I spent this week in Copenhagen, Denmark, representing interACT at the I-DSD conference. This is an international conference for medical professionals and researchers who work with intersex patients, although they also allow patient advocates to attend. My main purpose in going was to support my spouse, Dr. Suegee Tamar-Mattis, and our colleague Kyle Knight from Human Rights Watch in presenting their research into human rights violations against intersex people and their families in medical settings in the United States. Their report, which will be released at the end of this month, has uncovered important testimony by parents of intersex children, who report being pressured and misinformed by their children’s doctors, and by the doctors themselves, many of who expressed grave doubts about the practice of early genital surgery and concerns about how these decisions are made.
It was incredibly important that this research was presented directly to this international group of doctors (many of whom had expressed their doubts anonymously to our research team, but were unwilling to speak up in front of their colleagues). And the meeting underscored for me again that the efforts of community activists and advocates are having a significant impact on the medical community in many different ways.
As we walked into the conference on the first day, we stopped to shake hands with the brave folks from StopIGM.org, who have been protesting these conferences for years. Many of the conference participants walked by their protest signs without looking, but we know that when German medical groups issued new guidelines restricting early genital surgery in 2014, they cited protests by activists as one of the factors that caused them to change. Interestingly, the opening remarks by Eric Vilain featured a timeline of intersex patient advocacy. The first slide, representing the 1990’s, was a photo of the 1996 protest of the American Academy of Pediatrics by a group of intersex activists. This was the only such protest I am aware of in the 90’s, but it obviously made an enormous impact in the minds of the medical community because images of that protest are recycled constantly to show community dissatisfaction with their treatment at the medical conferences I have attended over the years. Villain’s presentation went on to highlight actions by interACT and other community organizations, such as litigation efforts and the public resignation of many community groups from the Translational Research Network over ethics concerns, leading to his conclusion that a legal ban on unnecessary genital surgery is not far away. This keynote address underscored that the medical community is feeling the pressure from patient advocates to change practices that violate the human rights of our children, and that they are beginning to accept that this change is inevitable.
Suegee and Kyle raised that pressure in their presentation, presenting quotes that reminded the room full of practitioners that parents who are misled or pressured into agreeing to early genital surgery will be outraged when they eventually learn the truth. They also shared quotes demonstrating what we have long known – that a growing camp within the medical community believes that early genital surgery is not in the best interest of intersex children. Unfortunately, too many of those voices have remained silent. At the end of the second day, interACT board member Dr. Arlene Baratz and I led a workshop designed to encourage medical providers to share these doubts, as well as their techniques to support families in delaying genital surgery. While the workshop was well-attended, the voices of providers remained hesitant. However, many came forward at the end of the workshop to sign up for a listserv of like-minded doctors who want to continue discussing a new paradigm of care.
Years ago, a well-known researcher approached me after I presented at a medical conference to tell me that interACT “would never get a seat at the table” if we continued presenting such “radical” ideas. (The radical idea I had presented that day was that intersex children should be treated with the same caution as transgender children are when irreversible interventions are contemplated.) We didn’t listen then, and we won’t stop now. Attending the I-DSD conference convinced me that we really are on the cusp of important change in the medical treatment of intersex children. To all my fellow activists, I want to encourage you to keep speaking out wherever and however you can — in the press, in your doctor’s office, at your schools and colleges, in your support groups, on social media, and to your government representatives. If you are not able to speak up, for whatever reason, support someone who can. Our voices are making a difference, and the time to act is now.