Tuesday, September 16, 2008

Alice Dreger's unethical treatment of the intersex movement

By Curtis E. Hinkle

Background information

The intersex community has been severely duped and manipulated. The reason there was practically NO intersex participation in this DSD scandal that has been ongoing for quite a while now was because they most likely did not want any participation from people who might figure out what was going on and who was involved.

1) J Michael Bailey is a central figure in the Network on Psychosexual Differentiation at Penn State which resurrected the Disorder terminology in a psychosexual context. He spoke on different occasions at their meetings specifically on intersex and helped formulate their mission which includes the following:

“Develop or refine animal paradigms that model and help to explain the genetic, neuroendocrine, and social processes underlying both normal sex-typed behaviors and pathological behaviors observed in individuals with intersex conditions or gender-atypical behavior.”

2) Dreger and Chase then went about popularizing this terminology of disorders to the medical community outside the "psychology" and "psychiatric" community. We were told that medical doctors preferred the term "disorder". Well, they "prefer" it because that is what Dreger and Chase actually sold to them by publishing articles specifically on the reasons medical doctors should change to the term "disorder" as the preferred terminology long before most of us got wind of what they were doing.

3) Then Network members at Penn State and Northwestern "researchers" where Dreger and Bailey are located get all this funding that conflates the two issues - disorders of sex and disorders of psychosexual development.

4) Bailey is in BOTH groups and a CLOSE associate of Dreger and someone she has been defending. (Please note: I wrote "someone she has been defending", not that she was defending his ideas. However, she does defend a lot of his ideas also, many of which are quite repulsive to some intersex people - like surgical sex fetishes which is what Anne Lawrence appears to some of us to be into.)

Alice Dreger: Disorders of Sex Development, the history

Alice Dreger recently announced that she is resigning from the Consortium on the Management of Disorders of Sex Development (“The DSD Consortium”), and is trying to distance herself from the pathologizing terminology being used by that Consortium – as if she never had anything to do with it.

In a letter dated September 15, 2006 and addressed to "Dear handbook contributor", Dreger said:

"I am writing to let you know that I am resigning from the DSD Consortium and to make a few suggestions about avenues that might be pursued to further the work we did together. . ."

". . . Work on ways to ensure that the language of "disorders of sex development" does not result in negative experiences for people with DSDs and their families (Even while this language has allowed productive dialog, we have already seen that some affected individuals find this language to be stigmatizing and unnecessarily pathologizing). . ." – Alice Dreger

However, Ms. Dreger cannot rewrite history and escape her record as a major champion of the use of "disorders of sex development" (DSD) as the umbrella term for intersex variations.

Dreger is the editor-in-chief of the new ISNA handbooks which heavily promote that terminology, and it was to the contributors to those handbooks that she sent her recent letter:

Dreger is even credited by ISNA as being the prime mover who brought those handbooks forward:

“Perhaps most importantly, Alice acted as project manager and editor-in-chief for the DSD Consortium’s clinical guidelines and parents’ handbook. These groundbreaking consensus documents would not have happened without her extraordinary talents and efforts. She is continuing her work as Project Coordinator for the DSD Consortium.” – ISNA Website

Furthermore, Dreger’s job title at Northwestern University includes that very terminology:

Alice Dreger . . . serves as the project coordinator for publications of the Consortium on the Management of Disorders of Sex Development.

Perhaps most significantly, Dreger, as a new hire at Northwestern University, was the principal author of a journal article that began the Consortium’s process of popularizing their terminology as a replacement for intersex, both within and outside the medical community:

“Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale”, Alice Dreger et al, Journal of Pediatric Endocrinology & Metabolism, 18. (729-733 (2005).

Dreger’s disorders paper 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". It was that NICHD group of researchers, funded by NIH, who are behind the Northwestern/Penn State DSD Consortium that had hired Dreger:

As lead author of the “disorders paper” and as a spokesperson for the Consortium, Dreger became a staunch defender of that terminology, even as the early backlash developed (although using somewhat obscure logic in her defenses), as seen in a March 2006 ISNA blog entry:

We realize, of course, that any terminology including the word “disorder” can be construed as pejorative. We’d also like to emphasize that we use the abbreviated form of DSD whenever possible. Explaining why this is important, Alice Dreger writes, “we find that, when accompanied by an explanation of what we mean, DSD isn’t terribly stigmatizing. And an important point: the acronym DSD is very useful—and thus, the acronym should be favored over the spelled-out term— because as an abbreviation we don’t focus on ‘disorder’.” We explain what we mean, and then use the term “DSDs.” Thus, we recognize that this is not a perfect term, but we hope ISNA’s supporters and allies will understand that it’s helping us enact real change in medical care. – ISNA Website

Note: That entry has recently been removed from the ISNA blog page.

To counter the escalating backlash, Dreger and ISNA ramped up their efforts to promote the terminology on behalf of the DSD Consortium during 2006 – including helping with widespread dissemination of a so-called “medical consensus statement” published on May 4, 2006 and again in August 2006. However, contrary to all appearances, that “consensus” involved many medical DSD supporters but had almost no intersex representation.

“Consensus statement on management of intersex disorders”, by I A Hughes, et al; Archives of Disease in Childhood ac98319 Module 2 5/4/06:

“Summary of Consensus Statement on Intersex Disorders and Their Management”, Christopher P. Houk, et al; PEDIATRICS Vol. 118 No. 2 August 2006, pp. 753-757

“DSDs and the Chicago Consensus Meeting/Statement”, AISSG-UK

The terminology was then positioned for major national exposure, in a glowing article about Cheryl Chase in the New York Times on September 24, 2006:
"What if It’s (Sort of) a Boy and (Sort of) a Girl?"

However, those efforts have clearly failed, because of the huge backlash that has developed in the intersex community against such terminology – and as prominent researchers such as Prof. Milton Diamond made eloquent pleas for the use of less pathologizing language:

“Variations of Sex Development Instead of Disorders of Sex Development”,
Milton Diamond, ADC-Online, 27 July 2006.

Just one month before she announced her resignation, and now under obvious pressure, Dreger posted an entry in her blog entitled “My Identity/Politics”, in which she said:

“Do I sometimes take crap from people in identity rights movements (like the intersex rights movement) for being a supposed interloper? Sure, sometimes. But most people figure out that it’s a good thing to have someone capable helping out.” – Alice Dreger, 14 August 2006

By then many intersex people were asking themselves: “With friends like that, who needs enemies?”

And now, in the midst of an unstoppable backlash, Dreger has suddenly announced that she is resigning from the DSD Consortium – and goes on to criticize others for using the very terminology she has so widely promoted.

Here we have yet another interloper (her own word) who intrudes into the lives of intersex people and does great harm against us, without getting to know us in large numbers and consulting us, and without giving us a real voice through her writings. Then, when the going gets rough and the harm she’d been doing is exposed, she is now simply walking away - leaving it to others to clean up the mess she created.

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