Michelle

What DSD does for the Intersex Movement.

Feb. 26, 2008

I have to state at the start that I am unhappy with the terms 'Disorder of Sex Development'. I am also very sad that so much of the discussion has become so focussed on personalities, as well as the issues about transsexuality. This is bound up with those personalities who have helped frame the debates about intersex, and who also have issues about transsexuals.

I am opposed to the term 'disorder' for a very simple reason. I grew up having treatments which would now be referred to as corrective surgical interventions. I was never told what these interventions were about, but I am clear that they happened; I have no records to explain what they were, but I do have evidence which confirms my memories. Corrective surgeries can only make sense in the context of something being wrong, defective, or deficient in some way. This means that rather than lessening the likelihood of such interventions, the categorising as 'disorder' can only serve to legitimise such surgeries past and present. I have no issue with medical intervention that is necessary or cosmetic and consented to as an adult.

My own issues took a long time to coalesce in my own mind. I knew there was a problem, but not what that problem was. I questioned my sexuality - was I gay? I worried I was a sexual deviant - was I transvestite? I became convinced I was transsexual - what else was there that would explain this problem I had? I had my masculinity reinforced in a number of ways from puberty - indeed, I still am not sure whether even that was induced or not. My adult life became a series of attempts to prove I was a man; I changed from one act to another, copying those around me, wanting to appear to others as any other man but never sure exactly who it was I was.

Discovering the significance of those parts of my history, the developmental issues that had been so carefully hidden from my own perception, was intensely liberating; I no longer had anything to prove. However, the intersex movement as it was then seemed hostile to people like me, and the only path available was that open to transsexuals. It did not take long before I began to appreciate that my issues were not about gender - of being male and wanting to affirm some abstract feminine identity I believed was me.

I know that for some intersex people, gender is very important - either to affirm one gender against that assigned, or simply to be able to function fully in their assigned gender. But my issues are not about my gender; I am not even sure I have a gender. Gender is about men and women, and I am intersex; not a third gender, intermediary, or any of these things. Intersex people may well have more fluidity about gender early in infancy, which means they can be assigned either way; but for me, it seems whichever way I had been assigned, it would not have made sense to me.

How does DSD help the intersex movement? As long as intersex as a concept was yoked to medical definitions of intersex, the aims of an intersex movement could never be realised. The definition of intersex was maintained by medical gatekeepers who operated in a similar way to those who act as gatekeepers of transsexuality; some people were seen as 'in', others as 'out' - most significantly, those perceived as having gender issues were classed as transsexuals rather than intersex. This would not of itself be problematic - except that the needs are different, and as I have just described, the issues of intersex people may not be those of transsexual people. For example, I did not virilise in the way a man is supposed to; this led to a deficiency in bone density which means my bones are more porous and susceptible to osteoporosis; there is medication that can help with this, alongside HRT. As a virilised male transitioning to female, this would not be expected - and indeed in my case it only came to light by chance (I had surgery following a motorbike accident); as somebody who is intersex, it should be screened for.

The gate keeping has no doubt been pragmatic, but there has also been an ideological gate keeping, where the early movers in the intersex movement restricted access to that movement to a narrowly defined group of people based on political as well as medical definitions of what intersex was. DSD changes all this. DSD means that intersex is no longer yoked to a set of medical diagnoses in a master/servant relationship between patient and medical profession. This opens up intersex to a wider political understanding. DSD not only facilitates this, it underpins it. The definition of what constitutes a DSD is much broader than it ever was when confined to handful of syndromes - it incorporates people formerly excluded as being considered intersex. This means that DSD not only takes the power to name and restrict who is and is not intersex away from medical practitioners, but the group of activists who had a narrow agenda who themselves supported the introduction of DSD.

The terminology of disorder is a huge setback, because it suggests there is a way intersex people should be that they are not, and places them in need of correction. Terms like variation, difference, divergence, would have been preferable. What we have heard very clearly in the debate is what parents and doctors want, but there has been little attention to the needs of those who grew up with DSD's, what they would have wanted, and what they want and need now. This represents a huge opportunity for the intersex movement, to move beyond the narrow agenda of a politically motivated few to a wider and inclusive intersex movement. It is an opportunity that stands in stark contrast to the intention behind DSD to make those definitions narrower and more restricted - because many of those formerly dismissed by earlier activists are now clearly defined as having (had) DSD's.

In the future, those people who are searching for answers will not have to try and hang their issues on a peg that says 'gender', they will be able to see more clearly that what they are dealing with are intersex issues - albeit under the frame of reference of DSD. They will be able to look at the possibilities open to them as intersex people, rather than trying to fit a narrow set of guidelines intended for transsexual people. In an ironic way, DSD allows for the emergence of intersex identities freed from the medical and political baggage that led to DSD in the first place. A movement like this, that embraces intersex more fully, would choose a term that is not predicated on disorder - but that part is history now. In the future we must try and ensure that despite that, intersex people and children are not seen as defective and in need of correction.