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Fact Sheet on DSD activism
Until recently, people who were born with bodies that were not typical for the standards of what is considered normal for male or female were called intersex. A group of medical experts and one US organisation, ISNA, decided to change the term from intersex to DSD or “disorders of sex development” without consultation with those who would be directly affected by this terminology and increasing pathologisation of their bodies. So this controversy is not just about a term but about the consequences that the very diagnosis will have on the lives of intersex people. Please keep that in mind when reading this fact sheet.
Fact 1: Almost all the parties involved in promoting DSD are not intersexed and are not representing the intersexed community.
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The Consensus Group which made the official recommendation to reclassify intersex as a disorder of sex development was a group of over 50 medical experts, not intersexed people. (1)
The Consensus Group which made the official recommendation to reclassify intersex as a disorder of sex development was a group of over 50 medical experts, not intersexed people. (1)•ISNA is the only organisation which was represented in the DSD consensus group which decided to change the nomenclature from “intersex” to “disorders of sex development”. This organisation is not representative of the intersex community. It has almost no intersex membership and is principally made up of medical specialists and people who are not intersexed. (2)
ISNA is the only organisation which was represented in the DSD consensus group which decided to change the nomenclature from “intersex” to “disorders of sex development”. This organisation is not representative of the intersex community. It has almost no intersex membership and is principally made up of medical specialists and people who are not intersexed. (2)•Alice Dreger is not intersexed. She is one of the main activists who speaks for us and who wrote the first article in a medical journal recommending that the term “intersex” be replaced by “disorders of sex development” or DSD. (3)
Alice Dreger is not intersexed. She is one of the main activists who speaks for us and who wrote the first article in a medical journal recommending that the term “intersex” be replaced by “disorders of sex development” or DSD. (3)•Emi Koyama is a multi-issue political activist. She is featured on ISNA's website as if she is condoning this shift. We in OII do not condone asking her about her private medical history, even though ISNA has often wanted medical proof from intersexed individuals in spite of the fact that many people except the very rich cannot afford all the tests required to determine an exact diagnosis and also that many people have intersex variations for which there is no clear explanation at this time.
Emi Koyama is a multi-issue political activist. She is featured on ISNA's website as if she is condoning this shift. We in OII do not condone asking her about her private medical history, even though ISNA has often wanted medical proof from intersexed individuals in spite of the fact that many people except the very rich cannot afford all the tests required to determine an exact diagnosis and also that many people have intersex variations for which there is no clear explanation at this time.•Eric Vilain is not intersexed but he is willing to speak for us and make statements in the media that the term “intersex” is hurtful. He is also involved in research which could have very tragic consequences for the people he says he is speaking on behalf of. Why does he ignore the overwhelming majority of intersexed people? Click here for more information and Click here also
Eric Vilain is not intersexed but he is willing to speak for us and make statements in the media that the term “intersex” is hurtful. He is also involved in research which could have very tragic consequences for the people he says he is speaking on behalf of. Why does he ignore the overwhelming majority of intersexed people? Click here for more information and Click here alsoFact 2: DSD activists are making medicalisation and normalisation treatments of intersexed infants more legally and medically justifiable.
•By having a medical diagnostic category which combines a group of unrelated “disorders” into an umbrella diagnostic category, DSD activists have made the sex (which is now the disorder) of the infant itself the medical diagnosis. Previously, many intersex variations had their specific diagnosis which made it clear that from a medical point of view these different variations did not have anything in common.
By having a medical diagnostic category which combines a group of unrelated “disorders” into an umbrella diagnostic category, DSD activists have made the sex (which is now the disorder) of the infant itself the medical diagnosis. Previously, many intersex variations had their specific diagnosis which made it clear that from a medical point of view these different variations did not have anything in common. Fact 3: One of the main motivations for switching from intersex to “DSD” was homophobia and transphobia.
•Emi Koyama has indicated that this was part of the motivation for changing the terminology. Cheryl Chase has conceded this in her writings. (4)
Emi Koyama has indicated that this was part of the motivation for changing the terminology. Cheryl Chase has conceded this in her writings. (4)Fact 4: The term is stigmatising.
•Alice Dreger herself, one of the principle architects of the new terminology, admitted that DSD was viewed as stigmatising to intersex people. If one of the main goals of intersex activism is to put an end to shame, then why use it? (5)
Alice Dreger herself, one of the principle architects of the new terminology, admitted that DSD was viewed as stigmatising to intersex people. If one of the main goals of intersex activism is to put an end to shame, then why use it? (5)Fact 5: DSD activists have all the access to the media and deny others any representation when they speak about us.
You can help the intersex community. Spread the word about DSD activism and make sure that other people know that even though these parties may say they represent the intersex community by continuing to use the term intersex and calling themselves intersex activists, we in OII feel they should be called DSD activists and if they have a problem with being called DSD activists, then they should state clearly why.
(2) See ISNA's Medical Board. Also note that some of the doctors are also in control of the actual executive board.
(5) We realize, of course, that any terminology including the word “disorder” can be construed as pejorative. We’d also like to emphasize that we use the abbreviated form of DSD whenever possible. Explaining why this is important, Alice Dreger writes, “we find that, when accompanied by an explanation of what we mean, DSD isn’t terribly stigmatizing. And an important point: the acronym DSD is very useful—and thus, the acronym should be favored over the spelled-out term— because as an abbreviation we don’t focus on ‘disorder’.” We explain what we mean, and then use the term “DSDs.” Thus, we recognize that this is not a perfect term, but we hope ISNA’s supporters and allies will understand that it’s helping us enact real change in medical care. – ISNA Website
http://www.isna.org/node/1028
Note: That entry has recently been removed from the ISNA blog page.
