Thursday, July 30, 2009

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 ( 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.


Anonymous said...

Hi Ronnie
In my opinion this clarification of Mickey Diamond's position and the whole DSD debate is very helpful.

The practice of pathologizing any and variations from an wholly artificial biological norm needs to be revisited.

Albest and thanks.

TinaSD said...

This was a very concise synopsis of the various issues and angles at play in this debate, well done.

What never ceases to amaze me is how human sexual differentiation and related gender roles and issues are treated by medicine as being wholly detached from the biological realities of other flora and fauna, where asexual reproduction, hermaphroditism, chimerism, natural sex changes and the like occur all the time and are not treated as defects...worker bees have no reproductive capabilities, the mangrove killifish (rivulus marmoratus) is not only a hermaphroditic vertebrate but can fertilize its own eggs, and there are even plants that cannot reproduce without the assistance of a member of an entirely different taxonomic kingdom.

Yet when it comes to humans, we are expected to believe that any individual that strays from a strictly binary sex/gender norm and is lacking full reproductive capabilities/desires either by accident or choice is automatically defective.

Anonymous said...

In my Opinion, DSD is a step in the right direction, but it's by no means perfect. Though I hope that someday, they can revise it and make it more clear and accurate to use.

I still believe that the term Intersex should be used because it only apply to those who have a genetic DNA condition and those who are born with Ambiguous genitals.

TinaSD said...

anonymous said-

"I still believe that the term Intersex should be used because it only apply to those who have a genetic DNA condition and those who are born with Ambiguous genitals."

That is not correct-

individuals with 5-alpha-reductase deficiency have 46, XY karyotypes and can present with normal male external genitalia, ambiguous genitalia, or normal female genitalia. Even though they may appear female in both primary and secondary sex characteristics and gender ID, they may become virilized at puberty and their internal testes can descend, and some will develop a corresponding male gender ID.

17-beta-hydroxysteroid dehydrogenase deficiency can similarly cause 46, XY individuals to have complete female external genitalia at birth.

Same goes for complete androgen insensitivity syndrome.

While a full inspection of the entire reproductive system or lack thereof in any of these individuals will show some anomaly, their genitalia often shows no ambiguity at all.

As for the "DSD" terminology, unless there is a concerted effort being made to continue pathologizing people with intersex conditions regardless of their actual functional abilities, it would seem that "variations" could be easily substituted...

especially in light of the very real emotional and social repercussions of having one's entire being labeled as "disordered" (especially when it comes to any related gender identity issues), one would think that people of conscience whose jobs were ostensibly to make the lives of intersex people better would be going out of their way to avoid using such loaded terminology- sadly the exact opposite is true, and anyone who brings these issues up is likely to get smeared as just a kook and a rabble rouser by those pushing the DSD model and terminology...almost none of whom are themselves intersexed, but who presume to speak for those who are.

Zoe Brain said...

I should be meeting Milton Diamond in Hawaii in a few weeks. I'll draw this article to his attention.

We really should gather all the evidence from multiple disciplines in one compact volume.

Anything you'd like me to ask him?

All the best, and thanks so much for your work,

Veronica Drantz, PhD said...

Hi Zoe,

Wow, you’re meeting Milton Diamond in person! I envy you! I regard him as a great biologist and as a mensch who has championed the dignity and rights of all innately sexually variant people.

As far as my article is concerned, Dr. Diamond already knows about it. Much to my delight, he sent me an email thanking me for “defending” him regarding the Davidson work. (I am awaiting Dr. Diamond’s permission to publish excerpts of the emails we’ve exchanged. It will be a while before I hear from him because, at the time of this writing, Dr. Diamond is in Japan and I will soon be leaving for the Michigan Womyn’s Music Festival (MichFest) where I will be giving my presentation as a workshop. No internet in the woods of northern Michigan!)

Yes, there is more than enough evidence to gather from all the disciplines to create a volume that could serve many good purposes. We could all collaborate on its compilation. What a stunning scientific enterprise that would be!

Do I have questions for Milton Diamond? Oh, yes. Here are two questions that have been on my mind for some time.

1. Mickey asserts that transsexual people are a kind of intersex. All the neurological evidence indicates this is, indeed, the case. Gay and lesbian brains are also atypical. Does Dr. Diamond consider gay and lesbian people to be types of intersex as well?
2. The preponderance of evidence indicates that both sexual identity and sexual orientation are innate and independent sensibilities of core sexuality, each having structural correlates in the brain, and that the prenatal organization responsible for each of these sensibilities is hard-wired. How do we explain the people who appear to undergo a dramatic change in sexual orientation?

For example, some transsexuals change sexual orientation upon transitioning with its attendant exogenous hormone treatment. And you, Zoe, have undergone a change in sexual orientation, apparently as a result of natural endogenous hormonal transitioning. In these instances, have the brains been prenatally organized as bisexual in orientation, but these individuals sense the “other orientation” only after activation of the organized brain region(s) by the new hormone levels – i.e. a puberty-like brain awakening? And if this is the case, then how do we explain “ordinary bisexuals” who vacillate back and forth instead of changing sexual orientation. Genetics is a factor also, I’m sure.

I’m curious to know what Dr. Diamond thinks about these questions, and also would love feedback from you, Zoe, and everyone else out there.

Zoe, please give Milton Diamond my regards when you meet him,


Bad hair days said...

> In these instances, have the brains been prenatally organized as bisexual in orientation, but these individuals sense the “other orientation” only after activation of the organized brain region(s) by the new hormone levels – i.e. a puberty-like brain awakening?

As a person who has expierienced this I think this to be defintly the case. What becomes more interesting: I gone off hormones for four years due to health issues and was asexual in that time. Back on hormones (and androgenblockers) men became more interesting again.

Zoe Brain said...

I hope you have a good time at Michfest.

I also hope you can reach some whose minds are not completely closed.

The Michfest forum is no longer the vitiol-filled spitefest that it was even a few years ago, but it's still an unpleasant place. My thanks for making an effort there.

I will be seeing Milton Diamond in about two weeks, and will pass oin your warm regards and your questions to him. Actually, they're ones I've wondered about myself. Especially the change if orientation I experienced - although I think it would be more accurate to say that I acquired an orientation rather than changed it.

As a scientist, it fascinates me. As a rather straight-laced and uptight woman who under other circumstances could have been in the "Concerned Women of America" (or for that matter, the Young Pioneers or BDM) it makes me feel uncomfortable thinking about it!

My one regret is that I will not see your presentations at Michfest. While I have no qualms about taking on the Catholic Church, the John Birch Society, the Southern Baptist Conference and those of similar kidney, I would not feel safe there. While people - and I use the word loosely - like dirtywhiteboi have managed to sic the IRS on transwomen alleging "identity fraud" - claiming marriage benefits for example, because a marriage continues as a lesbian relationship - and while I would be an alien and thus subject to being arrested under circumstances that would otherwise violate the US Constitution, I dare not take the risk. There are some there who would do it in a heartbeat.

It's a lot better than it was though.