New study confirms OII’s message: we are “Intersex”, not “DSDs”!
A recent study published in the International Journal of Pediatric Endocrinology (March 16, 2015), titled, “Congenital adrenal hyperplasia patient perception of ‘disorders of sex development’ nomenclature”, found that:
“71.0% disliked or strongly disliked the term DSD. 83.6% stated they did not identify with the term DSD. 76.0% felt that the term DSD has a negative effect on the CAH community. There was no significant difference in opinion of DSD between classical females and other CAH patients, between US and international, between surgical and non-surgical patients, or between patients and parents. There was no correlation with patient age.”
We are thrilled, given OII’s long history of opposing the Intersex community’s pathologization with the term DSD, to see these findings, and to have them circulated in a medical journal! In 2006, when Intersex people were pathologized as “Disorders of Sex Development/DSDs” upon request by ISNA, the Intersex Society of North America (in a paper authored by ISNA members, which you can read here: http://www.aissg.org/PDFs/Dreger-Nomenclature-2005.pdf), OII responded with vehement opposition and were often criticized for doing so, and/or asked to accept DSD, by members of ISNA (defunct since ’08) and other parent run and/or focused organizations who began using the label despite the global community’s passionate cries that it was hurtful and stigmatizing. We resisted and continued to promote “intersex” pride and acceptance, because we have always believed and promoted that being intersex is not something inferior or disordered that needs to be fixed. In 2010, OII-USA was founded by long-term intersex and gender fluid activist Hida Viloria to advocate for equality, acceptance and human rights for intersex people. Since 1996, Viloria has promoted the message that we are uniquely equal human beings, and, since our pathologization in 2006, that we should be described as such with the label “intersex”, rather than simply as people that are disordered or different from the norm (as outlined in depth in he/r essay, “What’s in a Name: Intersex and Identity”.
While some have begun substituting “Differences” for “Disorders” in the DSD acronym, as Viloria has noted in numerous community discussions, lectures and presentations, while we welcome a de-pathologized diagnostic medical term, other communities seeking equality and acceptance do not refer to themselves with their diagnostic medical labels. For example, being transgender was long diagnosed as “having gender identity disorder”, but trans* people did not advocate for their human rights by calling themselves “people with gender identity disorder” (or now, as “people with gender dysphoria”), and that was a good thing, as their de-pathologization and increasing legal protections and social acceptance demonstrate. Also, we prefer the diagnostic term “Intersex Traits” — coined by former OII Australia President Gina Wilson, who tirelessly initiated OII Australia’s successful effort to attain the first (& currently, only) legal protections for intersex people in the world, as well as elective (meaning only given to those who request it) legal gender recognition for intersex Australians — as well as other non-binary Australians & those who do not wish to identify their sex on legal documents– with an “X”, rather than “M” or “F”, sex marker, representing “Indeterminate/Intersex/Unspecified”. Unlike the new DSD, “Differences of Sex Development”, or other terms such as “Variations of Sex Anatomy”, “Intersex Traits” doesn’t frame us as inherently “different” from some kind of “norm”. History demonstrates that terms that express one’s unique identity, rather than simply one’s difference, have been a success tool for advocating for equality, For example, people with less common sexual orientations have been successfully advocating for social equality and civil rights by using the identity labels “gay”, “lesbian”, “bisexual”, “queer”, etceteras, rather than terms such as “people with differences in sexual orientation”. We also note that many other communities who, like intersex people, have inborn physical traits that are different from the norm, have been using identity terms such as “deaf people” to advocate for acceptance and equal rights, rather than terms such as “people with hearing impairments”, that frame them as inherently limited or inferior.
We thus encourage all allies and professionals involved in educating about intersex people and traits — particularly those working with impressionable intersex kids and/or their parents — to take note of OII’s message and this recent study’s findings, and to refer us as unique, but equal, people by using our original, preferred label, “intersex”. You can say “intersex people”, or when speaking about specific individuals, you can call us “intersex women”, “intersex men”, or for those of us who are non-binary in our gender identity, “intersex persons” — just ask us which we prefer. :) Thanks!
The term “Intersex” is the most descriptive, most neutral and most widely recognized term. That is why Intersex people chose it as our approved umbrella term. Yes, WE chose it as part of lengthy international discussions over years starting with the advent of the internet which is how we found each other. I was there, so was Hida, Curtis, Mish, Bo (under a pseudonym), Manny and many, many more some of whom have retired or passed. Disorders of Sexual Development did not exist in the lexicon of Intersex describers or in any of the diagnostic terms for the more than 30 conditions & factors that result in Intersex. It was coined by Northwestern U. who tried to sell the term and a variety of medico-socio “case management” protocols only a very few of which addressed health issues but instead “managed” our sex/gender for the purposes of homogenizing us into invisibility. The marketing program fell flat on the national and international scale but gained local prominence for some time. Those who did all the remarkable due diligence of documenting this as it unfolded in the late 90’s – turn of the century, (am I remembering right? Help!) did an incredible job and the writing is still out here in the ether. Curtis Hinkle was one of the ones who did a whole lot of investigative reporting on it both prior to and after his establishment of Oii. It was politically hot which is one of the reasons his writings and the organization went out of the U.S. to Francophone Canada and beyond before re-entering the U.S. translated back to English. None of that is necessary anymore as Intersex people, our allies and our ballooning number of advocating Physicians are displacing John Money’s bizarre social experiment that used the Intersexed and Transsexual as guinea pigs by bamboozalling several large research Hospitals around the world out of science and into social engineering at a profit.
As long as we had been terrified, shamed, and isolated this was a cinch. No more.
This is the only writing you will find me make on this subject. Hida did a great job – much better than me at responding but I felt like this was the time and place to add a little history. I never, ever use or acknowledge those terms even when answering the question of what our most universally desired describer of ourselves is. No one in New York has ever asked me about them which I take as an indication that they’ve never heard them – all the better. They won’t learn it from me. I’d like to encourage any and all Intersex, parents, relatives, friends and allies to do what Betsy Driver cheered everyone to do back when we all hung out at Bodies Like Ours; “Just tell 5 people about what Intersex is and the person you are or know and ask them to tell 5.” Before you know it we will not only be a household word – we’ll be out of closet, and sitting in the living room with our feet up.