The DSD Chronicles

Visit OII's website which has pages devoted to the DSD controversy, Alice Dreger and J Michael Bailey

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 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.”

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 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.

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

IAIA’s home page

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

Medical Fraud and Quckery

New Guidelines for Sex Development Disorders - Parody

7: 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/Belgium and Luxemburg

Alice Dreger: DSD - Silencing intersex voices - Switzerland

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 Canada, the United Kingdom, France, Belgium, Luxemburg, Switzerland, Israel, Argentina, Brazil, Spain, Sweden, India, the United States, Australia, New Zealand and from many different groups and organizations around the world. We wish to thank them from the depths of our heart and let them know that with their help:

We are winners and we will win.

The Rhetorical castration of the Intersex community

An analysis of Alice Dreger’s Rhetoric of Power as applied to the DSD controversy

by Curtis E. Hinkle

First of all, it is very hurtful and in fact traumatizing to many of us in the intersex community to have an intersex activist who is not intersexed to tell us repeatedly that we are powerless. This is what Alice Dreger has now been telling us for several days. For many of us, this is part of the very damaging and stigmatizing messages we have received since early childhood. Our only hope for any sense of control over who we were and what was to be done with our bodies and our very sense of self was to retreat, to withdraw, hoping that by becoming invisible we could avoid further harm. Our families helped us in most cases by actually reinforcing the conspiracy of lies about who we were and only made the shame and powerlessness we felt as children seem justified. What we were was so shameful that we could not speak about it. We could not dare say what we were. We were just beginning to move beyond this paralyzing shame.

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

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

http://oii-usa.blogspot.com/2006/10/alice-dreger-dsd-update-and-response.html

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

Alice Dreger: DSD - Update and response from the OII-UK

The following is an e-mail that Alice Dreger mailed to some intersex activists. What follows is a response from Michelle O’Brien, OII-United Kingdom

----------------------------------------------------------------------

From: "Alice Dreger, Ph.D."
To: Recipients’ Names removed
Subject: DSD terminology
Date: Sun, 1 Oct 2006 09:58:56 -0400

Folks,

I hope your intersex rights work is going well as I write. As always, I personally appreciate what you're doing to help build a better world for intersex children and adults.

I see that Curtis Hinkle is up to his usual behavior, this time attacking me personally about the DSD terminology. I want you to know one thing, and then to make a suggestion.

The thing I want you to know is that I pissed off trans activist Andrea James (see http://www.alicedreger.com/in_fear), and as a result she decided she would try to attack me via attacking the DSD terminology. She told me this explicitly in an email on June 1, 2006. I quote: "I could care less about your kid and your sense of breeder entitlement. I am, however, going to do what I can to discredit your lame-ass DSD model. At least you got that part right."

I also quote here from her email of May 27, 2006: "DSD is going to be your merm and ferm. You have made a spectacular misstep with this disease model, though still not as inept as Bailey’s. Can’t wait till you and DSD are discredited by intersex activists (e.g., the world outside ISNA) and top-tier ethicists (e.g., not you) looking at the bigger picture. Your one-issue advocacy is selling out a larger movement for the sake of expediency. Bad move, mommy."

So besides sending me threats about my son, James has opted to team up with Curtis to achieve her aims. Hence her links to Curtis's work on her general-attack site.

I want you to know this because I think a lot of intersex people are in danger of having their progressive energies sucked up by an offshoot of James's attempts to irritate and discredit me, which are offshoots of her attempts to ruin other people.

That said, I do think it is definitely worth having productive discussions about the DSD terminology and when it is worth using, and I'm glad people are taking about it.

So my suggestion is this: When you're engaged in discussions about this, PLEASE do not waste time discussing what I think or what I have said or anything else about me. Focus on what matters -- intersex people and their well-being. It doesn't matter what I think or say, except insofar as perhaps some people wish to know how I see the debate. What matters is how well people with intersex are.

So please try to keep the discussion focused on what really matters, and that way James won't be harming the intersex community the way she has so tragically harmed the transgender community. (You won't know about a lot of that harm, but I do, because since I spoke up, many trans people have written to me to tell me what she's done to them. They are much too afraid--for obvious reasons--to speak publicly about what she's done to them.)

As I talked about in my recent blog on the terminology (http://www.alicedreger.com/dsd), 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.

Please feel free to share this email with whomever you wish. I also welcome those of you who have my DSD resignation letter to go ahead and leak the rest of it; there's nothing in there or any of the rest of my work that I'm not proud of. Indeed, I'll attach the letter here so you all have the whole of it.

It has been my great privilege and honor to be so well advised and supported and led by you and your colleagues.

Best wishes,
Alice

Alice Dreger, Ph.D.
Medical Humanities and Bioethics Program
Feinberg School of Medicine
Northwestern University

-------------------------------------------

Response from Michelle O’Brien, OII-UK

Recently, I have been hearing about how Dr. Dreger is spreading rumours amongst people who are sympathetic to OII and unhappy about the new terminology she has been involved in consolidating, that this all has something to do with a Ms. James. Let it be made quiet clear that I have nothing to do with Ms. James, and have never had any conversations with her; I am not aware that she has anything to do with OII.

Here in the UK, as far as I am aware, beyond her website, Ms. James has little relevance to the trans community – let alone intersex people. I do not approve of some of methods in relation to Prof. Bailey (but I think I understand why) detailed in Dr. Dreger’s Blog.

The taking-issue about the terminology of disorder is something that has emerged from discussions within OII & other intersex groups, and has not been inserted by anyone outside seeking to cause disruption. If the allegations in her latest e-mail to certain intersex activists about recent private correspondence between Dr. Dreger & Ms. James are genuine, then it would appear that Ms. James is quite perceptive in being able to see where that new terminology would lead. Anyone can link to OII’s website; a link from another website in no way means that there is collaboration between two sites – simply that there may be points of intersection in the eyes of the linking site.

Dr. Dreger should be addressing facts, not rumour-mongering. To work behind the scenes seeking to undermine people’s credibility displays a distinct lack of integrity, and only serves to undermine her credibility further. It adds weight to the concerns I and others have expressed about the way the exclusive Prof. Bailey list at NWU she is a member of works. Instead of discussing these matters openly, and consulting with those affected, embracing intellectual discourse, she and others are choosing to operate more like a politburo which disseminates party dogma and carries out character assassination.

Here in the UK, some very unpleasant situations have arisen because of the way Animal Rights extremists have responded to what they regard as the extreme mistreatment of animals. Personally, I have no strong views on this matter, but I can understand why some people would want to protest practice in this area; I have no idea how people can go to the extremes that they do in their actions, but they do – and it is intolerable. However, what we have seen time and again in this country is that every time there is some atrocity carried out by Animal Rights extremists, somebody who is operating within the legal framework is pulled in to the media and asked how they can defend this sort of behaviour. They usually make it clear that they do not support extreme activity, and explain what their role is and what they are seeking to change. Yet, the insinuation is that these peaceful activists are in some way connected with those at the extremes. Guilt is by association, not of persons, but of issues.

People will believe a big lie easier than a little one; if you keep repeating it people will come to believe it. It is a propaganda technique first articulated by Hitler, then by Gobbels about Churchill, then by OSS about Hitler, and by Kevin Kostner in his film ‘JFK’.

I see this recent insinuation by Dr. Dreger as a similar smear tactic. Tell people Curtis & OII are irrelevant enough times, rather than asking why you need to be saying this if they are, rather than asking why a group of intersex people should not be listened to in a debate about these issues (rather than experts like her and her medical superiors), they might come to believe we are irrelevant. Tell people Curtis & OII are puppets of Ms. James enough, and they might start believing it. Insinuate that OII are extremists and political activists who support the sorts of extreme behaviour that Ms. James is supposed to have done (things that any reasonable person would condemn), and they might believe it. Tell people that OII believe in a third gender, no medical treatment for any intersex issues, non-assignment of intersex children, or that Lee Harvey Oswald was part of an intergalactic plot by beings from a planet in the Sirius system to take over the world – make the lie big enough and keep repeating it, and people might believe it.

Well, this is simply not true, Dr. Dreger, and I am calling it out into the open. I for one would like to know the truth about this myself. There are many people who disagree with Prof. Bailey, but they do not carry things to extremes. There may have been actions carried out by Ms. James that are inexcusable, for all I know, particularly when it comes to Prof. Bailey; this may have been directed against Dr. Dreger, I don’t know, because all there is on this are Dr. Dreger’s fears on the matter. If this is true, it would be a great shame, because Ms. James’ website is an excellent resource, as I recall (if it is true, I would urge Ms. James to look for more constructive ways of putting her obvious talents to better use). But, regardless of that, the simple truth is, Ms. James is not involved with me, or anyone in OII I know of – any more than OII or I are involved with Ms. Koyama following a set of e-mail exchanges we had a couple of weeks back. I am sure Emi would be first to accept that!

What concerns me with the insinuation is that it is a red-herring. Instead of discussing the issues, what we will end up with is ‘why do you support Ms. James doing XYZ?’: well, I don’t, and it has nothing to do with OII. It is a tactic to avoid authentic discussion on the part of Dr. Dreger. I may agree that the blanket reduction of all male to female transsexuality to simple homosexuality, sexual practice and paraphilia is wrong, but that is not the same as supporting tactics that I consider to be inappropriate in any discussion. In the same way as my not approving of some of the things sanctioned by the fundamentalist-led US government does not make me an Islamic extremist.

Let us get this clear now. This is my position, and as far as I am aware, it is true for OII:

• I do not support any threats or character assassination against somebody’s person or family – even though there are people within OII who have been on the receiving end of such things.

• I do not agree with Prof. Bailey on his characterisation of all transsexual people on the basis of a small unrepresentative sample.

• I commend the good work done in the guidelines and handbook – I do not agree that the application of disorder to intersex people is to anyone’s benefit.

• I am glad to see some protocols and guidelines have been recommended; however, I am concerned about what is not said, and that there is no practical means of ensuring that these are followed.

• I am concerned about the deliberate exclusion of people who do not conform to outcome expectations for the categories that have been constructed, or who have no clear diagnostic category.

• I am concerned about the language of sexual disorder throughout being peppered by references to psychosexual and gender outcomes, whilst being told that these issues have nothing to do with sexuality or gender identity.

• I am concerned about the healthcare of adults, and that this issue has not been addressed, and I fear it will now fall by the wayside because of the new terminology and the resistance this has generated – and people within the consortium moving on.

• I am keen to see OII focus on the needs of adults, represent adults, create an inclusive vision for intersex that does doesn’t seek to alienate other groups in the lesbian, gay and trans communities. The healthcare of adults is an area that has been somewhat neglected in the focus on early intervention.

• I consider that the flaws of perception that led to the use of ‘sex disorder’ are the same flaws that regard gender variance as disorder. Those flaws are connected to a historically rigidly heteronormative medical paradigm.

• I would like to see Dr. Dreger and others involved in the debate focus on the issues, rather than seeking to undermine credibility and avoid genuine debate.

• I would like to see the NWU list run by Prof. Bailey become less excluding, and more open to academics & researchers who do not necessarily have the same perception as Dr. Dreger and Prof. Bailey. As far as I am aware, few dissenting voices are allowed on that list, which gives a false sense of consensus.

It is perfectly clear that the DSD consortium made a mistake in not consulting all those involved about the terminology – those who could be excluded by the terminology, those outside the USA who would be affected, and those inside the USA not connected to ISNA. I have published the initial results of my survey which found only 10% agreed with the terminology (this was consistent for all who responded, regardless of whether had experienced childhood surgeries or identified as intersex). The survey is soon to close, but the results have remained consistent. I have yet to see any public details about any consultation and how those that took part were selected, what the figures were, etc. In seeking to encourage a community to adopt a change of terminology in such a deeply significant way, some sort of substantive feedback should have been sought and documented – why has it not yet been publicised?

Mistakes can be rectified, discussion engaged in, but not if people continue to be shut out from debate, subjected to secret whispers behind the scenes. Instead of perpetuating the silence, accusing people of this or that irrelevant thing – whether that is that the terminology is irrelevant, or Ms. James is behind it all, or the George Bush fundamentalist administration is funding this as part of some political agenda, or whatever, let us engage in the debate openly. Failure to do so will damage everybody, possibly even causing the loss of all the good work that has been done so far.

OII - USA: Intersex and proud of it!

OII – USA is the United States affiliate of the Organisation Intersex International, a non-profit organisation incorporated in the Province of Quebec, Canada. We have members throughout the United States. OII – USA resists all efforts to make intersex invisible, including genital mutilation, medicalization and normalization without consent and offers another face to intersex lives and experience by highlighting the richness and diversity of intersex identities and culture.

Meet David Cameron XXY: OII-USA Spokesperson for Human Rights

List of contacts by state

Mission Statement on Human Rights

DSD: Disorders of Sex Development (DSD's): Our views

Parody

DSD: Disorders of Sex Development (DSD's): Our view

OII Articles 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

For more articles on OII's website

Alice Dreger: DSD - Silencing intersex voices - United Kingdom

Messages of solidarity from OII-UK
Response to blog entry entitled: DREGER IN DENIAL
and letter she wrote recently to intersex activists

The Genuine Question
By Sophia Siedlberg

Spokeswoman for OII in the United Kingdom

Again at the time of my writing this, another furious row has broken out between different people and again it centers around the terminology of “DSD” and I am at a loss as to what to say. I am not particularly interested in why one Alice Dreger resigned. What I am interested in is one statement from a half open letter published by Alice Dreger that does raise a few points I feel really need to be addressed. I suspect strongly if this particular point was addressed then much of this acrimony would end rather quickly.

Alice Dreger stated:

“I would really like to see people direct their writing, speaking and thinking energies towards engagement with those with real power, Not Curtis Hinkle or for that matter most other intersex activists including me, That is Doctors and the parents who need our help understanding how to make things better and better.”

I sort of agree with this statement (except for the snipe at Curtis Hinkle). But in that statement is something I find quite unsettling. “People with power” seems to equate with parents and doctors. Which suggests in some way that activists (However angry or however calm) are considered as lower down some social pecking order, as compared to someone with medical qualifications (Doctor) or who has the ability to reproduce (Parent).

And no, I am not going to be commenting on claims that Alice Dreger is some “interloper” having both the qualifications mentioned. She worked where she worked and did what she did. And there have been questions about how someone in her position can speak for people who they are not. That is how these debates go, that's life.

Well, while everyone has been running around like headless chickens slinging mud at each other, I have had to confront the issue of a child who is in almost identical circumstances to myself 40 years ago. And when I was a child there was this mantra in the UK healthcare system (NHS) which went something like this:

“Treat the parents; control the child”.

From what I am reading, it would seem that statement still stands. I do not really have issues with parents; I had for years gone around with a chip on my shoulder about parents. That is a long story. But I have learned since getting rid of the chip on my shoulder that parents often get mixed messages from the medical profession. They are then left with choices (By the medical profession) that are difficult to say the least. And this is where the truth of that statement lies. “Treat the parents; control the child”. When I was a child, I often heard how my parents were so unfortunate to have such a “Problem” for a child and that they really needed compassionate help (Which basically made my parents worse) and I found myself under the surgeon’s knife so many times I may as well have lived in Hospital. Each and every single cut was designed to alleviate “My Parents’ suffering”. The reality was the doctors of the day were feeding them with some pretty unpleasant, scary stories if they (Not the doctors themselves you will notice) made any mistakes in this process of the child being controlled.

I have to ask myself what psychology was at work there and what did it mean. To be perfectly honest I felt like a living pestilence that had to be controlled by pest control, and I was not a particularly ill behaved child. It was my anatomy that was the cause of such upset.

This is what the chilling term “Sociomedical emergency” refers to. If I have any issues with the content (Not the terminology that’s another matter) of the DSD guidelines it is this common perception that “Parents and doctors have a bigger steak in these issues”. I find this a bit difficult to reconcile with the stark fact that my experience has been that it is my body, my life and my very existence that has been effected by all this and it is me who ended up living with the consequences no one else. The doctor carried on with their careers. My parents just rejected and then forgot me. I was left as a surgically damaged human being facing life that was just an endless nightmare.

While the consortium have obviously gone to great lengths to avoid this ever happening again, I suspect that without taking note of that one core point about “Treat the parents; control the child”, the consortium guidelines run the risk of being rendered utterly meaningless. As for the terminology, again there was this comment I read “Parents and doctors prefer disorders of sexual development - patients do not like this terminology”. I have heard this used to justify the terminology. This illustrates to me that the thinking is still “Treat the parents; control the child”.

I think the current very angry exchanges would not be happening if the protagonists didn’t try to drive wedges between parents and children resulting in children growing up feeling as I do. Angry.

How about changing the underlying assumptions, the underlying medical assumptions that parents are merely breeding stock that need assistance to produce perfect babies? The underlying parental assumptions that children with an intersex condition/DSD have to be made to fit at all costs because the doctors say so and the doctors are always right. And the underlying assumptions I had to get away from, that parents want too much perfection and doctors are always willing to oblige at a financial price to them and at a serious cost to the likes of myself.

I think if everyone got rid of their prejudices then the real prejudices (Of society towards the child) can be confronted. Society is cruel and superficial and society is truly that which has to really confront these issues. I do not want to be teaching parents and doctors, nor do I want to be trying to influence other activists. I do not really want to see these people squabbling. I want those with the “real power” to reconsider what future they are presenting to a child with a condition like mine. Confront that and the doctors, parents and activists will perhaps find fewer reasons to be disagreeing.

Well I have said my piece, in the (perhaps vain) hope that all this politicking and screaming will stop. I am thinking right now of a child who has the same condition as me and who is pretty much facing the sort of things I did. It is up to you people now, yes all of you, as to whether or not that child grows up with a better chance in life than I had. I want that child to have a good life and never want to see her suffer what I did. Well it is up to you now, all of you. All you organizations, support groups doctors, parents, activists

Will that child have a fair chance in life?

Sophie Siedlberg

-----------------------------------------------

Just a line here from someone in OII-UK to show support for all you are doing in North America.

Initially I found the blog article you referred to seemed patronising. However, on reflection, I feel that it is actually quite arrogant. As you say, it seems that we (intersex people – OII?) have managed to exercise some power in all of this, and rocked the boat of the DSD activists. The irony in relation to the Dreger blog is that I can almost imagine the conversations amongst the medics ten years ago in relation to ISNA, and other groups, using very similar language about them.

What I find deeply disturbing about Dreger’s comments is that it may well betray something of her own attitudes about intersex people. She seems to view (some) intersex people from a disabling perspective, just as transsexuals appear to be framed derogatively in similar discourse. Her language verges on demeaning us: in what she writes, she is actually de-meaning us. That is, she is stripping away our meanings, and substituting her meanings for ours; replacing ours with her ‘superior’ historical perspective. I have seen this technique applied by feminist philosophers and intersex spokespeople to de-mean transsexuals – denying their own memories, histories and narratives in favour of their own ideological perspectives. This is an authoritarian technique which seeks to suppress discussion by asserting that there is one ‘objective’ view, accessible only to an enlightened elite; those that are opposed ideologically and marginalised in practice are posited as incapable of being ‘objective’. This is deeply ironic coming from an intellectual tradition that has placed value on the notions of ‘subjectivity’, reflexivity, and historical narrativity.

What Dreger goes on to say re-emphasises her own perspective that we are simply insignificant in her eyes. Clearly we care – so when she asks ‘who cares?’, implying nobody cares, she is saying we are nothing. No doubt from the perspective of the ivory towers of academe, our views are of no value. Our irrelevance, to her or to those who have taken it upon themselves to decide things about DSD terminology, is clear by virtue of the fact that we were never consulted. However the error of not consulting will not be erased by dismissing the debate as simply about language. Suppose I said that “Alice Dreger is an academic who built her career on intersex, then set about introducing a set of guidelines shackled to terminology which many intersex people found demeaning”; it would be disingenuous of me to then turn round having reduced her to this caricature and say it was only a matter of language.

It is no surprise to us that our own views have been so summarily disregarded, because we have often been on the receiving end of that sort of thing. However, for someone who reckons to speak out on these issues in the way she does, in support of intersex people, it is an abominable attitude. To also seek to deny such people any voice is outrageous. I say this because she is active in groups which actively exclude academics who have intersex &/or other relevant histories – such as J Michael Bailey’s group on these issues hosted on the NWU listserver.

Bailey is well known for what he has published about autogynephilia, yet the work he is involved in is clearly working from the position that prenatal androgen exposure (or lack of) has an effect on psycho-sexual differentiation. Papers referred to by Sherri Berenbaum suggest that there is an influence pre-natally that overrides atypical genital configurations. People working with transsexuals, such as Richard Green (a Money protégé, co-signate on the Hughes paper on DSD), when speaking at conferences show their own leanings towards pre-natal influences on gender identity formation

In the work of these people, with whom Dreger is engaged either formally or informally through discussions on DSD and the NWU listserver, something which is clearly accepted as having pre-natal biological origins is treated as if it is an adult paraphilia and mental disorder. Those who are investigating the pre-natal stuff, know that this stuff is not malleable in adulthood, and is no more paraphilic than sexual orientation or physical atypicality. It is scurrilous that it is still treated this way, and it is even moreso when people who have clear signs of intersex are dismissed as falling into the category of mental disorder simply by virtue that they have found it virtually impossible to accept their original sex-assignment. Even where genital anomalies have been evident, gender identity variance from assigned sex is not acknowledged as being due to any pre-natal factors in individual cases, because the research shows that there is no statistical correlation – even though the experts agree that there is a pre-natal factor in psycho-sexual differentiation, and there is among some groups a much higher incidence of change from assignment than in the rest of the population.

It is poor science when the medical-scientific establishment working in a field is in total denial about its own findings, and excludes people from their sample who might be seen to falsify their findings. What they are doing is working back from the assumption that a behaviour is pathological – rather than ‘normal sex-type’ – to the biological mechanisms which set this up, and then seek to use psychiatric measures to rectify that which cannot be rectified; the more simple perspective would be to see that these mechanisms are what happens, and de-pathologise the outcomes, rather than play god with people’s lives. This is the process that Dreger has been consorting with – however nice and charming those people may actually be, it is the system that is perpetuated, and by default that she has signed up to.

In some ways I feel sorry for her, to have worked so hard for something, but overlooked a glaring flaw at the foundation of the edifice (the language of disorder in the context of an entrenched phobia of sex, gender and sexuality variance). I have no sympathy for someone so intelligent and articulate falling into such a trap, as she simply should have known better. Let us hope that people learn through this that intersex people are not sheep to be led by the nose where those who know best will lead them.

Keep handing her the shovel Curtis she seems quite good at digging all by herself...

Michelle O’Brien, OII-UK

Related Link:
http://oii-uk.blogspot.com/2006/09/building-bridges.html

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

For more articles on OII's website

Alice Dreger: DSD - Silencing intersex voices - Canada

Message of solidarity from OII-Canada
Response to blog entry entitled: DREGER IN DENIAL

The title of Dreger’s blog entry says it all:

Talking about What Matters.

We in Canada have been repeatedly told that we do not matter by US intersex organisations and that what we have to say does not matter. Thanks for making this clear. However, we in OII-Canada, the actual founders of the Organisation Intersex International, disagree. We think we do matter and that what we have to say has a right to be heard.

We have experienced total blackouts from all US related intersex organisations because we were told that our activities were not important. We actually received an e-mail to that effect last year.

Suppressing the voices of intersex people around the world is not an effective way of empowering the intersex community.

We in Canada do not speak for the US intersex movement. However, we do wish to express our solidarity with OII-USA which is an affiliate of the organisation we founded here in Quebec and we are very proud to have OII-USA as part of OII.

Affectionately,
Joëlle-Circé Laramée
Spokeswoman for OII-Canada
Vice-présidente et contact au Canada pour les médias anglophones et francophones
Contact for Canadian English speaking media
Courriel: joellecirce2000@yahoo.ca
Blog: http://oii-canada.blogspot.com/

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

For more articles on OII's website