Saturday, September 30, 2006

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

Alice Dreger: DSD - Silencing intersex voices - France/Belgium/Luxemburg

Message of solidarity from OII-France,
OII-Belgium & Luxemburg

Response to blog entry entitled: DREGER IN DENIAL

We in France are deeply concerned about the DSD guidelines and the very terminology. First of all, no Francophone intersex voices were allowed input despite the fact that we wished to have some voice.

We find it alarming that we have consistently been silenced by the US intersex movement which at the same time has had big articles published in our French magazines about them and further making it more difficult for us to speak about intersex in our own country.

These guidelines have serious consequences outside the United States and since intersex organisations from the United States find it perfectly acceptable to take centre stage in France, we also find it disturbing that we were never consulted about any of these guidelines or terminology.

We fully support OII-USA and its efforts to expose the fundamental objections that we have in France to this US-based Consortium which is exporting this to other countries without input from those of us trying to have a voice in our own countries.

Mes amitiés,
Vincent Guillot
Spokesperson for OII – Francophone Europe
Blog: http://oii-france.blogspot.com/

Message from Camille: (orginal French follows)

"As an intersexed person who was "treated" in childhood without consent, I wish to extend my total support and solidarity with my intersexed brothers and sisters in the organization OII-USA in the struggle against the new "DSD consortium" which was elaborated without consulting with the intersex community and which uses terms which are stigmatizing, shameful and which serve as a vehicle for preserving normalization therapies which sacrifice the integrity of intersexed children in order to calm the anxieties of the parents and which work to maintain the binary sex system and the sexism of that system.

Camille Lamarre, France
PS:(Huge kisses of solidarity!)

"En tant qu'intersexué-e "traité-e" dans l'enfance sans mon consentement éclairé, je souhaite apporter mon soutien et ma solidarité totale avec mes frères et soeurs intersexes de l'organisation OII-USA dans leur combat contre le nouveau "DSD consortium" qui a été élaboré sans tenir compte de la communauté intersexe et dont le qualificatif de DSD est stigmatisant, infamant et qui vise à maintenir les thérapeutiques de normalisation , sacrifiant les intérêts et l'intégrité des enfants intersexes au profit de la tranquilité des parents et du maintien d'un système sexuel binaire et sexiste."

Camille Lamarre, France
PS:(grosses bises solidaires!)

Message of solidarity from OII-Belgium and Luxemburg

We are not “disorders” !

A North American organization, the "Consortium on the Management of Disorders of Sex Development" intends to impose the terminology "Disorders of sex development" in Europe, just as it is presently doing in the United States. This new terminology is to replace the term "intersex" which is more broadly used and this decision has been made without any consultation or agreement from the individuals or associations that represent them.

Those of us who were born with bodies and/or who have genders which are not typically male or female in Belgium and Luxemburg, demand the right to self-determination concerning our sex and gender assignments at birth and we join the Organisation Intersex International – USA in refusing any pathological labels whatsoever.

Furthermore, those of us in Belgium and Luxemburg who are not typically male or female by current standards, demand the right to self-determination and respect for our choice concerning sex assignments and we demand respect from the medical community and other associated health-care providers and we demand the right to health care that all human beings should have access to.

Edith Nagant
OII Belgium and Luxemburg - OII Europe
(Organisation Internationale des Intersexes)

http://oii-europe.blogspot.com/ http://www.intersexualite.org/Europe/-index.html

Réseau InterGenre-InterSexe

rsoigis@yahoo.fr
http://www.intersexualite.org/F-intergenre.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 - Switzerland

Message of solidarity from OII-Switzerland

Response to blog entry entitled: DREGER IN DENIAL

Dear team of the OII-USA:

Reading Alice Dreger's last message on her blog is very interesting both for what it contains, and for what it does not contain.

This message does not contain a single word about her own responsibility in the damage caused by the DSD consortium to intersexed children. This message does not contain a single word of regret for parents who are manipulated through the ideology of this consortium. It does not contain a single word of regret for the suffering the children will continue to endure because of the work of this consortium. It does not contain a single word of regret for the pain caused by this consortium, for the human consequences of the battle which is currently happening.

Alice Dreger writes this message as if all the struggle currently happening was only about terminology and as if the core of the content of the documents of the DSD consortium were not problematic. Actually, all this article is written in a way to describe a peaceful discussion about a topic of secondary importance. I seriously doubt that intersexed people will have the same perception.

This text is obviously patronizing, as several people did already notice it. But it is also a manipulation, like a "tour de passe passe". It tries to transform a struggle where the outcome is the sufferings of intersexed children and the recognition of their specific identity into a discussion about terminology. It tries to transform the struggle against homophobic and transphobic protocols into a discussion between activists who prefer to leave parents and children alone. It manipulates parents as if it was appropriate and ethical to lie to them. It manipulates readers as if all this struggle was only about terminology and not about the core of the content of these documents.

It obviously takes a lot of energy for the OII-USA team to counter such unethical actions. But this struggle is very important, for all intersexed children, for their parents, for the recognition of their specific identity all over the world and not only in the USA.

I am extremely impressed by the way you are able to document and publicly communicate the truth about the DSD Consortium. This work is impressive and it is important far beyond the borders of the U.S.A.

I would like to send you my gratitude for the countless hours of difficult work needed to do this.

Marie-Noëlle Baechler
Belmont-sur-Lausanne / Suisse
http://www.vrais-visages.net/
Blog: http://oii-suisse.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

Thursday, September 28, 2006

DREGER IN DENIAL

By Curtis Hinkle, OII

September 28, 2006

Today Alice Dreger posted a page in her website that at first reads as a claim that she is NOT resigning from the DSD Consortium:

“Ooo, I have something in common with Angelina Jolie! We’re both the subject of wild rumors on the internet!”

“The rumors about me say I resigned from the DSD Consortium and that I resigned over a shift in language.”

http://www.alicedreger.com/dsd

Dreger goes on to elaborate that she doesn’t really support the term “disorders of sex development” as a replacement for “intersex”.

“Since the publication of the handbooks, a number of intersex adults, including a number of my intersex friends and colleagues, have expressed doubt and sometimes serious displeasure at the term DSDs. They feel it medicalizes and pathologizes them, and I understand what they’re talking about. In fact, I’ve noticed that when I talk to specialist pediatricians and stressed-out parents of affected young children, I say “DSDs,” and when I talk to almost anyone else, I say “intersex.” I’m personally more comfortable with “intersex.””

However, we have recently exposed Dreger in her own words on the record as having been one of the principal instigators of and staunch promoters of the use of that terminology. There’s just no getting away from it Alice, you really did push this terminology onto intersex people, and with considerable determination:

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


In today’s denial page, Dreger goes on to say:

“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. Most politically-conscious intersex adults want to see change happen in medicine and society, but they don’t have the resources to do major social change or medical reform work. But there are things they can do instead of ripping into each other over language.”

Here we see Dreger claiming special elite status as a “historian” to paternalistically dismiss intersex people as being powerless to speak for themselves and effect social change, and to accuse intersex people of “ripping into each other over language”.

However, those are obviously distorted, disingenuous, self-serving claims:

Intersex people are NOT ripping into each other over language. We are ripping into Dreger over HER use of language. And we appear to be doing it quite effectively, thank you!

Furthermore, independent of Dreger’s claim, intersex people DO have the power to speak for themselves and press for social change and reform. And we sure don’t need interlopers like Dreger putting us down as being unable to defend ourselves, and then seizing centerstage and speaking for us!

Later in her denial page, Dreger pleads to be let off the hook, saying “Oh, come on people, who cares?”, as if it doesn’t matter what the truth really is.

“All right, you’ve heard what I think about the terms. So what’s the truth about me? Oh, come on people, who cares? Please don’t waste your time on me!”

To intersex people, that statement is an incredible slap in the face – by someone who has pathologized us and now seeks an escape from responsibility, hoping that nobody really “cares”.

In her conclusion, Dreger finally reverses the impression created at the beginning of the page, and admits that she resigned from the DSD Consortium:

“Here’s what happened: Yes, I resigned from the DSD Consortium. No, it had nothing to do with the language or any other political or philosophical issue in the intersex rights movement. I continue to fully support the handbooks.”

Of course she claims it had nothing to do with the huge backlash that’s developed against the DSD terminology and against her over-promotion of the use of that terminology.

Instead she says:

“I resigned for personal reasons.”

Alice Dreger has claimed in many places that “disorders of sex development” is the preferred terminology for intersex people – but now claims that she is “uncomfortable” with the DSD terminology. Thus she stands exposed as duplicitous.

We suggest that Dreger is being duplicitous about her resignation too. It seems that she is in denial, unable to take the heat from the backlash against DSD - and THAT has everything to do with “language”.

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

Tuesday, September 26, 2006

Alice Dreger: Disorders of Sex Development

A report from OII, Edited by Curtis E. Hinkle

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

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

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

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

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

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

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


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

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

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


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

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

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

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

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

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

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

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

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


Dreger’s disorders paper promotes the use of the old-time medical phrase “disorders of sexual differentiation" (later changed to “development”) – using the straw man of “hermaphroditism” as if it were the word being replaced (instead of intersex being the word they wanted to replace):

In conclusion, we suggest the language of ‘hermaphroditism’ and ‘pseudohermaphroditism’ be abandoned. One possible alternative . . . is to use instead . . . the umbrella term “disorders of sexual differentiation”. Such an approach would have the salutary effects of improving patient and physician understanding and reducing the biases that are inherent in the use of the current language of ‘hermaphroditism’. – Dreger et al.

That old medical terminology had been adopted in 2003 in the mission statement of "The Network on Psychosexual Differentiation". It was that NICHD group of researchers, funded by NIH, who are behind the Northwestern/Penn State DSD Consortium that had hired Dreger:

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


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

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

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


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

http://tinyurl.com/gz57y

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

“Consensus statement on management of intersex disorders”, by I A Hughes, et al; Archives of Disease in Childhood ac98319 Module 2 5/4/06:
http://www.medhelp.org/ais/PDFs/Chicago-Consensus-Statement-06.pdf

“Summary of Consensus Statement on Intersex Disorders and Their Management”, Christopher P. Houk, et al; PEDIATRICS Vol. 118 No. 2 August 2006, pp. 753-757
http://pediatrics.aappublications.org/cgi/content/extract/118/2/753

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


The terminology was then positioned for major national exposure, in a glowing article about Cheryl Chase in the New York Times on September 24, 2006:

"What if It’s (Sort of) a Boy and (Sort of) a Girl?"
http://tinyurl.com/jju2h

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

“Variations of Sex Development Instead of Disorders of Sex Development”,
Milton Diamond, ADC-Online, 27 July 2006.
http://adc.bmjjournals.com/cgi/eletters/91/7/554#2460

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

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

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

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

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

Other related links on the DSD controversy:


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


For more articles on OII's website

Friday, September 22, 2006

DSD Consortium: Homophobia and transphobia exposed






Very oddly, the DSD Consortium handbook website lists no DSD Consortium address, contact information or member information, but simply posts links to the brochures published by ISNA, as you'll see at the following links:

http://www.dsdguidelines.org/
http://www.dsdguidelines.org/about/consortium

In particular, the Consortium website does not mention the actual "research" group behind this front, namely the "The Network on Psychosexual Differentiation", funded by the NICHD and based at Penn State and Northwestern University:

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

Nor does it mention the pathologizing language in the "mission statement" of that group:
http://nichdnet.psych.psu.edu/aims.html

The DSD Consortium website also fails to mention that the principle author/editor of consortium information is Ms. Alice Dreger, a failed academic who recently resigned her position from Michigan State University under a cloud of acrimony (she has since written highly negative things about academic life). Dreger has recently been hired by Northwestern University into an administrative position as a spokesperson for NU's sex research, with the title of "Project Coordinator for publications of the Consortium on the Management of Disorders of Sex Development".

Among other things, Dreger is a defender of the notorious J. Michael Bailey, a disgraced faculty member who is a member of NU's sex research group. Mr. Bailey is well-known for advocating homosexual eugenics, and was a key participant in the early meetings that established the pathologizing terminology and mission of the DSD consortium, as you'll see in the attendee lists:

http://nichdnet.psych.psu.edu/meetings.html

Mr. Bailey's work has become notorious in the GBLT community for his defamations of GLBT people, and he has been denounced by almost all key advocacy groups, as in these examples:

http://www.glaad.org/action/write_now_detail.php?id=3827
http://www.thetaskforce.org/downloads/NYTBisexualityFactSheet.pdf
http://advocate.com/exclusive_detail_ektid29121.asp
http://www.splcenter.org/intel/intelreport/article.jsp?sid=96

Furthermore, gay media have recently refused to take ads for research subjects from projects that involve Bailey in their work:

http://tinyurl.com/h8o7v

Could it be that Ms. Dreger wishes to minimize the exposure of the DSD Consortium's close ties with the pathologizing thinking of such infamous Northwestern University sex researchers?

-----------------
UPDATE Sept. 24, 2006:
Ms. Dreger is planning to resign from the DSD Consortium. She has apparently cracked under the pressure of the exposure of the "DSD pathologizations" that she and Cheryl Chase and the NICHD crowd recently launched against intersex people. She now appears to be going into denial that she had anything to do with this mess, even though she was one of the principle authors of it all!
-----------------


Chicago Free Press
August 9, 2006

Editorial: Bad Science

Recently, CFP ran an ad for a research study seeking gay men with gay brothers. The study is based at Northwestern University and other institutions.

A few CFP readers looked into the study and found that one of the principal researchers is Northwestern psychology professor J. Michael Bailey.

Bailey is a controversial figure, to say the least. His 2003 book, “The Man Who Would Be Queen,” has been heavily criticized by transgender activists, who say it falsely characterizes transgenders as “especially motivated” to shoplift and asserts that “the single most common occupation” of transgenders is prostitution. The book was not footnoted, as serious research commonly is, and some Chicago transgenders said Bailey befriended them in bars and never told them he was using them as subjects for his book, which is clearly wrong.

Northwestern officials investigated the complaints, and while they would not comment on their findings, Bailey subsequently resigned as chairman of the school’s psychology department, although he remains on staff there. Bailey never responded to CFP questions about his book or his research. He has since created a “Book Controversy Question & Answer” section on his website, but it doesn’t address any of the allegations listed above.

The book is not the only controversial aspect to Bailey’s research. The Gay and Lesbian Alliance Against Defamation blasted Bailey and an article about his research in the New York Times in 2005. The subject of that article, a research paper co-written by Bailey and a graduate student, asserted, “It remains to be shown that male bisexuality exists.” Bailey based that claim on experiments involving a widely discredited scientific instrument developed in Stalinist Czechoslovakia in the 1950s to measure soldiers’ responses to sexual stimuli.

Media watchdog group Fairness and Accuracy in Reporting said in a statement about the Times article, “In suggesting that men who claim a bisexual sexual orientation are liars, the Times relies heavily on a single study whose senior researcher has a career marked by ethics controversies and eugenics proposals.

Bailey has also generalized that gay men tend to be feminine boys, and part of his current study is aimed at pursuing that theory. He has generalized that most gay men are ashamed of being perceived as feminine, an assertion that demonstrates how Bailey lets his own feelings and assumptions about what’s masculine or feminine, even gay or straight, guide his findings.

The current study is also aimed at finding a genetic basis for homosexuality. If that were discovered, and parents were consequently able to ensure that their offspring were not gay (something that many scientists believe isn’t possible), Bailey has said that such a choice “would be morally unproblematic.”

“It is quite hard to see how being heterosexual causes any harm to the child,” Bailey said at a 2004 forum at Northwestern.

Thanks to the heads-up from our readers, we looked into Bailey’s involvement in this study and found it to be substantial. Since we cannot in good conscience steer our readers to a study that Bailey is part of, we’re canceling the ad. And in the future, before accepting any ads for research studies, our ad staff will ask who is involved. If Bailey is, we won’t accept the ads.

There are other researchers involved in this study. They may have good motives, but we question their association with Bailey. We appreciate good science. We don’t appreciate being used to further the dubious agenda of someone who believes he should not be held accountable to our community.

Thursday, September 21, 2006

Handbook for Parents is transphobic and homophobic

Early Surgical Tools













The Consortium for the Management of Disorders of Sex Development in Children has published a handbook specifically for parents of children born intersexed or as the Consortium prefers to call them – disordered in their sex development. It is very revealing that the consortium has published handbooks for doctors and for parents but nothing intended for the actual child. There is a reason for this. The Consortium serves the interests of the two groups just mentioned at the expense of the child being managed.

This Handbook for Parents is very misleading and gives parents a lot of misinformation about intersexed children. It minimizes the suffering and trauma that many have reported over the years about being assigned the wrong gender and also being persecuted for being lesbian or gay. The propaganda in this handbook repeatedly brushes aside the serious issues of transphobia and homophobia which many of us have experienced from our earliest years and throughout life. The handbook is not about making intersexed children actually feel secure and comfortable with themselves but more about assuring the parents that their intersexed children will most likely NOT be transsexual or homosexual.

The Consortium has heralded these publications as advances in the healthcare of intersex children and not about gender. However, if one takes the time to read the Handbook for Parents, that is all it is about – gender. And how could it be about much of anything else? The whole reason for combining a lot of different conditions which have nothing in common medically under the umbrella term “disorder of sex development” is not to treat real health conditions of intersexed children but to relieve the sufferings and anxieties that gender "ambiguity" provokes within society.

The introduction of the Handbook for Parents makes this very clear:

‘’This handbook does not include a large amount of medical information about your child’s specific condition. That is because there are many conditions that count as disorders of sex development (DSDs), so it would be impossible for us to cover them all. Instead, this book is meant to give you some basic information about sex and gender development.’’

The actual research on intersexed children is not truthfully dealt with in this handbook and one needs to ask why. The actual experiences of thousands of intersexed adults are not dealt with either. Many intersexed adults have denounced not only the early, barbaric treatments but also the very reason for the treatments – to assign a gender without consent or input from the child. Many have also denounced the homophobia that they were subjected to in childhood and later in life. Their narratives and personal experiences are almost invisible and actually trivialized in this handbook so as to give comfort to parents who most likely do not want homosexual or transsexual children.

Parents should be told truthfully that their intersex child is more likely to reject the imposed sex assignment and they should be prepared for just how difficult it will be in most states to do this, if not outright impossible. They should be prepared to cope with the intense trauma and psychological damage that adults have reported who are transsexual or intersexed and assigned the wrong sex. They should be prepared to deal with the very large number of intersexed people who have felt very damaged by the gender they were assigned and there are many of them and more and more are coming forward each day.

We also know that intersexed adults are much more likely to be lesbian or gay and this should not be trivialized or brushed off as it is in this manual. The mistreatment that young children are subjected to who are homosexual is not dealt with adequately and since the parents are usually heterosexual, they are probably not able to understand the long-term damage that many lesbians and gays have reported from such abusive treatment and prejudice they experienced growing up.

One of the most glaring contradictions between the handbook for parents and the handbook for doctors of intersexed infants is rooted in the very transphobia which permeates these documents. The Handbook for Parents repeatedly states that we do not know what determines a child’s gender identity. The Handbook for Doctors repeatedly assures other doctors who are assigning the gender of intersex infants that they can do this quite easily by simply following the guidelines based on the intersex condition of the infant. How could we have no clue what determines gender identity on the one hand and on the other be so sure that you can determine the gender arbitrarily by following the guidelines of the DSD experts? Well, it is quite simple. It is always the child who is disordered in these handbooks. If the intersex child rejects the arbitrary sex assignment, they have another disorder. What started out as a disorder of the child’s sex has become a disorder of the child’s gender and the doctors are still totally correct at all points of the treatment protocols and the child is always wrong and suffering from a disorder.

Another interesting transphobic detail, other than constantly asserting that intersex children almost never reject their sex assignment, is expressed when we read that in very rare cases the child may grow up and seek a sex change along with surgical and hormone treatments. Nowhere does this expert mention the most likely fact that the adult had already been surgically altered in childhood without consent. An interesting omission because these earlier surgical procedures can have severe consequences later in life by totally altering the genitalia and sensitive tissue making adult surgery much more difficult.

This document does not prepare parents for the problems that normalization often causes such as post traumatic stress and other psychological damage to the child. What is so tragic is that in this handbook for parents the disorder is always in the child and the parents are given the false impression that all will be well, i.e., that most likely their child will not be gay or trans. Many of us feel that the parents would be better served by learning to deal with their own prejudices if they have any and embracing the richness of identities within the intersex community. Those identities are conspicuously absent in this handbook because the subtext of homophobia and transphobia make it almost impossible to not think that part of the normalization process is to prevent other “disorders” also.

Tuesday, September 19, 2006

Our Policy - This is a No Normalization Zone


OII proudly stands behind its NO NORMALIZATION ZONE policy:

OII respects opinions from different intersexed people and groups. You will most likely find opinions and ideas on our site which are controversial. However, we in the intersex community have been so normalised against our consent that we feel any attempt to "normalise" the opinions and expression of those in the intersex community would only further damage us as a community. Therefore, people are allowed to be controversial, to disagree, to simply be themselves and state how they feel about intersex without worrying who might take offense, including other members of OII. We also invite intersex perspectives on controversial topics and issues such as sexuality, religion, politics and other issues. We want visitors to see the diversity within the intersex community, and invite our allies to look for those of us whom they feel comfortable with and join us as part of our movement for human rights. If you don't like what one person says here, just look a little further and another intersex person will probably be on your wavelength.

Our Policy:

No NORMALISATION of views or expression. No intersex voices censured here, even those which might be hard to understand or objectionable to some people. Help us to Stop The Harm through sharing and education.