Disorder Sex, Sex Disorder, Dissed?

In a bid to get away from stigmatizing labels and not upset people, The Intersex Society of North America came up with an interesting definition. “Disorders of  Sex Differentiation” or “DSD” (Rhymes with BSE and DSV if you need to remember it). I think it is fair to say that my initial reaction was “Dissed” and this is not pathologizing we are led to believe. However, some interesting elements from the debate that led to this are worthy of discussion. Emi Koyama gave a talk supporting this idea and later published the transcript. Her reasoning did make sense to me..

I quote:

“Parents of intersex children tended to be even more hostile to the notion that their baby is neither male nor female: many of them would absolutely refuse the label "intersex," only accepting specific condition names such as congenital adrenal hyperplasia or androgen insensitivity syndrome. In fact, I fear that hearing the word "intersex" would make them more likely to pursue drastic measures to eliminate that factor, be it surgery or complete secrecy.”

This I can understand not as a parent of course,  but as an individual affected by such a condition. While I have ended up using the term “intersex” myself, I have often expressed my dissatisfaction with it, especially when the media and others turned it into “intersexual”. But this does leave the tiny issue of the words “Sex” and “Disorder” in the same phrase, with a rather technical sounding “Differentiation” thrown in.  As a medical identifier, or part of medical nomenclature, I would say that it is pretty dire. But the reasoning behind it seems not to be. If I were given the opportunity I would simply change one word, that is “Disorder” and substitute it with “Condition”. In one simple stroke you are rid of that awful “Disorder” baggage and further distanced from “sex disorder”. The word “sex” will inevitably remain, and technically is preferable to terms like “Gender”  (As gender implies a social rather than biological issue).

You see the problem with adding “Sex” and “Disorder” in any term or phrase is that we end up with things like “condoms”, “coils”, “lubricants”, “Viagra” and  “Falwell fundies beating up gays” as keywords or phrases. Type in words like “sex” and Disorder” into a search engine, and the best thing you can do is shut your eyes if you are of a moralistic or nervous disposition. Type in “Sex” and Condition” and it wont be half as lurid. there is a very practical reason for my saying this. As Emi points out, parents are the ones who seem to be left with issues over definitions.  Parents are often also the ones who start looking for information in places like libraries and the internet. Immediately the use of “Condition” rather than “Disorder” becomes very practical indeed. You see a modern term needs to be put in context with modern communication. Type “Sex” and Disorder” into an email and the recipient’s  ISP will call it spam. Not so with “Condition”.  This in itself would be a good reason to reconsider the term “Condition” as opposed to “Disorder”.

The other more obvious problem is the baggage associated with “Disorder”. The truth of the matter is different when we are talking short term health issues. A common cold is a “Disorder”. Called a “Cold”. I don’t hear “Coronoviral infection with secondary bacterial infection of the respiratory tract”. A tummy bug does not get called “Noroviral infection causing severe vomiting”. Short term disorders are called disorders, and never actually refer to the patient who has them. With long term health issues you tend to find the discoverer’s name used. “Swyers Syndrome”. We all say “Swyers”. It is considered impolite to say someone with “Swyers” has a “Disorder” simply because this condition is a life long condition and does affect how the medical profession sees them. Basically the term “Disorder” is simply not appropriate in long term conditions. For example you often hear “long term condition” and seldom “long term disorder”.

And to be realistic people are going to create variations of any acronym, term or name. DSD will become “Dissed” (Which is ironic and how I feel). They will invent alternative acronyms with the same letters. “Deranged  Strange Deviant” has already appeared from a troll on a website responding to the announcement from ISNA. Bluntly “DSD” will not work.

Look at my own condition. It is “5-alpha reductase-2 deficiency”. If that is not a mouth full of swallowed dictionary, I really have no idea what is. Two terms came from it “5 ard” and “5 Alpha”. The first one has masculine connotations in slang the second sounds like some Falwell fundie brainwashing course.  You see it gets very complex - this word business and it gets heavy going when trying to suggest words in the first place. I imagine that the acronym that gives us “Dissed” will become the pejorative “Disser”. You cannot get away from some smart Alec trying to turn a phrase bad. I tend to think that language invariably carries multiple meanings. Type “Disorder of sexual differentiation” into a search engine and it conveys a lot of strange meanings. So it has multiple meanings.

I can only conclude by saying it would be better to use “condition”, in the term. Or at least something that implies long term health issues but not pathology. I suspect using a name of someone would also be useful. “They have a condition belonging to the family of  <insert name> syndromes”.  It would of course then be a case of finding a person who has contributed to the medical well being of people with intersex conditions. Personally I would vote for “Diamond” as in Milton Diamond,  but opinion would evidently differ.

All I am saying is that while Emi Koyama rightly explains the rationale of “DSD”, and her argument resonates with me quite well. The actual term used is not satisfactory. People are objecting to it. And that is unfortunate because the basic idea is a reasonable idea. It is the mixing of “Sex” and “Disorder” that to many is problematic, if not difficult to understand. 

References:

From "Intersex" to "DSD": Toward a Queer Disability Politics of Gender

Emi Koyama, Intersex Initiative, presented at Translating Identity conference

held at University of Vermont Feb  2006.

Sophia Siedlberg