This will be the first of a four part series I want to do over the next several weekends if there is interest.

1.    Intersex 101--done
2.    A short history of sex, gender and how intervention started in the 1950s.
3.    What intersex activists are doing
4.    How you can help fix this broken part of our small world

It's a big topic--much too big to cover in just one diary. This one will probably be the longest one, thankfully.   I hope you'll take the time to read it through. It may appear to not be political in nature, but it is very much so as you will learn if you follow along in future installments.

The first time is in the womb at about 12-16 weeks.  At that point, if there is a Y chromosome, the fetus starts to masculinize if everything is going to plan.

If there is no Y chromosome, the fetus continues to feminize and you have a female, assuming she doesn't inherit a funky gene or develop an endocrine problem.

Sometimes, the maternal environment and endocrine hormones decide to do their own thing in the womb and give us babies that are XX but look like boys and ones that are XY but look like girls at birth. And sometimes, shit just happens that can't be traced to any one cause.

The other point of sex differentiation is at puberty when the ovaries or testes kick into high gear and start putting out large amounts of testosterone or estrogens.  Prior to puberty, most people are pretty much alike hormonally---the differentiations you see are mostly social with only minor endocrine influences. Girls are put into dresses and told to act like a girl, boys into jeans and told to act like a boy. Social cues are used to reinforce to both the child and the outside world if the child is male or female.  Most follow along quite naturally but for others, what they feel growing inside can be a vastly different story.

It all comes down to a big bowl of hormones in the womb and with a bit of luck, everything getting stirred into the right place at the right time.  

Congratulations...you have...a baby

At birth, the sex of the newborn is determined on visual evidence.  That is, those words all parents come to expect to hear shouted out, "It's a boy" or, "It's a girl", is based upon what is obvious---a penis is male, a vulva is female.  Karotyping is not standard for the vast majority of births.  Only if a problem later arises or is obvious at birth, will it be done.

A few parents each day hear something different.  They hear words like, "Oh, shit" as my mother did 4+ decades ago.  They may hear nothing as the baby is quickly removed from the delivery room.  They might be told, "I'm sorry, we don't know".  One common thing that happens when an obviously intersex birth takes place is the new parents will usually not be offered the opportunity to immediately hold their newborn, even though there is no medical emergency.

Other parents will hear, "It's a boy", and then be told a few days later, their baby isn't a boy at all.  Or they hear just the opposite, and find out that all those pink clothes they bought will fit their baby boy just fine.

These unexpected situations place an immediate burden on the new parents.  Relatives, friends, colleagues, are all waiting to hear whether the new baby is a boy or girl.  And the doctors and nurses don't have an answer.  Little information is being offered by the hospital because medical protocol doesn't include counseling and social work assistance for parents of intersex children.  Sometimes full information will be kept from the parents for a few days in an effort to not distress them too much.  

This isn't something that parents are warned about while expecting---that one in two thousand live births are intersex.  The first exposure for most (unless there is a familial history someone brought up---which usually doesn't happen due to shame and secrecy) will be when that baby is born.  I'm not being sensational here---this is very much a reality in American hospitals.

Meanwhile, everyone is asking questions and the new parents are forced to confront what is male or female without any preparation.

What is it exactly that makes us male or female?

Our chromosomes?

Our genitals?

Our internal reproductive system?

All of the above?

Or, is it our gender which often has no dependency on any of the above and won't be discovered for a couple of years?

What goes wrong?

Sometimes, it is a chromosomal variation that puts someone into the realm of intersex.  In those situations, no one may know for several years that gender, sex, and chromosomes don't always fall into a neat binary order. In most cases, it ends up leading to great distress to the parents if the person is still a child when it is discovered or to the person him or herself when they discover the secret as adults.  Just like with the intersex births obvious at birth that cause a questioning of sex, so do the adults who discover the truth about themselves as an adult--who am I? Am I male or female? Am I really a product of my chromosomes?

There was a wonderful article in Redbook Magazine a few years back (not online---but email me if you want a copy) about what happens when the parents know but never tell the child.  The woman in the article discovered that she was XY when she went back to college and did a karotype swab during a biology class.  The results weren't quite what she expected.

There are 70+ variations in intersex that can occur and since I'm not a doctor, don't play one on the internet, and didn't sleep in a Holiday Inn Express last night, I can't get into medical and variation specifics about each type of intersex out there but will attempt a quick overview.

The Not So Obvious

Briefly, on the chromosome side, you can have XXY, XXXY (mosaic--every cell in the body is different), XXO, XXXY, XYYY, XXYO.  Many different results occur with chromosome variations and there is no way to illustrate them all short of a medical textbook.  I know there are some here that fall into these categories and it would be best if they explained the hormones they take and why, if they so choose.

You can have female looking and female gendered people with XY genes and vice versa.

Some of the chromosome conditions cause genital differences, and some don't.

The Obvious

The newborn visual identification of male or female uses a very basic measurement.  

A "standard-sized" clitoris is less than .9 cm at birth.

A `standard-sized" penis is longer than 2.5 cm stretched at birth.

Anyone born with a clitoris or penis that falls outside of these medically defined standards is subject to `intervention'.

If that happens, further tests will be done to determine the reproductive capabilities as a guide in how to proceed next.  Another factor involves social issues as you will see.

How many people are we talking about?

A conservative estimate is one out of every 2000 infants is born intersex.  That is, they have chromosomes and/or genital and/or reproductive variations that differ from what is considered medically standard male or female.  Some estimates put the incidence of intersex births as high as one in every couple hundred births and others put it somewhere around one in every five thousand births.

Can it be `fixed'?

If the person has ovaries and a uterus, the doctors will usually go with female and simply do what is called "genital restoration or reconstruction" (I've tried to figure out for years what the hell is being restored/reconstructed but can't get my head around it)

If a person has testicular tissue that won't function as it should, they often go with female and surgically remove the testicular tissue. We normally call this castration but with intersex kids, it's called "genital reconstruction"

In some cases (such as with Androgen Insensitivity Syndrome) the testicular tissue should probably be removed at some before childhood if the child is identifying in as female due to the risk of unexpected virilization)

A boy  born without a penis or with a very small one (less than 2.5cms stretched at birth) will sometimes be surgically sex-reassigned as female on the assumption that he will never feel like a real man without a penis big enough for heterosexual, penetrative intercourse.   He may even have had functioning testes before surgery was performed.
A well-known surgeon (Gearhart) remarked while giving a plenary speech a number of years back, "It is easier to dig a hole than it is to build a pole".

Medical technology has yet to provide a way to surgically create a penis in an infant that will grow with his body but advances are being made.  

Dr. William Reiner, a researcher with both a doctorate in pediatric urology and psychology at Oklahoma State University has been studying kids who were surgically reassigned female as infants and has written a number of papers.  His research has indicated a good number of these children reclaim their male identity, usually during puberty.  If you google him, you find even more stuff about his work than I could possibly post.

And what should we do with the XX girls?

In a girl with a uterus and ovaries, a `large clitoris' is usually reduced in size with surgery.

Up until the late 80's, full clitorectomies were routine however, the surgeons who do these surgeries (pediatric urologists) claim to have refined their "technique".  It's a Catch-22 however.  They do the clitoral surgeries on infants and there is no way to follow up until she becomes an adult.  By then, any studies are meaningless because `technique' has changed again.

Common practice these days removes the erectile tissue while leaving the tip connected to the nerve bundle (even though there is no precise research out there yet showing just how extensive that nerve bundle is--the research there is available shows how far into the body the clitoris nerves go, but nothing yet on the actual physiology of the external part of the clitoris itself) and then sewing the tip back onto the small bit of nerves left and calling it a `restored clitoris'.

Here's a picture to better illustrate what I am talking about (sensitive ones---close your eyes and scroll down a bit)

To put this into perspective for unaffected men, it would be like removing all of your erectile tissue from your penis and then sewing the tip of your penis back onto the base of it.

This is almost always cosmetic surgery. There are very rare occasions where there are genital obstructions and those can be life-threatening; however, even those cases, fixing the medical problem will include `cosmetic restoration' since the baby is already under anesthesia.

The main reasons for this cosmetic surgery are truly social---the commonly held medical belief is she will be a lesbian without surgery, she will have gender issues, no man will accept her as she is, she'll be teased in school, and she'll never want to partake in sports.

Little thought is given to what the girl may want when she grows up---her clitoris is literally out of her hands by this time (no pun intended) and what is done is done because there is no surgery to undo it.

Many women who had this done report being in-orgasmic, uninterested in sex, have relationship problems, and incontinent. XX women with born with a large clitoris, regardless of surgical status, report as lesbian or bisexual more than their unaffected sisters do. A larger percentage has transitioned to male, regardless of surgical status, compared to their unaffected sisters and the unaffected population.

Other genital mutilations that take place in modern hospitals include surgeries to insure a boy can stand to pee.  After all, a real boy/man doesn't sit to pee, does he?  

Hypospadius is a common condition that affects boys where the hole on the penis comes out somewhere on the penis other than the tip.  It might be mild---near the tip, or it might be more severe and come out near the base. Sometimes there are many holes.  Many males with hypospadius undergo several surgeries in an attempt to fix it with the most common reason being so they can stand to pee.  After awhile, the number of those surgeries and the resulting scar tissue gives the person a penis that hurts like hell when it is erect or has little feeling in it.  

A few years ago I did a debate panel with one of the doctors that is famous for these surgeries and practically fell out of my chair when he confirmed to me upon questioning that the main reason is so they can stand to pee!  Can you imagine your otherwise functioning penis being sacrificed to numerous surgeries (each one leaving scar tissue) so you can stand to pee?!

One common thread in these surgeries is stunning not in the brutality, but in the secrecy.  

Many of those that had surgeries like I describe above are never told about them.

Current medical reasoning pushes these surgeries during infancy on the assumption the person will never remember.  It implies that the person will never be told and will never realize what occurred, if they are lucky.

For some reason, the American Pediatric Assc doesn't seem to get that the child will remember the genital exams, will eventually recognize the scars, and may one day be prompted to request their medical records.  

I found out my own history when I was 35 and I got those medical records.  

I stopped reading them when I hit page two and it said, "The clitoris was amputated to the nub".  It was several months before I picked them up again. Even now, years after reading those words on that yellowed paper, years after talking to my mom about before she died with all the knowledge I was unable to drag out from her, I damn near have a mental breakdown typing them--not because it happened but because there was a unified front to keep that truth from me while I went through all the other shit we all go through growing up and becoming sexual human beings.

Even now 2005, whether or not to disclose a medical diagnosis to the person affected is still being debated; thankfully, the proponents of lying and secrecy are quickly losing to the voices in favor of full disclosure.

Words Can Hurt

I can't end this diary without a note about language:

Many times you will hear people talk about hermaphrodites.  Get that word out of your head right now before you are tempted to use it.

It's misleading and based upon the Greek myth of Hermaphroditus. Humans do not have both female and male sex organs.  It's biologically impossible.

Ovaries and testes come from the same tissue, the clitoris and penis comes from the same tissue and so on.

Humans can be born with a mixture of both male and female tissue...that is, may have some testicular tissue on one side of their abdomen and ovarian tissue on the other, may have an ambiguous mixture of female and male genitals, and may have a mix of male and female chromosomes.  In the situation of someone with XXYY chromosomes, the medical diagnosis is "true hermaphroditism" but it doesn't mean two full sets of genitals on a person able to reproduce themselves.

Just don't use hermaphrodite---we are neither snails nor worms and for many, it's analogous to the N word.  We may use it privately amongst ourselves or to make a point (i.e. Hermaphrodites with Attitude) but it is generally frowned upon and considered a slur.

The commonly accepted language is currently intersex.

Some people in the population hate that word too, though.  I heard DSD---"Disorders of Sexual Differentiation" recently at the American Psychological Conference where I did a presentation. That description kind of sucks too...disordered?  What the fuck? So, yeah...our language is still being worked out.

Ditto for intersexual.  Beyond the creepiness of it, it is stigmatizing and a misleading label.

Most people with intersex identify in the binary---male or female or as an intersex person who identifies as male (or female) and some identify just as intersex.  If you are not sure, just ask.

Time Magazine did a big article in March, 2005 which called those with intersex "intersexuals".  The community was in an uproar over it.  I was pissed because I had spent hours with the reporter talking about language and it became obvious she wasn't paying attention.  To make matters worse, I sourced the entire article for her and she didn't even mention our website!  

Intersexuality is an equally bad word.  It's not a behavior.  

Suggestions include intersexed, intersexed person, or a person with intersex if there is a compelling reason to make note of it.

i.e.: Janet is an intersexed person.  Janet is intersexed and identifies as female. Janet is a woman with an intersex condition (preferred by most in my experience).

Resources to learn more:

NY Times article on intersex

Radio Times interview about intersex Search for intersex to find the interview (60 minutes).

Bodies Like Ours-mostly peer support for intersex but lots of good information too

Wikipedia

Genital development in fetuses

Not online but worthwhile to hunt down:

In the Life: American Gender "Size Matters"(in reruns occasionally on your local PBS station unless they are one that censored it because I say clitoris and penis in it)