Tuesday, April 28, 2009

Intersex 101

What is intersex?

OK, it's important that I get the basics out for blogreaders unfamiliar with intersex conditions. In our society, it’s common to think that all people are born either male or female. But the biological truth is that sex is a spectrum, not a binary. It’s typical for people to lie near the male or female ends of the spectrum, but many people are born with bodies closer to the middle. Sometimes this fact is immediately clear at birth, because a baby has intermediate genitals. Sometimes a person may look male or female on the outside, but have different internal organs than would usually be expected. And sometimes a person may have a body with typical female or male organs, but have chromosomes that do not match expectations.

How common is intersexuality?

About 1 in 1000 babies are classified at birth by doctors as intersex because their genitalia appear atypical. This is more babies than are born with Down’s Syndrome. Many more babies are diagnosed as having a "disorder of sex development" based on variant genitalia, yet not given an "official" intersex diagnosis. Other individuals are not diagnosed at birth, as their genitals appear fairly standard, but later are found to have an intersex condition. It is commonly estimated that 1 in 150 people has an intersex condition. Some find out because they encounter fertility problems, or have a medical scan done for some unrelated reason. Some people never know--do you know if your chromosomes are XX, XY, XXY, or some other variation?

What is the gender of an intersex person?

The way to tell the gender of an intersexed person is to ask them. Often intersex people identify as either male or female, because that is how contemporary Western society understands gender. Some of us do not identify as male or female, however. You can’t tell by looking at an intersex person’s body what their gender identity will be—different people with similar looking intermediate genitals will have different identities. Simply respect each individual’s sense of self.

What are central concerns for intersex people?

Our contemporary society frames being intersex as a disorder, and being endosex--having a body that matches expectations of binary sex--as necessary and good. Intersex status has been treated as a source of shame in the U.S., which means that most intersex people are in the closet about their status. We have been called “freaks” and “monsters,” have been treated as sexually titillating, have been excluded from international sporting competitions, and have been subjected to medical treatment without consent. Intersex people deserve to have their bodies, their gender identities, and their choices respected.

A major complaint of many intersex people is that they were subjected to childhood surgery that they are unhappy about. Every day in the U.S., dozens of babies are surgically altered to “correct” intermediate genitals to look more typically female or male. Doctors choose the sex they see as appropriate for the infant based on appearance or surgical ease—and often, their choice is wrong.  Furthermore, although doctors say they have gotten better at these surgeries over time, they often result in loss of genital sensation. I don't know about you, but I and many others would rather have sensitive genitals than somewhat-more-average-looking ones. Advocates for intersex people urge that no sex assignment or cosmetic surgery be performed on children. Instead, intersex children should be allowed to grow up to make their own decisions about what surgery, if any, they would like.

The decision about a sex of rearing for an intersex child is often rushed.  This is because families are only given a day or two to decide whether to put an "M" or "F" on the birth certificate.  What intersex advocates urge is that the requirement of listing a sex on the birth certificate be removed.  After all, in most states in the U.S. doctors used to be required to list a race on the birth certificate, but that requirement has been eliminated.  The reason given for listing a sex--that it would help to identify an infant who was lost or abducted--is very weak.  Footprints which are taken at birth are vastly more identifying, and in any case, the family can give authorities information about the sex, race, hair color and other information about what a child looks like without it being listed on a birth certificate.  So, removing the requirement of listing a binary sex of male or female on the birth certificate would not hurt anyone, and would give families of intersex children all the time they like to decide on a provisional sex of rearing.

Often, doctors and families try to keep chidren's intersex status a secret, even from the children themselves.  Knowing that there is something "wrong" with your body, but not what that is, is confusing.  Knowing that your body is sex-variant, and that this is something that must be kept a secret from others, leaves a person feeling ashamed and isolated.  Advocates ask that children be informed about their bodies in a nonstigmatizing way.  Having a body that is atypical can be seen as special--think of how our society celebrates having red hair, another atypical bodily status.  

Sometimes an intersex child may be happy living in an assigned sex, but then experience bodily changes at puberty that are atypical for that sex.  For example, an individual born with a typical-looking phallus but internal ovaries and a uterus will develop a menstrual period.  If that child is happy being raised as a boy, he may find this difficult to deal with.  In that chase, the child should be given access to hormonal treatments to prevent menstruation and promote a typical male puberty.  If he wishes it, he should be given surgery to remove his ovaries.  The decision should be his, and if he is comfortable leaving his body unaltered, that should be the course of action, and he should be supported in his embracing of his sex-variant body.

Intersex people may suffer from gender dysphoria if they were assigned by doctors to a sex but do not identify with it. If so, they should be assisted in securing hormonal and/or surgical treatment so that they can transition to the sex that is the same as their gender identity, if that is what they wish.

Intersex people and their families may also need supportive therapy. When a mother gives birth to an intersex baby, the family may be thrown into distress. It is especially important that the family receive support so that hasty decisions about “normalizing” surgery are not made. Adults who discover that they are intersex may also be thrown into an identity crisis and need support. And since all intersex people have to face lack of understanding and pressure to hide our sex status, many of us need access to counseling.

There is a myth that intersex people are almost always infertile.
Sadly, many of us are infertile not because of how we were born, but because of surgical intervention in infancy. In fact, intersex people can have children (I did it. . .), but we may need fertility treatment and supportive medical assistance during pregnancy and birth.

What are some common types of intersexuality?

There are many conditions that lead to intersex status. I have no interest in getting overly clinical and showing the sort of medical photographs of dehumanized children with their genitals exposed that are so common in discussions of intersex. We are people, not . . . bits for display. However, I'll do a quick run through of some of the diagnoses given to intersex people, with physical description, in the name of education.

People with Complete Androgen Insensitivity Syndrome usually have a clitoris, labia, and partial vagina, with testes internally. They develop breasts at puberty, but no periods. People with Partial Androgen Insensitivity Syndrome are born with intermediate genital appearance and internal testes.

People born with Congenital Adrenal Hyperplasia or CAH are born with a phallus of average or small size, an empty scrotum, a uterus, and ovaries. At puberty, people with CAH will develop breasts and get a period.

Hypospadias refers to a range of conditions in which a person has phallic tissue, but does not have the urethral opening at the tip. This can be a small displacement in an otherwise typical penis, or can occur with an intermediate genital appearance.

People who have Klinefelter Syndrome are born with XXY chromosomes. Individuals with Klinefelter’s usually have a penis and small testes, wide hips, small breasts, and are usually tall and long-limbed.

People who have ovotestes are diagnosed as "True Gonadal Intersex" by doctors. Ovotestes are gonads which combine ovarian and testicular elements. Those of us with ovotestes may also have an ovary or a testis, and may have a uterus and a menstrual period.

What can other people do to be allies for intersex folks?
There are plenty of things allies can do, and I'll post more about them later. But the single most important thing allies can do is to refuse to treat intersex status as something shameful and freakish. Allies can help educate people about the fact that intersex happens and is not some sort of medical emergency requiring cosmetic surgery on infant genitals. Only an intersex person can determine what hir gender is, and what surgery if any zie wants--doctors and parents can no more decide what gender a person will have than they can pick hir sexual orientation or taste in music. Educating people about this will help lead to a day when parents welcome an intersex baby as a happy rather than tragic addition to the family.

Sunday, April 26, 2009

Intersex Roadshow: A Personal Introduction

Intersex by birth, honest by choice.

I'm Cary, and my sex is neither male nor female; I'm intersexed. I was born that way. Because my nonstandard set of parts included an ovotestis, which is a gonad that's in between an ovary and a testis, I'm classified medically as a "true hermaphrodite." But doctors don't get to decide who I am.

I'll explain more about the sorts of bodies that get one classified as intersex in a later post. I'll also go into more detail about how we get treated by doctors, institutions, families, and people on the street. The simple story is this: we live in a society that acts as if there are two sexed flavors of people--male and female--but reality is more complicated and more interesting. Intersexed people are all around you, though often you'd never notice us. We live in a culture that treats intersex status as shameful, and most of us born this way have been told all our lives to hide it. I'm not hiding anymore.

I am not defective. I am not disordered.

It is a simple fact of nature that sex is not dyadic, not black-and-white, not limited to two categories. Real bodies come in a rainbow of possibilities. But our medical establishment today insists on allowing for only two, male or female. Intersex conditions are deemed "birth defects" that must be "corrected" surgically, as soon as possible--even though the surgery leaves us with scarred genitals that don't look typical and have limited or no sensation. The idea is that somehow the surgery will make us have "normal" identities as men or women, and that this is vital for everyone's wellbeing.

The power of the medical establishment is so great that what limited intersexed advocacy there is focuses on doctors. The aims of advocacy are basically two: one, to stop infant genital surgery, and two, to get access to medical resources to undo earlier medical interventions. To try to reach these goals, our advocates have been forced into bizarre postures. Again, I'll explain more in a later post, but in brief, doctors dismissed intersex advocates' calls to end infant genital surgery, saying, "What?! You want to keep us from doing surgery so these poor infants will grow up to be some third-sex intersexed freaks? Never!" To placate the doctors, these advocates said, "Oh no! We just want to delay surgery a bit, but we'd never want people to grow up to be unsexed freaks! In fact, we'll never use the name 'intersexed' again. We're just people with Disorders of Sexual Development who are a bit miffed because you cut off the parts we wanted, so please give us more surgery and hormones so we can be normal men and women living with well-managed DSDs."

Well, I am not defective. I am not disordered. I am an intersexed person. And if both doctors and people who speak in my name recoil in horror when I say that I don't indentify as a man or as a woman, too bad for them.

United we stand.

A couple of years ago, something happened to me that changed my life: I met my partner, Beta. I was doing research on embodiment in virtual worlds and was interviewing people with gendertransgressive avatars. In the course of interviewing Beta, I found myself in the presence of someone smart and appealling. . . and openly intersexed. As I've said, most intersexed people have been well-schooled in stealth, so this was a rare treat. One of the joys of having Beta in my life is how things that seemed implausible in isolation became possible in tandem. Like coming out, and being honest about my birth status, or using neutral pronouns (like the pronoun "ze" instead of "he" or "she"). Like being able to assert my masculine gender identity, my intersex sex status, and a femme flair to my style of gender expression all at once, unapologetically.

Lots of people live genderqueer lives, though it' not easy for anyone, given the gender role policing commonplace in American society. Oddly enough, though, it's particularly hard for an intersex person to step outside the confines of dyadic gender, and it wasn't until Beta entered my life and lent me hir support that I was really able to do it myself.

Don't fence me in.

Something that really frustrates me is hearing advocates tell the world that "real people with DSDs" almost always identify as male or female and conform to gender norms. They say that exploitative academics want to use the idea of intersex to subvert gender, against the wishes of "real people with DSDs." They say, "Of course we have nothing against transgendered people who don't want to go all the way and like confusing others with their odd gender presentations, but really. . . people with DSDs are usually quite happy with normal male and female labels."

I was female-assigned, female-reared. I never identified as a "real woman" and wanted out of that box, but it just seemed implausible for me to do anything about it. When you're facing not only the usual transphobia, but the voice of Intersex Authority saying you shouldn't attempt to escape the dyadic gender boxes, it's hard. All I can say is that when I finally, finally came out, it was such an extraordinary relief.

So, I'm an academic, and I do think acknowledging intersexuality presents a strong critique of dyadic gender ideology. I'm not going to keep quiet about that just because it freaks out doctors with regressive gender beliefs. I am profoundly concerned that those doctors are performing lifealtering cosmetic genital surgery on unconsenting infants, but I don't think my keeping silent and closeted helps matters.

The intersex roadshow. . .

What I think will help is just the opposite. I want to take my intersex, androgynously masculine, gendertransitive self public. I want to talk about things I've been thinking about for many years, personally and academically. I want to reach out to my intersex sibs, and to genderqueer folk, and to thoughtful, interested people of every stripe. Hence this blog . . . Hope you enjoy.