Tuesday, September 16, 2008

DSD: North American Medical fascism and manufacturing consent

by Curtis E. Hinkle

One of the most important questions to ask concerning the controversy surrounding the term “DSD”, Disorders of sex development, as a replacement for intersex is a simple one. Why do we need to have a name at all? Why do we need to have a diagnosis at all? Other important questions include who is naming us and for what reasons? Does this have anything to do with us at all? Should it even concern us?

In the last several years, many people who are not intersexed have been working to come up with a new term to replace the term “intersex”? It is interesting that we in OII have found almost no intersex people that were actively involved in this search for a new term. We have found almost no intersex people who had previously been writing articles and scientific justifications for replacing the term intersex with the term “Disorders of Sex Development”. We therefore conclude that the search for a new term was something of intense importance to people who are not intersexed but of little or no importance to intersexed people themselves. The only exception that I can document is Cheryl Chase, the one intersexed person who co-authored the following article with Alice Dreger and Dreger’s husband, Dr. Aron Sousa.

“Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale”, Alice Dreger et al, Journal of Pediatric Endocrinology & Metabolism, 18. (729-733 (2005).
In this article, the authors propose replacing the term hermaphrodite and the 5-sex system which divides humans into females, males, true hermaphrodite, male pseudohermaphrodite and female pseudohermaphrodite with the term “disorders of sex differentiation” (later changed to disorders of sex development) because this would work better in a medical context. What is so problematic about this article which was seminal in the shift from intersex to DSD is that there is no challenge to the assumption that intersex variations need to have a medically accurate name at all. The whole article is based on the assumption that sex variations are indeed pathological and require treatment. However, the article gives no proof at all for such an assumption and that is the serious contradiction in the arguments put forward in the article. Any serious medical conditions that a person who is not standard male or female has are exactly the same medical conditions that standard males and females have. The more important question would have been to focus on medical conditions that actually do affect people who are intersex and explain how these might require slightly different medical treatments than in a person who is not intersexed. However, this article assumes that one’s sex variation is the disease to be treated and never challenges that assumption and it concludes by suggesting that one approach would be to use etiology-based diagnoses. (1)

For years both Dreger and Chase stressed that intersex was not a pathological condition but a biological variation. “Intersex is a socially constructed category that reflects real biological variation.” (2) If this is so, it is also obvious that the shape and size of one’s nose is also a biological variation just as the size and shape of one’s clitoris. If a person wishes to change the size and shape of one’s nose, that is available to them and there are surgeons who will do these operations for them. There is no group I am aware of that is coming up with an umbrella term to include all nose variations in the population which would make all these variations a medical pathology and which could justify changing the shape of noses without the consent of the person with the nose. Parents can still have cosmetic surgery on a child’s nose if they feel it will prevent their child from functioning well in society. There could be an argument made that nose shape and size could be more stigmatizing than the size of one’s clitoris or penis because we usually present ourselves in public with our noses exposed.

Despite the good intentions that are expressed in this article, the medical emergency that intersex supposedly represents is what is the focus for justifying the change of the terminology. In this article, the emergency now is coming up with a medical diagnosis which will classify all variations of sex development so that people with this “medical emergency” can get better treatment. But shouldn’t the more basic question be to ask why this is being treated at all? That is not the case.

Dreger’s article promotes the use of the old-time medical phrase “disorders of sexual differentiation" (later changed to “development”) – using the straw man of “hermaphroditism” as if it were the word being replaced (instead of intersex being the word they wanted to replace):

In conclusion, we suggest the language of ‘hermaphroditism’ and ‘pseudohermaphroditism’ be abandoned. One possible alternative . . . is to use instead . . . the umbrella term “disorders of sexual differentiation”. Such an approach would have the salutary effects of improving patient and physician understanding and reducing the biases that are inherent in the use of the current language of ‘hermaphroditism’. – Dreger et al.

That old medical terminology had been adopted in 2003 in the mission statement of "The Network on Psychosexual Differentiation" and the Johns Hopkins. It was that NICHD group of researchers, funded by NIH, who are behind the Northwestern/Penn State DSD Consortium that had hired Dreger:
It would appear that the Johns Hopkins Medical University (responsible for all the traumatizing experiments on intersex children by Dr. John Money and the theories he developed which continue to justify irreversible sex assignment surgeries) has a vested interest in protecting itself from the possible litigation that could have been directed against them and it was the Johns Hopkins Medical University which started using the "disorder" terminology even before the NICHD. It is also interesting to note that the author and central figure in this shift in terminology, Alice Dreger, is the associate editor of one of the official publications of the Johns Hopkins University Press. (3)

There seems to be a conflict of interest on Dreger’s part. And if you read her articles closely this conflict of interest will become more and more evident. What appears at first to be a move towards depathologizing intersex starts being seen for what it really is – a way of pinning down intersex and ALL variations of sex differentiation as an illness.

In a recent lecture at the Kinsey Institute that Alice Dreger entitled: "No Matter How You Slice It? Parsing Intersex", Dreger stated:

“A couple of people at my Kinsey talk pressed me about the terminology and asked me to work more on trying to find a new, better term. What about, for example, "variations of sex development," as some have suggested? Honestly, I don't see that term flying in the medical system; I've asked about it, and it doesn't go anywhere. Part of the reasonable fear among medical professionals is over-de-pathologizing sex anomalies. . .” (4)

Sophie Siedleberg responded to Dreger's pathological defense: "Reasonable fear of de-pathologizing sex anomalies? Like what is that supposed to mean? That doctors are upset because some people object to terminology that in law allows the doctors to slice, dice and rotate children on a spit or something?" (5)

Is there a need for name for sex variations at all? Many people will not feel there is and feel comfortable with the terms male and female but to others the term intersex appears helpful and has been working well for many of us. It is to be noted that no one is imposing this term on anyone. It is not a legally imposed sex and intersex activists are not working to impose this term on people in a medical context either. Nothing could be further from the truth. People born with sex variations are free to consult doctors for problems which affect their health but does that give them the right to work to impose medically defined pathologies on all people who are born with sex variations who see their body as a natural variation, not a medical emergency? The fact is that there are almost no intersex people involved in doing this. It is people like Dreger who is not intersex and medical doctors and parents who are behind this and we should hold them accountable and ask them why they want to humiliate us and pathologize us.


1. Page 733. “Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale”, Alice Dreger et al, Journal of Pediatric Endocrinology & Metabolism, 18. (729-733 (2005).
2. What is intersex? http://www.isna.org/faq/what_is_intersex
3. According to the official site for the journal Perspectives in Biology and Medicine, the Associate Editors are Alan N. Schechter and Alice D. Dreger.
(4) Dreger, Alice.
Why “Disorders of Sex Development”? (On Language and Life)
(5) Siedlberg, Sophia. Treestumps and Broomsticks. http://www.intersexualite.org/Siedlberg.html#anchor_12

Monday, September 15, 2008

Disordering the lives of children

by Curtis E. Hinkle

We are no longer called hermaphrodites. We are no longer called intersexed. We are all men and women with disorders of sex development according to many of the medical experts who have managed our lives over the past decades. We now have a new Consortium for the Management of Disorders of Sex Development and they are proposing to manage the lives of future children born with this disorder. What are the risks involved with this change in terminology? I think there are many.

Is intersexuality normal? No. However, it is totally natural and not life threatening in most cases. There are so many different phenomena in our natural world that are not normal. Our world is filled with people who are not normal in one way or another. However, what criteria do we use to judge whether these natural phenomena are disorders or not? What criteria do we use to determine if a natural variation in the human population is good, bad or neutral? I don’t have the answer to these questions because there seems to be no precise answer. It varies with the person making the judgments. I feel that there are two main questions to ask before judging behaviors, variations and other phenomena in the natural world. Are they harmful to society and if so why? Do they pose a serious risk to the individual and if so why? If the reason for the risk to the individual is simply society’s reaction to the issue and not any real threat to that society, then is it the individual who should be deemed disordered or the reactions of those judging the individual? I think that it would be most likely that the problem is within the one judging the individual, not the individual being judged.

Now that the managers of disorders are ready to start treating children with these disorders of sex development, I have a few questions about how this pejorative terminology will actually be explained to the child and the consequences of such pathological views that will be used to explain not only the physical sex of the child but the implications this will have on all aspects of the child’s life associated with sex, those being their gender identity, gender role, sexual orientation and actual health needs.

Once a parent is told that their child has a disorder, they most likely will assume there must be some treatment to either cure or manage this disorder. The consortium is not holding out a cure because this is not something that can be cured or needs to be cured in my opinion. However, they will become managers along with the parents. Are they becoming managers just of the child’s body which is the initial reason for the diagnosis? No, they are becoming managers of all aspects related to sex in the child’s life, their gender and their orientation. What starts out as a physical disorder to be managed is now viewed as a possible psychological problem with other disorders that could become evident if the child does not comply with the gender imposed and also we have the undercurrent of homophobia. Some of these managers may inform the parent that their child is more likely to be homosexual as a result of the disorder which could make a lot of parents think that the homosexuality is also a disorder, part of the original diagnosis when told their child has a disorder of sex development.

There are many people who do believe that homosexuality is a disorder and they are involved in research to prove it. They may not use the word “disorder” at this time but when links are made with intersexed children, it would be much easier to introduce this concept of homosexuality being a disorder also. Once you decide that certain variations of sex development are disorders, then most behaviors closely connected with that group could be viewed as part of that disorder.

When would a manager of the child’s disorder reveal to the patient that they had a disorder of sex development? How could this be done in such a way that the child does not feel that puberty, identity and other essential aspects of their lives would not be disordered also? I don’t think there is. The very term “disorder” implies that compliance with the protocols will be essential not to be disordered, not to have a disorderly life and that the managers are the only ones who have the solution. But they are not living in the body of the child. They are not living in the mind and heart of the child. Children do not have the words or the experience to understand sex, gender and orientation.

When speaking with children, one needs to keep it simple. This is why I like Dr. Hazel Beh’s and Dr. Milton Diamond’s suggestion that we use the term variation. It is easy for a child to grasp that boys and girls come in all varieties. They can look around them and see that there are all kinds of boys and girls but that each kind or variety is not necessarily a bad thing or a good thing. We are just all different. What is damaging to a child is to feel that they are not just a different kind of boy or girl but that they are a disordered or defective boy or girl. This has very serious implications for the child and could make their future development even more stigmatic and traumatizing while interacting with those in control of their bodies.

Every feeling the child has could be internalized as part of the disorder and something else that needs management and which is shameful. Not feeling like other boys or girls, not looking like other boys or girls and not having a sexual orientation that is like most other boys or girls could be and most likely will be interpreted by the child as part of their original diagnosis, part of their disorder of sex development.

Welcoming children into our lives is a wonderful gift for many of us. Watching them grow and holding out a helping hand not only enriches our lives but builds character and strong bonds which overall helps society as a whole. Let’s give intersexed children the assistance they need to live in a world that does not understand them and make sure we do not simply manage them and further damage them with pathological, pejorative terms which make them not only feel different but defective and defective in one of the most essential parts of what our society has deemed all people must be to be fully human – their sex.