Wednesday, January 2, 2013
Just-So Stories about Hermaphrodite Fish
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.
Saturday, August 22, 2009
Caster Semenya - An Intersex Perspective
The basic outline of Caster's situation, as best as I can understand it through news reporting which is mediocre at its best, is that she was born intersex, assigned female sans surgery based on her predominant genital appearance, and raised as a girl. However, like lots of us whose genitals are visibly intermediate, she grew up knowing she was not a typical female, which liberated her from gender conventions. She was a classic tomboy, refusing to wear dresses and competing with boys in sports. From what I can gather from the news, Caster did not, however, question her female sex assignment, only gender role limitations. An excellent athlete, chances are that she was defined by her physical abilities, as are many tomboy athlete girls with typical female anatomy. When she began to compete in major sporting events, her status as a woman was questioned, and Athletics South Africa "cleared her," declaring her female. Now that she has proven her remarkable running ability on an international stage, her international competitors want her disqualified for "cheating" by not "really" being a woman. The International Association of Athletics Federations has stepped in and is investigating her status, in what most news sources are oddly calling "gender testing." Generally, the news media assume that they will be able to issue a definitive answer on what her "true" (dyadic) sex is.
The main thing that saddens me about this story is the emotional tone of the commentaries. Other athletes, people on the street, and low media blogs are full of sneers and winks and nosewrinkled disgust. The major media bring in scientists and voice patronizing sympathy for how humiliating this must be for Caster, meanwhile capitalizing on the prurient interest in the story to gather viewer attention. Underneath it all is a widespread impulse to yank down Caster's pants and let everyone have a good look. It's a freakshow, with an intersex person the object of millions of prying eyes.
Some basic themes that will be familiar to anyone intersex arise over and over in the news coverage. There's ignorance of the very existence of intersex people, evinced in frequent speculation by laypeople that Caster must have had a sex change or engaged in doping. There's confusion of physical sex with gender identity, with detractors, including some of Caster's competitors, referring to her with male pronouns and speaking disparagingly of her butch appearance. There's racist scientific hubris, with Western sports scientists asserting that they can determine Caster's "true" dyadic sex after doing an exhaustive investigation of her chromosomes, hormone levels, anatomy, gonadal tissue, and psychology, while speaking derisively of the ASA's investigation as being unsophisticated. And most of all, there's the overwhelming belief in the myth of dyadic sex. Caster must be female or male; intersex cannot exist as a sex category.
One depressing sideline of this insistence that Caster must have a definitive dyadic sex is the regularity with which the term "pseudohermaphrodite" is raised by detractors. I've posted on how this term emerged in Western medical science to try to define away the existence of intersexuality ( see here.) Basically, in trying to erase the challenge intersex people place to the medical ideology of sex dyadism, doctors in the 20th century decided to call all intersex individuals who did not have ovotestes as their gonads "pseudohermaphrodites," no matter what their anatomy or experience. Somebody can be raised female, with average-looking genitalia and secondary sexual characteristics such as breasts, living a typical valorized heterosexual life, femme as can be (housewife, reader of romance novels, cookie-baker), yet all unaware, have internal testes and androgen insensitivity syndrome. If she goes to a doctor for treatment of infertility, suddenly she'll find herself labeled a "male pseudohermaphrodite." The medical term defines her as "really a man," not even intersex, let alone a woman. Anyone with testes is "really a man" according to this scheme of classification--which reveals the sex politics and semantics in supposedly "objective" science.
Those same politics emerge from the mouths of Caster's detractors. She is a "pseudohermaphrodite," they claim--not a woman, not even intersex, but a man trying to cheat honest female competitors.
Here's an irony for you. According to Western medical practice, the majority of infants discovered to be intersex are assigned female. This is done for surgical convenience (it being considered easier to remove an "inappropriate" penis than create an "appropriate" one), and due to a covert assumption about gender psychology, that women can deal better with gender ambiguity than can men. So we're assigned female, told we are "really women," subjected to mutilating infant surgery, expected to identify as female, not intersex, told to keep our medical history, if we know it, a secret, and sent out to live dyadic female lives. Many of us carefully live by the rules. But it turns out that if we do as we are told, we are still subject to being outed, discredited, mocked, and returned unceremoniously to the status of intersex oddity, as Caster's life illustrates--accused of breaking the rules.
What Caster's situation illustrates, from an intersex perspective, is that we exist. Dyadic sex is a myth--sex is a spectrum. Hormones, chromosomes, genitals, gonads--they are all arranged in many complex ways, and imposing a binary onto them is arbitrary. It's as arbitrary as saying all fruit is either sweet or sour. Sure, ripe cherries are sweet and ripe limes are sour, but most fruit gets its savor from both tastes, and some fruits balance at the tangy sweet-and-sour midpoint. You can measure all the fructose and ascorbic acid you want, scientifically. You can create a rule that divides all fruit into sweet and sour categories using precise measurements of sugars and acids. But that will not eliminate the fact that the experience of tasting fruit is complex, and that this complexity is what makes eating fruit delicious.
Given that sex is a spectrum, and that some of us live near its center, being obviously intersex, society needs to deal with us in better ways than by denying our existence, hiding us medically, and then reasserting our existence to disqualify us from participating in sports. And let us acknowledge that this disqualification is based on the insulting assumption that "real women" are categorically inferior to "real men."
Really, what Caster's case makes us consider is the strange fact that athletics are divided along dyadic sex lines. Sensibly, if one is looking at any particular sport, advantages exist according to physical distinctions--tall, long-legged people do better as hurdlers, for example. But millions of female-assigned people are taller and have longer legs than a typical male-assigned person, so why is gender and not leg-length used to create categories of competitors? There are significant differences in average height by race/ethnicity--would you therefore suggest that we divide people by race for sports competition? That would be no less arbitrary than dividing competitors by gender, though today it would be much more controversial. A much more sensible approach would be to create competitor classes by relevant physical category--as weightlifters are divided into weight classes. Then the question of "true" dyadic sex would be as irrelevant as the question of "true race" for athletic competitors.
My heart goes out to Caster Semenya, an intersex sibling caught in an impossible position--required to live in a dyadic gender, and then accused of wrongdoing because the assignment suits poorly.
Tuesday, June 16, 2009
We've Always Been Here
I exist.When is the last time somebody told you that there is not such thing. . . as you?
OK, perhaps that's not an experience you've had, but I encounter it periodically. This morning I had a frustrating experience with a person who insisted that intersexuality is a myth. He was certain that sex dyadism was an unassailable natural fact--that people and animals come in two flavors, male and female. In his mind, hermaphrodites and centaurs and dragons were equally mythic creatures, and equally likely to be waiting in line at the store with him.
Really, what this guy objected to was my appearance, which is androgynously masculine. He wanted me to "make up my mind." Basically, he objected to genderqueering on the grounds that gender identities must be dyadic because bodies are sexually dyadic. When I pointed out that I am actually intersex, he dismissed me as making a deluded, faddish assertion. He compared me to a furry, and dissed me and furries together as crazy folk possessed by a trendy madness. He told me to "grow up."
How would you respond to that? Am I expected to walk around with an MRI in my pocket? I've already posted how people don't get to do a pants check on me.
I choose to respond less personally, with empirical data, scientific and historical. Though in truth, when people are religiously attached to a belief in sex dyadism, all the empirical evidence in the world may fail to convince them to let go of their dogma. That was the case in my conversation this morning. Still, others may listen, so I share some data you can use should you find yourself in a position like the one I was in today.
The Divine Androgyne
Many--perhaps most--world religions incorporate divine androgyny. This reflects the presence of intersexuality in the collective unconsciousness. Angels in Judeo-Christian tradition are neither male nor female. In Greek mythology, the child of Hermes (the jock god) and Aphrodite (prom queen goddess of love) was Hermaphrodite, as seen in the image attached to this post. The ancient Egyptian god/dess of the Nile was Hapi, whose breasts and phallus were depicted as constantly flowing with fertility, like the Nile itself.
Some intersex advocates are uncomfortable discussing intersex deities in the world pantheon, because they feel it links us with fantasy. But mythos is based in fact--sometimes psychological, and sometimes material. It can be very useful. Psychologically, it can give us validation, and materially, it gives us clues to the historical past. After all, Homer's city of Troy was considered mythic until archeologist Heinrich Schliemann took the Illiad seriously and located and excavated Troy's ruins.
What the myths of the world show us is that intersexuality did not signify barren disorder, as it does to Western doctors today. It signified perfection (for the Judeo-Christian), beauty (for the Greeks), creation (for the Egyptians).
Cultural Traditions
More important from the empirical position of "proof" of our eternal presence are the cultural traditions that societies have all over the world for giving social roles to the intersex. For example, I'm Jewish. Jewish religious practice is traditionally highly sexed and gendered--males are circumcised on the 8th day of life, females must immerse in a mikvah after completing a menstrual cycle. What then of intersex children? The gemara instructs that intersex children (and animals) are given two additional gender titles, androgyne and tumtum. A Jewish child whose genitalia include both a clitorophallus and an invagination is an androgyne, and must follow all of the rules applying to males and females. A child without significant external genitalia is tumtum and is exempted from all gendered rules.
Intersex people have been born into all cultures throughout history, so there are many traditions for giving them a place in society. As intersexuality has been erased by modern medicine, the meaning of these traditions has often shifted or been forgotten. For example, Native American traditions for giving a socially valuable place to the two-spirited are now typically understood as relating to lesbian, gay, or transgendered individuals, while the home they gave to intersex children is largely forgotton. The Hawai'ian role of mahu is another example. Today, the word "mahu" is often assumed to mean crossdresser, and has taken on a derogatory edge, like "fag." But in Hawai'ian tradition, intersex children were deemed mahu, and it was an important social role. Individuals who were mahu memorized oral traditions, were instructors of the revered hula, and were consulted when infants were named.
Scientific Evidence
It seems ridiculous to present scientific evidence that intersex conditions exist--rather like gathering scientific evidence that some people are born with red hair, or that animals of all sorts have albino offspring at times. But for convincing those who demand such evidence, some facts.
Intersexuality is common in pigs. The people of Vanuatu revered intersex pigs, and carved their likeness, genitalia and all, onto statuary and bowls. British farming tradition was less appreciative. Intersex livestock were called freemartins, and in some localities killed at birth. In the U.S., where the most revered animals are our domestic pets, intersex is studied by veterinarians in cats and dogs. Intersex conditions have been studied by scientsts in goats, in primates, in mice, in horses, in smallmouth bass . . . in fact, just about any animal you can name.
The Moral of the Story
Intersex happens. It always has happened; it's hardly some new discovery or "fad." In fact, the fad in the historical story is the recent medical erasure of intersex people, our surgical alteration, and the attachment of shame to our bodies. We've been made so invisible that most people in Western nations aren't even aware we exist, and can voice the myth that we are mythic right to our faces. Let's hope that this fad passes soon.
Monday, May 25, 2009
Viewing Intersex Genitalia (Note: Explicit Artwork Included)
DisclaimerThis is a drawing I did of the genitals of an intersexed person. If you don't wish to see explicit material, please skip this post. If you are an intersex person or an ally of ours who is concerned that posting images of intersex people's genitalia is abusive, please read my previous post. I discuss at length the many ways that photographs of us are exploited by medical practitioners and others, and why I believe humane images are necessary. Thanks.
Does a Picture Paint a Thousand Words?
When you look at the drawing above, what do you see? I see a set of external genitalia, an intersexed set that falls pretty near the center of the spectrum of male-to-female genital arrangements. Most people in our particular culture and historical moment apparently see something else. They see. . . something wrong. They want to know what it means. They want to be told whether these bits belong to someone who is "really a man" or "really a woman." And the authority they turn to to answer this (impossible) question is not the person possessing the genitals, nor regious authority, nor social scientists, but the medical profession.
Doctors get a lot of prestige from being the people who get to interpret life's mysteries for the masses. And they have an answer. I'll tell you what that answer is in a little while, but first, before what you see gets filtered through the medical lens, let me describe the structures you see depicted.
Anatomy of an Intersex Person
There are a great number of intersex bodily configurations, both internal and external. Our genitals come in many shapes and sizes--as in fact do those of people who are not categorized as intersex. What you see in this set of intermediate genitalia includes a phalloclitoris of intermediate size. Apparently many people experience something similar to a foreground-background illusion looking at the phalloclitoris (you know, like the illusion that looks either like two faces or a vase, which you can see here). They see a little penis, then a big clitoris, then a little penis. This flickering view has nothing to do with the genitals themselves, but with the lens of dyadic sex we've been trained to expect. This illustrates how we don't just see the world-in-itself out there, but a filtered view that imposes cultural understandings onto what we see.
The shaft and glans of this individual's phalloclitoris are mostly covered by a sheath of sensitive skin that we learn to call a clitoral hood or penile foreskin--again, dyadic terminology. The sheath of skin is bound down on either side, and the underside of the phalloclitoris is attached to the individual's body. Thus, when this person's phalloclitoris erects, it does not stand out from hir body but stays tucked close, pointing rearwards, as is typical for a clitoris.
At the center of this person's genitalia you see an invagination. It is fairly shallow, unlike the deeper vagina of someone with a classic female genital configuration. It is lined with delicate, lubricating skin. The urethral meatus ("pee hole") is in the central slit of the invagination.
Around the shallow invagination you see structures which are intermediate between labia majora (in female anatomic terms) or scrotum (in male terms). In this individual, there are testes that have descended and are held within the labioscrotum.
What Doctors See
As I've explained in an earlier post (here), doctors are the enforcers of sexual dyadism, and see all people as having a "true" or "best" sex, either male or female. Most often they like to assign intersex people to be female, and they remove or "reduce" our phalloclitori. They believe, though they tend not to say this, that it's better to be a female-assigned person with a surgically-constructed clitoris that feels nothing than to be a male-assigned person with a small penis. What they say, I kid you not, is that "it's easier to make a hole than a pole."
Doctors still take the "hard route" and attempt to construct a penis at times, and it's in individuals like the one whose genitals I've drawn here that they are most likely to do it: those with external testes. Internal ones they generally remove, claiming they pose a risk for cancer, but external ones they tend to leave in place. Finding external testes, doctors proclaim an intersex person to be "really male." Therefore, doctors looking at these genitals don't see a person of intermediate sex, they see a male with a "disorder of sex development" that they would term "perineal hypospadias with chordee."
On Hypospadias
As I've said, genitals exist on a spectrum. People with hypospadias run along the spectrum from maleformed genitals to the smack-dab center illustrated in this post. In people with what doctors call "first degree hypospadias," the genitals include typical testicles and a penile form that varies from the average male's only by having the urethra open, not at the center of the head of the penis, but on the underside of the head. Generally, the further down the shaft or perineum that the urethra opens, the more intermediate the genital form (doctors would say "the more severe the malformation").
Doctors almost always propose surgery for infants with hypospadias, even when there is only a small shift of the urethral opening. This causes scarring and loss of sensation, perhaps very mild, or perhaps leading to full numbness of the penile head and underside of the shaft. Constricted areas, holes that leak urine ("fistulas"), and recurrent bladder infections are common side effects, but are all deemed by doctors to be outweighed by the benefit of surgery. That benefit is basically avoiding the social mockery doctors presume is unavoidable for people with atypical genitals--the "locker room factor." Many male-identified people who had childhood surgery for minor hypospadias are very critical of the decision that was made for them, and, like intersex advocates, argue that no genital surgery should be performed unless and until a person grows up and chooses it. They'd rather have a penis with an off-center urethral opening that is fully sensate than a numbed phallus with an on-center urethra.
For people with perineal hypospadias, the consequences of surgery are more severe. Instead of having the functional genitals with which they were born--atypical but sensate intersex genitals that lubricate, erect, and experience pleasure--they wind up with small surgically-constructed penises that may be severely scarred and mostly numb. Instead of simply sitting down to pee, they may deal with multiple fistulas, a stuttering urine stream, and frequent bladder infections. In individuals with chordee, as in the drawing, since the clitorophallus is joined with the body, part of the glans and/or shaft will be cut off, left buried in the perineum or excised completely. Often there are multiple repair surgeries over the course of childhood--which is a source of stigma, not a shield from it. And significant numbers of these individuals grow up not identifying with the male assignment they were given, and in deep distress over the loss of genital forms they wish they had been permitted to retain.
The Moral of The Post
If people could look at intersex genitals and actually see them for what they are, a great deal of pain and suffering would be avoided. What you see in the image is an intermediate genital form, not warped female genitals or disordered male ones. When a child with intermediate genitals grows up, zie may identify as female, or male, or intersex, and should be allowed to decide what surgery if any is appropriate--but few get that chance. Wrong decisions are made for us all the time, and this happens in large part because our families have never seen genitals like ours before. They don't know how to interpret what they see because they have no context. So they turn to the doctors, who get a lot of prestige (and money) out of diagnosing us, selecting a dyadic sex for us, and surgically altering us without our consent. And not knowing anything about intersexuality, families go along. It's for this reason that I think it's so important that people see images of the full genital spectrum.
Artwork by Luminis, marker on paper, digitally manipulated. Copyright retained.
Wednesday, May 20, 2009
The Intersex Peep Show
No, You Can't Look in My PantsSince I started coming out publicly as intersex, I've been asked by some people I've barely or never met to show them a photo of exactly what I keep between my legs. This is a very odd question--consider how you'd react if you received this request from some stranger. It can be disconcerting and creepy to realize that someone you don't know is thinking about your genitalia, requesting a photograph.
So no, I don't spread my legs for strangers. And motivation doesn't matter much to me in answering requests. Some people ask because they're kinksters. Don't get me wrong--I support everyone's right to their consensual kink--but I have not consented, and they don't get to play. Other people ask because of simple intellectual curiosity, and I support intellectual curiosity too. But I am not a specimen any more than I am a porno spread. I'm a person, entitled to my dignity.
Recently somebody contacted me wanting me to describe my genitals and my surgical history so zie could feel confident I was really intersex and not some poser. And while I empathize with intersex people feeling used or misrepresented, the answer remains no, you don't get to look in my pants to perform your gatekeeping.
But How Can We Not Discuss Intersex People's Genitalia?
This is an entirely different question than asking to see my. . . jonk. You're right, it seems odd to discuss intersex status without discussing genitals. I do want to point out that we discuss male experience, female experience, and the experiences of androgynes and genderqueer folk all the time without discussing their genitals. We don't ask to verify what they've got down there before discussing their gendered lives. And what defines intersex experience isn't genitalia but the social reaction to our bits--the way our very existence seems to create a crisis for medical professionals, families, and ordinary folk. There's no need to discuss our genitalia to address that social reaction.
But. I do think we should, as a society, discuss genitalia. How they come in a wide variety of configurations, a spectrum not a binary. We need to be aware of variation, not just in the genitalia of those of us labelled intersex, but those considered unproblematically male or female. Lots of nonintersex people feel anxiety about whether their genitals are "normal," or too small, or too loose, or too asymmetrical. We should know what genitals really look like. And a picture does paint a thousand words.
What's Wrong with Pictures of Genitals
The photos and illustrations of genitals most people see are highly problematic. They do injury both to the viewer and the person being viewed. Mostly, we're exposed to two sorts of pictures: either pornographic images, or medical ones.
I'm strongly opposed to censorship, and I stand up for the right of people to produce and view porn, but most of it is terrible. I'll mention two of the reasons why: first, most porn does harm to the viewer by showing a single "idealized" vision of the human body, and secondly, it harms the models (especially the female-assigned ones) because they are viewed by our sexnegative society as whores and perverts. From an intersex position, the representations of "us" as "hermaphrodites" in most porn are actually usually photos of nonintersex male-to-female trans people financing their transitions by filling the demand for images of "chicks with dicks." In a world where sex transitions are both costly and not covered by medical insurance, and where trans people suffer profoundly from employment discrimination, I empathize with the "herm" porn models. But the fetish market that they feed gives people a very skewed perspective on the lives of intersex and trans folks, and this peep show teaches people very little about what intersex people's parts look like.
Then there are clinical medical images, of two varieties. One are the sort of illustrations we see in educational contexts. For example, buy a package of tampons or condoms, and you'll find instructional illustrations included. Intersex genitals are never pictured, but really, few people's genitals look like the images you see. The illustrations in the tampon packages are almost always hairless with tiny symmetrical labia minora--they look prepubescent, and prepubescent people don't get menstrual periods. The penises in the condom illustrations are all circumcized, erect at a high angle, and look more like a hot dog than a human. Clinical educational illustrations seem designed to make ordinary people feel anxious about their genitals, their small penises and large clitori, their veins and moles and asymmetries and hair.
Still, at least nonintersex people see illustrations that somewhat approximate their bits.
If you want to see what intersex people's genitals look like, you have to turn to another sort of medical image: the clinical photograph. And the photographs range from depressing to truly appalling. Generally they're photos of children, taken without their consent. Sometimes you can see that the child is being held down. Orifices are stretched open by adult hands, foreskins are pulled up in the jaws of forceps, and ruler scales cut into delicate skin. The photographs are utterly dehumanizing--people reduced to "disordered" genitals and treated as specimens, with as much consideration as a doctor would show a biopsied sample of a tumor. It's as much horror show as peep show. Intersex children are treated as freaks, forced to spread their legs, and hurt without their consent--and because it's done in the name of Science, it's supposed to be OK.
It's not OK.
My Complicity, My Shame
The lack of education about intersex genitals is harmful in multiple ways, and one of them is that it makes us into peepers, and collaborators in the abusive treatment of intersex children.
I grew up knowing I was genitally different, but unsure of what it might mean. By my early teens I was looking through medical journals for pictures that might tell me more. I'll post sometime on my academic research on teratology, the branch of medicine that deals with "birth defects"--suffice it to say for now that I've looked at a lot of medical images of intersex people. And I can try to justify it in terms of personal need and academic critique, but in the end, I'm complicit. Not that I've ever sent a stranger an email saying "Can you send me a photo of your privates?" But I've contributed to maintaining the market for exploitative and abusive medical photography of intersex people.
What Can Be Done?
It seems to me that there is a real need for a collection of cruelty-free, nondistorted images of intersex people's bodies, including our genitals, for people to view. I imagine that illustrations would be best. There may be people out there with various intersex conditions or "DSDs" who would be willing to be photographed by a respectful ally for a public image gallery, but I suspect most people, like myself, would be very wary of the idea. Drawings would avoid the issues of shaming or disrespectful use of our bodies. Ideally, they would be nonidealized. They could be warm rather than clinical, human rather than dehumanized.
I'm going to try my hand at it. I'll see if posting a drawing turns my blog from the intersex roadshow to the intersex peepshow--I certainly hope not. But it does seem like an important project to me.
The image in this post is a manipulation by me of a photograph provided under a Creative Commons license by just.Luc here.
Thursday, May 14, 2009
On Being Called a "True Hermaphrodite"
The Reality of Intersexuality
The reason people with ovotestes were termed "true hermaphrodites" by doctors was explicitly to categorize all other intersex people as not "truly" intersexed. Most intersex people were medically deemed to be "pseudohermaphrodites." This was based on an fundamental (and, to my mind, fundamentally evil) impulse to erase our existance.
The medical "logic" basically went like this: nature makes things male and female. Laypeople might doubt this when they see a person with intermediate genitals, but doctors know better. With Science they can tell the "true sex" of these people, and eliminate the challenge to sex dyadism.
It's a strange exercise, looking at people whose bodies are neither male nor female, and deciding you can tell what they "really are." Let's say you're looking at someone who has breasts, a menstrual period, and a penis. What are they "really"? You can come up with a rule and apply it, but that rule will be arbitrary. It's just like looking at the color purple and saying, "Purple is not a real color, so this must be either blue or red. I have a Scientific Rule I can apply to determine whether this is blue or red." Sure, you could create a rule, and apply it consistently, but that does not eliminate the fact that purple exists as a color people experience.
This belief that intersex people "really didn't exist" when they were standing right there was like some oddly theoretical genocide. At the time that the terms "male pseudohermaphrodite" and "female pseudohermaphrodite" were coined, sex assignment surgery had yet to be developed, so it was a purely verbal move to erase us.
Harmful Practices
Today, sex assignment surgery does exist. And the persistance of a medical belief that doctors can run tests on an intersex baby and determine hir "real sex" has harmful effects. Children are subjected to profoundly lifealtering surgeries without their consent. Imagine if someone cut your penis off without your consent, or removed your ovaries and chance for fertility. . . and when you cried, "What did you do to me!?" they said, "Oh, our tests showed you didn't need those."
Intersex advocates of every stripe are vehemently opposed to infant sex assignment surgery. They say, we say, that no surgery should be performed until a child grows up and can say what surgery (if any) zie wants. The foundational principle should be an individual's gender identity. A baby with CAH can have a penis, ovaries and uterus. If that baby grows up and identifies as a boy, then he may choose to have his uterus and ovaries removed. If the baby grows up and identifies as a girl, she may choose to have sex assignment surgery to change her penis into a clitoris.
Or how about this? The child could grow up with a gender identity that matches hir body. Zie could say, "I'm not 'really a boy' or 'really a girl,' I'm really intersex, and I don't want any surgery. My body is fine, lovely, just how it is, thanks."
As it now stands, that option isn't on the medical table. Doctors are still assuming that all of us must have a true sex, or "best sex" in the terms of the day, and that they are heros because they can fix us.
The Term "True Hermphrodite"
I hate the term "true hermphrodite" for two reasons. One, it deems most intersex people "false," not really intersex, which both leads to harmful practices and undermines people's ability to identify with their bodies as intersex. And secondly, it gives me some sort of privilege I don't want. I'm deemed the "real intersex," I'm "true." I certainly don't see myself as "more intersexed" than other intersex people, and I don't want to be seen as special or better.
The reason I'm termed a "true hermaphrodite" is because the arbitrary rule that doctors came up with when they developed the terms "true hermaphrodite," "male pseudohermaphrodite" and "female pseudohermphrodite" was that true sex was determined by gonads. A person with testes is "really" male, even if she has breasts, labia, clitoris, and vagina, even if she was raised female, wears dresses, identifies as a heterosexual female, and is married to a man. A person with with ovaries is "really" female, even if he has a penis, scrotum, and just won the Mr. Olympus bodybuilding contest. Only people with one ovary and one testis, or intermediate gonads, ovotestes, are "really" intersex. This rule is arbitrary and says nothing about our lived experience.
So I hate the "true" and "pseudo" terms for classifying intersex people. On the other hand, I, personally, don't object to being called a "hermaphrodite." I realize this is a very atypical position among intersex people. Most intersex people who are politically aware hate being called hermaphrodites because of the baggage the term carries. It evokes greek mythology, and we're not creatures of myth. It is used a lot by fetishists, who get off on the idea of having sex with a body that has breasts and a penis, and we're not volunteering to be sex objects for every kinkster out there. I agree that this baggage is a real problem. But I myself don't blame the term. I like that it shows how we've been around forever, and that in some societies, we've been considered specially blessed by the gods, rather than freaks.
In any case, I don't identify with the term "true hermaphrodite," and always put it in quotes. I'm intersexed.
