with intersex patients, leaving behind the days of secrecy, shame and unnecessary surgeries performed on children. How do you feel about this position?
AH: I agree with that. I think most importantly, a person should have the right to choose his or her course of treatment.
PA: Finally, do you see the struggle for intersex rights as related to other struggles for social justice, such as women's equality and LGBT rights?
AH: Yes and no. Women's equality and LGBT rights should be fundamental rights we get at birth. I personally think it is sad that we live in a country where we have to define the rights of the citizenry to ensure proper equality while some groups are guaranteed freedoms just by winning some sort of genetic lottery (right gender, right sexuality, right color etc.).
However, as an intersex person, I believe there are some safeguards needed to be in place that are somewhat separate from things such as women's equality and LGBT issues. For instance, being intersex is completely a medical issue. We need rights to ensure we get proper treatment in ways that only help us, and in ways that produce no long term effects. We have to be able to make decisions for the ways in which our bodies are treated. As a child between the ages of 0 – 14 years (at least) we cannot knowingly make those correct decisions. I think in some cases it would be hard to comprehend what it means. We live in a world that doesn't always embrace diversity, so the natural choice for any kid would be to be like everyone else, whatever it takes. However, that's not to say that as an adult the same decision won't be made, but at least as an adult you can understand the results of those decisions a little better. I am intersex: I need medical safeguards to ensure my proper treatment in the medical world. I am an intersex, female, and lesbian. So naturally women's equality and LGBT issues are important to me. They are something I embrace; however, my being intersex has nothing to do with that type of social justice. Only if I choose to live as an intersex person—non-gender, Middlesex, or whatever label that would imply a person in between male and female—then I would drop the Women's equality and LGBT issues pertaining to myself. That would be an intersex social justice cause all in itself.
