Intersex People – Disordered or Different? The DSD Debate

Curtis Hinkle – founder of OII

Should intersex people be regarded as having a disorder that needs to be fixed or should they be viewed as natural variations and simply different? Robert Davidson has traced the framing processes executed in a debate over the reshaping of a code among three groups of the intersex social movement in order to understand how the groups engage with the medical discourse on intersex. His paper entitled “DSD Debates: Social Movement Organizations’ Framing Disputes Surrounding the Term ‘Disorders of Sex Development’” is an ongoing PhD research project that summarizes the history surrounding the medical community’s treatment of intersex people. It also includes discussion of the influence of John Money and his nemesis Milton Diamond.

Davidson does a good job of explaining the history of the term Disorders of Sex Development (DSD) and analyzing the different perspectives of the three intersex organizations on the issue of terminology: disorder versus difference/variation. Here is an excerpt from the introduction of his paper:

“In the last 15 years discussions around ‘intersex’ have increasingly moved beyond the medical/biological realm and taken growing prominence in gender studies, within social movements, and in the socio-cultural realm. This shift was highly promoted by social movement organizations (SMOs) that have arisen to address various issues related to intersex and was also encouraged by some academics in the social sciences and the humanities. Social movement research is only beginning to address intersex advocacy in social movement terms (Turner, 1999; Preves, 2005; Greenberg, 2006). Research regarding social movements in the last two decades has paid increasing attention, however, to discourse (Steinberg, 1998) and how social movements engage with cultural institutions and use frames (Snow & Benford, 2000) to reshape cultural codes (Melucci, 1985, 1996). This article traces the framing processes executed in a debate over the reshaping of a code among three groups of the intersex social movement in order to understand how the groups engage with the medical discourse on intersex. A medical discourse on intersex is traced based on a Foucauldian perspective. A textual framing analysis of the websites of three intersex SMOs is then presented to examine the internal frame disputes between them over the proposed terminology ‘Disorders of Sex Development,’ or ‘DSD’. The SMOs included are the Intersex Society of North America/Accord Alliance (ISNA/Accord)1, Organization Intersex International (OII), and Androgen Insensitivity Support Group UK (AISSGUK).”

While it is a minor point in the paper, I wish to inform the reader that Davidson mischaracterizes Milton Diamond when describing Diamond’s role in discovering the John/Joan hoax, when he says: “This discovery led to the critical reevaluation of the Money Protocol but has had other problematic side effects, as Diamond and Sigmundson have used this case to re-institute a binary view of sexuality (emphasis mine) based on prenatal influences of androgens on the brain.” Untrue! Diamond would be among the very last to advocate a binary view. Milton Diamond has an evolutionary perspective (like any good biologist) and has repeatedly demonstrated how he values diversity. Diamond is widely quoted for saying: "Nature loves diversity, society hates it."

Dr. Milton Diamond

This controversy over whether intersexuality per se is a disorder was addressed in 2006 in the journal, the Archives of Diseases of Childhood. Here is the letter that Dr. Milton Diamond sent to the editor. In this letter, Dr. Diamond chides the medical profession for its arrogance: “What medicine observes are variations in human sex development, it does not know the biological purpose of such variations, and there remains great controversy about how, whether or when to intervene. Terms such as error or disorders reveal an unwelcome arrogance in light of medicine's limited vantage. Medicine can do better. One way is to, instead, use the term Variation in Sex Development (VSD), a term that is without judgment and neither prohibits or ordains medical intervention”

And here is what Dr. Diamond had to say about this issue in a footnote of his recent historical review of the science on sexual development: “It has been recommended that intersex conditions be referred to as Disorders of Sex Development (DSD) (Hughes et al., 2006. Consensus statement on management of intersex disorders. Archives of Disease in Childhood. 91, 554-563.). This I refuse to do. I consider using the adjective disorder to be demeaning and pejorative to the individuals so identified. And so too does it seem insulting to members of the Organisation Intersex International, the largest intersex organization in the world (http://oii-usa.blogspot.com/2006/08/three-intersex-activists-defend.html). I use the abbreviation but with the meaning of Differences of Sex Development Diamond and Beh, 2008. Changes In Management Of Children With Differences Of Sex Development (Nature Clinical Practice: Endocrinology & Metabolism. 4, 4-5).”

So Milton Diamond refuses to refer to intersex people as disordered and likes to turn the acronym DSD into "Differences of Sexual Development". He also favors “Variations in Sex Development” that is advocated by Organization Intersex International and its founder Curtis Hinkle.

I agree with Milton Diamond and Curtis Hinkle that intersex persons are natural variations and are not disordered. In my presentation of “Science and Sexuality”, I discuss the different perspectives of biologist versus medical doctor. A dominant theme of my presentation is “Difference does not equal disorder.” Biologists see differences or variations. Medical people are predisposed to see disorders or anomalies or aberrations or faults or pathologies that they can “rectify” (for a fee of course). Medical professionals want to “fix” people even when the people are simply different.

The cultural taboo nature of sexual matters has allowed untold thousands of sexually-different people to be grossly mistreated by the medical profession and to suffer in secrecy and shame. Three sexual groups have been medicalized and pathologized by the medical professions: gay/lesbian people, transsexual people, and intersex people. (Note that intersex people have sexual identity and sexual orientation issues also.)

Gay and lesbian people were mentally-disordered in the United States until the Diagnostic and Statistical Manual (DSM) was revised in 1973 and remained mentally ill elsewhere in the world according to the International Classification of Diseases (ICD) until 1992. Some quacks (e.g., Exodus International) still purport to do “reparative therapy” on gay people. Now reputable psychologists and psychiatrists do not treat gay or lesbian people for their sexual orientation but do treat other problems caused by the culture’s treatment of homosexual people. The culture is disordered, not gay or lesbian people!

As for transsexuals, who are currently regarded as mentally disordered in the DSM and ICD, any medical concern (e.g., gender dysphoria) can be treated without considering transsexuality per se as a disorder. (This is my position in my letter to the American Psychiatric Association regarding the revision of the Diagnostic and Statistical Manual).

The same logic applies to intersex people. Treat any problems the patient presents and wants treated but do not consider the intersex condition itself as a disorder – consider it as a natural variation, one of the many differences to be expected in any normal population. The stigma of the label “disorder” should be replaced with “difference” or “variation”.

People do not need surgery just because their genitalia are ambiguous. Many intersex people have an “intersex identity” and their anatomy feels appropriate to them. I know of intersex persons who would gladly identify as “intersex” if the culture permitted. (Of course, intersex persons should be able to decide what surgery, if any, they require. Only they can know that - because only they can know their sexual identity, their unique sensibility which is something else again and is an issue some intersex people share with transsexual persons.)

Intersexuality is natural. Intersex people should come out of the closet. There should be no secrecy or shame. Intersex is beautiful! Intersex people do not need to change; the culture needs to change. Society needs to be enlightened, and the culture should change to acknowledge and accommodate intersex people.