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

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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

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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.