Monday, August 18, 2008
Ambiguous Medicine and Sexist Genetics
Friday, April 18, 2008
Mutilations or non-consensual normalization treatments?
Wednesday, February 06, 2008
PRESS RELEASE: Congratulations to Christiane Völling
For more information about Christiane Völling's lawsuit:
http://www.intersexualite.org/Christiane.html
Sunday, January 28, 2007
New Website
http://www.intersexualite.org/oii-usa-index.html
http://www.intersexualite.org
Friday, October 06, 2006
The DSD Chronicles
http://www.intersexualite.org/Disorders_of_Sex_Development.html
and
http://www.intersexualite.org/AliceDreger.html
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
“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.”
http://nichdnet.psych.psu.edu/aims.html
http://nichdnet.psych.psu.edu/members.html
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
DSD: The Scandal Exposed
1: The Consortium
DSD Consortium: Homophobia and transphobia exposed
2: Cheryl Chase and ISNA
Cheryl Chase and Disorders of Sex Development (DSD)
http://oii-usa.blogspot.com/2006/10/cheryl-chase-and-disorders-of-sex.html
3: Alice Dreger
Alice Dreger: Disorders of Sex Development
http://oii-usa.blogspot.com/2006/09/alice-dreger-disorders-of-sex.html
DREGER IN DENIAL
Response from Michelle O'Brien to Dreger's e-mail sent to a few intersex activists
The Rhetorical castration of the Intersex community
4: Intersex activists start to revolt
DSD - Is there really a consensus?
Three intersex activists defend children against pejorative terminology
5: About the Guidelines and the Handbook for Parents
Handbook for Parents is transphobic and homophobic
6: DSD: Commentary
New Guidelines for Sex Development Disorders - Parody
7: DSD - Silencing Intersex Voices – International support letters:
Alice Dreger: DSD - Silencing intersex voices -
Alice Dreger: DSD - Silencing intersex voices -
Alice Dreger: DSD - Silencing intersex voices - France/Belgium and Luxemburg
Resist – Refuse to be a victim
Despite the efforts of some who would wish to make us think we are powerless, it is important that we refuse these messages. We are not powerless. We have made it this far and there are no obstacles that can obstruct the truth.
We have the right to speak.
We have the right to claim our rightful place in society.
We have the right to be heard.
We have every right to stand proud. Ours is a noble cause.
We have proved that we can resist and reject society’s shameful and stigmatizing exclusion of us. We have proved the content of our character.
We are winners. That is the message that we in OII-USA would like to send to our allies and supporters from all over the world who are joining us in our struggle against those who would pathologize us and not listen to us.
We have received support from
We are winners and we will win.
Thursday, October 05, 2006
The Rhetorical castration of the Intersex community
by Curtis E. Hinkle
Once again, we are in a similar situation. We are being told that intersex is NOT something that any child should have as a label and those in power, those that Dreger convinced by her own articles and activism to stop calling us intersex, are going to deny us this one small crumb of human decency – a name that we were beginning to feel proud of as we slowly worked through our shame and trauma. And it has been very alarming and chilling to witness the open castration of the intersex community in Dreger’s rhetoric of power in which she reminds us of our proper place – powerless victims of those who know how to speak about us, who know how to manage us and who will once again “assist” us as we go back into our shells, brutally scarred once again from the current struggle to have some place in society and some voice, and hide, hoping we can heal from this last major attempt to castrate all remnants of intersex voices.
This is not acceptable. Alice Dreger’s rhetoric is NOT empowering. I suggest that it is meant to make us feel powerless, to convince us that we are. This is not acceptable. It is in fact cruel to treat a marginalized and very damaged group of people in this way when she knows we are bleeding from this last operation performed by her and ISNA that stabbed into the very heart of our slowly emerging identity and sense of being a small part of humanity. It is as if we have once again been excised from public view, that our very fragile sense of community was crushed into total submission – the eternal eunuchs.
Another technique used by Dreger is to repeat and define the categories of people who do have power in the debate and by doing so, we are excluded from the debate about OUR lives, our identites, our BODIES. We have been told over and over that those with real power are:
PARENTS AND DOCTORS
NOT THE INTERSEX COMMUNITY
She has made it clear that she is a mother many times. She knows that many of us can never have children. We do not begrudge her the happiness that she has in being a parent but in addressing us and telling us that we need to speak to those in power which she defines as doctors and parents, it is very cruel to remind us that she is a mother, something that many of us would have so much wanted to be. It is a dual edged-sword this parental power rhetoric. It disempowers us by placing us in a category that most of us could never be in and then she reminds us that she is in that category.
Reminding us that doctors have power and most of us know that her husband is a doctor is also a two-edged sword. Equating power with doctors is something that is traumatically painful to many of us who remember the power they did exert over us and the very pain this abuse of power inflicted on our bodies and our souls.
We have been castrated publicly. This is cruel. We should reclaim our power and take the scalpels of privilege and stand proud and say NO.
We do have power and we will speak openly and proudly.
Quotes from recent messages from Alice Dreger to the Intersex Community:
"As a historian, I have to wonder whether a lot of the intense discussions among intersex adults is happening because it is something they can do. ... When you’re sitting on a closed-loop listserv, arguing with insiders who have not so much power, think about whether your time is better spent engaging those with power. Think about writing to doctors and telling them what happened to you and what you wish had happened to you. Think about providing positive, constructive support and education through the diagnosis-specific groups and through your community’s religious institutions, schools, and other non-profit organizations."
Talking about What Matters - Alice Dreger
"As I talked about in my recent blog on the terminology ..., I would really like to see people try to direct their writing, speaking, and thinking energies towards engagement with those with real power. That is not Curtis Hinkle, or for that matter most other intersex activists, including me. That is the doctors and the parents who need our help understanding how to make things better and better. That's why I spend the vast majority of my energy doing that kind of engagement and I encourage you to do the same, even as people whack at you (or your friends and allies) and try to distract you from your real work that I know you do so incredibly well--peer-support work, human rights work, educational work, medical reform work.:
E-mail sent to some intersex activists by Alice Dreger, October 1, 2006
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
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.
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
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
The Staging of a “Consensus Conference”:
Around the same time frame as publication of Dreger’s DSD paper, a “consensus conference” was staged in
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
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
San Francisco, CA 94102
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:
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
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 -
http://oii-usa.blogspot.com/2006/09/alice-dreger-dsd-silencing_115962212174035805.html
Alice Dreger: DSD - Silencing intersex voices -
http://oii-usa.blogspot.com/2006/09/alice-dreger-dsd-silencing_115962168229054001.html
Alice Dreger: DSD - Silencing intersex voices -
http://oii-usa.blogspot.com/2006/09/alice-dreger-dsd-silencing-intersex_30.html
Alice Dreger: DSD - Silencing intersex voices -
http://oii-usa.blogspot.com/2006/09/alice-dreger-dsd-silencing-intersex.html