Intersex Peer Support::Bodies Like Ours

It's hardly news to gay and lesbian people that gender expectations and sexual categorization structure our most basic sense of self as well as how we are treated and valued by others. "It's a boy" or "it's a girl" are the first things declared about us as we enter the world. The answer immediately flings us into very separate socializations and expectations. No one individual fits the idealized, imaginary prototype of a male or female. Rather, when we first look at a person we run a mental sum of attributes that eventually lead us to assess them as male or female. It is considered so important for us to get it right and so insulting for us to get it wrong that if we have trouble ascertaining a person's gender we're made extremely uncomfortable. We tend to blame the androgynous for not giving us enough cues. I well imagine many of my readers have heard, "Why do you have to dress like a boy, and wear your hair like that. People don't know what you are!" or "What's the matter with you? You walk like a girl, you throw a ball like a girl, what are you anyway?" Gender nonconformity is the biggest source of social calumny we face as gay, lesbian and transgender, and intersexed people. But for 1 out of every 2000 people gender non-conformity didn't start with being butch, sissy, falling in love with the same sex, or feeling more at home as a girl than a boy despite a male body. It started when whispering and a flurry of dread filled muttering replaced "It's a Boy" or "It's a Girl!". One out of every 100 people has some sort of physical, genetic or endocrinological attribute that makes them not entirely male or female. One in 2000 has organs and/or genitals that are ambiguous. That is to say we have things that are a combination of male, female and not exactly either. We're called sexually ambiguous, but that implies that our "true" sex is obscured by some malformation and can be divined with proper testing and subsequently corrected. Our truth doesn't lie in what we might have been if we weren't what we are. It lies in what we are. What we are is a little bit of male and a little bit of female but not exactly either.

One in 2000 is hardly rare. Why don't we all know all about it? Why don't we all know people who are intersexed? Intersex is the most commonly accepted term for all of us who fall outside the male/female binary myth. I turned to Sharon Preeves, "Intersex and Identity - the Contested Self" and Alice Dreger, "Hermaphrodites and the Medical Invention of Sex" to help me explain. Briefly, the late 19th and 20th centuries saw the emergence of medical authority in matters of sexual orientation, gender and sex. Sex and gender became medicalized and society turned to Doctors to "deal with" hermaphrodites (the intersexed), transsexuals, and homosexuals. Advances in hormone therapy and plastic surgery coupled with fear and bigotry made it possible and preferable to make sexually ambiguous children go away, thus preserving the fantasy that all people are, or should be male or female. Lies, fear, secrecy, and shame are the hallmarks of an intersexed persons' childhood. If they are as lucky as I was they escaped with their bodies intact. Although intersex rarely presents a medical problem that requires surgical construction or reconstruction most intersexed children born between 1960-1980 were subjected to genital surgery done without their consent, without complete disclosure to parents, and with no regard to the loss of sensation, function, or appropriateness of an enforced gender assignment. Medicine never created males or females out of the intersexed. It simply created intersexed people who had been surgically altered to look something like males or females. Sex reassignment surgery on children does not produce genitals that function or look normal. Traumatic, painful, disfiguring multiple surgeries throughout childhood have created numb bodies with surgical side effects and debilitating emotional problems. Some never developed secondary sex characteristics that allowed them to pass successfully in their assigned gender. Many never identified as the gender they were assigned and some find it impossible to identify with males or females. As the intersexed emerge from invisibility you will increasingly hear the demand that we be allowed to live in our own bodies. Intersexed people want self-determination in our bodies, our identities and our lives. We are no longer willing to accept that "Just be yourself" doesn't apply to us.

That's the hardest paragraph I'll write to you. I couldn't avoid it. According to the Intersex Society of North America 5 children are still subjected to genital surgery every day in this country. We who believe in freedom cannot rest until it comes.

On a much lighter note being intersexed is a wonderful thing to be and from here on I'll start to explain just what it is. I have to start with a little embryology. I promise I'll keep it short! As you may know, all fetuses start out as female, nature's default. Male is an add-on. Maternal and fetal hormones excreted at specific levels at specific times determine whether a fetus goes on to completely develop as female or differentiates from female into male. Genetics play a part, but they don't define the outcome. Each and every person has the potential to develop either way, or wander off or around that path. It is entirely possible to be XX with a totally male body, or XY with a totally female body. This juicy little assault to binary thinking stuck its head into the Olympics and screamed, "BOO!" when they started doing genetic testing on athletes in the 1960's. I got that little tid bit from Anne Fausto-Sterling, "Sexing the Body."

There are as many ways to be intersexed as you can imagine. Some of us are genetic mosaics. Sounds like Italian tile pictures, doesn't it? XXY, XXYY, XXXY, X0, on Chromosome 46 and/or 47 just to name a few. Some have different genetic combinations throughout their bodies. Some seem no different from ordinary males or females. Breast development is common in all. Some actually have the potential for self-impregnation. Some, are fertile most are sterile. If you're XXY are you a male with an extra X, or a female with a Y? The answer is, yes. Some identify as women and some as men.

The most common form of intersex is caused by congenital adrenal hyperplasia. Adrenal glands excrete sex hormones, as do gonads. When they go on overdrive in an XX fetus the fetus virilizes in varying degrees. Some CAH people have female fertility, some have a partially formed uterus, or no uterus. When an XX fetus is exposed to androgenic (male) hormones that have been taken by the mother the same sort of thing happens. During the late 1950's a hormone called Progestin was prescribed for women who had irregular menses or had multiple miscarriages. It didn't really help either of those problems but it did produce a lot of intersexed babies including me. Most of us are sterile. For both CAH and exogenous (from outside the body) androgenic hormone exposure (they gave mom drugs) genitals vary from just having enlarged clitorises to having fully formed penises with sealed scrotums. We often have what we call a phalloclit, too big to be a clit and too small to be a penis. This is the organ that many Doctors considered so unacceptable they reached for rulers (The Phallometer is literally a ruler used to judge a clit from a penis. If the newborn's member is under 3/8" it was designated a clit. If it's an inch or over it was designated a penis. If it's in between they reached for scalpels to "correct" it.) Our internal organs vary from normally female to a combination of male and female which may or may not function as expected. Ovo testis, or one testis and one ovary are not unheard of. Breast development is common. Some identify as women and some as men.

Many intersexed people are XY, but cannot process androgenic hormones. Their bodies are partially, or completely resistant to the affects of testosterone. The default of nature is female, so when testosterone doesn't get there, or can't be used when it does the body feminizes. This is called Androgen Insensitivity Syndrome (AIS) or Partial Androgen Sensitivity Syndrome (PAIS). Most of these causes of intersex involve a genetic cause for inability to use the hormones. Sometimes the effect is so feminizing that the individuals aren't suspected of being unlike other females and their intersex isn't discovered until they seek medical attention for not menstruating. There are also drug causes. XY babies exposed to DES in the 1950's (wasn't that an exciting era in toxic teratology?) are often PAIS. Their genitals vary from small penis and testicles to clitoris or phalloclit with short vagina - but no uterus, and vulva that contain testicles or undescended testicles, ovo-testis, or one ovary and one testis. They usually develop breasts. They are usually sterile. Some identify as women and some as men.

There are many other sources of intersex and I've only described a few. For the curious a fast way to read the short version of many of them is to visit the ISNA.org site. That's the Intersex Society of North America. Until very recently the intersexed were at the lack of mercy of the medical establishment and were defined by it as having a diagnosis of malformation using guidelines of prognostic indicators (Is it an apple? Well, is it red, does it have little black seeds and white juicy flesh and a pH of 3? Then it's an apple! Oops, this one is green....). Intersexed people are emerging from a pathological definition of our bodies as malformed to claim our lives as valid and valuable. We don't mind medical terms used to describe our physical characteristics, but we are increasingly refusing to allow the medical profession to define us to ourselves or others. We aren't males or females who have intersexed malformations. We are intersexed. That's our sex and just like the sex of males and females it influences, shapes, and manifests itself in every part of our being, not just our genitals. There are male, intersexed, and trans men. There are female, intersexed and trans women. That may not be the way some thought it "should" be, but it is the way we are.

The next chapter in my Primer will include gender identity and orientation. I'll talk a lot more about life as intersexed. Blessedly, it will contain virtually no medical terminology.

Please see the following resources for more information:

Bodieslikeours.org is a non-profit organization which I can not praise too highly.

"Intersex and Identity - the Contested Self", by Sharon Preeves I consider a book every person would benefit from reading. It's easily read and includes a great deal of life story about and by intersexed people.

ISNA.org (Intersexed Society of North America) is a good source of quick facts. It's greatest focus is to end genital mutilation of intersexed infants and children.

"Sexing the Body", by Anne Fausto Sterling. Very academic.

"Hermaphrodites and the Medical Invention of Sex", by Alice Dreger is historical and outlines how the medicalization of intersex, transgender and homosexuality resulted in the pathologization and subsequent search for cure in each of these.

Reprinted with permission of the author. Originally published in The Empty Closet, a publication of the Gay Alliance of the Genesee Valley, NY