“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” This insight from Margaret Mead functioned as the guiding inspiration for those of us who worked for years as the Intersex Society of North America. A footnote to a recent Hastings Center Report article made clear Mead was right. And, because Mead was right, the history of social change (including in medicine) is actually significantly more interesting than it at first appears.
In the September-October issue of the Hastings Center Report, Ellen Feder and Katrina Karkazis examine the politics of names used to talk about people born with something other than what counts as standard-male or standard-female anatomy. In particular, they look at the shift to the term “disorders of sex development.” Footnote number 13 reads as follows:
The change in nomenclature emerged out of a confluence of events occurring in 2005. In response to the controversy provoked by the use of the term intersex, the Intersex Society of North America (ISNA), an advocacy group, argued for new terminology that it sought to introduce in parent handbooks and clinical guidelines it was preparing (see also A. Dreger et al., “Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale,” Journal of Pediatric Endocrinology and Metabolism 18 (2005): 729-33). During this same period, the U.S. and European endocrinological societies convened a meeting [in Chicago] to revisit the standard of care for intersex, providing an opportunity for advocates of the change in nomenclature to argue for a formal change and for announcing it in a consensus statement. When those at the [Chicago] meeting settled on “Disorders of Sex Development,” ISNA followed the usage for the handbook[s].But it is inaccurate to suggest that we in ISNA followed the pediatric endocrinologists in using the term DSD. If anything, it was the other way around. On the surface, it might seem to make sense that the pediatric endocrinologists, with whom we in ISNA long struggled, coined the medicalized term—and ISNA just decided to reluctantly go along. After all, why would a shift to a medicalized term like “disorders of sex development” be primarily initiated by our side, when we had been arguing for de-medicalization of intersex?
And yet, as I have explained elsewhere, so far as I can tell, most of the impetus came from us. In a nutshell, Bo Laurent (then publicly known as Cheryl Chase) and I—after many discussions with our clinical allies and our allies in diagnosis-specific support groups—became convinced that the term “intersex” was getting in the way of reforming the medical treatment of children born with intersex. We could not seem to move towards a consensus of treatment reform under the umbrella of that term. And treatment reform was the goal.
So we started thinking about moving to a new term. The reason I wrote the article cited in that footnote (“Changing the Nomenclature”) in November of 2004 was to begin that push. (The article was co-authored by Cheryl Chase, my mate Aron Sousa, Joel Frader, and Phil Gruppuso.) Then, when I re-drafted the handbooks in mid 2005, I used the term “disorders of sexual differentiation,” a slightly different “DSD” that had occasionally been used in the medical literature. We hurried up those “DSD Guidelines” drafts so that they could be distributed at the 2005 Chicago “consensus” conference. So far as I can tell from my files, the drafts at that point used the term “disorders of sex(ual) differentiation,” though we had started to move to “disorders of sex development” for reasons I have explained elsewhere.
Bo, our clinical allies, and I knew enough about medical “consensus” conferences to know what Chomsky had shown: consensus is manufactured. We wanted to make sure “consensus” got manufactured in Chicago in the shape we believed was right for children with sex anomalies. So, in advance of the Chicago “consensus” conference (a strictly controlled, invitation-only affair), those affiliated with ISNA who would be attending the conference discussed specifically what to push.
I had not been invited to the conference, but I drafted a “talking points” memo for those ISNA allies who would be going, namely Bo, Eric Villain, David Sandberg, and Bill Reiner, and we circulated those talking points among our group of five until we were all on the same page. Included on that were only items we thought could realistically get included in the consensus statement. The first bullet called for an articulation of the goals of treatment; we believed if goals could be articulated, clinicians would start taking seriously questions of ethics and evidence. The second bullet on the list regarded a change in nomenclature. In Chicago, Eric in particular led the charge for that change. But having all our allies push for it made it sound as if there was a consensus that nomenclature had to change.
Change it did. And when, as the Feder and Karkazis footnote says, the “consensus” group settled on “disorders of sex development” as the specific language, I made sure the handbooks conformed to that language.
What I’m trying to point to here is not an issue of priority. I’m perfectly happy if someone wants to claim priority on this shift (and heaven help them with the activists who don’t like the term). What I’m trying to point to here is how a small group of people used the substantial knowledge they had—knowledge about language, about rhetoric, about medicalization, about social change, about “consensus”—to make a change that has appeared to be quite effective in moving us towards the ultimate goal: better clinical care.
“How are you all going to do that?” people asked me along the way in the intersex rights movement. To which I usually answered, “I don’t know, we’ve never done this. But we’ll ask around, and read, and figure it out.” I still laugh when I remember how we picked the font for the DSD Clinical Guidelines handbook. We wanted the guidelines to look authoritative, as if they could have come from the medical establishment itself. So I asked my internist mate—who had been an ISNA advisor for a decade—what font he thought would work for that. “That’s easy,” he said. “Use the New England Journal of Medicine’s font. Every doctor looking at that font subconsciously thinks truth.” So we did.
The handbooks have had quite a good reception, which would have been impossible without the nomenclature shift. They’re now distributed by Accord Alliance, the next logical advocacy group in the chain of reform work….
This morning, as I thought about whether to write this footnote to a footnote, I was out on an errand. I was taking Ryan Klute, the head of my city’s Obama for America office on a shopping spree to Office Max. Our local Obama team is hard-working, exhausted, and out of supplies. And we’re in the swing state of Michigan. My mate and I had been planning to donate that money directly to the national campaign. But then we heard the local office was out of supplies and we realized it made more sense to get our local group of committed citizens some fresh pens and clipboards, along with some better chairs. You know, so they could change the world. On the way, Ryan asked me what I do for a living. I told him. Turns out he read my work on intersex in his college classes.
Naturally, then, while we were on our way back from Office Max, suddenly it seemed obvious to me that I should write this. Ryan and all the political operatives at work all over this nation would, at some level, relate to my reading of footnote 13. It actually only takes a few people to steer a roving beast, if they know what they’re doing. And if you don’t steer, someone else will. Better us than Karl Rove or big pharma.
Speaking of which, I’m working now on a different project: rationalizing the care of children with short stature, particularly where growth hormone is concerned. I’m using all the tools I collected in my intersex work, including my knowledge of the one-two punch: hitting the medical community through their literature while changing the social perception of a “defect” through the national media. So I’m drafting evidence-based clinical guidelines in stiff prose, in NEJM font, while throwing together web-based viral videos about cool short people. It’s a little challenging to do it all at once, with no organization and no real budget. But I got myself some really pretty Post-It notes at Office Max, and I’m working with some really smart, really good people who never, never say to me, “You can’t change society.” Yes, we can. And we do.
This essay originally appeared in Bioethics Forum. The author thanks Erik Parens and Aron Sousa for their help with this essay, and more generally for their beautiful, bitter optimism.
 Ellen K. Feder and Katrina Karkazis, “What’s in a Name? The Controversy over ‘Disorders of Sex Development,’” Hastings Center Report 38, no. 5 (2008): 33-36.
 The handbook drafts had originated years before, under the authorship of social workers Chris Feick and Sally Follie, and they had understandably then used the term “intersex.”