Open Letter to AIS-DSD Support Group

February 1st, 2018

Dear Androgen Insensitivity Syndrome & Differences of Sex Development Support Group (AIS-DSD SG),

We would like to applaud the recent strong position you took in this joint statement with Interact, in which you co-announced that you would be in solidarity with the global intersex activist community by not participating in a study that had no initial input from intersex people--championing the South African disability rights movement’s slogan Nothing About Us, Without Us. You noted that the clinical researchers should have known better, for various reasons, including that both Phoenix Children’s Hospital and Cincinnati Children’s Hospital have “shown their strong support for our community by sponsoring AIS-DSD SG continuing medical education conferences [CME] and support group meetings.” You also rightfully pointed out, “we cannot allow ourselves to be bystanders in yet another study that neglects our priority for community based participatory research.” We couldn’t agree more.

However, similarly to how you felt the aforementioned hospitals were “abusing” your trust, we feel betrayed by AIS-DSD SG. We can’t understand why, after repeatedly having your trust broken, you would willingly enter into yet another relationship with an institution that does not value intersex people. We feel deeply hurt by your decision to allow another children’s hospital--one that still performs intersex genital mutilation (IGM)--to sponsor the support group meeting in Chicago this summer.  

By their own accord, Ann & Robert H. Lurie Children’s Hospital of Chicago’s Sex and Development Program still promotes “surgery to reduce the size of a large clitoris or surgery to remove a gonad that is at risk to develop cancer.” Clearly, Lurie’s practices not only avoids the Nothing About Us, Without Us standard, but they are in clear violation of our movement’s core demand since the early 1990s which has consistently advocated for an “end to secrecy, shame, and unwanted surgeries.” 

As someone who has been both a participant in AIS-DSD SG, and a former patient whose human rights were violated repeatedly at Lurie, I’m horrified to see Lurie listed as a Gold Orchid Sponsor on your homepage. AIS-DSD SG is a place where I have sought support and refuge for over a decade, and now those responsible for my harm, and that of so many others, are being heralded as not only gold sponsors, but orchids--a term created for us, by us.  

This brings us to our main reason for writing this letter. We would like to invite you to be in further solidarity with us. Instead of allowing those who perform IGM at Lurie to sponsor the AIS-DSD SG meeting, we demand that Lurie--and all children’s hospitals who profit from our pain--be immediately dropped as sponsors from our support group meetings unless they publicly apologize and commit to working with us on phasing out all non-life saving surgeries on intersex patients before July 1, 2018. If they refuse, we demand AIS-DSD SG return their donation, and remove their Gold Orchid Sponsorship.  

On Intersex Awareness Day 2017, we co-led a protest with allies out front of Lurie to demand justice and will continue to do so. Yet, how can we continue to do this when our own support group can’t even do the same? We are asking you to take a stand as outlined in our demands and set an example for future leaders in the intersex movement.


Pidgeon Pagonis
Intersex Justice Project

Sean Saifa Wall
Intersex Justice Project

Countdown until Lurie hosts the AIS-DSD Intersex conference:









Intersex Awareness Day (2017): #LurieEndSurgery Protest Press Release and IAD Statement

Intersex People of Color for Justice