News from South Africa.

Yeah for Sally!

http://www.news24.com/News24/South_...1629028,00.html

Intersex legislation considered

Nov 30 2004 06:14:21:507PM

A South African law on corrective surgery for children with ambiguous genitals is under consideration, the SA Human Rights Commission has said.

Cape Town - A law on corrective surgery for children with ambiguous genitals - intersex children - was under consideration, the SA Human Rights Commission said on Tuesday.

"We are looking at the practice of surgery; do we need legislation to regulate this area, who should decide, when must the decision be taken," said Judith Cohen, parliamentary officer for the commission.

The commission hosted a seminar on intersex children on Tuesday, asking whether gender "normalisation" surgery was in the best interests of the child.

Cohen told Sapa the Department of Justice was also considering amendments to the equality legislation, so that it included the definition of intersex within the definition of sex.

She said debate about intersex children should take place within a human rights framework, particularly when these children challenged the worldview of society, which almost exclusively recognised male and female gender.

Dr Ariane Spitaels, a paediatrician at the University of Stellenbosch's faculty of health sciences, said it was necessary to reconsider surgery performed shortly after birth.

"The cut is final and irreversible," she said.

Spitaels said doctors and parents usually did not know before birth if a child was intersex.

She said parents faced huge societal pressure. They usually worried about what would happen when the child reached puberty, what their child's sexual orientation would be, and whether the child could have children of its own one day.

Sally Gross, founder of the Intersex Society of South Africa, who was classified as male at birth and known as Selwyn, said the issue concerned human diversity and human rights.

"My struggle... is quite simply to be seen as a human being and not as a walking, talking pathological specimen," she said.

Gross, who escaped gender reassignment surgery, said the temptation to fix things quickly with surgery was a mistake, and legislation was needed to regulate surgery.

Human rights such as the right not to have one's body violated should be fostered. Surgery, however well-intentioned, could be a violation of such rights.

Most of the gender normalisation surgery performed was feminisation, and described the procedure to keep open a pseudo-vagina as "hellishly painful" for adults, let alone for toddlers.

"It [surgery] must be measured against hard objective criteria; is this necessary to preserve life or physical health... if not it should not be possible in law to perform that surgery."

Gross said South Africa had possibly the world's highest prevalence of intersex children, with uncorroborated figures suggesting a national population ratio of 1:500, or about 90 000 individuals.

Closing the seminar, commission chairman Jody Kollapen, said the preamble to the Constitution spoke about freeing the potential of each person, and asked whether surgery curtailed this potential.

He said while legislation was important, it would by "naive" to think that legislation alone could reach the recesses of the mind, where "assumptions and prejudices thrived".

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Until you've lost your reputation, you never realize what a burden it was or what freedom really is. --Margaret Mitchell

First: I was born with a short vagina and I needed plastic surgery to achieve enough vaginal length. But I don’t want anybody to call my vagina a pseudo-vagina. I’m very disappointed that an intersexed person uses that kind of language. Heck, the next step is that someone calls me a pseudo-woman or a pseudo-human.

Second: the procedure to keep a surgically created vagina open is NOT “hellishly painful”. As a matter of fact, since the surgery, now several decades ago, I have done nothing to keep my vagina open. I think it doesn’t help us much when we try to persuade people with little(?) lies. Besides that, many adolescent and adult women with an XY-intersex condition didn’t have vaginal surgery at all. They use dilators to stretch their vagina. Dilation isn’t easy. Well… it sucks! You do it to make penetrative vaginal sex possible, but it is a very good way to way to make you think that sex isn’t fun at all. But that is not because of pain. It just feels rather stupid to put a cold plastic stick in your vagina, without the pleasure of sex. After using a dilator penetrative sex will keep your vagina open. And if you don’t have this kind of sex and if you stop dilation, your vagina will return to it’s original length. But that doesn’t mean it has disappeared. Well, keeping a vigina deep enough to have penetrative sex is not “hellishly painfull”. If you don’t have sex with a guy it can be hellishly boring…

Third: as mentioned before, here at BLO, not every person with an intersex condition is unhappy with surgery in childhood. Legislation will make some people happy, others unhappy.

Fourth: sometimes surgery is very necessary. Children with PAIS, 5ARD and 17BHSD with a female gender identity don’t want to wait till they have a deep voice and a male bone structure. Who will be the judge? With legislation you will have to fight people George Bush who once said that only the chromosomes are important: XX = female, XY = male (and indeed, he probably doesn’t know that more combinations are possible). It will mean that children with an intersex condition will need the approval of a court to have the surgery they want. And this court doesn’t know anything about intersex, so it will ask medical professionals for advice. That way the child will become the victim of doctors who say the surgery is necessary and doctors who say that surgery is not necessary. Does that really solve anything?

That said, I want to warn you all that legislation to stop surgery will bring us a new phenomena: treatment with hormones to enhance the male or female traits in a child. Several medical professionals involved in the treatment of intersexed children are working on ‘better’ ways to predict the gender identity of a child with ambiguous genitals. One of the criteria is the sensitivity for androgens. As a result more children with mild AIS, partial AIS or micropenis will be treated with androgens in the near future. And maybe this will also happen to children with 5ARD, 17BHSD and Leydig cell hypoplasia.

In my humble opinion this can have the same negative effects as surgery.

Yet… I can’t say that I completely disagree with this new paradigm in the treatment of intersexed children with ambiguous genitals. We don’t need legislation. There is no legislation for heart diseases, or for the treatment of children who are blind. So why would we need legislation. What we need is more research on the gender development of children and adults with an intersex condition. From that research we can learn who (better: which condition) is better of with early surgery and who not. And in which cases treatment with hormones is acceptable or not.

Legislation will not only stop unwanted surgery. It will also stop progress and research that will bring us better treatment protocols for people with an intersex condition.

And by the way, I don’t think legislation will stop unwanted surgery. In many African countries female circumcision is prohibited by law. But that doesn’t stop people to find a way to do it nevertheless. Even in the USA:

http://www.npr.org/templates/story/...storyId=1763682 `

More important than legislation is a better communication between the medical professionals and people with an intersex condition.

Groeten. Miriam

PS:



Yeah, one day we will be a majority... I'm afraid the numbers mentioned are not correct. There are several places in the world were intersex conditions are more common than in other parts of the world. South Africa is not one of those places, as far as I know.

Why do we want doctors to see intersex conditions as a variation of nature. And why do we include all kind of conditions that medical professionals see as a variation of nature in our definition of intersex? Not every hypospadia is caused by an intersex condition. Not every man with XXY chromosomes has Klinefelter. Many people with Klinefelter don’t see the Klinefelter Syndrome as an intersex condition. Many women with CAH don’t want to be included in our intersex community. Including Cloacal Extrophy in the definition of intersex made it possible for Paul McHugh to say that intersex children have to be raised according to their chromosomes.

It is not necessary to make other people believe we are a majority. In another thread Peter asked where all those intersex people are if they don’t visit BLO. Well, there probably are not as many people with an intersex condition as some activists want us to believe. I don’t think that is a problem. We are a very minor minority. But that doesn’t mean that people don’t have to listen to us. I even think that when we stop telling all those little lies, we will be heard by a lot more people.

Miriam

__________________
The Truth, The Whole Truth, and Nothing But The Truth.

Speak for yourself.

Vaginal creation on chidren on the assumption that they will have penetrative sex with 'a guy' is a bit presumptive and homophobic, no? I'm kind of surprised you seem to forget the role estrogens have in keeping a created vagina (whether through surgery or dilation) soft and pliable and open...and that means estrogens taken or naturally produces. I also suggest contacting parent who learned after being sold a vaginoplasty for their infant they would need to dialate her (a child mind you) or risk more surgery down the road.



Since the article didn't explain what type of legislation is being considered, are you aware of other articles or information not included or are you jumping to conclusions based upon the article alone?



People with lung cancer sometimes think smoking doesn't cause it so should warning language on cigs be discarded to make them happy? Why do we allow doctors to define us as anything but variations of nature? And if not variations of nature, would freak of nature be a better description? The politics of language are irmportant, and I personally think genital and sex and gender integrity is important enough to not be worried about medical definitions as much as being concerned about basic human rights for all.

Betsy

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Until you've lost your reputation, you never realize what a burden it was or what freedom really is. --Margaret Mitchell

Hi Miriam,

Thanks for keeping the discussion going. I appreciate that you related your own experience with vaginal surgery. I too have objections to terms like "pseudo-hermphrodite" and "pseudo-vagina". If I recall correctly, you mentioned elsewhere that you had your vaginal surgery done in your late teenage years, at around 17 or 18. It seems that if vaginal surgeries are done at an age when full informed consent can be given, and you work closely with your doctor (medic), that things are more likely to turn out all right. I think that perhaps age is a big factor in whether vaginal surgery is "hellish". I can't think of many things more "hellish" than a young girl having to undergo vaginal surgery and dilation at an age when many kids go "uuuggh" when seeing actors kiss in the movies. In reviewing written testimony for the San Francisco Human Rights Commission Intersex Task Force over the last couple of days, I have been struck by the difficulties that several people had with vaginal surgery. Especially, in cases were a vagina is constructed from bowel tissue, there can be many problems.

IMHO, I believe that people looking at legislation around intersex issues, are increasingly seeing that it is important to strengthen informed consent requirements for intersex treatments. Directly banning intersex treatments could lead to the types of judicial problems that you mention. If you want to get an idea of the general direction of thinking for the SF HRC Intersex Task Force, you can review Alice Dreger's excellent chart outlining the differences between the "patient-centered" and "concealment-centered" approaches to intersex treatment. It is available right here on the Bodies Like Ours website. (Under the Main Page --> Community Resources --> Protocol)

I agree with you that with increased demands that intersex people not be exempt from the protections of human rights laws, that doctors (medics) might try to resist such demands, and even resort to new treatment modalities to circumvent such demands. That does not mean that the demands should not be made, but only that we should carefully consider the situation. I am encouraged that Bodies Like Ours is taking a leading role in the study of legal issues concerning intersex people, and is the proud co-sponsor of the upcoming Cardozo legal symposium on intersex rights.

Peter

LOL, this is great way to demonstrate how important the context of a single line is. I hope you understand that I was talking about dilatation. It really IS hellish boring to use a dilator for 30 minutes while you watch teevee. You know that men are not my first choice when I want to have ‘fun’.



I don’t think it is more homophobic as it would be heterophobic to assume that a girl doesn’t want to have a vagina. Yet, I didn’t say that I’m in favour of surgery. I said that most women with XY chromosomes and an intersex condition use dilatation. It is common to start this when the child is old enough to decide whether or not she wants to have a vagina that is deep enough for sex with a guy.


Don’t worry, I’ve met already several of them, both the parents and the children. It would be an error to think that I’ve encountered only negative stories. Vaginoplasty is not very common here in the Netherlands. The standard procedure for the medics I know is dilatation when you are old enough and only if that doesn’t work you can get a vaginoplasty.



I assume you’ve heard about the euthanasia legislation in the Netherlands (http://www.internationaltaskforce.org/hollaw.htm). We have the right to die. But that isn’t that easy. Two doctors have to be consulted and both have to agree that the situation is completely hopeless AND that you suffer more than is acceptable. Then your doctor can help you, but after that he has to report the euthanasia to an “Regional Comittee’. If the members of the Regionall Committee finds that your doctor did something wrong, they will hand the case to a prosecutor. Because of this chances are that your euthanasia request will be rejected by your doctor, OR that he will not ask for the opinion of a colleague. That is one of the reasons why I thing that legislation for intersex conditions won’t help much.



I think you can’t compare something you can avoid (lung cancer because of smoking) with something that is congenital. With congenital conditions people have the right to decide for themselves if they want to see the congenital condition as something that plays an important role in their live or not. By making rules (legislation) you take away the possibility for people to take their own decisions. In stead you tell them what is good for them. In cases where everyone has the same opinion (murder, child abuse) legislation will be no problem. Even when society agrees on some rather strange riles (like driving on the left or the right side of the street) you can use legislation to force people to follow the rules. But with many medical treatments there are no rules. There is no standard treatment for people with an intersex condition. That means that the only legislation possible is a law that tells doctors to do their utmost best to help a patient. But these kind of laws already exist.

But what do you think of the treatment of very young children with hormones?

Groeten, Miriam

__________________
The Truth, The Whole Truth, and Nothing But The Truth.

gives me the creeps.

I assume you are talking about hormone-treatment in cases where it is not merely done for medical reasons.

What do medical professionals try to achieve with hormone-treatments? Creating facts before the child is mature enough to say Yes or No?
Here is a (rather old) follow-up study: Follow-up of 30 Klinefelter males treated with testosterone . IMHO it's flawed in several ways, but it shows what medical professionals focus on and what "they" think well-being is about. Hormones to modify behaviour?
The next thing could be parents of normal kids demanding hormone-treatment to make their boys less feminine or to improve their concentration ability, like it obviously happens with growth-hormones.
As long as there is informed consent and doctors make sure the child is not talked into it by parents or other caregivers, I think that hormone-treatment is ok.

Sofie

Please read this. Other info I have has not been published yet. Under this new paradigm more intersexed children will be raised as males. Not because their gender identity is male, only because their penile tissue is sensitive (enough) to androgens.

http://jcem.endojournals.org/cgi/ra...2004-0462v1.pdf

Groeten, Miriam

__________________
The Truth, The Whole Truth, and Nothing But The Truth.

The website carries a thread based on a news report concerning a recent workshop in Cape Town under the auspices of the SA Human Rights Commission (SAHRC). The purpose of the workshop was to begin the process of determining whether there needs to be regulation with respect to the non-consensual “normalization” surgery performed upon infants and children born with ambiguous genitalia.

The SAHRC is a statutory body in post-apartheid South Africa, one of a number of institutions in support of democracy established in terms of chapter 9 of our wonderful post-apartheid Constitution. An Act of Parliament governs its establishment and powers, which are quite extensive. Since 1999 I have tried to get the Commission on Gender Equality, another Chapter 9 institution, to recognize that intersex raises questions of human rights relevant to its mandate, but have hit brick walls. My impression is that there CGE has simply not got its act together. The SAHRC workshop, which emerged from a fair amount of personal lobbying about intersex, was all the more of joy for me, because it is the first time in South Africa that one of the “Chapter 9” institutions has recognized that intersex raises issues of human rights. I was one of the panelists. Inevitably, reportage of what I and others said was brief and did not give much context.

On the website, Miriam made some fairly harsh criticisms of specific things I was reported to have said. I believe that these criticisms arise from the fact that just sound-bites are reported without adequate context, and I wish to put what I am reported to have said into context. Given the evidence of the sound-bites alone without the broader context from which they were taken, Miriam’s criticisms are justified. Against the background of all of what I said, however, I plead “not guilty” and which to explain why. I am not in fact convinced that Miriam and I have disagreements about fundamentals, which is why I believe it important to set the reported remarks in their proper context.

What I have in mind in particular are to the issues of dilation and my use of the term “pseudo-vagina”. I used the offending phrase with reference to non-consensual feminizing surgery performed some years ago on a young South African boy, known by the pseudonym “Little Lucky”, after his genitals were removed in what is known as a “muti mutilation”. The term “muti” refers to traditional medicines, which apparently include preparations made from body parts. The genitalia of young boys are apparently prized by some unscrupulous practitioners of traditional medicine in this country, hence the phenomenon of “muti mutilations”.

The outcome in this and other such cases has paralleled the true outcome in the “John/Joan” case, which was the model for the imposition of feminizing surgery on young victims of “muti mutilations”. Given that Little Lucky’s gender-identity remained stubbornly masculine despite the surgery and imposition of a female gender of rearing, use of the term “pseudo-vagina” seemed to me to be justified as a description of what was created surgically in this and similar non-consensual cases and was intended to drive home the failure of the model on which the intervention was based. I would not dream of describing any intersexed person as a “pseudo-hermaphrodite” or describe a vagina produced by consensual vaginoplasty, whether on an intersexed person or on someone transgendered for that matter, as a “pseudo-vagina”.

The reference to dilation was in the context of the vaginoplasty imposed upon the toddlers in question. The remarks about painfulness for adults was based on what I have been told by a number of adult male-to-female transsexuals who have had vaginoplasty as part of gender reassignment surgery. My point, in the context of what I said at the workshop, was that there is a significant difference between dilation of the surgically-constructed vagina when the subject is someone who has made an informed decision to have the surgery and therefore has the understanding and maturity to cope with the pain, discomfort or whatever, as a means towards an unequivocally desirable end. For an infant or toddler, however, where there is no such choice or understanding, understanding and a personal choice made is not there to mark a difference between something which is intended to be life-enhancing at the end and a straightforward violation of physical boundaries which cannot be distinguished, in the infant’s or toddler’s uniniformed mind, from abuse. In her book Lessons from the Intersexed, Suzanne Kessler discusses this.

I should make it clear that I have no objection to vaginoplasty as such, provided that there is informed consent from the person on whom it is being performed; but I have strong objections to such surgery when it is non-consensual and to the pre-empting of informed choice entailed by the nonconsensual imposition of such surgery.

A further criticism of Miriam’s concerned the possible number of intersexed people in South Africa. It is often said by medical professionals that South Africa has the highest prevalence in the world. I therefore made an extrapolation based on the higher figure of one in five hundred for “intersexed to a significant degree”, as it were, in a US study conducted by Anne Fausto-Sterling and her students. At the workshop, the basis for the guess was made clear and I also made it clear that reliable stats were not available. Much depends upon how the term “intersexed” is defined, and the definition which undergirds Anne Fausto-Sterling’s figures for the US is a fairly broad one.

So: apologies if the report gave offence to anyone. I hope that the above remarks offer some clarification by putting reported “sound-bites” into context.

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Sally