Monday, 21 March 2011

They mean well (part 2)

Continuing on from the previous post about the way Intersexed children are mistreated.

The rules are different for them.

From Is Sexual Identity All in Your Head? - ABC News
Doctors say as many as 1 in 2,000 babies is born with ambiguous genitalia — neither totally male nor female. For parents, the decision about how to proceed is often agonizing, and the stakes are high: the wrong choice could trap a little boy inside a girl's body or create a girl who longs to be a man.
No girl "longs to be a man". Only boys do that, even if their bodies look female. And girls long to be women, even if their bodies look male. But we get the idea. Surgically-created Transsexuality.
The study illustrates what was once unthinkable — that a person can feel like a male without a penis — is completely possible, maybe even predictable, given what we now know about how sexual identity is formed.
Where did we get this idea from? This "accepted wisdom" that now has been throughly debunked? How do we explain the evidence that led to this conclusion?

There was no evidence. Sigmund Freud made a conjecture about "penis envy", an idea he picked out of his hat, and for lack of anything that sounded more plausible, it became accepted, with not a skerric or scintilla of evidence to back it up. Pure Phlogiston. Myth. Superstition.

There's a lot of that when it comes to the way Medicine has treated Intersexed people since 1900. Lacking facts, we made conjectures, which in turn became unquestioned beliefs. Now we know better - but the old beliefs are still taught, and many are loath to give them up just because facts debunk them.
Hormones are key. "What we now know is that hormones imprint your brain," explains Dr. Craig Peters, a urological surgeon at Children's Hospital in Boston, Mass. "We don't know exactly when it happens, but probably even in utero."
For more details, see the reference page Transsexual and Intersex Gender Identity. We're actually pretty clued-up on it now, from animal experimentation, and observations of Trans and Intersexed people.
The fetal brain develops during the intrauterine period in the male direction through a direct action of testosterone on the developing nerve cells, or in the female direction through the absence of this hormone surge. In this way, our gender identity (the conviction of belonging to the male or female gender) and sexual orientation are programmed or organized into our brain structures when we are still in the womb. However, since sexual differentiation of the genitals takes place in the first two months of pregnancy and sexual differentiation of the brain starts in the second half of pregnancy, these two processes can be influenced independently, which may result in extreme cases in trans-sexuality. This also means that in the event of ambiguous sex at birth, the degree of masculinization of the genitals may not reflect the degree of masculinization of the brain. There is no indication that social environment after birth has an effect on gender identity or sexual orientation. -- Sexual Hormones and the Brain: An Essential Alliance for Sexual Identity and Sexual Orientation Garcia-Falgueras A, Swaab DF Endocr Dev. 2010;17:22-35

Back to the ABC article..
Parents and doctors have a variety of scientific tools to tell aid them in determining a baby's sex if the genitalia are ambiguous. Genetic testing is performed to check for the presence of a "Y" chromosome. Males are XY; females are XX.
Er... usually. Not always. Fully 1 in 300 men don't have 46XY chromosomes. 1 in 450 are 47XXY. 1 in 1000 are 47XYY. Other combinations exist, including 46XX.

As for women...
PATIENTS: A 46,XY mother who developed as a normal woman underwent spontaneous puberty, reached menarche, menstruated regularly, experienced two unassisted pregnancies, and gave birth to a 46,XY daughter with complete gonadal dysgenesis.

So is determining chromosomes useless? No, it can be a valuable clue with certain Intersex conditions, though a meaningless factoid in others. In cases of cloacal extrophy, an Intersex condition that doesn't involve cross-sexed hormonal environment in gestation, and where surgery at an early age can have real benefits in enabling foecal and urinary continence, 46XX means female 9999 times out of 10000, and 46XY means male 2999 times out of 3000. In fact, there's a bit more flexibility than that, maybe 1 in 6 or even 1 in 3 are bigendered, and could function well enough no matter what shaped body they ended up with.

In cases of 46XX with CAH, 9 out of 10 can live with a female body, and most such people are just ordinary women with slightly masculinised brains (easily observable from play-patterns in childhood), though many are lesbian, bi, or straight and rather butch. Many are not though, just girls. 1 in 10 though are boys. As for 46XY babies with some forms of CAH that can lead to testicular feminisation, we don't have enough data, but most would be boys.

Do you feel lucky? Are you willing to roll the die and take the chance, be it 1 in 10 or 2 in 3 that you get it wrong, and blight their lives? Or do you bear your discomfort at these children's existence, and wait until they grow up and can make fully informed decisions for themselves?

It seems like a no-brainer. Obvious. But you forget, the rules are different for Intersexed children, and every day, quite literally, paediatric surgeons with more skill than knowledge perform un-necessary surgery, just because, well, just because. Because they "worry about the impact of growing up intersex in a world unprepared to deal with such variety."

So how do they make these awful and un-necessary decisions? Toss a coin? Well, supposedly, yes, this has happened, and indeed that would appear to be no worse than the average using other means. Or it can depend on which surgeons are available, and what techniques they're most skilled in. Or whether they want to try their hand at something new for a change, and possibly gain skills that would be useful with real children, rather than some unfortunate freak of nature whose life probably won't be worth living anyway. Imagine being Intersexed? *shudder*.

I'm Intersexed. I'm not real thrilled about it. But would I have preferred to have been born with the usual anatomy, 46XX chromosomes, a working female reproductive system? Had the chance at the white picket fence, the husband, the large family?

But then, my son would not exist. Oh, I would have had other children. But not him. So the answer for me is no. There are far worse things than being IS, even for a woman so gender-fixed as myself.

And truly, yes, there's medical issues, and psychological insecurities, but although my life would have been happier, it would not have been nearly as interesting. Nor would I have met so many talented, kind, and inspirational men and women (and some who fit in neither category). I have no cause for complaint.
At Johns Hopkins Hospital, they have a "gender committee" that meets whenever an intersex baby is born. The team is headed by a pediatric endrocrinologist, but also contains a surgeon, a social worker and a clergyman among others. Together with the parents the team evaluates the baby and decides upon the best course of action.
A social worker. A clergyman.

Deciding what should be a purely medical issue.

Think about that. Imagine if you required brain surgery, and your treatment regime was being decided by a social scientist (concerned about the effects on society) and a fortune-teller, a pyramidologist or witch-doctor, as well as some medics of unknown competence.

Under the Emperor Constantine, Intersexed infants were sealed in boxes and cast into rivers as being against God's Creation. This theology is not quite dead in various Christian churches, and there have been numerous reports of Trans and Intersexed people being given very special advice by Priests and Pastors. That while suicide is a sin, in their case, God would forgive it, and it might be best for all concerned, especially their families.

One could be forgiven for thinking that this is like letting a paedophile run a kindergarten.

The rules are different for Intersexed children, and while there's certainly a place for psychologists, social workers, and knowledgeable spiritual advisors to help parents cope.... to involve those groups in the making of a medical decision that should be purely based on biological facts, and the child's best interests, not Society's, not the Parents, not "what will the neighbours say" and certainly not on religious dogma - that is malpractice. Inhuman.

Note one group that's missing from this panel: patient advocates. People who are Intersexed, those who have had such surgery, and those who have not. Arrogance and privilege at its worst, Massa knows what's best for the playful Darkies, unfortunate creatures that they are.

And the results of this usually un-necessary and often premature (and often just plain wrong decision?
The patient may lose feeling in his or her genitals and be unable to have normal sexual relations. Some intersex individuals even call the surgery "mutilation."
Think about it. If we were talking about "normal", non-intersexed children... wouldn't surgically altering genitals so they lose all sensation, or worse, if the only sensation they feel when sexually aroused is pain... would that not be considered, without any cavil or question, mutilation? Would there be a shred of a doubt? Would there be anyone, anywhere, under any circumstances, who would consider it not to be mutilation of the worst kind?

But when we're talking about Intersexed babies... it's "some... even call the surgery mutilation". As if that was a radical, extremist, even outrageous position.

The rules are different for Intersexed children.
ISNA recommends letting the patient decide whether or not to have surgery, which means waiting until a child is old enough to make such a complicated decision.

But many physicians believe it would be more harmful to wait, and worry about the impact of growing up intersex in a world unprepared to deal with such variety.
They mean well. They cannot imagine anything worse than being Intersexed. But it's not even that, for they can't change that, all they can do is alter the appearance. What they can't imagine is anything worse than appearing Intersexed, regardless of the Reality. They're worried about it. And taking council of their inchoate fears, they castrate these children. To keep up appearances.

No-one knows better than I the fate of the Intersexed child at school. The taunts, the violence, the relics I still carry of the hairline skull fracture, the broken ribs and other bones, all received before age 9. But you see, I "looked" normal, for a boy. I got this not for any anomalous appearance, for any child whose genitalia is routinely exposed to public view has far bigger problems than mere Intersex, and mine was not, but because of my instincts, my emotional responses. The anomaly of a girl with a boy body.

This isn't about worries of what the child may experience at school; it's about their own feelings, how they react. They just tell themselves that "it's for the child's own good", ignoring what actual Intersexed people who are old enough to speak for themselves have to say.

It's not as if the surgery is some magic talisman that protects the patient from discrimination as the child becomes an adult either.

In 1987, Wilma Wood was fired. She brought suit against her employer, claiming that she had been fired after the employer learned that she was intersexed and had undergone genital surgery. The U.S. District Court in Pennsylvania found that the Pennsylvania Human Relations Act protects women because of their status as females and discrimination against males because of their status as males, but employers are not legally prohibited from terminating employees on the basis of intersex status. The Court cited caselaw arising under Title VII as "persuasive authority."

63 Fair Empl.Prac.Cas. (BNA) 677, 44 Empl. Prac. Dec. P 37,314

They can be discriminated against quite legally because they've had surgery, not despite it.

The well-meaning medics are not worried about the effects of an unprepared society on the children. They're worried about the effect of these children on an unprepared society. That people might be forced to face an issue they find uncomfortable to think about.

It's all about appearances. About society's discomfort, and that of the medics to whose tender mercies these helpless babes have been entrusted. The following is telling:
"I've had parents say, 'I can't stand changing the diaper,'" Peters comments.
Poor petals. Rather than enduring this discomfort, they'd rather have their child "corrected" by well-meaning medics who must know what they're doing, right? It must be for the child's own good, right? They're loving parents, they mean well.

Let me quote what this surgery actually means, for a girl who the well-meaning medics assigned as a boy:
Because my vagina was pinhole sized. They assumed I'd never get more than a pinky finger in it, much less a man's almighty penis, (which is sadly their main criteria when making these decisions; Will they be able to have "normal" hetero sex?), so they cauterized the mucous membranes with a heated metal rod and sewed up the tiny hole, leaving what visually appeared to be a normal if a wee bit below average penis and one testicle with a small scar.
Think about that.

What would we call someone who inserted a heated metal rod into a baby girl's vagina, to burn away all the mucous membranes and sensory tissue, and then sewed it up? What punishment would society decree for such a monstrous act?

The rules are different for Intersexed children.
Notes Peters, "A lot of the adults complaining about the surgery is based on old technology. We didn't know as much then, and surgeons would do things like cut away the entire clitoris. Surgery has improved a lot over twenty years ago."
See my previous post about my little thought experiment. Having a clitoris that is numb, or having no clitoris at all, is adding insult to injury. The injury is that boys are getting castrated, their tiny penises cut off, in the first place. Whether they have an often purely cosmetic clitoris as a result or not is a secondary consideration. Not exactly high on their priority list. I'm sure it matters to the girls, but the operation is performed willy-nilly. And many of the kids who escape the surgeons' scalpels do just fine with their uncut genitalia, anomalous though it might be. Those that do not, they as adults and with full and informed consent choose what they want done, balancing risk, cosmesis, sensation, and rolling the die with a surgeon they choose, not having to chance the one who happens to be available.

If they're allowed to. Many are not. Because those who object to their surgical assignment, well, according to the US DSM-IV-TR Psychiatric Diagnostic Manual, they are mentally ill. GIDNOS - Gender Identity Disorder Not Otherwise Specified. There's no "Standard of Care" for them, no "Best Practice" as there is for standard Transsexuality (Gender Identity Disorder). If they're lucky, they get fast-tracked for surgery. Not so lucky, they're forced to jump through the same hoops Transsexuals do, like performing seals. A years-long, sometimes decades-long performance in order to get psychiatric clearance, permission from those who know better, for treatment to correct the well-meaning surgeon's error. And if they're out of luck... treatment is refused by well-meaning mental health professionals. In the patients best interests of course, because, well, just because. It upsets people to think about it.

But for babies, it is a Medical Emergency! It must be fixed immediately! Or... er... or... well something bad, they're sure of that. There must be something, right?
"It's rare that an enlarged clitoris would cause any medical problems, so we have time to wait," says David Vandersteen, pediatric urologic surgeon and vice-chief of surgery at Children's Hospitals and Clinics of Minneapolis/St. Paul.
They mean well.

It's not just babies, either. Intersexed people who are much older can be treated the same way, with no consideration of their wishes or desires. As children, adolescents, and (rarely) as adults.
When I was in second grade, I was sat at a table with other little kids. We were 'special' because we all had gender neutral names. We really didn't understand that... Our table was all boys, but we were the smallest boys in the entire second grade. One of my table mates had micro penis and undescended testicles. All of the bigger boys picked on him incessantly about it. He always played with the girls. All of the bigger boys picked on him for that too. For the entire year his life was hell and he was the most unhappiest boy you ever saw.
That summer we were supposed to both get a minor operation to drag out testicles down and tie them off. I was side tracked by other events, so I wasn't there.
They opened the boy up, only to find a full set of female reproductive organs. The child was lucky, the doctor sewed everything up and had the child involved in what was to happen. That was 1969, it was unheard of back then to let a child be involved with that kind of decision.

1973 came.

His family had moved to our street around 1970. He was terribly shy around us kids who were always hanging out at the house next door but eventually he warmed up to us. In the summer we always got on our bikes to go to the Y nearly every day. He never would go with us, but he did loosen up and became friends with us. One day, we saw him limping around his yard mowing the grass with a bandage on his leg. We asked him about it. They had taken skin from his butt cheek. He showed us what was under the bandage and we saw a real nasty scar. We were kids and kids think scars are cool and ask the most embarrassing questions. Soon we were showing off our scars, but his were just so much more... disturbing. Over the next few weeks we found out that they had taken the skin to make a scrotum for him and that his other scars were to make him more of a boy. We were there when the skin became necrotic and was removed only to have more skin removed from the other butt cheek and stitched in place. We did manage to get him to go to the Y with us. We had great times. Those endless idealism summers were the afternoon is forever. There's always enough grape Kool-Aid for everyone. Gilligan's Island is always on...

The end started in August of 1973. On one of those endless afternoons my family moved away....

My friend went in for that one last surgery. Just that last one. There were no CAT or MRI scans. Most of what's known today wasn't know back then. Just a simple surgery for a guy that wanted to grow up to be the first Catholic Priest who pitched for the Oakland A's. Who wanted to be the first one among his friends to touch a girls boob or even kiss her.
In other words, a guy.

He only had one more surgery, out of nearly a dozen. He was so used to surgery, it was nothing to him. Just another scar among many to show off on a Saturday.

The doctor cut in to him, looked around for the two shy testicles... only to find a complete female reproductive system lying in wait. The doctor did what any doctor of that time would do. He removed the faux scrotum that covered sealed tissues that were in fact fused labia. He removed the phallus that needed 4 or 5 surgeries and 7 years of aggressive testosterone treatments to make it grow proud. Another surgery to move a vein from his leg so he could pee standing up...
The doctor removed it all and tossed it in the trash because he did what felt right to him. To him, the person lying there was biologically female and shouldn't have anything male about them. So he cut it all away.
My friend went in, laid down thinking that this was the last painful surgery and he would be a full man. Only to wake up to a true nightmare. Because losing his hard fought for manhood was only the start.
But, losing his manhood was a massive blow.
They took him off of testosterone immediately. His body was so used to it, and it also leveled his mood.
Another blow.
He was forbidden from seeing any of his friends, or going to school, or playing with anything boy like.
He couldn't wear pants, only dresses. His close cropped hair, they refused to let it be cut.
Without testosterone, the body responded like any 13 year old girl's body does. Breasts started to bud, a menstrual cycle began.
The blows to his psyche didn't stop.
He couldn't play little league. He couldn't be an altar boy any more.
He was an innocent 13 year old boy who went in to surgery to become a man...
Only to wake up in a nightmare that wouldn't stop.
After all of that, it still didn't stop.
It didn't stop with a rape.
It didn't stop with a pregnancy.
It stopped with suicide.
Problem solved, and society safe.

I'll close with that quote of Mencken:
Every normal man must be tempted, at times, to spit on his hands, hoist the black flag, and begin slitting throats.
Yes. Not just "normal men", Intersexed women too.

Repeat after me, Zoe. "They mean well. They mean well". And try your hardest to believe it, so the tears of rage and hurt and grief stop flowing. Tears for those who weren't as lucky as you were. Tears for those in the past, and God help us, those babies being butchered even now by those who Mean Well.


Lloyd Flack said...

"They meant well." So did Lenin. So did Pol Pot.

Evil must be understood. Which means no demonization. No attributing motives that its victims find it comfortable to give. You have to understand people's real motives to have a chance of convincing them that what they are doing is wrong.

But we also have to avoid allowing excuses. Good intentions are not necessarily a mitigating factor. In fact hanging on to a belief in ones righteousness can be an aggravating factor. These are people for whom the cost of what they are doing is not real. You have to find a way to make it real to them.

Zimbel said...

This is an extremely well-written pair of articles. I'd suggest attempting to publish them to a wider audience.

Chris Phoenix said...

You said: "If we were talking about "normal", non-intersexed children... wouldn't surgically altering genitals so they lose all sensation, or worse, if the only sensation they feel when sexually aroused is pain... would that not be considered, without any cavil or question, mutilation? Would there be a shred of a doubt? Would there be anyone, anywhere, under any circumstances, who would consider it not to be mutilation of the worst kind?"

In other societies, perfectly healthy girls lose their clitorises by the millions, and are mutilated in other ways that make sex painful. And that tradition pre-dates Freud, and is broadly supported by society.

When you're looking for the root of the pathology that lets people do such horrible things, look beyond intersex as a reason.

Perhaps there's some ingrained discomfort with sex, which comes out in different ways in different societies. In the US, we circumcise boys (in part, to make it harder to masturbate) and inflict random mutilation on intersexed babies. In parts of Africa, they make it difficult or impossible for women to enjoy sex.

Glenn Ingersoll said...

When a friend had a son she said she got him circumcised so he "would look like his father."

Well. How is that different from the surgeries you talk about? Only in scale.

My friend wouldn't have had the baby's nose altered to look like that of his father, would she? I mean, how many boys hold their little dicks up to dad's to see how they compare?

I thought it was a lousy justification. A nurse friend of hers who had done lots of circumcisions just shrugged when I said I didn't like it. "It doesn't hurt them," she said, as though she knew what she was talking about. The little babies don't scream, it seems. If they did, would Miss Nurse have felt a qualm?

Zoe Brain said...

Glenn - I think the difference in degree amounts to a difference in kind.

The difference between cutting off an ear, and cutting off the head.

Tell me - do you genuinely see no difference between removing a square inch of sensate skin from the side of your manhood, and cutting off the top four inches?

Neither would be particularly good, and I wouldn't recommend either. But they are not the same thing.

Vene said...

Attention other circumcised men, this is not about us. Stop making it about us. This is about a far more vulnerable group of people. Circumcision is nothing in comparison to this. You still have your genitalia. Your genitalia match your gender. Your genitalia function. You don't commit suicide at disproportionately high numbers. You are trivializing the amount of pain these people have went through, are going through, and will go through.

Not everything is about you

P.S. Thank you for this series Zoe, but I really can't say I can accept meaning well as an excuse. Although I admit the truly well-meaning have a better chance of seeing the barbarism in what they are doing/advocating.

Chris Phoenix said...

Zoe and Glenn both have good points.

Zoe is absolutely right about the difference in amount / difference in kind. From the point of view of the people it's done to, losing one's genitalia is far worse than losing a fraction of skin from one's genitalia.

But for the people making the choice, in both cases, they have somehow convinced themselves that the integrity of the genitalia don't matter. Here is where Glenn is right, and his point is useful if we want to understand how to stop this.

Somehow, a parent choosing to inflict surgery on her infant, for purely cosmetic reasons, surgery that impedes his future sexual function, is not evil. In fact, this parent can discuss the choice lightly with friends; the choice is mainstream and almost expected, and not much consequence is attached to it.

The people circumcising boys have managed to convince themselves that their choice does not matter to the boys - won't make any real difference to them.

From some of the stories you told, Zoe, it sounds like the people making choices for intersexed babies have somehow, incredible though it seems, convinced themselves of the same thing. That whatever they choose, it won't make any "real" difference to the person they're choosing for, so they might as well choose what's comfortable for others.

My impression is that there is a whole range of female "circumcision", from removal of the inner labia (which might be somewhat comparable to male circumcision) to removal of the entire clitoris (which is comparable to what's done to intersexed babies). But, probably the people deciding to have their daughters "circumcised" go through the same thoughts all along the spectrum.

Figure out how that can be, and you'll be closer to knowing how to change the process.

Glenn Ingersoll said...

One of the most famous cases of botched circumcision is the one turned into a book, As Nature Made Him, a book useful to the discussion of gender & biology as the boy who lost his penis was raised as a girl, including hormone therapy upon puberty, but as an adult sought to reverse this therapy and recover his male identity. He eventually committed suicide.

No, I never said circumcision is the same thing as the more radical surgeries you describe. Nor is female circumcision merely the female version of a snipping of skin. But I think it is telling that circumcision is considered trivial and anyone who brings up the subject is dismissed; the sculpting of human genitalia is the right of the parents, not the child. Right?

A. C. V. said...

As a woman who's fortunately never had to endure any unwanted, unnecessary genital alteration surgeries, I really feel horrible for intersexed people and men who have had unwanted, unnecessary genital surgeries forced on their bodies. It should always be the choice of the person who will be permanently affected by the surgery.

I think that having a convo about male circ here is useful in a lot of ways. It's not an issue that just affects men, after all: some of the male babies who are circumcised will grow up to be transwomen, and may want their foreskins back, for whatever reason. That should be their right. And Glenn is right: sometimes a botched circumcision can lead to partial or complete loss of the glans penis or the entire penis. It's very rare, but it's happened. And for no real reason other than "Well he should be circumcised BECAUSE..."

Also, I think male circ ties in with what Zoe is pointing out as a culture of treating children as things that have no human rights and no right to say what they want done with their own bodies as opposed to what society says should be done to their bodies. Americans circ boys because a man should look like his father, because it's cleaner, because that's what's done to a boy, because it deters masturbation, because because because... there is no reason. It's as self-perpetuating and goes in as many circles as a dog chasing its own tail, and with as much sense. Similar issue with surgeries on intersexed kids: there is no real reason or logic behind it other than that society is uncomfortable with a person who explodes their ideas about sex and gender. They can't handle it so they make the child's 'transgression' invisible, rather than actually deal with it.

I actually became aware of the genital integrity movement (and intersexed/trans issues) through becoming aware of the wrongness of male circumcision. So I think it's a good jumping-off point for someone who has never had to face these things themselves to stop and think. I am uncomfortably aware that I might have had genital surgery if I had been born male, or intersexed. Realizing what 'keeps you safe' from a society that wants to shove its members into neat little boxes is rather chilling when you realize that there ain't that much protection after all.