The Euro DSD Project

With Sophia’s permission.  Sophia is an internet friend of many years and may lists.  She is brilliant and a great ally.

By Sophia Siedlberg.

16 January 2009

It is my belief that it is time to step out of the gutter and to try to discuss our concerns (and objections) with real academics instead of sexologist hacks. Dr. Olaf Hiort is the head of “Euro DSD” which to date has been raising some concerns in Europe. I am I admit very concerned myself and hope that Dr. Hiort will take the time to discuss with those patient groups he is dealing with and in particular those who do not agree with the underlying ethos of Euro DSD.

The main concern with Euro DSD and Dr. Hiort himself appears to be that while Euro DSD seems to gain funding and increasing prominence, the fact that this organization has close ties to the ethical framework of the Clarke Northwestern, has caused many patient groups to fear that Euro DSD will be motivated more by social cleansing than actually providing a framework for healthcare that covers inetersex people and their concerns.

In Europe, there is a far deeper fear of the sort of ideas the Clarke Northwestern represent. Eugenics being the main cause for concern, do Euro DSD advocate de-centralized, market driven eugenics of the sort the Clark Northwestern ascribes to? Or “Parantal choice” to use Alice Dreger’s euphemism? Are the motives of Euro DSD about normalization at all costs?

Well, I am going to avoid expressing my instinctive reaction until Dr. Hiort responds (or fails to respond) because I do feel that it is only fair to let Dr. Hiort outline which direction he intends to go with the Euro DSD and what the underlying agenda actually is. I would also like to remind Dr. Hiort that he will also not be able to blind me with science, and statistics. I will take the time to study, in close detail what he has published to date and what scientific framework he is using.

The primary reason why these unpleasant questions land on his doorstep lies in the fact that his organization has taken its name from the Clarke Northwestern clinical model of intersex healthcare. “Disorders of Sex Development”. A lot of European patient groups associate that with the Clarke Northwestern agenda, and all the gutter “debate” that has been going on through controversy after controversy over a group of sexologists and one geneticist who seem to regard intersex people as disordered or less than human.

There are also many concerns about some of the European specialists, in particular Dr. Claire Nihoul-Fékété, a surgeon based in Paris who has a rather bad reputation for conducting surgery on children, who when they grow up objecting to it, are as good as silenced. I am led to understand that Dr. Claire Nihoul-Fékété is somewhat feared by some in the community because of her status.

Again I am hoping that she takes the time to engage in dialogue and explain what her ideas are and what her working philosophy actually is. If her reputation is as bad as I have heard it to be, I will say now that I will not put up with any of the sort of nonsense I had to endure from the Clarke Northwestern, and I am very serious about this. I want to make this clear that this is not some witch hunt, (as the Clarke Northwestern have portrayed it to be) but a pressing need for constructive dialogue. As it stands at present, a lot of intersex people genuinely feel a deep sense of threat. I can see why this is so and hope that Dr. Hiort can start to allay a lot of fears by talking to those who are feeling deep concern about these developments. I am sorry that this may appear a bit harsh or confrontational, but given the recent experiences of the Clarke Northwestern, and how some (Alice Dreger) have pulled the debate into the gutter, I am hoping that the European experience will not be the same, given that Dr. Hiort is a more serious clinician and academic who I feel is capable of engaging in a more reasonable debate.

As of today I am planning to start a European discussion group that is specifically about Euro DSD. I will invite all those intersex activists who have concerns about Euro DSD to join and hope that representatives of Euro DSD will accept my invitation to them as well. We need to discuss this situation as it is developing and to come to some sort of mutual understanding.

I would strongly advise Dr. Hiort to engage his present critics in discussion or at least appoint a representative for this role, so that discussion can begin. The group “Euro IS” will be started, regardless of whether or not Dr. Hiort decides to engage with us. I just hope that he does accept our invitation when it is made and takes the time to talk.

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