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.

Milton Diamond Reviews A Half Century Of Science On Sexual Development

Clinical Implications Of The Organizational And Activational Effects Of Hormones

Milton Diamond, who I regard as the most important figure in modern sexology, has reviewed the scientific history of the nature-nurture debate about sexual behavior. This is a wonderful summary of the science, the theories, and the medical controversies regarding intersexuality and transsexuality written by a leader in the field. Below is the abstract of Dr. Diamond’s article, “Clinical implications of the organizational and activational effects of hormones” which was published in the journal Hormones and Behavior in March 2009.

"Debate on the relative contributions of nature and nurture to an individual's gender patterns, sexual orientation and gender identity are reviewed as they appeared to this observer starting from the middle of the last century. Particular attention is given to the organization-activation theory in comparison to what might be called a theory of psychosexual neutrality at birth or rearing consistency theory. The organization-activation theory posits that the nervous system of a developing fetus responds to prenatal androgens so that, at a postnatal time, it will determine how sexual behavior is manifest. How organization-activation was or was not considered among different groups and under which circumstances it is considered is basically understood from the research and comments of different investigators and clinicians. The preponderance of evidence seems to indicate that the theory of organization-activation for the development of sexual behavior is certain for non-human mammals and almost certain for humans. This article also follows up on previous clinical critiques and recommendations and makes some new suggestions."

This is the paper to read if you are looking for a quick way to be brought up to date on the evidence for the “organization-activation theory” of sexual development and an understanding of the controversies on “core sexuality”. Here is the complete article entitled Clinical Implications Of The Organizational And Activational Effects Of Hormones.

"Gender Puzzle" - What is a female? a male?

Here is the summary of the documentary "Gender Puzzle".

"Are we on the cusp of discovering what determines gender? The old mantra - all girls have XX chromosomes and all boys have XY - is no longer reliable. Scientists are now looking beyond chromosomes to "brain sex" and the role of newly discovered genes. By studying transsexuals and people on the gender extremes, they believe they can unlock the gender puzzle. This high-quality documentary looks at the new and challenging science of gender.



Tall, thin and strikingly beautiful, model Christie North always felt female. But when she was 15, she discovered she’d been born with male chromosomes. “There was no mention at school that there can be mix ups with your chromosomes”, she complains. “Many people have the same problem – more than you think.” As well as girls with XY chromosomes, one in 500 born with a double XX as well as a Y. Most only find out about their condition when they try to father children and discover they’re infertile. Until the 1990s, gender was largely about chromosomes. But this principle was challenged when a new gene was discovered which is needed to start the process of ‘maleness’. “I think we’re starting to understand how the brain is hard-wired differently between males and females”, explains Prof. Vince Harley. Scientists are now looking at a further 54 genes which are turned on differently in males and females. They may help to explain why people identify as one gender or the other, regardless of chromosomes. There is a small but growing body of evidence that transsexuals’ brains are hard-wired in the uterus to be either male or female. A Dutch study found that male-to-female transsexuals have the same brain features as other women instead of being identical to men’s. “There is a public perception that transsexualism is a lifestyle choice”, states Prof Vince Harley. “To reaffirm a biological basis is quite empowering for them.” These discoveries are starting to redefine the gender debate. In the 60s and 70s, it was believed the nature of a child’s upbring had such a strong influence that an intersex condition could be corrected through the right upbringing. The child was allocated a sex, underwent genital surgery and was then raised in its assigned sex. But many of these children had a traumatic childhood, unable to reconcile their identity with their bodies. For them, the ‘brain sex’ theory makes perfect sense. The theory of brain sex is also challenging the law. ‘Kevin’, a transsexual, was threatened with imprisonment if he married his female partner. He successfully contested this by providing the court with evidence suggesting a biological basis to his transsexualism. In his verdict, Justice Richard Chisolm concluded: “In view of all the evidence, the things that characterise transsexuals are as much biological as mental.” Far more controversial than adults changing gender, is the issue of teenagers who want to. “All the medical evidence indicates that the earlier children with transsexualism receive treatment, the better their lives are”, reasons lawyer and transsexual Rachel Wallbank. But others disagree. “You’re wondering all the time whether the young person actually has enough life experience to make that judgement”, states Craig Andrews. He runs a support group helping transsexuals and is concerned about the increasing number of young people who want treatment. As science discovers more about what determines gender, making these decisions may become a little easier. But for now, we are only just starting to understand just how complex the biology is."

And here is the complete transcript of this video.

See my PowerPoint slides for more information on intersexuality and transsexuality.

"Science and Sexuality" Presentation at Michigan Womyn's Music Festival

My presentation entitled "Science and Sexuality" will be given as a workshop at the National Womyn's Music Festival (aka MichFest) which runs from August 4th through the 9th in the woods near Walhalla, Michigan.
The evidence presented in my PowerPoint slides will be thoroughly discussed and additional information not in the slides will be woven into the talk. As always, questions and discussion will follow the presentation.

Here are the details:
Event: Workshop entitled "Science and Sexuality"
Day: Thursday, August 6th
Time: 3-5pm
Location: MichFest near Walhalla, Michigan
Site: Media Tent

MichFest is the first and the biggest of all women's music festivals and is attended by thousands of women from all over the United States who will coalesce in a tent city that pops up overnight in the woods of northern Michigan for the thirty-fourth year this August. As a largely lesbian event, this is a great venue for reaching a large number of women who already know the pains of being sexually different in a binary gender culture. If the MichFest audience receives the scientific information about intersex and transsexual persons as sympathetically as the audience at the National Women's Music Festival in Wisconsin did just a few weeks ago, then I will be very pleased.

Five Genders of Indonesia

Sex is biological. Gender is defined by culture. There are five genders in Indonesia. These Indonesian transsexuals seem comfortable with their somatic selves. Is this because the culture "welcomes" them and they are not forced to fit themselves into one of only two categories?