Saturday, September 30, 2006

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:

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
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

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