Thursday, April 10, 2014

Testosterone and the Sex Policing of Athletes' Bodies

New policies for Olympic and other international athletes set an upper limit to the amount of testosterone considered "normal" for a woman, and require those women who have natural levels of T that are higher than this to have medical interventions to lower their levels. If the women are found to be intersex, these interventions include surgical removal of their gonads, and (though this has NO relation to testosterone production) surgical reduction of their clitorises if these are deemed "enlarged."

This is just crazy. Some facts: first, levels of testosterone vary a lot. Tests of elite athletes show that about 17% of male athletes have testosterone in the "female range" and 14% of female athletes have testosterone in the "male range." Secondly, there is no direct correlation between levels of T and athletic performance; that's simplistic and nearly magical thinking. And third, it makes no sense to define the range of "normal" T levels for women very narrowly (15 - 70 ng/dL) and for men very broadly (300 -1,000 ng/dL), in essence saying that there's no such thing as a natural level of testosterone too high in a man, but there is such a thing for a woman.

Bodies vary a great deal. Why do we focus obsessively on policing the sexed body of athletes, rather than on other "abnormalities?" Basketball players are abnormally tall, which actually does enhance their performance. Many gymnasts are double-jointed and abnormally flexible. In fact, most any sport rewards people with atypical bodies, and we *celebrate* that. But when it comes to sex variance, a variation that is associated with high performance more in fantasy than in fact is suddenly subject to extreme bodily policing, and that's just wrong.

Saturday, December 21, 2013

A Seasonal Thought

Apparently 0.8% of American mothers report that they became pregnant as virgins.

The likelihood that some of these mothers had in fact had classical penile-vaginal intercourse, but didn't wish to report it, is indicated by the fact that these self-proclaimed virgin mothers were twice as likely to have taken an abstinence pledge than were other mothers.

But others of these virgin mothers were likely telling the technical truth: that they had not yet engaged in penetrative intercourse when they became pregnant. Sperm, you see, swim, and if they are deposited on the exterior of a person's body, they can make their way inward all by themselves. Thus, pregnancies regularly result from "outercourse."

As an intersex person, I think about this a lot, because doctors often claim that genital surgery is not cosmetic but functional, as without an "adequate" vagina or "repaired" penis, we will be infertile. To which my sophisticated academic rebuttal is: nuh uh! You need the right hormonal balance to go with the gametes, and some way in or out, but it certainly doesn't need to be a vagina that can "accept" a penis, or a phallus that is large and has the urethral opening at the tip.

Wednesday, February 20, 2013

Hypospadias: Intersexuality and Gender Politics

If you are looking around for information about intersexuality, one of the first things you're likely to read is that "most intersex children are assigned female at birth."  This is in fact false.  

In the U.S. today, according to the CDC, one in 125 children assigned male at birth is surgically modified to fit that binary sex status.  The percentage of children assigned female at birth who are genitally altered in infancy to feminize their genitalia seems to be lower.  Exactly how much lower is very difficult to determine, since nobody is gathering the data we'd need to have.  The reason we know the 1-in-125 figure is because these children assigned male are all given the same diagnosis: hypospadias.  Hypospadias is the diagnosis given to most children born with intermediate genitalia who have external testes.  Rates of hypospadias have been increasing, and the CDC is collecting data due to concern about that.

The reason people continue to say that few intersex individuals are assigned male is that doctors term hypospadias a "penile malformation" rather than an "intersex condition."

I've written about this before in this post.  I noted there, "medical diagnostic categories are not logical, despite our ideology that they should be so. The majority of individuals born with intermediate sexual anatomies [and surgically assigned male] are not given an intersex diagnosis. I believe that what underlies this is gender ideology. And that gender ideology is this: masculinity is fragile, especially when it comes to what a man has in his pants. To live as a man with an inadequate penis is seen as intolerable. To have one's status as a 'real man' challenged is viewed as psychologically crushing. Thus, doctors feel, if they were to categorize someone as intersex and then assign them male, they would be acting cruelly.  Women, on the other hand, are perceived as more gender-flexible. After all, it's reasoned, a woman isn't shamed by wearing pants or taking on a power career. [Doctors view] female-assigned people as more comfortable with androgyny and as better at dealing with emotional challenges."  Because of assumptions about fragile masculinity and flexible femininity, doctors feel more at ease assigning children they designate as intersex female. Those they regularly surgically alter to conform to binary male sex norms, they wish not to label intersex.

I was contacted by some people after writing that prior post challenging my assertion that hypospadias is an intersex condition.  They countered that it was simply a minor displacement of the male urethra.  So I wanted to make my case more clearly.

Let's start with some illustrations.

All children start out in the womb with the same set of genitals, an intersex form.  As a rule I will not post photos of children's actual genitalia because it is exploitative, but in this case, I feel a medical image of the standard genital form of a fetus isn't going to cause additional emotional trauma to any particular child, so here's a photo:


Our society expects this intermediate genital form to differentiate before birth into two "opposite" binary sex forms (penis and testes, or vulva), but in fact, babies are born with genitals on a full spectrum between these two socially idealized poles.  Let's look at how medical professionals illustrate this sex spectrum.

When a child is diagnosed as having some form of XX, CAH, congenital adrenal hyperplasia, the sex spectrum is described by the "Prader scale," and the "stages" of the "condition" evaluated using this chart:



When a child with XY chromomes is diagnosed as having a form of AIS--partial or complete Androgen Insensitivity Syndrome--the sex spectrum is termed the "Quigley scale," and is illustrated like this:

  
You can see that both of these illustrations include 6 forms, although they number them in reverse order and with different numerals.  What they both show is that between a genital form considered typically female and one considered typically male, there is a common spectrum of intermediate forms.

This is equally true for children who are diagnosed as having hypospadias.   But medical illustrations of hypospadias are very different.  They do not picture the genitals as intermediate in form.

Instead of picturing the same range of in-between forms shown in the Prader and Quigley scales, medical illustrations of hypospadias variations show something odd: a carefully illustrated "normal penis" with a series of dots superimposed upon it to indicate the level at which the urinal meatus/ vaginal opening are located.  

 
The penis is always illustrated as erect, and often with a lot of illustrative detail to emphasize the "reality" of this imaginary ideal penis existing instead of the intermediate genitals actually present in intersex individuals who have external testes.



Let us be clear here.  A child diagnosed with hypospadias of an "advanced degree," be it termed perineal or posterior or scrotal, will have an intermediate phalloclitoral form with a substantial invagination, not a large, erect phallus with a dot at the bottom.  They'll look more like the Prader 2 or Quigley 4.  I'd illustrate such a child's genitals more like this:



Why would medical illustrations of intermediate genitalia be representationally accurate in the case of intersex children diagnosed under the rubrics of AIS or CAH, but inaccurate if highly detailed in the case of intersex children diagnosed under the rubric of hypospadias?  Only gender ideology can explain this.  Children diagnosed with CAH and AIS are routinely assigned female.  But children with hypospadias are surgically "corrected" to male, and to undermine the "adequacy" of a male's phallus is treated as untenable.  Parents (and doctors!) must be reassured by looking at the erect, large, ideal penises drawn in the hypospadias illustrations that the genitally intermediate flesh of the child they see is illusory, and that an excellent penis will soon be revealed by the scalpel.  

So: medical illustrations of hypospadias, and the medical assertion that it is not really an intersex condition, relate to our ideologies of masculinity.

The differences in medical approaches to intersex children routinely assigned female and routinely assigned male extend further than illustrations and terminology.  They also determine all the tests and evaluations the child will receive.  If an intersex child lacks external testes--the determining characteristic of a hypospadias diagnosis--that child is routinely subjected to a battery of tests: genotyping, endocrine screening, medical imaging scans.  This is not the case when an intersex child has external testes.  In fact, even suggesting that a child with intermediate genitalia but palpable testes receive any sex-related tests at all is considered "controversial" by doctors.  Since hypospadias is defined as a penile malformation that is not an intersex condition, why would anyone wish to test sex chromosomes, hormone levels, or internal reproductive structures?  It's presented as an unacceptable waste of time and money, in an affronted tone.  

In fact, individuals born with hypospadias do commonly have other sex-variant characteristics.  An example is the presence of what is termed a substantial "prostatic utricle," a uterine structure that may be small or full-sized that connects to the vaginas present in these children at birth.  While the "pseudovaginae" are removed and closed during infant genital "normalizing" surgery, doctors do not test for the presence of a uterine structure.  People diagnosed with hypospadias and their doctors generally only become aware that there is a utricle present if something goes wrong, such as the development of uterine cancer or painful cysts--and then usually by accident during imaging scans for some other presumed cause of the patients' symptoms. 

I want to note that many intersex people assigned female at birth complain of all the invasive tests and screenings and procedures to which they are subjected in childhood, so the fact that intersex children with hypospadias diagnoses avoid these is not necessarily a bad thing.  But not even thinking of checking for a uterine structure in someone born with hypospadias who presents to a doctor with pelvic pain could have very negative health consequences. 

It is clear is that intersex children diagnosed with hypospadias are treated very differently than children with other intersex diagnoses.  Rather than being treated as bizarre and interesting medical cases that require a lot of medical study and intervention, they are treated as normal boys with a little urethral displacement issue.

The thing that children diagnosed with hypospadias have in common with other intersex children is that they are subjected to genital normalizing surgery that can have many negative consequences.  Medical texts list as unwanted consequences of hypospadias "repair" surgery urethral fistulae, strictures, and diverticulae, recurrent urinary infections, "excess skin," hair-bearing skin, persistent chordee, erectile difficulties, erectile persistence, chronic inflammation, and a condition called balanitis xerotica obliterans.  Textbooks are oddly silent on the issues of loss of genital sensation that are very common, and the fact that children born with genitals in the middle of the sex spectrum are particularly likely not to identify with the sex they are surgically assigned at birth.

Some children who are diagnosed with hypospadias have genitals that are quite close to the binary male ideal in our culture.  For them, medical interventions may be fairly minor, and the side effects may be modest.  They are very likely to see themselves as typical males, and are probably unlikely to wish to be identified as intersex because they share our society's pattern of fragile masculinity.  I am empathetic with their position.  But we should be able to support the gender identities and dignity of people born with hypospadias who identify as men without resorting to inaccurate medical illustrations and illogical medical taxonomies.  

Hypospadias is an intersex condition.  The surgeries we perform on unconsenting intersex children without their consent have lifelong consequences.  These can be profoundly negative for children whose genitals are dramatically altered--something that intersex advocates decry all the time.  But we should also question why we routinely risk the loss of sexual sensation in the glans of the male-assigned child whose urethra is in a slightly atypical place.

All of us born intersex deserve to be recognized as such, and to be granted autonomy to make our own decisions about what "normalizing" surgical alterations we wish, if any.  Putting an end to the routine genital reconstructive surgery performed on the many thousands of children diagnosed with hypospadias each year should be considered an important point of intersex advocacy.



Wednesday, January 2, 2013

Just-So Stories about Hermaphrodite Fish















A central issue that makes life hard for intersex people is invisibility.  Most people are unaware of how common intersex individuals are, something I’ve often discussed on this blog.  But there’s a larger setting in which the fact that sex is a spectrum gets erased, and that’s in descriptions of biology and the animal kingdom as a whole.  One way this happens is when biology textbooks fail to mention the fact that instances of intersexuality are found in all animals.  Another way it happens is through what we’re taught about those species in which hermaphroditism is the norm.  It’s the latter that I want to illustrate for you today, by examining about how we talk about a fish, the bluebanded goby. 

The bluebanded goby is a small and colorful fish, bright orange-red with iridescent blue stripes.  Bluebanded gobies are hermaphrodites, with the ability to produce either eggs or sperm.  Each bluebanded goby can switch from producing eggs to sperm or vice versa in the space of about two weeks; externally, there’s very little difference between an egg-laying or sperm-producing bluebanded goby.  They have a “sexual papilla” through which they can release egg or sperm, and it is a bit pointier when in sperm-producing mode and a bit wider in its opening when in egg-laying mode.   Most bluebanded gobies spend most of their lives in egg-laying mode.  They live in mating groups, and typically only one member of each group produces sperm, with the rest laying eggs, maximizing the number of offspring the mating group can produce.  It’s a neat arrangement.  It’s also not one that you’re likely to hear about if you are visiting an aquarium or keeping fish.

The intersex nature of the bluebanded goby is erased or distorted in most descriptions of the fish, because our society is so invested in the idea that sexual dyadism is natural and universal that we can’t see evidence to the contrary right in front of our eyes.  We don’t hear about it in our educations.  Say, for example, you’re a schoolchild going for an educational trip to an aquarium, and you see the pretty gobies there.  Here’s all you’d learn at the Cabrillo Aquarium in San Pedro, California about the sex of bluebanded gobies: “Recognized by an elongated robust body and two dorsal fins, males have longer dorsal spines and a suction-like disc that is formed by the connection of its pelvic fins.”  (See here.)  You’d hear yet another example of the “natural, universal fact” that all animals are male or female, not evidence of the sexual diversity of the natural world.  Not only does the hermaphroditism of the gobies go unmentioned, the “masculinity” of bluebanded gobies in sperm-producing mode is exaggerated—they are said to have “longer dorsal spines,” a phallic and aggressive description of a nonexistent difference.  In fact, scientists determining whether a bluebanded goby is in egglaying or sperm-productive mode do not look for any difference in dorsal spine length, only at the shape of the sexual papilla.  (Generally, a sperm-producing bluebanded goby will be on the large side for the species, and hence will have largish fins—but egglaying bluebanded gobies that are large have the same size dorsal spines, and the dorsal fins on a given fish do not change size when it moves between egglaying and sperm-producing modes.)

When popular educational sites do mention sex variance in the bluebanded goby, they don’t explain the fact that all bluebanded gobies are hermphrodites, capable of producing eggs or sperm.    They instead tell a story of rare and fascinating “sex changes” in fish that are otherwise binary in sex: “Males and females are similar in coloration, however, males have a longer dorsal fin than the females do. One interesting fact about blue-banded gobies is that if there is no male present, the dominant female in a group of blue-banded gobies has the ability to change her sex to that of a male.”  (See here.)  This description frames bluebanded gobies as sexually dyadic, existing as males and females, except for the occasional female who goes through a “sex change” in desperate times.  The fact that all of the bluebanded gobies are hermaphrodites, and that each time they move from group to group they have the ability to move from egglaying to sperm-producing mode or vice versa, goes unmentioned.  Rather than undermining the ideology of a natural sexual binary, the story of the rare “sex change” actually bolsters it.  “How bizarre and rare is this deviation, a one-time move between natural binary sexes!”

Not only do educational sites teach that bluebanded gobies are almost always “normal males and females” rather than always hermaphrodites, the way they present goby “sex changes” reflects ideas about human gender roles.  The BBC Science and Nature website states that bluebanded gobies “live in small groups with a single male and multiple females.  If the male leaves or dies, the largest female changes sex.”  (Link here.)  The story is one of a large, dominant male with his harem of smaller females, and a burly female fish changing sex to “rise” to male status and take over the harem.  This is how the story is told by most scientific articles about bluebanded gobies that’s I’ve seen.  Let me quote a passage from a 2005 article in the Biological Bulletin on “sex reversal” in bluebanded gobies, so we can examine this in more detail:

“Larger size often equates with increased success in aggressive encounters and therefore social dominance, providing a proximate mechanism for the size advantage hypothesis. In protogynous sex changers, the most reproductively significant resource that dominance affords is “maleness”; thus the reproductive payoff for dominance is extremely large, and females would be highly motivated to increase their aggressive behavior in times of social instability (i.e., in the absence of a dominant male).”  (See here.)

I’ll now restate that passage in clearer English and make overt its hidden assumptions: “Sex is binary but in some rare species ‘sex reversal’ can occur.  When it does occur, it is from female to male, because everyone knows it’s better to be male.  To be male is to be dominant and aggressive, which is good.  Usually in species where ‘sex reversal’ can occur, males keep the females in their place, but if there’s no male around, the females will all want to battle because the winner will get to be the male.”  This just-so story reaffirms all sorts of human gender stereotypes—and in so doing vastly distorts the objective reality of bluebanded goby life.

The first way the scientific fable distorts reality is by calling hermaphroditic gobies “males” and “females,” imposing binary sex language on fish that are born hermaphrodites and can shift back and forth between egglaying and sperm-producing modes multiple times in the course of their lives.  The term “sex reversal” also implies two opposite sexes rather than one sex continuum.  It would be much more reflective of objective reality to speak in terms of shifts in reproductive modes among hermaphrodites than about sex reversals between females and males.

The term “protogynous” used to describe gobies in the article means “starting out female,” which not only implies that the fish are not really intersex by nature, but also frames shifts in reproductive mode as only occurring in one direction: from “female” to “male.”  In fact, bluebanded gobies shift just as easily from sperm-producing to egg-laying modes when entering a group with multiple sperm-producing fish.  (See here.)  The idea that every bluebanded goby “wants to be the male” is a projection of human ideologies onto fish behavior.  The majority of bluebanded gobies at any given time are living in egglaying mode because this conveys a reproductive advantage for the group.  One could just as easily say that it’s obvious that most gobies “want to be female” since that’s what most of them do, but that one of them has to make the sacrifice and “be male” for the good of the group.  That would also be projecting emotions and motivations onto the fish, of course.  In fact, bluebanded gobies are just hermaphrodite fish reproducing in the most efficient way possible by operating in egglaying mode more often than sperm-producing mode.  But the story we read is one of enforced, devalued feminization and aspirational maleness, because that affirms sexist human gender ideologies.

Entwined with these male-privileging gender ideologies is a story about dominance and submission.  As the story goes, high status fish are dominant; low status fish are submissive.  The most aggressive and dominant bluebanded goby “gets to be the male,” while the rest have lower status that accords with their more timid female nature.  This narrative is so familiar in patriarchal society that scientists seem not to notice it’s an ideology they’re imposing on nature in their research and writing. 

Here is what we do know about bluebanded goby reproduction, stripped of human gender ideologies.  In this hermaphroditic species, the greatest number of offspring are produced when most of the fish are laying eggs.  So they form mating groups or families, typically of 3-7, in which one of the gobies’ bodies shifts to sperm-producing mode, and the rest shift to egg-laying mode.  The fish that takes on the inseminating mode needs to be robust, because it must continuously mate with the rest of the fish.  When mating groups form or change, the members all swim about actively, zipping toward one another.  (Actually, this behavior is quite common, and regularly occurs between all of the bluebanded gobies, including the egglaying ones in established groups.)  What determines which goby in a new group will take on the sperm-producing role is the behavior of the other fish.  A goby being zipped at by a zippier fish will dodge out of the way.  This gets called “submission” by scientists, but could just as well be termed “peacekeeping,” and would most accurately be simply called “getting out of the way.”  By engaging in this dance of zipping about, a new group of gobies determines which of the fish is the most energetic and robust.  Often it’s a large fish, but that’s not always the case.  That fish shifts to sperm-producing mode (unless it is already in that mode), and the others shift to egg-laying mode (unless that is already the case).

Oh, and by the way, bluebanded gobies that are in sperm-producing mode don’t “fight harder” to stay in that mode because they “don’t want to be female.”  If a group of bluebanded gobies is assembled completely out of fish that are in sperm-producing mode, all but one of them shift to egglaying mode.  This takes the same amount of time as it does for one sperm-producer to emerge from a group that is assembled out of gobies that are all in egglaying mode, and leads to the same rate of fertility.  (See here.) 

So: by nature, bluebanded gobies are intersex fish that form efficient mating groups of multiple egglayers and one inseminator, and shift reproductive modes as they move from group to group.  This is an interesting part of the wide diversity of sexual arrangements in nature.  I believe that teaching people about this natural diversity would make the world a better place for intersex people, as it would make it less likely for us to be perceived as “unnatural” and “disordered.”  But instead of teaching children about sexual diversity, educational sites either completely deny that bluebanded gobies are hermaphrodites, or only mention it as a story of rare and odd sex changes from dyadic female to dyadic male.  And scientists, educated like the rest of us in this context, impose all sorts of ideologies about binary gender roles onto what they observe about the fish, perpetuating the problem of distortion.

Nature is so much more interesting than the stories we tell ourselves about it.  It’s time to stop obscuring the objective fact of sexual diversity.

Saturday, July 28, 2012

Images and Musings Available on Tumblr

Sometimes I run across images related to intersex matters that make me want to applaud, or to go hide under my bed.  I've decided to start sharing some of these pictures and my thoughts on them on Tumblr, so if that sort of thing interests you, feel free to visit The Intersex Roadshow Reports.

Sunday, May 6, 2012

Trans and Intersex Children: Forced Sex Changes, Chemical Castration, and Self-Determination

Children’s lives lie at the center of social struggles over trans gender and intersex issues. If you talk with trans and intersex adults about the pain they’ve faced, the same issue comes up over and over again, from mirror-image perspectives: that of medical interventions into the sexed body of the child. Intersex and trans adults are often despairing over not having had a say as children over what their sexes should be, and how doctors should intervene. Meanwhile, transphobes and the mainstream backers of intersex “corrective” surgery also focus on medical intervention into children’s bodies. They frame interventions into the sexual characteristics of intersex children as heroic and interventions into the bodies of trans children as horrific.

The terms and claims that get tossed around in these debates are very dramatic. Mutilation. Suicide. Chemical castration. Forced sex changes.

We need to understand what’s going on here, because it’s the central ethical issue around which debates about intersex and trans bodies swirl. The issue here is the question of self-determination, of autonomy. Bodily autonomy is the shared rallying cry of trans and intersex activists, though we might employ it in opposite ways. Refusing it to us is framed as somehow in our best interests by our opponents.

In this post we will look at how four groups frame the issue: intersex people, trans people, the mainstream medical professionals who treat intersex people, and opponents of trans rights.

If you talk to people who were visibly sexvariant at birth, you hear a lot of pain and anger and regret about how their bodies were altered. This is crystallized in the phrase of intersex genital mutilation, or IGM. As a result of infant genital surgery, many intersex people suffer from absent or reduced sexual sensation—something mainstream Western medicine presents as unethical female genital mutilation (FGM) when similar surgeries are performed on girls in other societies. There are further sources of pain: as a result of “corrective” surgeries, intersex people can suffer a wide range of unhappy results, such as loss of potential fertility, lifelong problems with bladder infections, and/or growing up not to identify with the binary sex to which they were assigned. It is extremely painful to identify as female and to know one was born with a vagina that doctors removed with your parents’ consent, or to identify as male and to know one’s penis was amputated. Imagine if someone performed a forced change on you--would you not feel profoundly violated?

So the intersex perspective is that no one should medically intervene in a person’s body without that person’s full informed consent. Bodily autonomy is a fundamental right. Nobody except you can know how you will feel about your bodily form, whether you might want it medically altered, what risks of side-effects you’d consider acceptable. Routine “corrective” surgery performed on intersex infants is thus a great moral wrong.

When you speak with trans people, childhood medical intervention again comes up with an air of great regret, but now the regret is that one was not permitted to access it. Almost every person I’ve ever spoken with who wants to gender transition medically, whether they’re 18 or 75, has expressed the same fear to me: “I’m afraid I’m too old!” For a while this mystified me (how is 22 “old”?), until I realized what they meant was, “I’m post-pubertal.” For many trans people, childhood was awkward but tolerable, as children’s bodies are quite androgynous. Puberty, however, was an appalling experience. Secondary sexual characteristics distorted the body—humiliating breasts or facial hair sprouting, hips or shoulders broadening in ways no later hormone treatments could ever undo. Many trans people live with lifelong despair over how so much maltreatment and dysphoria could have been avoided if they could just have been permitted to avoid that undesired puberty.

So for trans activists, advocating for trans children so that they might avoid this tragedy is vitally important. The child’s autonomy is central, as it is for intersex advocates, but here the issue is getting access to medical treatment in the form of hormone suppressants, rather than fighting medical intervention. What trans activists seek is the right of children to ask for puberty-postponing drugs, to give the children’s families and therapists time to confirm that the children truly identify as trans, and fully understand what a medical transition involves. Then the individual can medically transition to have a body that looks much more similar to that of a cis person than can someone who has developed an unwanted set of secondary sex characteristics.

So for trans and intersex people, children’s autonomy is paramount when it comes to medical interventions into the sexed body. No child should have their sex (e.g. genitals, hormones, reproductive organs) medically altered until they are old enough to fully understand what is involved and actively ask for such intervention. Conversely, once a child is old enough to fully understand what is involved in medical interventions into the sexed body, and requests such intervention, then it should be performed—whether the child is born intersex or not.

This is not yet mainstream medical practice, however. Today, one in every 150 infants faces medical intervention into the sexed body to which they cannot object or consent. Doctors routinely perform such “corrective procedures” on babies with genital “defects” and “malformations.” Meanwhile, few trans-identified children are supported in their identities by families and medical practitioners—and great controversy and resistance swirls around them when it does happen.

So let’s look at the arguments made by mainstream medicine and transphobic activists. How do they counter the cry for autonomy, given that self-determination and freedom are such central ideals in Western societies? What we’ll see is that they employ two opposing claims based in medical ethics: the duty to save a life, and the duty to first do no harm. If we want to protect the rights of trans and intersex children, we have to understand these arguments and be able to counter them.

When intersex advocates try to fight the framing of intersex children’s bodies as “defective” and somehow in need of surgical “correction,” mainstream medicine responds with a claim of medical necessity. In some very rare cases, particular intersex conditions can be associated with actual functional problems such as an imperforate anus, clearly a serious medical problem that necessitates surgery. But the vast majority of medical interventions into intersexed bodies take place without any such functional, physical problem exsting. They are responses to a social issue (discomfort with sex variance) rather than a physical one. What doctors do, however, is reframe social issues into medical ones. “If we don’t do this surgery, this child will be mocked and humiliated—“he” won’t be able to stand to pee, “she” won’t be able to have “normal sex,” “it” will never be able to marry. The child will be a social pariah and thus be at risk for suicide.”

Through this line of argument, altering the body of the sexvariant infant is cast as a noble act that doctors perform out of their duty to save lives. To counter this, what we need to do is point out that actual studies of intersex adults show that while we do have a heightened risk of depression and suicide, these are caused by unhappiness with our medical treatment rather than prevented by it. Loss of sexual sensation, feelings of having been humiliated by doctors, pain from years of “repair” surgery after “repair” surgery, and for those who do not identify with the binary sex to which we were assigned, the vast sense of betrayal that those who were supposed to care for us subjected us to a forced sex change—these are what lead to an increased risk of suicide. What would really help is would be for doctors to follow the precept of “first do no harm,” to perform no procedures upon us without our full informed consent, and meanwhile, to provide intersex children and their families with social support.

Invocations of “primum non nocere,” first do no harm, and of despicable medical impositions on the lives of innocents are also raised by anti-trans advocates. Transphobic activists generally frame all medical transition interventions as mutilations, and this rhetoric rises to fever pitch when the issue of trans children arises. Recently, anti-trans rhetoric has framed the medical provision of puberty-postponing drugs as “chemical castration” (e.g. in this blog post).

“Chemical castration” is an odd concept. First off, if you read any medical article on the topic, you will find it starting by pointing out that the term is a misnomer, as none of the medications used in “chemical castration” destroy the gonads. The term is nevertheless employed due its specific history as a treatment being given by court order to “sexual deviants” to suppress their ability to have sex, where some prior courts had employed actual surgical castration. Today, some jurisdictions use “chemical castration” in cases of pedophilia, but it the past it was a treatment imposed on men convicted of sodomy—that is, to gay men in an era in which gay male sex was criminalized. Transphobic activists use the term “chemical castration” to evoke an aura of adult sexual deviance, in a manner calculated to frame doctors who provide puberty-suppressant drugs as sexually abusing children.

There is a curious twist in this matter of “chemical castration,” in that universally when court-ordered in the past, and often still today, it did not consist of testosterone suppression drugs as you would expect. Instead, injections of estrogen and/or progesterone were (and are) given. In essence, it caused a forced sex change. Thus, for example, when codebreaking British war hero Alan Turing was convicted of homosexuality in 1952 and sentenced to “chemical castration,” he found the unwanted sex changes in his body so horrifying and humiliating that he committed suicide two years into “treatment.”

In the case of trans-identified kids today, the use of the term “chemical castration” is thus a double misnomer. Firstly, no child is castrated—instead, puberty is simply postponed so that if the child, family, and therapist all agree later that a medical transition is appropriate, unwanted secondary sexual characteristics will not have developed. Plenty of adolescents are “late bloomers” by nature; in fact, puberty today occurs many years earlier than it did through most of human history, when human diets lacked sufficient fats and nutrients to support early puberties. So postponing puberty carries no significant dangers. Further, the point of hormone suppression is not to cause a sex change, in contrast to court-ordered “chemical castration treatments.” The point is merely to buy time to ensure that the trans child in question fully understands zir gender identity and the implications of medical transition.

So: we’ve seen a lot of charged language, of claims and counterclaims regarding mutilation versus vital treatment, cruel withholding of medical assistance versus the imposition of sex changes on unconsenting children. How should trans and intersex advocates respond?

What I would do is to point out that strange and conflicting ideas about children’s autonomy and free will are presented by our opponents. When specialists in intersex “corrective” treatments speak to parents or write in medical journals, they urge that genital surgery be performed in infancy, before age two and a half if at all possible. They claim that this way the child will not remember the treatment and will thus adjust well to the altered genitals and/or sex status. (As if medical monitoring and intervention did not often extend throughout the child’s life, and the procedures left no scars and caused no loss of sensation, so the child would “never notice.”) The age of two and a half came out of now largely-discredited ideas of a milestone of “gender constancy” occurring then, based upon notions of the developing brain that directly relate to autonomy. Before age 2.5, it was basically argued, the baby is irrational and lacks agency, and thus thinks magically about bodily sex, including accepting the “crazy” idea that the sex of the body can change. So, in urging very early intervention into intersex bodies today, conventional medicine is urging the total avoidance of the child’s rational thought and agency.

When it comes to treating trans children, on the other hand, instead of rushing things, all sorts of actors want to draw them out. Most doctors and clinics only provide transition services to legal adults. Those few who treat trans children are extremely cautious about providing any medical interventions other than the postponing of puberty.

Both of these approaches deny children autonomy over their bodies and their lives.

What we must urge is that society consistently respect the rights of children. No children should ever be subjected to sexual surgery without their consent. No children should be forced to have cosmetic surgery. But as children mature, they become able to consent to medical treatment that they do actively desire.

How old is “old enough” to agree to medical interventions into the sexed body? That answer depends on the given child—but 2.5 is certainly too young, and 18 is in most cases too old. What I suggest is that when addressing a medical practitioner urging genital surgery on an intersex infant, that we ask, “Would you perform a sex change on a child of this age who was not intersex?” Conversely, when facing transphobic activists saying that no one who is not a legal adult can be old enough to consent to medical transition services, we should ask if our opponent would say the same if the child were intersex. For example, a child with congenital adrenal hyperplasia may be born with a penis externally, and a uterus and ovaries internally. At around age 12 or 13, if there has been no medical intervention, that child can begin to menstruate through the penis, develop breasts, etc. Would the opponent argue that the child could not be old enough to say that he identifies as male and wants to take testosterone (or that she identifies as female and has decided that she wishes to have surgery to feminize her genitalia)? Would the opponent argue an intersex pubescent child should not at least be able to take puberty-postponing medications to avoid unwanted penile menstruation if they and their family and support professionals were still unsure whether to commit to any more permanent intervention?

What we must ask is that society treat intersex and trans-identified children consistently. We all raise our children to learn to make good decisions, so that they can lead good lives. We must nurture children’s autonomy as they grow, understanding that there are some decisions only they can make for themselves. To force a person to live in a sex with which they do not identify is cruelty; to impose unwanted bodily alterations unconscionable. Wishing happiness for our children, we must nurture and then defer to their right to self-determination over interventions into the sexed body.

Tuesday, March 13, 2012

How Common is Intersex Status?

If you poke around the internet trying to find out how common it is for a person to be intersex, you may well wind up frustrated that nobody seems to have a precise figure to give you. You'll probably encounter some commonly-cited odds: 1 in 2000, or 1 in 2500. People have passed these figures around for a number of years, until, by repetition, they've come to seem generally accepted. I used to repeat these figures myself, before I learned more about how they were generated. Being born intersex is presented as rare; less common, say, than being born with Down's syndrome.

These estimates are off by more than a factor of 10.

A true, conservative estimate is that more than 1 in 150 people are born with intersex bodies. In this post, I'm going to explain why the true commonplace of intersexuality is so widely underestimated. And yes, I'll justify my 1 in 150 estimate by the end.

There are two main reasons reasons why nobody can give you an exact figure for how many people are intersex. The first is that there is nobody gathering this data. And the second is that in trying to come up with an estimate, people rely on medical diagnostic categories that purposefully deny that many people with sexually-intermediate bodies are “really intersex.”

Let's begin with the matter of gathering data on who is intersex. A central problem we run into is that nobody is funding a cross-condition population study of sex variance. This is the case in part, ironically, because being intersex is perceived as a rare thing. In addition, being intersex is framed as a “treatable medical condition.” Thus, there's little sense of intersexuality being an urgent matter to prompt government or private entities to fund a large exploratory study. But even if a large study of all physical sex variance were to be funded, you'd run into problems with people not wanting to disclose their bodily statuses. Some intersex conditions are obvious at birth when children have visible genital variance. But these children are immediately assigned a dyadic sex, male or female, on their birth certificates. The children and their parents are told by doctors that they must conceal the childrens' “defect.” With both the medical profession and our society at large treating intersex status as something freakish and shameful, people who are born visibly intersex are usually extremely closeted about their status, and don't want to be studied, outed, exposed. They are unlikely to want to take part in studies.

Furthermore, many people are intersex without it being genitally obvious. Some people are chromosomally sex-variant: they have a genotype such as XYY or XXY that is not associated with a significant disability, or they are XY women or XX men. Such people may never find out that they are intersex—after all, have you ever had your sex chromosomes screened? Other people have variant internal reproductive organs. I, for example, had an ovotestis, a gonad intermediate between an ovary and a testis. I'd been told I had a supernumerary ovary after pelvic exploratory surgery, and it was only years later, after I'd had my internal reproductive organs removed, that a pathologist informed me it was actually an ovotestis. What this illustrates is that in order to do a mass study of the frequency of intersexuality, you can't just rely on interviews and on existing medical records. One would have to do extensive medical testing, including biopsies, of all the people studied, which would be very invasive.

Even if you were somehow able to get a large, representative, random subpopulation of people to agree to be genitally examined, hormone-screened, genotyped, CAT-scanned, and to have their gonads biopsied, the frequency of intersexuality would be drastically underestimated. And that is because of the second problem I mentioned: that of medical diagnostic categories.

Let's think commonsensically and rationally for a moment.

What does it mean to be intersex? Logically, it means that a person has a body that is intermediate between the idealized male and female poles of the sex spectrum. All of us start out in the womb with an intersex form, having a phalloclitoris, labioscrotum, and ovotestes (you can read more about this in this post). It's expected that these should differentiate as we develop, but in fact one or more elements of the sexual anatomy may stay fully intermediate, or may differentiate only partially. Any person who has a body that is not fully sex-differentiated is, logically speaking, intersex.

But medical diagnostic categories are not logical, despite our ideology that they should be so. The majority of individuals born with intermediate sexual anatomies are not given an intersex diagnosis. I believe that what underlies this is gender ideology. And that gender ideology is this: masculinity is fragile, especially when it comes to what a man has in his pants. To live as a man with an inadequate penis is seen as intolerable. To have one's status as a “real man” challenged is viewed as psychologically crushing. Thus, doctors feel, if they were to categorize someone as intersex and then assign them male, they would be acting cruelly. Women, on the other hand, are perceived as more gender-flexible. After all, it's reasoned, a woman isn't shamed by wearing pants or taking on a power career. Viewing female-assigned people as more comfortable with androgyny and as better at dealing with emotional challenges, doctors believe that if they diagnose someone as intersex, they should assign them to the female category.

Thus, under current the current regime of medical diagnosis and treatment, the large majority of people labeled by doctors as intersex are assigned female at birth. People who are diagnosed under the rubric of “female pseudohermaphrodites" (a ridiculous term devised in the 19th century for intersex people with ovaries and intermediate genitalia or a phallus) are assigned female, and their phalli are surgically removed. People who are diagnosed under the rubric of “male pseudohermaphrodites,” with internal testes and genitals that are intermediate or vulvic, are also assigned female, and their testes removed.

Under this regime, most people—including academic gender scholars, doctors, and even a substantial number of intersex activists—believe that “almost all intersex people are assigned female at birth.”

You'll find this statement oft-repeated, but it's not true. At least as many babies with sex-variant bodies are assigned male at birth. It's just that the majority of them are not diagnosed as “true hermaphrodites” or “pseudohermaphrodites.” Many, for example, are characterized as “real boys” with a "urethral malformation." The diagnosis they receive is “hypospadias.”

Hypospadias occurs when a person develops testes, but the phalloclitoris is intermediate in form. People with hypospadias can fall anywhere on the sex spectrum from having fully intermediate genital configurations to having forms little different from what is considered typically male. (You can find illustrations midway down the page here.) In cases of what is termed “first degree hypospadias,” the person has close to idealized male anatomy, but the urethra opens on the underside of the penile glans. As the degree of hypospadias increases, the opening is lower on the phallic shaft, and is larger and more vulvic in form. In perineal hypospadias, there is a substantial vagina, the phalloclitoris is intermediate in structure, and the testes may be internal. And the bodily variance is not limited to the external genitalia. Hypospadias is associated with an enlarged prostatic utricle, which may vary from a slight enlargement with low degree hypospadias, to a full-sized uterus in high degree hypospadias.

Rationally speaking, people with hypospadias are intersex. They share with other intersex people not only sex-variant anatomy, but the common experience of imposed genital-normalizing surgery in childhood, and the unwanted consequences of loss of sensation, infections, scarring and fistulae. And while individuals with mild hypospadias appear to be almost as likely to identify with their assigned sex as individuals with typical phalli, those with advanced degrees of hypospadias are much more likely to suffer from gender dysphoria with their male assignment. For medicine not to acknowledge that hypospadias is an intersex condition seems not only nonsensical, but often cruel. It may be true that people born with hypospadias who identify as male don't want to be publicly labeled intersex, just as male-identified people don't often buy T-shirts that say “Ask me about my erectile dysfunction!” or “Just call me Cocktail Wiener.” But our cultural obsession with male-classified people having large erections and unquestionable male status should not dictate medical diagnostic categories.

Now, here comes the kicker.

According to the CDC, hypospadias occurs in the U.S. in one in 125 children labeled as “boys,” or 1 in 250 births. In other words, if we looked only at this one condition, the minimum rate of intersexuality is 1 in 250.

There are other intersex conditions that are not diagnosed as such, though they are medically treated in the same way as other intersex conditions. Consider “clitoromegaly” and “micropenis,” the diagnostic terms for people with a clitorophallus of intermediate size. A child born with clitoromegaly is assigned to the female category, and today in the U.S. is given “clitoral reduction” surgery in the same way that a child diagnosed as a “female pseudohermaphrodite” is altered. Children born with micropenis in the U.S. are classified as boys, and must often endure surgical and hormonal interventions (sometimes even what is officially termed infant sex reassignment to female status). Yet individuals with clitoromegaly and micropenis are often not diagnosed as “offically intersex.”

So let us just look at individuals born with genitally intermediate bodies who are assigned male at birth. Micropenis occurs in 0.6% of male-classified people, or 0.3% of the population. Hypospadias occurs in 0.8% of male-classified people, or 0.4% of the population. Just looking at these two conditions, 0.7% of the population is born sex-variant. In other words, translating to odds, 1 in 142 people has either hypospadias or micropenis. That's more than 1 in 150.

We now see what happens when we employ the rational rule of classifying anyone who is genitally, gonadally or chromosomally intermediate as intersex. We logically include people with hypospadias and micropenis in the intersex category instead of excluding all conditions in which infants are assigned male. Now, for the sake of argument, let's just accept at face value the assertion that all other intersex statuses are so rare that the chances of having any other variation in gonads, genitals or chromosomes is 1 in 2500. I consider this extremely unlikely, but we'll just go with it. In fact, for the sake of our argument let's accept the ridiculous assertion a medical student once made to me: that there have only been 7 “real hermaphrodites” ever encountered in all of recorded medical history. By this logic, the chance of having any other intersex variation is 1 in a billion, or to simplify, basically 0. But we're still left with a minimum of 1 in 142 individuals having an intersex body.

That puts being intersex about on par with the likelihood of having green eyes.

Personally, I believe the rate is much higher. I do think it's unlikely we'll ever come up with an unquestionable exact number of intersex people, even if we get study funding and widespread permission from study populations, and even if medical diagnostic categories cease to be so irrational. Sex is a spectrum, and any way we slice up a spectrum is arbitrary and open to debate. (I remember my mother and grandmother perpetually arguing over whether the color turquoise was “really blue” or “really green,” and one could have similar endless arguments over the point at which an intermediate phalloclitoris is sufficently large-headed to “count” as a penis or sufficiently small-headed to “count” as a clitoris.) But at a very conservative minimum, more than 1 in 150 people have sexually intermediate bodies.

So the next time someone tells you that intersexuality is extremely rare, tell them otherwise. The next time you see a book about pregnancy that talks about uncommon complications and rare infant differences but never mentions how often babies are born intersex, raise a fuss. If you hear the old saw that “all intersex people are assigned female at birth,” clear up that misunderstanding. Be aware and help make others aware that the problems facing intersex people are not sad rarities, but burdens faced by many (over 2 million in the U.S. alone). And if you yourself are intersex and living a life in closeted shame, I urge you to stop believing you must live your life isolated and alone. You have a lot of siblings out there.