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Questions and Answers about Intersex/DSD

difficulty goes beyond simply finding the right terminology

Date: 04/30/2011

Trevor and all,

On Apr 30, 2011, at 1:59 PM, Trevor Holmes wrote:

2. assertions that intersex is worth saving, reviving, recuperating as a term (and an identity category) in the face of the (mostly American) "Disorders of Sex Development."

I actually think that the term "intersex" is being revived and recuperated precisely *because of* the proliferation of the term "Disorders of Sex Development," not in spite of it. Because "intersex" is officially retired from the medical taxonomy, activists and others are now free to take it on as an identity label without the implication that who they are is defined by the medical establishment.

Even though the vast majority of people who currently live with intersex conditions (or DSDs) do not embrace the term "intersex" to describe themselves, I feel that it may change in the near future. We are already beginning to see generations of younger intersex people growing up without unconsensual surgeries, without extreme forms of shame or isolation, fully intact and aware of their own bodies, struggling with being different in a society that does not recognise their existence, but with people who love and support them for who they are.

The intersex movement that we will see in a couple of decades will be radically different, and intersex people's relationship to the label "intersex" will be also very different from what it is today. "DSD" will probably be used as a medical terminology for the foreseeable future, but it will not prevent the resurgence of "intersex" as an identity label.


Emi Koyama (Director, Intersex Initiative)

Date: 05/02/2011

Hi everyone,

I'm responding to multiple posts on this topic, but I want to first offer my FAQ about the DSD/intersex controversy, which can be found here:

This should answer most questions people have. If you have additional questions that should be addressed, please email me.

On May 2, 2011, at 2:30 PM, Todd Jennings wrote:

Under what conditions, and with what perspectives and reasons, might someone have for choosing to self-identify with the term "disorder" which implies pathology rather than "intersex" which seems to imply non-pathological variation?

"DSD" was never intended to be a term describing identity. In a handout titled "Why change the medical nomenclature?", Cheryl Chase explains:

Label a medical condition, not a person

The label "intersex" appears to label the person, not the condition. Thus, the circuitous phrase "person with an intersex condition" is needed if you want to make clear that the person is not the condition. It's quite clear that a "disorder of sex development" is something that a person has, not something that a person is.

Label a medical condition, not an identity

"Intersex" is often understood to imply that the person is not a man or a woman, and indeed, in recent years, the term has been embraced by some intersexed people to emphasize that they experience themselves as not being a man or a woman. And yet many people with intersex conditions do experience themselves as men and as women. The way intersexed people experience their gender identity is very diverse. So in a medical setting, a label is needed which allows us to discuss the patient's medical condition. Especially when considering newly diagnosed infants, it is important that the label not mis- lead the medical professional into feeling some certainty about the patient's ultimate experience of identity.

If anyone wants to read this document, search for the title--OII seems to have made it available online.

Also, please remember that even though some intersex people do embrace "intersex" as an identity category, majority of those who might be described as "intersex" don't identify with that term. They also don't identify with "DSD." Most people view themselves as men and women who have a specific condition, like AIS or Klinefelter's.

These people obviously don't join "intersex" groups, or speak out publicly as "intersex" individuals, so you'd never hear about them if you only look for "intersex" voices. But there are far more of them among condition-specific support and peer advocacy groups.

On May 2, 2011, at 3:42 PM, Victoria B wrote:

I don't see that being the case at all. Something labeled a disorder cannot at the same time create the impression of normal variation.

I think what many people have difficulty understanding is that there is a trade-off between different types of stigma. Being labeled as having a "disorder" can result in a type of stigma, but that is what medicine does to everyone and there is a sense of normalcy to being treated just as a patient who is experiencing a medical condition, just like people who have diabetes or bipolar disorder.

Some people find the label "intersex" liberating, but others find it stigmatizing because they view themselves as not in between sexes, which is what the word seems to imply to many people, but ordinary men and women who happen to have a medical condition.

Another thing many people do not seem to understand is that naming of "DSD" was a product of negotiation and compromise. It's not like ISNA one day decided that "DSD" would be a good label for intersex conditions. I feel that people overestimate how much influence ISNA had in the 2005 Consensus Meeting process, and hold ISNA responsible for a lot of things that were not in its power to do anything about.

The 2005 meeting brought together 50 professionals working in the field, plus 2 activists (Cheryl and another person from Europe). Then they broke into smaller "working groups"--forcing the two intersex activists to choose two working groups that they wanted to have influence in the most, and each of the two activists had to face off 5-6 medical professionals alone. This format as well as the fact that there were only two intersex individuals participating in the process made it difficult to get what we wanted, but the only alternative was to storm out of the meeting, ensuring that in the future there won't even be two seats at the table for the activists. Is it the fault of intersex activists if the end result wasn't 100% satisfactory?

This deep disjunction is no doubt the source of the controversy that ended the organization?

The organization didn't end because of the controversy; rather, the controversy happened long after the organization was destined for closure. I remember that back in 2001 Cheryl was already talking about changing the name of the organization, mainly because most people who might be described as "intersex" do not like the term.

On May 2, 2011, at 4:26 PM, Diggs, Marylynne wrote:

However, I am curious about why "Disorders of Sexual Development" seems less sexual than "Intersex" and even more concerned about why we would want to emphasize "Disorder" with parents and medical professionals.

First, it's "disorders of sex development," not "sexual." The consensus group specifically discussed this issue, and chose "sex" over "sexual." (Also, at one point it was "disorder of sex differentiation"--which was rejected because doctors and geneticists had different definition for the word "differentiation" and they needed a common term.)

That, it seems to me, perpetuates the idea that intersex is a medical problem that requires intervention. Why not "Variation in Sexual Development" or something else more neutral? Is it to allow treatment if needed (similar to disability status and other medical designations for gender dysphoria?)

That is correct. I would personally like "variation" or "anomaly," but doctors don't treat "variations." And treatments are needed, not to perform unconsensual genital surgeries, but to correctly identify the condition, monitor potential metabolic issues, and provide psychological support and other medical help as the child grows older.

Also, are people adopting DSD as an identity or is it merely a diagnostic term.

Neither. DSD refers to a long list of medical conditions, so nobody can be diagnosed as having DSD--it's not a diagnostic category.

Is this like Gender Dysphoria v. Transgender, Homosexuality v. Gay or Lesbian.

I think the biggest problem is that majority of people who might be described as "intersex" do not view themselves as belonging to the same umbrella group, regardless of the label. People who are speaking in favour of one label or another are altogether in the small minority because most do not even see the need for the label to begin with.

As an activist I feel that we need a label to talk about medical ethics and protocol, children's rights, and other political/philosophical issues. I continue to use the term "intersex" for this purpose, and use "DSD" only when I'm addressing the medical community. But that has nothing to do with how individual intersex people (do or should) identify; it's just a matter of convenience that I use any term because in reality most people do not view themselves or their medical condition as "intersex" or "DSD."

Emi Koyama