Monday, October 02, 2006

Cheryl Chase and Disorders of Sex Development (DSD)

A report from OII - USA, Edited by Curtis E. Hinkle
October 2, 2006

http://oii-usa.blogspot.com/2006/09/cheryl-chase-disorders-sex-development.html


Background:

For many decades medical geneticists and endocrinology researchers have quietly conducted research and published papers on what they’ve long called “disorders of sexual differentiation” (now more commonly known as intersex conditions).

That medical terminology thus goes back to an earlier time – a time in the 1950’s and 60’s when anything but a strictly bipolar male/female physicality, gender or partnering was considered disordered – a time when even homosexuality was considered a mental pathology.

The Rise of ISNA:

In 1993, intersex activist Cheryl Chase founded the “Intersex Society of North America” (ISNA), and began lobbying the surgical and pediatric communities to bring a halt to the practice of “normalizing” genital surgeries on intersex infants, which, of the many concerns we intersex people have, was Chase’s preeminent concern.

http://www.isna.org

Over time Chase’s personal crusade to stop such surgeries, of which she herself had been a victim, gained the attention of large numbers of people in medicine, psychiatry, and psychology. She also proved to be a skilled fund-raiser and ISNA gained substantial support from major donors and philanthropic organizations.

By 2003, Chase’s impassioned writings, lectures and advocacy efforts had helped her build deep ties all across the medical community.

Instead of functioning as a grass-roots intersex community organization and mostly interacting with intersex people, Chase instead sought attention, respect and recognition by the medical community – in order to most effectively lobby for a cessation of infant genital surgeries. A recent story in the New York Times confirms the extent of Chase’s connections in the medical community, as follows:

“Chase has talked to thousands of doctors and others in the medical profession, making the case that being born intersex should not be treated as shameful and require early surgery.”

http://www.nytimes.com/2006/09/24/magazine/24intersexkids.html

The Reification of DSD:

Chase’s medical connections included ties to a nascent coalition of university-based genetics and sexology researchers called "The Network on Psychosexual Differentiation" – a network of people interested in studying “sexual disorders”. Helping make those connections was Alice Dreger, a member of the ISNA Board who had connections in that research clique, especially at Northwestern University and at Penn State University.

The “Network on Psychosexual Differentiation” was supported by the NICHD to develop a research program all across the field of “sexual disorders”, which NIH could then use as a roadmap for making later larger research grants to the various Network members.

In a meeting in October, 2003, the “Network” adopted the old medical terminology of “disorders of sexual differentiation” as a key descriptor in their “mission statement”. That terminology then became deeply embedded in all their proposals, program descriptions and published papers:

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

In parallel with the Network’s activities, Dreger and Chase at ISNA began work on a set of handbooks regarding the care and treatment of young intersex people – and at some point formed the “DSD Consortium” to promote these handbooks and to promote the DSD research. In doing so, they made a coordinated adoption of the DSD terminology in parallel with the NICHD Network’s adopting that same terminology.

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

Dreger then became the principal author (with Chase as a co-author) of a journal article that began the Consortium’s process of popularizing the DSD 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 promoted the use of the old-time phrase “disorders of sexual differentiation" (later changed to “development”) – by 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.

A Backlash begins:

The publication of that paper by Dreger and the use of “DSD” by the DSD Consortium and the NICHD Network, led to the beginnings of a backlash in the intersex community against the adoption of such retrograde, old-time terminology.

As lead author of the disorders paper, Dreger reacted by going on the defensive, to prop up the terminology, 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

The Staging of a “Consensus Conference”:

Around the same time frame as publication of Dreger’s DSD paper, a “consensus conference” was staged in Chicago (in October 2005) by selected members of the medical community - to officially determine a new term for intersex people.

The resulting “consensus statement” involved the participation of many supporters of DSD terminology, for by now ISNA and the NICHD Network and the DSD Consortium had promoted that terminology very successfully in medical circles.

There was no grass-roots representation of the intersex community at the “consensus” conference, and our community was clueless that this was even going on back then. However, the word sure got out in May 2006, when the “consensus statement” was openly published:

“Consensus statement on management of intersex disorders”, by I A Hughes, et al; Archives of Disease in Childhood ac98319 Module 2, May 4, 2006:

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

Alarm Bells Ring:

Alarm bells began to ring as word of this so-called “consensus” spread through the intersex community. Intersex people around the world alerted allies in the research community to ask “How could this have happened – especially without widespread intersex participation?"

Rapidly growing concerns among allies in the research community then led prominent researchers such as Prof. Milton Diamond to make 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

Further escalation of the backlash might have been avoided, if discussions had been opened at this point, between the DSD Consortium and the many intersex advocacy organizations, about Prof. Diamond’s key idea: Why not simply replace “disorders” with “variations”?

Chase Goes on the Defensive:

However, by now it was too late. DSD was too widely embedded in the ISNA publications and DSD Consortium and NICHD Network research programs, proposals and publications – and in planned public events and media articles that were by now on their way.

By now Chase was also taking the pushback quite personally and becoming angry about the actions of the “intersex activists”, as Dreger called anyone who disagreed with the use of DSD.

Chase began defending DSD even more aggressively – including appearing at the AISSG-USA Annual Meeting, August 4-6, 2006, and handing out a brochure explaining her reasons for supporting the terminology. In the process, Chase revealed some very dark things about ISNA ideology – things our community has long been aware of, but that now need to be looked at more closely.

As documented in her brochure, the bottom line of Chase’s defense of the old-time DSD terminology is that:

“Intersex” has been embraced by groups with a variety of social agendas not focused on improving medical care. Whether or not you support these agendas, it’s confusing to label a patient’s medical condition with a label that implies an agenda of radical social change. Some of these include:

• people who want to prove that homosexuality is a normal variation

• people who want to prove that transsexuality is a normal variation

- From “Why change the medical nomenclature?” By Cheryl Chase

Here Chase makes an appeal to return to the old-time, pathologizing medical terminology – saying that the newer term “intersex” might be confused with agendas of “radical social change”, such the normalization of homosexuality and the normalization of transsexualism.

Does this sound like homophobia and transphobia to you? It sure does to us.

A Fait Accompli?

But Chase did not stop there: The consensus statement was given more publicity in the pediatric medical community in August 2006 – in a publication which further gave the impression that this was an “intersex consensus”, as if it HAD involved widespread participation by the intersex community:

“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 also given national media exposure in a glowing article about Cheryl Chase in the New York Times on September 24, 2006 – and article that made extensive use of “DSD”:


"What if It’s (Sort of) a Boy and (Sort of) a Girl?"
http://www.nytimes.com/2006/09/24/magazine/24intersexkids.html


Those publications gave the appearance of a “fait accompli” in terminology, and the intersex community now seemed powerless to stop it. However, the staging of DSD promotion events wasn’t over; there was even more to come.

The Staging of the DSD Symposium at the GLMA Conference:

Without intersex community knowledge or involvement, Chase had also arranged for an entire “DSD Symposium” to be staged as part of the Gay and Lesbian Medical Association (GLMA) Conference, on October 14, 2006.

The intersex community only heard about this Symposium “about us” when one of us noticed the GLMA conference schedule (showing how out of contact ISNA has become with our community – and in this case perhaps intentionally so):

http://www.glma.org/index.cfm?fuseaction=Page.viewPage&pageID=559
http://www.glma.org/index.cfm?fuseaction=Page.viewPage&pageID=560
http://www.isna.org/node/1089
http://www.isna.org/dsdsymposium2006/program

When many of us asked GLMA if they were aware of the controversy surrounding the DSD terminology, and of how pathologizing it was towards intersex people – the folks at GLMA appeared dumfounded, and said “we’ll look into it”.

Thus we discovered that well-intentioned but clueless gay and lesbian organizers of the GLMA Conference have given center-stage at the conference to the medical pathologizers of intersex people – where they can make pronouncements about how to “manage disorders of sex development” – i.e., how to “manage” the lives of intersex people.

Things to Do:

We need to let GLMA know that we do not appreciate being blindsided this way, as if we didn’t even exist, and then left with no voice in these important discussions about our fates. You can direct your comments to:

Joel Ginsberg, JD, Executive Director

Gay and Lesbian Medical Association

459 Fulton Street, Suite 107

San Francisco, CA 94102

jginsberg@glma.org

www.glma.org

PS: You might also ask Mr. Ginsberg whether GLMA supports the ISNA pronouncement that “people who want to prove that homosexuality is a normal variation” are engaged in “an agenda of radical social change”. That sure sounds like homophobia to us. Maybe it will sound that way to GLMA too.


Links to Related Pages:


OII Articles on the DSD controversy:

Monday, October 2, 2006

Response from Michelle O'Brien to Dreger's e-mail sent to a few intersex activists

Saturday, August 26, 2006

Three intersex activists defend children against pejorative terminology
http://oii-usa.blogspot.com/2006/08/three-intersex-activists-defend.html

Monday, September 11, 2006

DSD - Is there really a consensus?
http://oii-usa.blogspot.com/2006/09/dsd-is-there-really-consensus.html

Thursday, September 21, 2006

Handbook for Parents is transphobic and homophobic
http://oii-usa.blogspot.com/2006/09/handbook-for-parents-is-transphobic.html


Friday, September 22, 2006

DSD Consortium: Homophobia and transphobia exposed
http://oii-usa.blogspot.com/2006/09/dsd-consortium-homophobia-and.html

Tuesday, September 26, 2006

Alice Dreger: Disorders of Sex Development
http://oii-usa.blogspot.com/2006/09/alice-dreger-disorders-of-sex.html


Thursday, September 28, 2006

DREGER IN DENIAL
http://oii-usa.blogspot.com/2006/09/dreger-in-denial.html


DSD - Silencing Intersex Voices – international support letters:


Alice Dreger: DSD - Silencing intersex voices - United Kingdom
http://oii-usa.blogspot.com/2006/09/alice-dreger-dsd-silencing_115962212174035805.html


Alice Dreger: DSD - Silencing intersex voices - Canada
http://oii-usa.blogspot.com/2006/09/alice-dreger-dsd-silencing_115962168229054001.html


Alice Dreger: DSD - Silencing intersex voices - France/Belgium and Luxemburg
http://oii-usa.blogspot.com/2006/09/alice-dreger-dsd-silencing-intersex_30.html


Alice Dreger: DSD - Silencing intersex voices - Switzerland
http://oii-usa.blogspot.com/2006/09/alice-dreger-dsd-silencing-intersex.html

1 comment:

SaraH said...

Anyone involved in a experiment with Sherri Berenbaum of Penn State should be aware that individuals in the longitudinal study involving CAH are raising questions about the ethics displayed in her experiment.