New — Hida’s Story

Dispelling The Myths:
My Experience Growing Up Intersex and Au Naturel
By Hida Viloria

I was born in New York City in 1968, to recently immigrated Colombian and Venezuelan parents, with what is known as ambiguous genitalia.  My mother was a schoolteacher in Venezuela, and my Colombian father was a physician.  Fortunately for me he’s old enough that the field of “intersex medical management” was only in its embryonic stages when he went to medical school, and thus he wasn’t taught that little intersex girls’ and boys’ genitals should be cut up in order to ensure they grow up to be “normal.”

This explains why I, unlike most girls born with bodies like mine, was allowed to keep my unique body part intact.  All my father knew was that I was healthy, and because he was a doctor himself, he couldn’t be pressured into medically unnecessary surgeries as parents often are.  He knew that the reason for clitoral reduction surgery was not medical but purely cosmetic.

My parents were very strict Roman Catholics, and never allowed nudity in our home, or spoke of sex or sex anatomy. The same held true at my Catholic school, and for these reasons, I grew up completely unaware that my clitoris was larger than other girls’.

The reason I share this personal information now is that I want people to know that growing up intersex is not necessarily a negative experience, any more than growing up typically male or female.  My experience is that it wasn’t and doesn’t have to be.

I was popular throughout grammar school, making friends easily and excelling academically and athletically.  I never felt that I was a boy or rejected female clothing or having long hair.  In middle school, I was both a cheerleader and a basketball all-star.  I was proud of the fact that I started menstruating before my friends, and when my breasts didn’t grow as much as theirs did I was relieved, because I liked my fit, slender body, that was easy to run and jump with.

No one ever told me there was anything wrong with, or even different about, my body, and thus I didn’t grow up feeling this way.  In fact, the first time I saw another girls’ genitals, at the age of eleven in a public swimming pool locker room, I thought it was she who was different, not me.  I vividly remember thinking, “she’s missing something,” but I didn’t say anything because I didn’t want to make her feel bad.  While people sometimes find this experience remarkable, I see it as simply demonstrating the fact that if children aren’t taught there’s anything wrong with them, they won’t necessarily assume that there is.

Soon after I began menstruating, my father sat me down to tell me that I would need to take some pills “to help me grow.”   I thought this was strange as I was on the tall side for girls my age at that point.  Later, I overheard my mother arguing with him about it, saying that they didn’t know what the pills would do and that I didn’t need them.   In the end, she managed to convince him because I never ended up taking the pills.

Decades later, upon questioning, my mother shared that the pills had been estrogen, and had been meant to help my breasts grow.   My father had taken me to see doctors who had recommended hormone therapy, which is typically recommended for intersex kids at puberty (estrogen to ensure girls develop “feminine” bodies and testosterone for boys to develop “masculine” ones.)

In high school, I placed on honor roll and was one of four out of one hundred twenty-five freshman girls who tried out, to be chosen for the junior varsity cheerleading squad.   Truth be told, I hadn’t wanted to be a cheerleader any more, but my friend needed a tryout partner.  The fact that I was selected out of so many girls is very important though, in light of all the doomsday scenarios used to encourage parents to cut their precious baby girls’ genitals.  It demonstrates that, rather than being a psychological misfit, I not only fit in as, but actually excelled at being, a “typical girl.”

Like all the social girls, I had a boyfriend by my sophomore year.  This time, unlike my experience with my first boyfriend in eighth grade, we did more than just make out.  While I didn’t lose my virginity with him, we did get to see each other’s genitals.

After a few months, I ended it because knew that I wasn’t experiencing those special feelings for him, and didn’t want him to get hurt.   Despite the short duration, it took him months to stop trying to get me back.   Similarly, the man I did later end up losing my virginity to commented positively about my body, fell in love, and proposed marriage after a few months.   I wasn’t interested in marrying anyone at that age, but I share the story to illustrate that having ambiguous genitalia does not limit women from successfully participating in heterosexual relationships, should they be so inclined.

In fact, today I often joke that it’s almost a shame that I’m not heterosexual, because my body’s difference actually makes me better able to enjoy heterosexual intercourse than “regular” women’s bodies are.   I have also heard this from many intersex women around the country who have emailed me.  They tell me how their husbands tell them how much more responsive they are than their other female partners had been. They also often tell me that they hadn’t even realized they were intersex until they heard me speak about it.

It probably would have also taken me much longer to realize I was different had I not been interested in and attracted to women.  It was through my first sexual experiences with them that I became aware of just how different my body is.  At this point, I became confused. When I finally learned about intersex, through an article in a local paper, the information was a relief.  After all, I had been aware for several years by that point that I was different, but I didn’t know why, or what it meant.   Having the information was like solving a mystery, and it greatly helped me.

My upset came through meeting other intersex people for the first time when I attended the first ever conference for intersex adults (in1996.)   Rather than bonding with people like myself, and sharing our similarities, I met a group of people who were deeply disturbed, and whose stories were some of the most upsetting I’d ever heard.

There were people there who had been intersex boys at birth (born with small penises and/or undescended testes), but had been given sex changes in infancy because it was believed that they couldn’t be happy as men with small penises, but that all they would need to be happy as women were “holes big enough to accommodate average-sized adult male penises.” (The quote comes from various medical articles I read for my undergraduate thesis at U.C. Berkeley.) Despite being castrated and left with huge breasts from the estrogen pills they’d been given, they had felt like boys all their lives.  Sadly, doctors had told their parents to deny everything so that the sex changes would be a success, psychologically speaking.  They weren’t.  Instead, they were left psychologically confused and deeply betrayed by their parents’ lies.

There were also women like myself who’d been born with large clitorises, but theirs had been either entirely removed, or reduced in size by clitoral reduction surgeries which doctors claimed did not damage sexual sensitivity.  I’ll never forget one of the stories one of the victims of clitoral reduction surgery had told.   She spoke about how she’d always had difficulty having sex with men because of her lack of sexual sensation, but that if she sat on the floor and hit her genital region with the heel of her foot, after about ten minutes she began to feel some kind of sensation, and she wondered if it was similar to what other women experienced during sexual arousal.   It still makes me teary to think of the lifetime of joy and intimacy that was stolen from her, just because someone had decided her clitoris wasn’t “feminine-looking enough.”

Some of the people present had approached the doctors who treated them as children to tell them the practices had been harmful.  The doctors’ typical response had been, “You think you’re unhappy now, but trust us, you’d be much worse off if we had left you as you were.”  These responses not only minimized the person’s suffering, but the claims they made were also impossible to refute.  Sadly, there was now no way for these people to know what they would have felt like if they had been left as is.

However, I had an idea what they might feel like.  For their sake, and that of babies to come, I decided at that conference that I would have to tell the world how happy I am that I was allowed to keep the body that I was born with.   Despite the difficulty involved in openly sharing this very private information about myself, I would not feel right if I didn’t share my truth so that people might reconsider the need for these treatments, and thus put an end to the suffering they cause.

If you are reading this, you are perhaps the parent of a child with an intersex variation, or know someone who is.  You may be scared by the wealth of negative presumptions out there about what this means.  Presumptions that tell you that children will not be able to grow up feeling happy or “normal” unless their bodies are “corrected.”

As someone who has an intersex variation, and has met and/or communicated with hundreds of intersex people around the world, I urge parents to consider several important facts as they weigh the important decisions ahead of them.

1. Surgeries and hormone treatments are irreversible.   If parents and their doctors “get it wrong” in deciding what kind of genitals and bodies their child will want, the child can try to reconstruct their bodies later, but their body will never be as functional as it originally were in its natural form.   Why not, instead, let the child grow up in the sex the parents decide they are closest to, and later, just like other people, the child can make cosmetic changes to their body if they want to.

2. There is absolutely no scientific or anecdotal evidence that “normalizing” surgical and/or hormone treatments are beneficial to people with intersex variations; thus subjecting your child to this is akin to experimenting with their lives.  Do you really want to risk your children’s future happiness just to give them a body that will presumably look more “normal?”

3. Surgeries and hormone treatments have been shown to be harmful, both physically and psychologically.   One of the few studies which currently exists, performed in the U.K. in 2003, found that women who had voluntarily undergone clitoral reduction surgery as adults for cosmetic reasons were worse off than those who had not, and reported that they were left worse off than prior to their surgeries, due to genital pain and/or inorgasmia which had not been previously present.(1)  Another found negative outcomes in children and adolescents who had been subjected to genital surgeries.(2)  Also, studies have shown that prolonged use of hormones may cause very serious long-term health issues.(3)

4. It is easy for children with intersex variation to grow up without being mocked for their differences.   Unlike other physical differences people are born with, private parts are just that: private.  People often talk about negative “locker room incidents,” but I‘ve spoken with hundreds of adults who conferred that their genitals were not being observed in the locker room.   When it was the case, these types of genital visibility situations tended to happen to athletes in high school, or sometimes middle school, after practices.  I would like to remind parents that, by that age, your child is more than old enough for you to inform them of the fact that their genitals are different, and that they may not want to share this with everyone as some people react negatively to differences.  This should of course be done in a manner of total acceptance, without any implication that this difference is negative in any way.  Which brings me to my next point…

5. If a parent thinks there is something wrong or inferior about their child’s body, the child will think this too, and having their body “corrected” directly conveys that something is wrong with it.  In my extensive experience with intersex adults, as well as the numerous personal accounts available in books such as the ones mentioned at the end of this article, it was the medical treatments that made them feel abnormal.  They felt that something must be horribly wrong with them if their own parents would subject them to these invasive and irreversible procedures, which none of their peers had to endure.  They often comment how I, in contrast, am so confident and well adjusted, and are touched that I honestly believe something that many of them have never been able to: that there is nothing wrong with having a body with an intersex variation.

6.  Children’s gender identity and/or sexual orientation is not changed by hormones or surgery, and altering children’s bodies only risks creating deep psychological problems.   Even with tons of estrogen pumped through their bodies since infancy, people who were originally intersex boys most often grew up to still feel like boys.  The “feminizing treatments” they were subjected to did not create “feminine women” as planned, but rather very masculine women who were psychologically tortured because they felt like they were men.  As adults, they often choose to live as men again, but now with bodies that are much less male than the ones they originally had.   Similarly, women who are subjected to clitoral reduction surgery and/or hormones do not grow up to be “more feminine” and /or heterosexual. Having artificially induced large breasts does not necessarily feel good to or natural to a girl, and feeling comfortable in one’s body is an important factor in sexual relationships.  Clitoral reduction surgery simply reduces or completely eliminates the ability to have orgasms.  Many adult women have said this has actually made them afraid to have sexual and/or romantic relationships with men, who they believe will be unsatisfied with their substandard sexual abilities.  Indeed, because women tend to be less attached to physical appearance and sexual performance, one could argue – and I have witnessed – that women who were subjected to clitoral reduction surgery are actually more likely to enter into relationships with women as adults than if they had not been subjected to these surgeries, because they are less afraid of being judged by other women than they are of being judged by men.

Simply put, however good the intentions are for “correcting” intersex variations are, these “treatments” have not been shown to be helpful, but rather, harmful, in achieving their goals. In fact, in the early days of my activism, I was sometimes called the “happy hermaphrodite” – bitterly — by some of the activists who had been subjected to cosmetic medical treatments.   While this was unpleasant, I realized that it was telling that I – the one who wasn’t treated – was happier than those who were.   The experience speaks to my point that it is better to let children form their identities unscarred by the message that their body is “defective.”
If you do not believe this, please inform yourself.  Find intersex adults and speak with them.  Read the books and studies referenced in this article.(4)
A child’s future is worth taking the time to research this, rather than trusting what certain doctors or psychologists may say.    After all, medicine is constantly evolving, and history has shown that things that were originally viewed as completely harmless (such as x-rays, to name just one simple example) were later found to be the exact opposite.
With intersex variations, it is much more complicated because fear, ignorance and bigotry drives the desire for “treatment.”  As one leading medical expert in the field, the former head of the American Pediatrics Association, once said on the “20/20” segment we were both interviewed for:

People can’t even accept people of different colors all the time.  Now we’re supposed
to accept people whose genitals don’t match their gender?   I do not believe this
society is ready for it.”(5)

I doubt he would say the same thing now that the U.S. has a black president in office, but his statement reveals the reasons for recommending “treatment.”  I argued at the time, and still do, that the solution to prejudice is not to cater to it by attempting to eliminate or change the group that is its target.  Instead, we should dissolve prejudice by teaching our children to love, value and accept people based on who they are, not the bodies they have.  And we can only teach them this by doing so ourselves.

1 http://www.mindfully.org/Health/2003/Intersex-Clitoral-Surgery12apr03.htm

2 http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(01)05343-0/fulltext

3 http://abcnews.go.com/Health/WomensHealth/story?id=6629782&page=1;
http://courses.washington.edu/bonephys/opestrogen.html; http://www.andropausespecialist.com/negative-effects.html; http://www.livestrong.com/article/31320-negative-side-effects-testosterone/

4  Karzazis, Katrina.  2008.  Fixing Sex; Intersex, Medical authority, and Lived Experience.  North Carolina: Duke University Press Books.  Preves, Sharon. 2003.   Intersex and Identity; The Contested Self.  New Jersey: Rutgers’s University Press.  Fausto-Sterling, Anne.  2000.   Sexing the Body: Gender Politics and the Construction of Sexuality.  New York: Basic Books.  Domurat Dreger, Alice.  1999.  Intersex in the Age of Ethics.  Maryland: University Publishing Group.

5 Kenneth Glasberg, “20/20,” ABC Television, Lynn Sher reporter, broadcast April 19, 2002

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