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Below is the full text of questions sent to us by UC Berkeley student Stephanie Lee Tran, who was writing an article about the intersex controversy to be published in a journal, as well as our answers. While it is not a polished interview, we decided to post it here (with the permission of Stephanie) because it might answer some questions other students might have, and possibly help them come up with better questions to ask.
People are afraid of anything that has to do with sex in our society, especially when it involves children and sex. And we are also afraid of people being different. So it's not surprising that people are afraid of intersex bodies.
As for shame, there are two questions here: why do people consider intersexuality shameful, and why do intersex people feel ashamed-- these are two separate questions. First can be answered with the same answers I gave above: it has to do with sexual parts that we don't feel comfortable about them in the first place, plus it's different so it's "abnromal." The latter question is more important, because it has to do with the environment in which intersex individuals are raised, that is rife with physical and sexual violation and secrecy, that make people feel that there is something fundamentally wrong with who or what they are. See http://www.intersexinitiative.org/articles/sexualabuse.html
The word "hermaphrodite" means something different in biology: it means that one can produce both sperm and ova, which no intersex individual can. Of course it doesn't mean that when doctors use the word hermaphroditism ot describe a human condition, but in most people's minds "hermaphrodite" still means being fully male and fully female at the same time. Not only is this untrue, many people find it stigmatizing to be viewed that way.
It's also an old term with mythical roots, and there are hermaphrodite mythologies in many cultures. The actual intersex people are nothing like these mythical beings, so it's better to avoid the confusion.
At the same time, "intersex" isn't all that great label either, because it still gives the impression that it means somewhere between male and female. Most intersex individuals live as regular men and women, and don't want to be viewed as a third gender or transgender.
See:
http://www.intersexinitiative.org/articles/hermaphrodites.html
http://www.intersexinitiative.org/articles/funfacts.html
I'll answer the last question first, which will lead to answers to other questions. First, why do they do this? Because when doctors see an intersex child, they see a gender problem. Hence they define their goal as 1) creating "normal-looking" genitalia so that the child would fit into the society and have "normal" sexual acts (i.e. heterosexual intercourse), and 2) moulding the child to have "normal" gender identity (i.e. not transgender or transsexual) and sexuality (i.e. heterosexual). With these goals, they measure success of their intervention as 1) having "normal-looking" genitalia capable or "normal" sexual acts, and 2) having "normal" gender identity and "normal" sexual orientation.
Intersex movement believes that these are society's goals imposed on children. We believe that the goal of any medical intervention should be to improve the quality of life for the patients. And we believe that a lot more than the genital shape factor into someone's quality of life, and that our sexual fulfillment does not solely depend on whether or not our bodies are built for what they consider "normal" sex should be. We find that shame, secrecy and isolation imposed on intersex children cause far more damages. Having genitals chopped up so that it can pass the test of normalcy does not feel normal.
Studies have shown that the level of self-acceptance among children with severe disabilities depend more on the family's honesty and acceptance for them than the severity of the disability itself. We believe that this is true for intersex children also. So, we are not just talking about ending surgeries; we are talking about replacing surgeries with information, psychological care, social support, etc.
Many people assume that the problem with intersex surgery is that children sometimes get assigned the wrong gender. That is a concern, but not the major one (vast majority of intersex individuals stay with the gender in which they are raised). Rather, we are criticizing the attitude that matching one's genitalia to her or his gender identity is more important than her or his overall quality of life.
Doctors are not giving adequate information, even in 2004. Typically, they do not even inform the parents that surgeries are optional or that it is being challenged by some. They seem to be getting away with this under certain legal loopholes, but I predict not for very long. See http://www.intersexinitiative.org/law/civil-liability.html for the discussion on the legal theories of informed consent.
First of all, *some* intersex conditions actually are medically urgent. Or rather, intersex can occur as a symptom of other more serious condition. But doctors routinely use this fact to confuse parents what's medically urgent and what's not.
Also, some doctors say that it is a "medical emergency" when they believe that the child would be abused by her or his own parents who can't accept or love the child if they don't step in and perform surgery to make her/him "normal." This may or may not be true--but they should be treating parents with counseling and so on rather than mutilating the child so that parents will love and accept them.
Physicians do not seem to give very much credit to the parents, probably because they think they are smarter. I know of several intersex people who did not have surgeries, and their parents are doctors, lawyers, etc. I don't think that's because doctors actually think that surgeries are bad idea; I think it's because doctors view these parents (who are doctors and lawyers) as their intellectual equals, and actually care to provide the full information--resulting in a more careful approach to treatment.
Very much so.
Oh, they believe this as a matter of fact. Remember, we are talking about doctors, who are for the most part rich straight white males. What's their idea of "functional female genitalia"? Why, "hole"! Needless to say, it doesn't take much to meet their standard of what's a "functional female genitalia."
We really do not have all the information, so we can't know for certain that children will not be psychologically harmed by not doing surgeries (except, there is no evidence that intersex people psychologically suffered before the surgery became available). But we already know that doing surgeries harms them and it's not a good idea to continue doing so. I believe that we need to work on building support services and educating communities so that it won't be a psychological disaster for children to grow up with their intersex bodies intact.
Of course doctors hate this answer, because medicine tends to individualize any problem. They assume that the society will always be the same and try to help individuals cope with it and fit in the best. But as activists, we believe that the society does not have to remain the same and it won't.
None of the data is reliable, although some are more reliable than others. The fundamental problem in obtaining the number is that there is no clear-cut, agreed-upon definition for "intersex." Doctors don't even agree with each other about it. (By the way, none of the figures are based on self-report, so you do not need to worry about the problem of shame preventing self-report.)
The highest figure you may see is 4%, which Anne Fausto-Sterling attributed to a conversation with John Money. Money denies that he said such a thing, so this number has no attributable source and should not be taken seriously.
The next highest figure, 1.7%, also comes from Fausto-Sterling. But this includes many conditions that are not considered intersex by many physicians. The major weakness of this figure is that close to 90% of it is made up of a single condition, LOCAH, which most doctors do not consider intersex. LOCAH is a milder form of CAH or congenital adrenal hyperplasia, and people born with LOCAH have ordinary male or female genitalia. (Contrary to popular belief, males can have CAH--it's just that only females with CAH are considered intersex, and even then that's not all females with CAH).
On the low end, Leonard Sax says that the actual number should be 0.018%. He arrived this number by using a strict definition of intersex, which includes only those conditions in which the genetic and phenotypic sex is at odds (AIS, CAH) or those that involve mixed gonads. He argues that for the category of "intersex" to have any medical meaning, it should be restricted to these conditions only. The most glaring ommission from his definition is MRKH (Mayer-Rokitansky-Kuster-Hauser syndrome), which is basically genetically females that are missing vagina and uterus. Considering the fact that MRKH is twice as common as CAH intersex cases, and that girls with MRKH are treated similarily to girls born with AIS (i.e. surgery to create a vagina), it would be silly not to include this.
ISNA uses the figure "one in 2000" (0.05%) and so do we. It's not that this is based on any actual data that we know of; it is an "estimate" often used by the medical professionals, and it sounds just about right--I figure that if you add MRKH and several other conditions to Sax's list (that yields 0.018% as I said), it will come out to be something similar to 0.05%. That's our reasoning behind the "one in 2000" figure.
You might want to check out: Sax L (2002). "How common is intersex? A response to Anne Fausto-Sterling." Journal of Sex Research. 39(3): 174-178.
Depends on the condition. In some conditions, it makes sense-- for example, most CAH girls are fertile as female, so there is no point in taking away that capability if it can be saved. Also, testicular tissues have the low but higher than the average risk of turning into tumor, which is often used as the justification to remove them--even though the risk is pretty low in childhood; there are no such health justifications for removing ovaries.
So it's not 100% arbitrary that they tend to assign the child to be females. On the other hand, I do not know of any explanation for cutting off a genetically male child's perfectly healthy and functional penis--by which I mean it can deliver urine and achieve pleasure when touched--simply because it is small, and then drilling a hole in the child to make it "female"--other than that doctors are operating out of some sort of perverse mentality.
Yes, they do. Yes, it's somewhat helpful--after all, we need to know what's going on with the child's body to know any other possible health issues--but the chromosomes cannot be used to "determine correct sex." Nothing can--and this is true for intersex and non-intersex child.
In our society, we assign gender on every single child, whether intersex or not. We do so by observing the child's body, and make an educated guess as to what gender this child is likely to feel comfortable in. Sometimes we get it wrong--hence there are transsexual people in our society--so we'll adjust to the new reality once a grown child tells us that s/he wants to switch gender.
Intersex children are no different: first, we need to find out all that we can know about the child's physiology--this may include genetic tests--and then we (I mean parents and doctors together) make an educated guess. More information the better--but no information can by itself determine the gender of the child.
Also I'd add that the child's gender is often not in question. In many cases, the child is not seen as a gender-uncertain baby, but a boy child or girl child with some birth deformities. Surgery is not always done to assign a gender, but to "polish" the assignment that is already assumed.
San Francisco Human Rights Commission (LGBT Rights Committee) is working on a resolution to protect intersex people's civil rights right now, so you may want to contact them. From what I know, it's going to be largely symbolic.
Also, I'm working with some folks on drafting a legislation. See http://www.intersexinitiative.org/law/civil-liability.html
Personally, I don't think that the marriage backlash we are seeing today (marriage amendment, etc.) would affect intersex. Some people say that intersex people's marriage could be challenged if any state were to define one's sex to be determined by her or his chromosomes, but frankly I don't believe that any court would re-classify someone who was assigned as female at birth, raised as a girl, and continues to live as a woman as a legal "male" regardless of her chromosomes. I think that those who are saying this is being unnecessarily alarmist. As an activist I've always been in favour of honesty and rationality in organizing rather than using the worst-case scenario to incite fear just to mobilize the people.
You may know the 1999 Littleton v. Prange case in Texas, in which the Court ruled that Christie Lee Littleton could not sue her late husband's doctor for his wrongful death because her marriage as a transsexual woman was invalid, on the basis that she was genetically a male. If you read the ruling carefully, one of the judges makes a special argument for how this standard cannot be applied simply for intersex individuals. In other words, Courts are likely to make a more nuanced judgement if any intersex person's marriage were to be challenged. See: http://www.intersexinitiative.org/law/marriage.html
The marriage backlash would of course affect those intersex individuals who are also LGBT, myself included. But that's similar to saying that it affects Christians who are gay--it affects them because they are gay, not because they are Christians.
Lastly, I live in Portland, which is now the only major U.S. city in which same-sex couples can legally receive marriage certificates, and I am extremely proud of this. I am personally involved in defending this major breakthrough and in expanding it to the rest of the state.
Where will it go? First, surgeries will end sooner or later but that is not the end. Surgery is symbolic of how the society deals with intersexuality, but many people feel that shame, secrecy and isolation are more damaging than the surgery itself. To end this, we need to not just change the medical system, but also create new resources that do not yet exist.
There is so much more that needs to do, but what's exciting about doing this kind of activism is that whatever you do, you are doing something that's never been done before. And you actually see the result--for me, in the way of knowing a baby who is now 15 month old who averted surgery because her mother's friend had seen me speak before. Now the mom is an activist with my group, and so I get to see the baby from time to time as she grows older in the family where it's not shameful to be different. And I see the result in the larger scale too--I know I have played and will play some role in changing the minds of doctors, whose practice will impact many children over many years.