Discordant Alliances

By Sophia Siedlberg.

11 January 2009

Accord Alliance is an organization that essentially acts as the central reference point for "Disorders of Sex Development". You can look at them in two ways. Either they are the fruition of Bo Laurent's evil plan to bring about more surgery, secrecy and shame, or they are primarily a group of doctors who, while having Bo Laurent as their patient representative, genuinely believe that the DSD model is the best way to present intersex health and health care. If they are a manifestation of the first definition, that is, an evil plan by Laurent, then I will oppose them at every turn. If however (as is beginning to look more likely) they are simply doctors "doing their job", then I am prepared to try to talk with them.

The problem they have is that at present Accord Alliance looks like a doctors talking shop with Bo Laurent as the "safe" patient representative. Now there was a time when Laurent (under the pen name of Cheryl Chase) was a bit of a firebrand, rather like some of us in OII are now, but she had all those contacts and funding which enabled her to take the prominent position she now has. But she is a "safe" activist.

I think that it will prove difficult for Accord Alliance to gain any credibility while they appear to have Bo Laurent as the main advocate. It is nothing against Laurent personally either, but no single person can encompass the whole range of intersex experience. Laurent is not popular with many of us because of her activism having being focused on the practices of Dr John Money. She only opposed blanket feminization and other John Money specific policies.

This in itself proves her inability to represent intersex people world wide. But even if the patient advocate was someone more to our liking, realistically they could still not represent all intersex people.

Normally I would simply dismiss such organizations and simply wait to see how they evolve. However, Accord Alliance is a slightly different state of affairs. What they decide, I have to live with. If for example they persist in claiming that people with 5 alpha reductase deficiency are all born outwardly female, when in truth the clinical presentation can vary, then there will be many people misdiagnosed if they do not fit some stereotypical clinical presentation. If they still insist that all with the same condition end up wanting to be male (regardless of clinical presentation at birth) they are again exposing people with this condition to yet more damaging mistakes. Mistakes I have already had to live through.

When I myself started out as an intersex activist in the 1990's, I did not suspect I would be having to deal with thuggish oafs like J Michael Bailey having huge arguments with transsexual folks. Nor did I expect to end up on some list of hate figures in the mind of Alice Dreger. When I started I innocently believed that intersex activism was about much more than the petty minded arrogance of a bunch of sexologists who have issues with transsexual folks.

I am not even transsexual, but then misdiagnosis, denial about surgery done during childhood, looking at trivial concerns rather than real health issues on the part of the medical profession have led to me being made to endure all manner nastiness until my mid 30's when I gained access to the truth. Having said that, it is hard to call yourself transsexual when the characteristics of the "assigned sex" were so obviously surgically imposed, without consent, that I could not realistically say I physically "transitioned". But this was all at a time when society was ignorant about intersex people and even more ignorant about 5 alpha.

Today it should be different but sadly this is perhaps not the case. I am a "Disorder of Sex Development" according to Accord Alliance. I find that term insulting to put it mildly. A lot of people do. Another gulf of difference between me and Bo Laurent would be that I am not transphobic, for a good reason, I had to endure the grief they get for years, on the strength of a misdiagnosis of PAIS, and the assumption I "should" be "male". Clearly transsexual folks get a lot of stick and I know what it was like to be on the receiving end of it. Laurent does not. And there are a lot of intersex people who did not agree with the sex they were assigned to, and rejected it for a number of reasons, from an innate sense of being a particular sex, to something more like my own situation, where I acted out of sheer anger about what was done to me as a child. Again Laurent will not comprehend this; in fact she colluded with the system that made my life next to impossible.

What I am saying is that Accord Alliance need to consider two things carefully: firstly preventing intersex children from being exposed to clinical mismanagement and institutional abuse. The words "follow up" are utterly meaningless unless the medical teams dealing with such children take responsibility for the consequences of their clinical decisions. Secondly they really need to get away from the idea of transsexual people being the bogeymen. They are a different group of people who have endured nothing but legalized abuse. Accord Alliance are adding to that abuse as Bo Laurent and her Clarke-northwestern colleagues did, and simply by giving her a platform to continue with this is going to undermine everything Accord Alliance is trying to do. I am not saying "Get rid of Bo Laurent" because for better or worse, she is a part of the history of intersex activism and did bring about some significant changes and dialogue.

I am simply saying that if Accord Alliance really wants to do something more positive, then they really need to listen to those people whose lives they will inevitably affect. This is not about "head herms" and personalities. This is about what happens the next time I see a consultant and what sort of health care I receive as an intersexed patient. One change is that now, thanks to Bo Laurent, I know who to blame when it goes wrong. Accord Alliance.

The reason for this is actually very simple. If they decree that some "DSD" has to conform to clinical stereotypes, then those who have that "DSD" will be made to conform, and when it goes wrong, well the buck should stop at the board of medical experts who drew up the guidelines in the first place. Adhering to "consensus statements" simply does nothing other than repeat the mistakes of Dr John Money. Are we going to see another Reimer like case, only this time the child was wrongly assigned "male"? Well, believe it or not that has happened already, and ISNA (the Forerunner of Accord Alliance) tried to ensure that never got into the public domain. If they are heading for blanket sex assignments based on a given diagnosis of a "DSD", then they will simply be repeating Money's mistakes.

I think now things do have to change. For one, arbitrary sex assignment must go. Children should be treated on a case by case basis. Also, lying about those who reject their initial "sex assignment" needs to stop. Children should be allowed to grow and decide for themselves what is best. After all it is their lives they have to live. I also think that all we have is what appears to be a talking shop for doctors with an advocate who is seen by many of us as the "token pet herm" speaking on our behalf. Well, this is not good enough. They really need to listen to as many intersex people as they can, gain their insights and understand their lives. However painful the stories they will tell may be, they, not one individual are the true representatives of intersex people, and when Accord alliance takes the time to listen to as many of them as they can, then Accord Alliance may gain their trust. It is a long road, but they need to walk it.

For a list of articles by Sophia Siedlberg: Click here