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Over 300 transsexual and transgender people and the professionals who work with them gathered in Ghent, Belgium for four days last week for the 18th International Symposium of the Harry Benjamin International Gender Dysphoria Association (HBIGDA). HBIGDA is particularly influential in transsexual medicine, as it produces the treatment guideline known as the "standard of care" that majority of physicians use in determining who can receive hormone and surgical interventions designed to help transsexual people "transition" to their preferred gender/sex. Over the last couple of years, there have been an increased interest in intersexuality within HBIGDA, although to this date HBIGDA seem to have made miniscule effort to dialogue with intersex activist groups.
In summer of 2001, intersex activists first became aware of HBIGDA's interest in creating an internal "intersex committee," not directly from them, but from professionals who were invited to take part in the committee (as far as we know, no intersex individuals have been invited). We got in touch with some members of HBIGDA we are friends with and asked them to keep us updated on HBIGDA's activities in this area. We are already in conversation with various medical societies and experts, and did not want to have to deal with yet another medical body unless they are working in collaboration with us. HBIGDA went on to survey its members regarding their interest in intersex medicine in order to determine whether or not the intersex committee was needed.
Which brings us to this year's symposium: In a morning plenary on September 12, Tom Mazur of the Children's Hospital of Baffalo, the tentative "intersex committee" chair, reported the outcome of the membership survey. According to several sources who attended the conference, Dr. Mazur reported that many HBIGDA members are indeed interested in learning about intersexuality and treatment for intersex patients, but there did not seem to be a mandate for HBIGDA to take active role in defining or redefining intersex treatment protocol. For example, HBIGDA members do not see themselves to be in the position to create a version of "standard of care" for intersex individuals. Needless to say, we were relieved to hear this. The board of HBIGDA approved the intersex committee as a formal committee of the organization to continue to explore how HBIGDA will be involved in the intersex medicine.
We at Intersex Initiative urge the intersex committee of HBIGDA to focus its energy on improving the medical care for those intersex people who are also transgender/transsexual (e.g. someone who was born intersex, and wishes to "transition" gender as an adolescent or adulthood). We know of several cases where physicians who are otherwise experienced in treating transgender/transsexual clients refused to prescribe hormones when they found out the patient's intersex status (they typically claim that they don't know the appropriate dosage or what it would do to someone's endocrine system when it's already atypical--folks, what about starting with a low dosage and monitoring carefully?). We frankly do not want HBIGDA to get in the middle of the discussions over intersex medicine in general; at the very least, we urge HBIGDA to work in close alliance with intersex activists should they choose to get involved there.
Other intersex-related highlights of HBIGDA symposium:
* Dr. Ken Zucker gave a presentation about the research on gender role and identity acquisition in people with intersex conditions. It is questionable if such a research has any use, as studying "intersex" as a group does not give us any meaningful information about the experiences of people with any particular intersex condition. We expect gender role and identity acquisition to be vastly different across various diagnostic groups, and grouping various conditions into "intersex" would simply average them out. No wonder Zucker found intersex people's gender roles and identities to be somewhat intermediate.
* A.B. Dessens and F.M.E. Slijper of the Netherlands reported that the most 46XX individuals born with classical CAH (congenital adrenal hyperplasia) continue to live as women into their adulthood. Duh.
* Contrary to the oft-cited report by Dr. Julianne Imperato-McGinley, Dr. P.T. Cohen-Kettenis from the Netherlands reported that many individuals born with 5-alpha reductase deficiency syndrome or 17-beta hydroxysteroid dehydrogenase and raised as girls often continue to identify as female after puberty.
* Among small the group of participants Tom Mazur came across, no women born with complete androgen insensitivity syndrome transitioned to live as men; among partial AIS population, Mazur found one case each of people transitioning from male to female and female to male.
* Dr. Heino F.L. Meyer-Bahlburg of Columbia University surveyed many cases in which young non-intersex boys were re-assigned as female after their penis is damaged in one way or another. Meyer-Bahlburg reports that while some of these individuals--like David Reimer from the famous "John/Joan" case--revert back to male when they grow up, many actually continue to live and identify as women.
* Someone from the Dutch AIS group spoke at the conference. One of her presentation panels stated: "don't just talk about us--talk with us." That sums up our message to HBIGDA as well.
Posted by Emi on Sep 20, 2003