Alice Dreger: Disorders of Sex Development

A report from OII, Edited by Curtis E. Hinkle

This information is now on our website and more user-friendly:

http://www.intersexualite.org/AliceDreger.html

September 26, 2006
http://oii-usa.blogspot.com/2006/09/alice-dreger-disorders-of-sex.html

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:

http://www.dsdguidelines.org/htdocs/clinical/index.html
http://www.dsdguidelines.org/htdocs/parents/index.html

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

http://www.isna.org/about/dreger

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.

http://www.medschool.northwestern.edu/mhb/faculty/dreger.html

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).

http://www.medhelp.org/ais/PDFs/Dreger-Nomenclature-2005.pdf

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:

http://nichdnet.psych.psu.edu/
http://nichdnet.psych.psu.edu/aims.html
http://www.intersexualite.org/English_OII/IAIA/IAIA_index.html

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

http://www.isna.org/node/1028

Note: That entry has recently been removed from the ISNA blog page. However, it is still online at the following cached mirror-site, and there is also a saved version in the OII archives, for those who wish to confirm this evidence:

http://tinyurl.com/gz57y

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:
http://www.medhelp.org/ais/PDFs/Chicago-Consensus-Statement-06.pdf

“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
http://pediatrics.aappublications.org/cgi/content/extract/118/2/753

“DSDs and the Chicago Consensus Meeting/Statement”, AISSG-UK
http://www.medhelp.org/ais/15_ANNOUNCE.HTM#16%20Aug%202006

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?"
http://tinyurl.com/jju2h

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.
http://adc.bmjjournals.com/cgi/eletters/91/7/554#2460

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
http://www.alicedreger.com/identity_politics

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.

Other related links on the DSD controversy:

Saturday, August 26, 2006
Three intersex activists defend children against pejorative terminology
Monday, September 11, 2006
DSD - Is there really a consensus?
Thursday, September 21, 2006
Handbook for Parents is transphobic and homophobic
Friday, September 22, 2006
DSD Consortium: Homophobia and transphobia exposed
Tuesday, September 26, 2006
Alice Dreger: Disorders of Sex Development
Thursday, September 28, 2006
DREGER IN DENIAL
DSD - Silencing Intersex Voices – International support letters:
Alice Dreger: DSD - Silencing intersex voices - United Kingdom
Alice Dreger: DSD - Silencing intersex voices - Canada
Alice Dreger: DSD - Silencing intersex voices - France
Alice Dreger: DSD - Silencing intersex voices - Switzerland