The annual Parents, Families and Friends of Lesbians and Gays conference, held in Columbus last weekend, included a workshop titled “Why Should PFLAG Care About Intersex?” That’s probably a good question for the group to consider, and it’s certainly an important one for the intersex community.
But for the rest of us, a better question might be, “Just What the Hell Is Intersex?”
According to the Intersex Society of North America, intersexuality refers to an anomaly in the reproductive and sexual system or, in non-jargon, someone born with sex chromosomes, genitalia or an internal reproductive system that are neither clearly male nor clearly female.
Janet Green, executive director for New Jersey-based support group Bodies Like Ours, explains that intersex refers to someone with atypical genitals, like an enlarged clitoris or a “micropenis.” It can also refer to someone who has one ovary and one testicle, or someone whose chromosomes are, say, XXYX instead of XX or XY.
Green, who was in town for the conference, estimates that one in 2,000 people is born intersexed, though ISNA points out that it’s impossible to collect accurate statistics, considering the shame and secrecy often involved when a doctor notices an intersexed infant.
The emerging intersex movement is still rather small, and the word has yet to break into the national vernacular, but groups like ISNA and the recently founded Bodies Like Ours are working to change that. And if they can piggyback their cause onto those of groups with similar goals, like PFLAG, all the better.
Bodies Like Ours is focusing much of its attention on public education and awareness as well as community building. There are a variety of reasons why a child might be born intersexed, but the simple fact is that they are born that way, which is something parents, the medical community and intersexed people themselves need to understand.
“Children are born different,” Green said. “Some have big noses, some have blonde hair.” And some have micropenises or a mosaic of sex chromosomes.
The intersex movement’s major focus thus far has been on the medical community. The American Medical Association’s protocol for dealing with intersex conditions was developed in the ’50s, Green said, and all too often involves doctors and/or parents “deciding” whether the child should be male or female, and then performing what’s essentially non-consensual cosmetic surgery. (For example, if an intersexed child is born with an enlarged clitoris, her parents may decide to make her female, cutting it to a more “standard” size.)
Green understands it can’t be easy to be in that position. “Imagine you’re a parent and someone tells you we don’t know if your baby is a boy or a girl,” Green said. “It’s hard to think of your child as being a sexual being when you’re holding a seven-pound baby.”
But it is a sexual being, or at least one day will be. And doctors should now know that gender identity and sexuality have as much to do with the wiring in someone’s head and the chemicals pumping through their bodies as it does with what’s in their underwear.
So why should PFLAG and, by extension, the GLBT community care about intersex?
Green explains that there’s often an overlap between intersexed people and homosexuals, and certainly there’s an overlap between transgendered people and the intersexed, as some choose to transition to another gender (or, in the case of those who had their sex decided for them as infants, transition back to what they were born as but doctors muddled with).
Apparently PFLAG agrees. The group’s national board of directors issued a policy statement on Friday welcoming the intersexed and their families to be full members, encouraging the end of the shame and secrecy of intersexuality, and encouraging the end of unnecessary genital mutilation.
Is the next step the GLBT community becoming the GLBTI community? Maybe, but for now the intersex community would probably settle for understanding from others and the AMA adopting a new protocol to better address the treatment of intersexed newborns.
“This is like dominoes,” Green said of the struggle for recognition. “First it was the blacks, and then women, and now gays and lesbians. And intersex will be kind of the next domino.”
—J. Caleb Mozzocco
October 3, 2002
Copyright © 2002 Columbus Alive, Inc. All rights reserved.
When an issue that affects our gay, lesbian and bisexual loved ones comes to the forefront of our society's consciousness, the Board of Directors of PFLAG often has or develops a Policy Statement on that topic.
At least one in 2000 children is born with notably atypical sexual anatomy, i.e., an intersex condition. In our culture, sexual variation which blurs the line between male and female is stigmatized. The presence of a genital anomaly often elicits feelings of guilt and shame.
PFLAG supports efforts to end the secrecy and the medically unnecessary genital surgery experienced by some intersex persons. PFLAG welcomes the efforts of medical organizations, support groups, and others, working toward this end. PFLAG urges the entire medical community to establish and adopt a patient-centered treatment protocol under which patients are treated with the utmost sensitivity. Full and accurate information should be disclosed to parents of newborn intersex children, and appropriate referrals, including to support groups of adult intersex people, should be provided.
PFLAG encourages its
members to be sensitive to the needs of intersex persons and their families as
they address societal issues and biases which contribute to their shame, guilt,
PFLAG welcomes intersex persons and their families as fully participating members.
Adopted by the PFLAG Board of Directors on September 27, 2002
One out of every two thousand births presents parents with a sudden gender dilemma. A tradition of secrecy means most parents are totally unprepared.
by Alice D. Dreger,
Associate Professor of Science and Technology Studies, Michigan State University
Chair of the Board of Directors, Intersex Society of North America
There was a time not so long ago when parents couldn't answer the question "Boy or girl?" until a child was born. But nowadays, most people expect parents to be able to answer that question well before birth. That makes things even more awkward for parents whose children have an intersex condition.
When a child is born with an intersex condition, even though the doctors and parents may have thought they knew what sex the child was from prenatal sonograms, the sex of the child may be unclear. There may be several days of tests before doctors and parents decide what gender to assign such a child.
"Intersex" is a general term used for any form of congenital (inborn) mixed sex anatomy. This doesn't mean that a person with an intersex condition has all the parts of a female and all the parts of a male; that is physiologically impossible. What it does mean is that a person with an intersex condition has some parts usually associated with males and some parts usually associated with females, or that she or he has some parts that appear ambiguous (like a phallus that looks somewhere between a penis and a clitoris, or a divided scrotum that looks more like labia). It's important to understand that intersex doesn't always involve "ambiguous" or blended external sex anatomy. Sometimes a child or adult who is intersexed can look quite unambiguous sexually, although internally their sex anatomy is mixed. This happens, for example, with complete androgen insensitivity syndrome, where a person has some male parts (including a Y chromosome and testes) internally, but is quite clearly feminine on the outside. It's important to also be clear that intersex is different from transgender in that a person with intersex is born with mixed sex anatomy, where as a person who is transgendered is a person who feels himself or herself to be a gender different than the one he or she was assigned at birth. Some people who are transgendered were born intersexed, but most were born with "standard" male or female anatomy.
When a baby or child is recognized to have an intersex condition, it can be quite traumatic for the parents. Parents want their children to have happy, "normal" lives, and they worry that a child with intersex cannot do so. All parents imagine their children's futures, and parents of children with intersex conditions can have a very hard time doing that; they're not sure whether to imagine that child will marry, whether the child will give them grandchildren. As a consequence, the parents' identities also become confused and uncomfortable.
This is why people like me who advocate for the rights of people born with intersex conditions also actively advocate for the rights of their parents. Too often, because some well-intentioned medical professionals dealing with intersex hope to provide a "quick fix," parents' persistent confusion and distress is not adequately addressed. Yet parents in such situations obviously deserve the best care available, including professional psychological and social services. They also deserve help finding other parents who have been through the same thing. Parents I've talked with tell me that being able to talk with another parent immediately reduced the amount of stress and confusion they felt, and enabled them to focus on the joy of having a beautiful (and often perfectly healthy) baby.
Unfortunately, until recently, the dominant medical system for treating intersex treated parents as a means to an end. Psychologist John Money at Johns Hopkins University developed that system which assumed gender is all a matter of nurture, not nature. Money claimed that any child could be turned into any gender as long as the parents believed in the assigned gender. As a consequence, doctors told parents of children with intersex what gender a child was and then doctors scheduled intensive "normalizing" surgeries to try to make the genitals look clearly female or male (usually female). Confusion and distress on the part of the parents and child were downplayed, because doctors believed the only real issue was the gender assignment, and that once gender was assigned and sex "assignment" surgeries were started, they had to stay the course no matter what. They assumed a clear gender identity would alleviate all parental distress and therefore all distress on the part of the child, and that "normalizing" procedures would provide a clear gender identity.
Money claimed to prove this system worked with a case known as "John/Joan." After a pediatrician accidentally destroyed the penis of an identical twin boy (who was not intersexed) during circumcision at eight months, Money recommended to the parents that the child be made into a girl. They decided to take his advice and for years Money claimed the sex reassignment had worked. We now know that that child, who grew up to take the name David Reimer, was never happy as a girl. John Colapinto tells his story--including his attempts to rebuild what he could of the male anatomy that was taken from him in "reassignment" surgeries in the book As Nature Made Him.
What, then, should parents of a child with an intersex condition know? The first thing they should know is that "ambiguous genitalia" are not diseased. They just look different. Unusual genitalia may signal an underlying metabolic concern, like Congenital Adrenal Hyperplasia (CAH), but doctors can usually treat metabolic concerns without doing surgery on the child's genitalia. Many babies born with intersex conditions are perfectly healthy and do not require any medical intervention other than diagnostic tests. Parents therefore need to press doctors to make clear to them which parts of their child's anatomy involve threats to their child's physical well-being, and which are psycho-social concerns. They should also press doctors to explain which interventions must be done on an emergency basis (for example, when a child is born without any urinary opening) and which can be put off until parents have had the time to calm down, to get to know their own baby and other parents in similar situations, and to explore all of their options. They also should actively request referrals to professional and peer counselors, so that they can express, in a supportive and unhurried environment, their own feelings of confusion, grief, shame, and fear.
Parents should also know that doctors are likely to seek from them consent for "normalizing" genital surgeries when the child is still very young, because many doctors believe that this will make the parents' distress end and will prevent the child from feeling any distress. In fact, these surgeries carry great risks, including risks to genital sensation (which the child will need later for a healthy sex life), continence, fertility, and life. The risks should not be downplayed, particularly in consideration of the fact that "normalizing" surgeries are not medically necessary for physical well being. A nurse told me recently of one baby girl who ended up in intensive care on a ventilator because of complications from an elective "normalizing" surgery. Many parents have expressed to me disappointment in the surgeries after having discovered that the surgeries can't really give their child "normal" looking genitals. Some surgeries require that parents do follow-up care that parents may find very troubling. For example, "vaginoplasties" which lengthen or build vaginas out of skin or pieces of colon often require that parents regularly dilate the new vagina with a lubricated dildo. Several mothers have told me that, if they had understood that that was what would be involved in home follow-up care, they would have waited until their child was old enough to consent to and do the dilations herself. Parents also need to know that the few follow-up studies available show that "normalizing" genital surgeries done in infancy or early childhood seem to have a poor long-term success rate. That is why more and more doctors are recommending that parents put off these surgeries until puberty, when the surgeries tend to be more successful and when children can provide input on the decision-making process. It is also why parents should press doctors to explain to them exactly what scientific follow-up studies can or can't tell them about the success of these interventions.
Parents should also be aware that legal scholars have recently shown that parents of children with intersex conditions are often not fully informed before they consent to "normalizing" surgeries. In the recent past they have not been told, for example, that the claim that gender comes from nurture has fallen into serious question, and that doctors cannot actually know what gender a child will end up feeling. As a consequence some parents have consented to have their micropenis boys turned into girls, only to discover later that studies by Dr. William Reiner at Johns Hopkins University have shown that many children born with micropenis ultimately take on the male gender identity regardless of having been raised as girls with surgically "feminized" genitalia. Parents have also not been adequately informed about which procedures were essentially elective. Finally, parents have not been advised of what was and was not known about the long-term effects of this system of treatment.
It is important that parents of children with intersex conditions press doctors to tell them the exact diagnosis once the doctors know it. This will enable the parents to do their own research, and to find other parents with similar experiences, as well as understand their options. Parents of children with intersex conditions--indeed, parents of any child with a complex condition--should ask for copies of the child's medical records on a regular basis. According to an article in December 2001, in the British Medical Journal, "a paternalistic policy of withholding the diagnosis is still practiced by some clinicians" in intersex cases. These physicians mistakenly believe that shielding parents from exact diagnoses in intersex cases protects parents and children from unnecessary harm. A few also mistakenly believe this practice is ethical and legal; it is neither.
A recent article in the British Journal of Urology notes that photographs taken of them as children and later published in medical journals and textbooks have unintentionally harmed some people with intersex conditions. Parents should guard against unnecessary photographing of their children as well as unnecessary display to medical students and residents, particularly as the child becomes old enough to understand and remember these incidents. While teaching hospitals will be inclined to use the opportunity of caring for a child with intersex for educational purposes, parents should resist any encounter that does not directly benefit their child, given the risks. The trauma to parents and child that can arise from repeated display of a child's genitalia to strangers should not be underestimated.
When facing the possibility of intersex, parents should know that every child can and should be assigned a gender as boy or girl and that doing so does not require any surgery. Gender assignment is accomplished for every child (intersexed or not) through the social and legal labeling of a child as boy or girl. In intersex cases, doctors and parents can work together to try to figure out what gender a child is likely to feel given that particular child's anatomy and physiology, given what doctors know from scientific studies of outcomes in similar cases, and given how the parents see that child's gender. The parents will have to recognize that there is a small but real chance that gender assignment may not hold, that the child may express the other gender later, and that this is why it is best to leave the child's anatomy intact as much as possible. Removing parts doesn't remove the possibility that the child may change gender later; it only makes it a lot harder for the child to do what she or he wants or needs later.
When parents are making decisions on behalf of a child with intersex, they should keep in mind what the sociologist Suzanne Kessler has shown: Kessler asked a group of men whether, if they had been born with "micropenis," they would have wanted to be turned into girls, and she asked a group of women whether, if they had been born with large clitorises, they would have wanted to have their clitorises surgically shortened. The vast majority of men said they would rather grow up with micropenis than as girls. The vast majority of women said they would have wanted to have their large clitorises left alone. But asked what they would choose for a child in the same situation, many said they would opt to turn micropenis boys into girls and would opt for cosmetic surgeries on girls' large clitorises. The reason behind the different answers is the compassion we all feel for children. We all want to protect children from hardship. But the key to keep in mind is what the child would likely want for himself or herself. Kessler's study as well as interviews with adults with intersex (both those who were subject to "normalizing" surgeries and those who were raised without "normalizing" surgeries) indicates that the vast majority of people want their parents to let them decide for themselves whether to risk health, appearance, genital sensation, continence, fertility, and life. Putting off the surgeries until at least puberty allows the child to have input on the decision, and it seems to provide for better outcomes as well as providing for the possibility that surgical techniques and outcome data will improve in the interim.
Finally, parents should know that intersex does not have to be treated with shame and secrecy. The social (and sometimes also the medical) system by which we treat parents of "different" children as pitiful or shameful is a system that harms those parents and children. Intersex is a natural variation--we see it in all animal species and throughout history. People with intersex can grow up as healthy boys and girls, men and women. Their best shot at doing so is when their parents are not made to feel ashamed of themselves or their children. Unfortunately, "normalizing" procedures like cosmetic genital surgeries sometimes inadvertently make parents and children feel unnecessary shame. Many adults I know with intersex conditions feel that their parents' decision to change their genitals for cosmetic reasons means that their parents saw them as freaks, even though that isn't what their parents intended. Dealing openly with intersex is the best defense against the shame-game. Parents should therefore have access to professional and peer support as they learn to talk with their child about intersex in an open, honest, and accurate manner. Parents will also find that connecting their child to peers with intersex will allow their child another opportunity to talk openly about the challenges of living with intersex. Talking this through undoes the shame and secrecy that pretty much everyone involved agrees has historically been the most harmful aspect of intersex.
No one is suggesting that in cases of intersex we "do nothing." But parents need to know that intersex is primarily a psychosocial concern, and that it is therefore best treated with substantial and continuous psychosocial support, professional and peer. The bottom line is that children with intersex conditions and their parents deserve honesty, respect, and support. But we are not yet at the point where that is automatically provided. We all need to do our part, as doctors, parents, neighbors, and teachers, to demystify intersex and see to it that parents of children with intersex conditions know the same pride and joy of parenting as others.
For more information see www.isna.org.
Top ten myths about intersex by Alice Dreger
MYTH #10: Intersex is extremely rare.
First we need to acknowledge that it's hard to say exactly how frequent intersex is, because the sex spectrum is like the color spectrum; nature provides us with a range where one "type" blends imperceptibly into the next. For our linguistic and social convenience, we break that spectrum into categories. It makes it easier to talk about "that blue car" or "that man over there." But nature doesn't tell us that there are 7, or 10, or 100, or ten million colors, and nature doesn't even know that there are two sexes. We humans, with our words and our cultures, decide how many categories to delineate. While the "male" and "female" types are relatively common, nature presents a full range of sex types, and people decide where the line should be drawn between "female" and "intersex" or "intersex" and "male."
That said, we do know that about 1 in 2,000 children is born with genitals that are pretty confusing to all the adults in the room. We know this from the statistics of how many newborn babies are referred to "gender identity teams" in major hospitals.
But wait, you say, 1 in 2,000 sounds rare! Well, if only 1 in 2,000 persons is intersexed, then intersex is more common than cystic fibrosis, a condition most people have heard of. In fact, as Sherri Groveman (now the Treasurer of ISNA) pointed out in her article in Intersex in the Age of Ethics, if you do the math, you realize that there are more intersexed people in the world than there are Jewish people!
And if all of the intersexed people of voting age had voted for a single presidential candidate, the outcome of the election would have never been in doubt. (Not that we're telling you who you should have voted for - though you might want to know for future reference that Al Gore made a public, educated statement about intersex at a meeting of lgbt leaders. We were unable to find out from the Bush team the Republican platform on intersex.)
In fact, maybe it's time to print t-shirts that say, "I'm intersexed, and I vote!"
But wait, are you intersexed? That leads us to . . .
MYTH #9: Only "true hermaphrodites" are really intersexed.
The term "true hermaphrodite" is a nasty Victorian term invented in an effort to make intersexuality go away. (My first book, Hermaphrodites and the Medical Invention of Sex, is all about this.) The term "true hermaphroditism," a term that sounds fancy and special, refers simply to the condition in which one person has both ovarian and testicular tissue, whether or not that tissue is functional physiologically. But it is silly to count only these folks as intersexed! Their internal and external anatomy varies all over the place, and many of them look less "ambiguous" than other folks. Some of them have xx chromosomes, some of them xy, and some of them have mixes or variations on those themes. Keep in mind that nobody has two full sets of sex organs, as some people mistakenly imagine. People with ovarian and testicular tissue, like other intersexed people, have one set of genitals, though they may be kind of in-between in appearance.
In practice, the term "intersex" is used to refer to anybody who was born with anatomy other than what the Powers That Be define as "standard male" or "standard female." What counts as "standard"? Check your phall-o-meter (purchase online at ISNA's website), and stay tuned for a later newsletter, which will explore the deep and oh-so-hot question, "Who really is intersexed?"
For now, on the topic of who is intersexed, let's move on to dispel . . .
Myth #8: If you're transsexed, then you're intersexed.
This myth comes from our nutty cultural notion that your identity has to find its basis in your anatomy. It's just like the old-fashioned (sexist) idea that if you're a strong woman, you must really be a man inside. In fact, it's the same kind of stereotype that assumes that all black people are lazy. Aren't we past the point of believing that one type of anatomy necessarily maps to only one type of identity? Get over it!
Transsexed people are sometimes people who were born intersexed, but far more often they are people who were born with "standard" male or female anatomy. By a common definition, transsexed people are people who were assigned a gender that doesn't work for them. ISNA supports the right of all people, regardless of what their body looked like when they were born, to assume the gender identities that makes sense to them. This leads us to . . .
Myth #7: ISNA advocates doing nothing and raising intersexed babies in a third gender.
Sorry, gender warriors, that's not us! We certainly would like to see people become less gender-phobic, but we don't think dumping intersexed kids into a gender-phobic world with no gender or with a "third gender" is the way to go. We believe there are two problems with trying to raise kids in a "third gender."
First, how would we decide who would count in the "third gender"? How would we decide where to cut off the category of male and begin the category of intersex, or, on the other side of the spectrum, where to cut off the category of intersex to begin the category of female? (See Myth #1.)
Second, and much more importantly, we are trying to make the world a safe place for intersexed kids, and we don't think labeling them with a gender category that in essence doesn't exist would help them. (Duh, huh?)
ISNA recognizes that it can be damned hard to be intersexed, or to have an intersexed child. That's why we exist. That's why we don't advocate "doing nothing." What we do advocate is providing parents of intersexed newborns - and within a couple of years, intersexed children themselves - with honest and accurate information about intersex, psychological counseling by professionals who are not gender-phobic, medical help for any real medical problems, and especially referrals to other people dealing with the same issues. Time and again researchers have found that, no matter what the condition - being gay, dealing with a serious disease - peer support, even if informal, saves families and lives.
ISNA believes that intersexed children and adults should not be subject to surgeries designed to "make the genitals look normal" without their explicit consent. (And consent of your parents isn't the same as your consent. Think about it - would you want your parents making medically unnecessary decisions about your sexuality?) Some people think surgery is the only possible medical response to intersex. Not so! Everyone agrees that intersex is a psycho-social issue, so why not deal with it as a psycho-social issue first and foremost? This leads us to . . .
MYTH #6: You can't raise an intersexed child as a boy or girl without surgery.
Of course you can! When people ask me whether my baby is a boy or girl, do I have to show them his genitals to answer their question? No, I tell them, "He's a boy." To gender a child, we give that child the label of "boy" or "girl" and thereby float them into the (admittedly often problematic) gender stream of our culture.
How would we decide what gender to give an intersexed baby? Doctors and parents should consider an intersexed baby's genitals and physiology and, using the best knowledge they have of various intersex conditions and our culture, decide which gender the child is most likely to grow up to have. Sure, this requires recognizing that the child might express a different gender later. But the fact is that even with "corrective" surgery designed to "lock in" one gender, many intersexed children transition gender later.
We also have to recognize that everyone's gender assignment is preliminary. Mine was, yours was, so is my son's. Intersexed people are more likely than others to transition genders, but everyone, intersexed and not, has that potential. And it is worth remembering that the idea of "locking in" a gender using "corrective" surgery feeds into . . .
MYTH #5: Surgery makes normal-looking genitals.
This simply isn't true in the vast majority of cases. As Cheryl Chase, the Executive Director of ISNA, noted in Intersex in the Age of Ethics, "Surgery is good at removing structures . . . it is much less useful for creating structures." ISNA believes that medically necessary surgeries should be employed when a child or adult's physical health is threatened. We believe that, for example, if a child's urine is not draining in a healthy way, the child should receive medical treatment for that problem. But "cosmetic" surgeries designed to make genitals look "normal" are not medically necessary.
Intersexed genitals are not diseased! They just look different. And don't go giving into . . .
MYTH #4: Once surgery is better, we won't have to worry about intersex.
When is it ever going to be ok to risk a baby's future sexual function, fertility, and even life, just because her genitals force you to realize gender and sex aren't simply dichotomies? Who are you to decide she wouldn't be happy with the genitals she was born with?
If it is true that intersex cosmetic surgeries are getting better (and we lack the data to know), then why not let the intersexed person himself decide when, in his own opinion, the likely benefits to him of the surgery outweigh the burdens and risks to him of that surgery?
Keep in mind, too, that surgeries designed to "correct" intersexed genitals will always, by definition, carry with them the message that intersex is shameful and bad. And we don't think intersex is shameful or bad. Nevertheless, we keep running into . . .
MYTH #3: "Corrective" cosmetic surgeries make parents forget their kid was born different and undoes all their confusion, shame, guilt, and fear.
Hello? This might work if the surgery being done was a lobotomy on the parents. "Normalizing" surgery just gives parents this message: Your kid is a freak, we had to correct it, don't talk to anyone about it because this is a really scary, shameful condition.
There is no question that the parents I talk with whose children had "normalizing" surgery still have all the confusion, shame, guilt, and fear after the surgery. Some parents say they are even worse off. Some have ended up with disabled kids. Others have wound up with more guilt after realizing they risked their children's sexual function and fertility. Many worry openly that their kids will later accuse them of not accepting them as they were.
I don't have a smooth transition to the next myth, so let's move on to . . .
MYTH #2: John Money is responsible for all of the troubles that have befallen intersexed people.
Psychologist John Money became widely known through John Colapinto's book, As Nature Made Him. Money often argued that you could make any kid a girl or a boy, as long as you made the genitals look "right." It turns out gender identity is much more complicated than that, but unfortunately legions of doctors thought Money was right and did "normalizing" surgeries in an attempt to make intersex go away.
While it is true that a lot of doctors justified their work via Money's own work, it is also true that burning Money in effigy won't make any difference in the lives of the five girls who today had their clitorises cut down by a surgeon who thinks no one can live with intersexed genitals. Every time you sit around and blame Money, ask yourself what you've done today to try to see that tomorrow there will be only four children subjected to medically unnecessary surgeries on their genitals.
What can you do? For starters, don't give into . . .
MYTH #1: My little contribution to ISNA can't possibly make a difference.
What? You doubt our powers to change the world on a shoestring budget! Consider the fact that in the last year, with just a few thousands of dollars, we have provided educational material to tens of thousand of people, supported doctors and activists working for positive reform, put intersex on the national agenda, and helped a few wonderful intersexed people realize that they are not alone.
Remember what Margaret Mead, that gender maven, said: "Never doubt that a small group of thoughtful committed citizens can change the world: Indeed it's the only thing that ever has."
We're sure that right after that, she added, "Send money!" Help us now end shame, secrecy, and unwanted genital surgeries for people born with atypical sex anatomies. With your help, we can make the world a safer place for people born intersexed.
Between the lines
by Victoria Tilney McDonough
Coming to terms with children born "intersexed"
Cheryl Chase hid in her brain until she was in her mid-30s. An attractive woman with short cropped hair and strong features, Chase was not always that comfortable with herself. Nor was she always what she appears to be. Until she was 18 months old, Chase was a boy. She had a different name, clothes and toys that symbolized boyhood, and a birth certificate that had an “M” inked in the gender box. Then, before she reached the age of two, she was “reassigned” female. She was given a new name, new clothes and toys, and with a new birth certificate in the files, the family moved to a different town where no one knew them. She also underwent a clitorectomy, the surgical removal of her entire phallus, which they reinterpreted as a large clitoris instead of an undersized penis, a procedure that all but destroyed her potential for sexual pleasure later in life. Seven years later as a grammar school kid, she had her testes trimmed and from then on endured yearly trips to the doctor to be poked, prodded, and photographed. No one told her why she was different, though she knew she was. Her parents fought and whispered. Her questions were left unanswered. She felt like a stranger in her own skin, her body a prison of shame and secrecy instead of a temple. It was not until she was in her early 30s that Chase learned the whole truth: She had been born intersexed, what was once called a hermaphrodite.
“When an intersex baby is born, the default is usually to perform surgery. Doctors want to ‘fix’ what is not right, then slap a diaper on the baby, close the file, and send it off into its life,” says Chase, who spoke in Missoula last week. “It is difficult for parents and doctors to think of an infant as a person who will grow up into a sexual being, an adult with drives and the ability to make lifestyle choices.”
Despite the myth that intersex babies are rare—anomalies that are as freakish and monster-like as the mythical being, Hermaphroditus, from whom their name was derived—as many as one in 2,000 infants are born intersexed.
An intersex baby is born with ambiguous genitalia, or more precisely, with an anatomy that someone decides is neither standard male nor female. Though there are several dozen variations on the diagnosis, an intersex baby is not born with two sets of genitals, but rather a phallus that can be interpreted as a “mini penis” or an “enlarged clitoris,” as well as gonads that can present as either testicles or ovaries. Because nature could not seem to make up its mind in utero, many doctors believe that the best course of action is surgery. That way, the child grows up looking more “normal” (or so it’s long been thought), resembling friends and being happier and more well adjusted. But to date, there have been virtually no follow-up studies on intersex individuals who were surgically altered during childhood.
“Intersex is definitely a queer issue,” says Chase. “I mean, how do you know someone’s sex? You might ask them, or you could make a guess based on physical appearance, bone structure, clothing choices, mannerisms, behaviors. You can’t see sexual desire. You can’t divorce gender identity from sexuality. They are inextricably linked.”
Defining gender identity can be a tricky business. Every individual has a chromosomal sex, a hormonal sex, and a “mental” sex or gender, though these don’t always line up for everyone. Who is to say that an intersex baby who is assigned male and surgically altered to match that assignment won’t grow up to feel like a woman trapped in a man’s body? According to Chase, the reason doctors—and parents—often want to surgically “fix” their intersex infant is because they worry the child might grow up to be gay or lesbian instead of heterosexual. Though the medical profession and society at large have come a long way with dealing with issues like death and dying, adoption, and cancer, usually people don’t want to talk or even think about intersexuality.
Doctors mean well, says Chase. They don’t opt for surgery to be cruel or mutilate these babies. Rather, they are just thinking “inside the box.” A lot of times, doctors don’t believe in changing a practice unless they have a better one, and this takes education and open-mindedness. “At a medical meeting, a doctor showed a slide of an intersex child’s genitals almost as if it were a freak show. The slide included the genital area only, no arms or legs, no face. Implying that surgery is the only choice, the doctor asked rhetorically: ‘Would you send this to kindergarten?’” Chase says. “When I went to kindergarten, I wore clothes.”
To endure the shame and confusion she felt as a child and later as a young adult, Chase tried to concentrate on her brain instead of her body. “I went to MIT and studied math and science. I learned Japanese. Then I moved to Japan and got a job doing intense computer and translation work. I was good at all the hard stuff, the non-emotional stuff that’s considered more masculine,” she says. “But I was miserable. Suicidal for a long time. I kept thinking that I’d feel better, but at 35, I realized that the future was here.”
In Tokyo, Chase volunteered as an English speaker for a crisis hotline. “To volunteer, we had to go through low-level training for therapists. I thought they would teach solutions to offer over the phone, but I ended up learning how to talk to people, how to deal with myself and others on a more emotional level, something I had never done before.”
At 36, Chase returned to America. Finally able to recover her medical records after being lied to and turned away on many occasions, she confronted her mother. “I was a mess. Angry. I found it harder and harder to believe that the people who were supposed to take care of me would have done this,” she says. “I was worried my mother wouldn’t tell me anything, but I needed her to fill me in on the emotional stuff. She said she didn’t have any shame, and yet she still couldn’t admit anything. The whole thing had been traumatic for her too. It became too painful for her to see me after that.” Chase’s mother died 10 years later. They never got the chance to share truths, losses, compassion.
Though the decisions that need to be made for an intersex child are never easy or simple, Chase believes vehemently that a person should be able to make his or her own choices. “Surgery does not make everything perfect. It might make you look more female or male, but it certainly does not make you look or be ‘normal,’” she says. “A person should be able to make a choice when they are a teenager, when they have some sense of their sexuality and gender identity. And with all the information on the table, so secrets, no lies, they should have a realistic view of what doctors can and cannot do. Honest and complete disclosure is good medicine.”
For Angela, an intersex woman, the choice never belonged to her. She did not present as intersexed until she was 12, around the time she discovered masturbation and enjoyed the pleasure her enlarged clitoris afforded her. When her mother saw her emerge from the shower with what looked like a small penis, she rushed her to the hospital. She was told she had ovarian cancer and went immediately into surgery. She awoke with no ovaries and no clitoris. A boy has a penis, a girl a vagina. A clitoris, she was told, was considered unnecessary. Angela was too ashamed to ask what had happened. She can no longer enjoy her body as she once did.
Another intersex child who was assigned female was given a vaginoplasty, a vagina often formed from a stretch of colon. In order to have it remain open it has to be manually stretched with what amounts to various sized vibrators. The child’s grandmother had to hold the baby down as it screamed while the mother did the “therapy.”
Vaginoplasties often result in infection. They can separate, leak mucous most of the time, and be very painful. Though this procedure is not used for transsexual operations, it is still used for intersex infants.
Though increasing public awareness and working toward policy change can be slow, Chase already sees the hopeful beginnings of a sea change. At a recent meeting with the National Institutes of Health, Chase says she met doctors whose viewpoints ran the gamut. “One doctor admitted to me that it had never occurred to him that quality of life was an issue for intersex individuals. Just that he made that mental leap was hopeful,” she says. Another doctor, a surgeon, recently returned to medical school to become a pediatric psychologist specializing in the children he used to operate on. “I think he, as well as some others in the medical field, are realizing that you can repair a gender assignment, but you can’t put back what you’ve surgically taken away.”
The work “to create a world free of shame, secrecy, and unwanted surgery for intersex people” can be slow going. One surgeon Chase met recently said he has never talked to a “formerly intersexed” person, nor done any follow-up studies on adults. “He said he doesn’t want to talk to any of them because he might then be swayed by emotion.”
According to Chase, counseling is one of the major links missing in helping families and individuals deal with intersexuality. “We need to normalize this by talking about it, not by cutting things off or creating new parts,” she says. “Parents of intersex babies feel guilty, ashamed, often traumatized. They need to have tools to deal with their children and the questions and situations that are going to come up. And the individuals themselves need to be able to express themselves in ways that help them deal with being different. They need peers. They need to meet other people who have gone through a similar journey.”
To date, there are few therapists equipped for the job. “They are scared that the issues will be too medical, too scientific. They also think the work would be too gender-oriented for their expertise,” she says. “They want to know if the person is male or female then go from there. And ironically, many therapists seem afraid of dealing with trauma. People—doctors, psychiatrists, families—still think that by keeping everything secret that they will be helping these children, saving them from themselves.”
In 1993, Chase founded the Intersex Society of North America (ISNA). Already, ISNA has made significant steps in education and advocacy for intersex issues, putting forward a patient-centered model that is being adopted in more medical facilities. Chase and her colleagues are in the process of creating a training video and accompanying handbook for doctors, which they hope to ultimately sell to hospitals, psychiatrists, libraries, and schools. Among others, it features Chase, a pediatric-endocrinologist nurse, a pediatric psychologist, a biomedical ethicist, and the mother of an intersex child who was surgically assigned female as an infant and who now, at 9, knows he is a boy.
“If intersex people never get to talk about the issues surrounding their differences at birth, they never get to mourn what they weren’t born with, or without,” says Chase. “They remain stuck.” And like Hermaphroditus, they remain trapped in the myth that they are not right until that myth is shattered simply by the act of speaking and sharing.
Intersex Babies Controversy Over
Operating to Change Ambiguous Genitali
— Hida Viloria, 33, is not the least bit confused about her gender. "I'm female," she says, "I just feel like I'm a different variety of female."
She's different because she was born with ambiguous genitalia. "My clitoris is much larger than, I think, the average size clitoris," she explains. "And so because mine is larger, it's grown a little more to where it starts to resemble a small penis."
Viloria had no idea she looked different from other little girls until she was 11, when she saw one of her friends as they changed into their bathing suits.
Thousands of girls like Viloria who are born with ambiguous genitalia — known as hermaphrodites or intersexual — have routinely undergone surgery as babies to remove or reduce an enlarged clitoris.
Many doctors believe that operating on an intersex baby's genitals within the child's first year is best for both the child and the parents.
"We believe operating on the genitals in infants is psychologically better to do when the child is younger," says Dr. Kenneth Glassberg, a pediatric urologist. "I think the individual who is not operated on will have problems in society as we know it today."
The American Academy of Pediatrics also says early genital surgery may be best for intersex babies. But over the last few years, a storm of controversy has erupted over the ethics of surgery for intersex babies. Some intersex adults, like Viloria, who has not undergone any surgery, charge that the surgery, for cosmetic purposes, is nothing short of mutilation.
For Viloria, Information — Not an Operation
Growing up, Viloria says she was a popular, sociable tomboy who excelled at sports, but never doubted she was a girl. She got her period and knew she could have a baby some day. She did, however, hit a rough patch when she became sexually active. First she dated men, but then, like many intersex women, she says she realized she was a lesbian. That's when she understood just how different her genitals were from other women's.
"Everybody knows how penises function," says Viloria. "But clitorises actually function the same way. And so for an enlarged clitoris, there's a pretty visible difference when you're being sexually active."
Essentially, she explains, she had an erection: "I enjoyed that immensely, and so did my partners."
But she was mystified, and wanted some answers. "I did kind of wonder if maybe I was male," she says. "But I knew, technically, I wasn't."
At 27, she figured it out — far less traumatically, she says, than if she'd had surgery. She happened to see a newspaper article about intersexuals, a term she had never heard before.
"I just remember being like … Oh my God, I think this is me," she says. "I was overjoyed to know what I was."
Because her answer came from information — not the operating room — she thinks intersexuals should not undergo operations as babies. Instead, she says, they should be allowed to decide as adults if they want their genitals altered.
The Scars of Surgery
A growing number of doctors, who argue that the surgery is about as medically necessary as a facelift, agree with Viloria.
"We've heard more and more and more people coming forward saying, 'This hurt me, either physically, psychologically or both,'" says Dr. Bruce Wilson, a pediatric endocrinologist at Michigan State University. "To hear a group of people saying, 'I don't have normal sexual response,' 'I have painful sex because of the scar tissue,' 'I feel completely asexual because of what was done to me,'" says Wilson, was all he needed to lead the revolt.
Cheryl Chase is one of the angry intersexuals who had an operation at 18 months old. Doctors removed her clitoris because it was enlarged, a surgery known as a clitorectomy.
"I can't have an orgasm," says Chase, who believes her inability is due to the surgery.
Glassberg believes the clitorectomy would not have been performed if Chase were now an infant, because doctors now reduce the size of the clitoris instead of removing it. But some physicians say that even a reduction may damage nerves and interfere with sexual pleasure.
"Any time I think about it, and think about the fact that it could have happened, I just thank the universe above," says Viloria. "Accept that we're here," says Viloria. "Don't try to cut us up or change us or shame us or hide us”
Links to other organizations
Bodies Like Ours http://www.bodieslikeours.org
We believe that through awareness, education, and peer support, our goals of eliminating isolation, shame and secrecy experienced by people born with bodies like ours will be reached.
QueerBodies -- An intersex youth initiative of Bodies Like Ours
ISNA -- Intersex Society of North America
GenderPac -- Gender Equality and a major supporter of people with Bodies Like Ours
Diamond -- The website of Dr. Milton Diamond, one of the first and one
of the leading researchers in the issues we face with Bodies Like Ours.
MRKH -- Support and Resources for girls and women born with Mayer Rokitansky Syndrome (MRKH) MRKH is also known as vaginal agenesis
IFAS -- International Foundation of Androgynous Studies. The foundation's studies include aspects of endocrinology, urology, pediatrics, surgery, psychiatry, clinical psychology, genetics, law, politics, history
AIS Support Group/Australia -- A peer support, information and advocacy group for people affected by AIS and/or related intersex conditions, and their families
CARES Foundation -- Support and Information for parents of children with CAH
AIS Support Group -- Support and a wealth of information for those interested in Androgen Insensitivity Syndrome
Finland Intersex Support Group Support and information in Finnish. A project of a Pediatric Surgeon from Finland. In Finnish.
Kindred Spirits -- A website blending a unique perspective of intersex, transexualism, and spirituality. The site host is an intersexed person who has transitioned.
Lynnell Stephani Long -- Personal website of intersex activist Lynnell Stephani Long
Portland Intersex Initiative -- A site and resource for intersex people living in the Portland, OR area. They have a ton of great information there and it's definitely worth a visit, even if you don't live in Portland, OR
Survivor Project -- For survivors of domestic abuse, with a focus on intersex victims.
XX-Frauen -- A comprehensive website for AIS and other intersex information. In German.