DSD / Intersex labeling - Discussion

[Wyn]

I've seen where this topic has been discussed to a significant degree. Unfortunately, these items are in several different places, and I am in a quandry as to the best 'location' to place this post. As such, I am starting a new thread so as to possibly keep these discussions both germane, and centrally located, and in so doing, become readily accessable to those interested in them.
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Well, it’s now about 3:30am – I should be asleep, but, quite honestly, I don’t sleep all that well anymore. I’ve been laying in bed, thinking about this whole intersex/dsd labeling issue, and I feel I’ve come to some disturbing conclusions, possibly incorrect. Putting these thoughts out for perusal and discussion is probably the best way to dissect them and put them into context.

I may be wrong, but I’ve come to the unfortunate conclusion that this ‘DSD’ moniker is simply a way for the medical community to insure that intersex/dsd conditions are Kept as a ‘disorder’ – a pathology – such that continued genital mutilation of infants with these conditions may be covered by insurance providers, and thus be maintained as a ‘profit center’ for those involved in these surgeries (Infant Genital Mutilations - IGM). To remove this ‘disorder’ label would provide a convenient and ready excuse for insurance providers to NOT cover these surgeries, thus reducing/eliminating the profits of a number of pediatric urologists, anesthetheologists, and the like. I’ve been in the business world long enough to grasp the significance of these actions and the subtleties that ensue. I recognize that So many doctors are under a terrific squeeze play by these insurance underwriters to keep their costs down, and thus are contrary to these doctors attempting to keep their profits up.

I am now becoming convinced that the ONLY WAY to Eliminate these gross violations of an infant’s bodily sovereignty, is to remove their justification. And the best way to accomplish this is to reduce or eliminate their financial support by these same insurance providers. I do feel the most effective way to do this is to remove the ‘disorder’ label – the pathological identity - of these birth conditions.

However, this is a two-edged sword. There are some situations where these surgeries may need to be done – I do recognize that there are many who accept and are glad for their surgery. This is an area that will need MUCH discussion, and, as in many medically inspired circumstances, the competing benefits vs ‘costs’ (and Not always financial costs) will need a thorough and complete analysis, not possible in this short letter.

In this context, I do feel that the move to further delineate and define the parameters by which legitimate ‘Informed Consent’ can be given, will play an important and integral part of the actions necessary to remove or reduce the instances of IGM here in the US.

So, it should come as no surprise that the actions by which we in the IS community can influence this debate will be many-faceted, just as the forces that cause these invasions are multiple and varied. Participation en-mass will be a prerequisite to any just and viable solution to an intractable and varied assault upon infants born with VSD – Variations of Sexual Development. It is my heartfelt conclusion that this label is both non-stigmatizing, and yet still recognizes that these conditions are unique, and thus warrant Limited medical intervention at an appropriate time, relative to the overall benefit of the person born with said conditions.

[miriam]

Variations of Sexual Development

Sexual? Do you know what that word means?

http://wordnet.princeton.edu/perl/webwn?s=sexual



Imho there is nothing wrong with the word intersex. I'm born with a vagina and with testes in my abdomen. That is not a variation. That is really inter-sex. From a medical point of view I can understand the use of the word disorder. But intersex conditions are not the kind of disorders that you normally see in the medical profession. We have no pain, it will not kill us and nobody can cure us.

So, what's wrong with "intersex condition". An condition is "a mode of being or form of existence of a person or thing". And if the medical professionals need a good name for my kind of intersex condition they are free to use the name AIS - Androgen Insensitivity Syndrome.

Groeten, Miriam

[Wyn]

Well, this is exactly the kind of discussion I was hoping to foster. Much as you, I personally have no problem with the term 'intersex' at all, and have stated such long before. I do have a problem with the term 'disorder'. I have tried to state my case against this terminology as best I may, but I recognize that not all will agree with these considerations. Thats the whole point of this thread. I do hope that more individuals will feel inclined to state their own preferences and observations about this topic, in the hope of forming a broader consensus on this subject, by the people most affected by these terms and assignments, and the terribly intimate violations that have - at times - been perpertrated against them.

[Sunshine1]

Hi Miriam,

"Intersex conditions...will not kill us"

Congenital Adrenal Hyperplasia has something called adrenal crisis and people young and old have died from it.

Note*not everyone with CAH has the symptoms of intersex. This specific medical term relates to a small portion of girls born with CAH.

Aimee

[mohnblume]

I read that at the international meeting in Istanbul there were members who used the term VSD instseat of DSD. VSD stands for Variation of Sexual Development. Has anybody heard about this term? I think it makes sense and sounds more humanly.

[Peter]

I object to the term DSD for using the term "Disorders". But, in fairness to the people who believe in DSD, it refers to Disorders of Sex Development, not Disorders of Sexual Development. This confusion is widespread, so that dispite the claim that DSD would lead to more clarity, it is just as confusing as the old terminology, and more stigmatizing. It like Miriam's post above about this issue.

Peter

[Wyn]

I do have to wonder if there are any other groups of 'disorders' or conditions that have been lumped together, much as Intersex conditions have been. I personally am not aware of any others, but my knowledge in these matters is rather limited. I mean...here we are talking about close to 100 different specific conditions and syndromes that have been put under a very large 'umbrella term', just to make it easier for medical personnel, and the general public, to put us into their little 'disorder box'.

I have to wonder WHY do we need these 'monikers' in the First place! Why not just determine, assign, and stick to the specific condition(s) or syndrome(s) an individual has, rather than have these stigmatizing umbrella terms to confuse and obfuscate the situation for everyone, IS included. I will suggest these efforts are in place to keep US 'off balance', and distract us from the basic causes of these 'assignments', perhaps in an unconcious effort to force us to address these inane and useless terms between ourselves, thus causing the inevitable conflicts - all in an effort to force us to overlook the core issues of mutilation, secrecy and shame.

[mohnblume]

... but with DSD we might be entitled to park on the handicap parking space ... *grin*. Less walking, easier life!

[Sofie]

Originally Posted by Wyn

I do have to wonder if there are any other groups of 'disorders' or conditions that have been lumped together, much as Intersex conditions have been.

Autistic Spectrum Disorders