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

[IndianaGreen]

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/

[readmoreoften]

1. I understand the pragmatics, but I hate to see intersex bodies pathologized.

I get that it's being pathologized so that ignorant parents of newborns won't freak out and force unnecessary treatments on their kids, but I can't stand the nomination of everything as a "disorder." Many intersex people feel that their bodies are ordered just fine. I also have an issue with the concept of gender identity disorder.

It's a sticky wicket. The concept of two opposite sexes (not a hierarchy of flesh with male at the top, girl at the bottom, boy/eunuch/virago in the middle) in Western culture is the result of trying to stablize the ideals of male and female. Reaffirming this by calling anything outside those ideas "disorders" seems like the creation of a long-term conceptual problem (i.e.: a social lie) as an attempt to stop medical atrocities in the present. I understand the present failings of the term "intersex" since it problematically situates folks as a metaphorical 'in between', but it seems to me that calling a sexuated body 'disordered' when it has no specific medical hardships (other than abusive 'corrective' surgeries) is no less problematic.

Considering that I dated one AIS person (who didn't know she was AIS until we dated) and I almost started dating another AIS person (who did know, while I didn't) in my experience, these 'disorders' are pretty damn common.

[devinkay]

2. Yes and no

readmoreoften, in one sense your post is spot on. Gender variation is not a disorder; it's simply a fact of nature that manifests in a small but significant segment of the human population. Intolerance of gender variation is the real disorder; it's but a learned cultural behavior, like racism or homophobia.

While I agree with you that the male/female gender dichotomy is a narrow-minded, culturally-driven, artificial and obviously incorrect construct, I must take issue with your characterization of gender reassignment surgery as abusive. Long-standing international medical consensus holds that GRS for certain forms of gender variation is a highly effective intervention while psychotherapy and drugs are not.

Characterizing reassignment surgery as abusive -- some go so far as to call it mutilation -- serves only to delegitimize its value as an avenue of deliverance for those like me who feel trapped and cheated by the foibles of nature. Dismissing this highly safe and effective procedure (calling it abusive and putting 'corrective' in quotation marks) is potentially more damaging than pathologizing my condition by calling it a disorder. I would much prefer to be called "sick" and have access to a "cure" than called "normal" and have access to surgery denied because some peripheral, unaffected others consider it unnecessary.

In my own case, I sought surgery because a lifetime of personal psychic effort and years of professional counseling could not so much as dent my visceral distaste for the male attributes of my body. I hated those attributes, and by extension myself, because they felt as alien to me as a second head or a third eye, and all the therapy in the world wasn't going to make me like a third eye. Surgery for me equaled salvation. Today I'm healthy, happy, well-adjusted, financially successful and surrounded by loving family, friends, colleagues and neighbors who see me and treat me as the whole person I am. And all that wonderful healing began in a recovery room.

Really, if you think about it, the debate surrounding GRS is kith and kin to the debate surrounding abortion. Whose body is it? Whose mind? Whose life? Who presumes to make this choice for me?

http://devinkay.com

[indigo32]

3. I personally don't consider myself to be interexed

though turners syndrome is on many of those lists. I am a female. Period. Thats the difficulty with some of this. It's all very personal. Why not let people be who they are right?