Last week in Cincinnati, Ohio I attended my seventh Androgen Insensitivity – Differences of Sex Development Support Group (AIS-DSD SG) conference and am still basking in the “orchid love.” There is nothing quite like it. About eight years ago I discovered the support group and attended my first conference in Dallas.
Not only was I no longer alone in my experience, but there were parents, allies, children and youth as well as intersex adults connecting with one another and experiencing a weekend of validation, safety and love like I had never experienced before. Years of pent up emotions came tumbling out – happy tears. I had found my community. My story is not unique – just talk to one of the 200 hundred plus attendees at the annual conference each year. Many describe their conference experience as life changing.
Over the last eight years as a member and now board member of AIS-DSD SG I have witnessed amazing positive transformation in the group with a rapidly growing increase of members who identify as gender neutral or male (until two years ago members were all female identifying intersex adults or parents of intersex children.)
I have witnessed an increase in families and youth finding their way into the group and forging beautiful friendships not only with peers but also with adults and intersex allies alike. And this year the group established its first diversity committee and outreach initiative, with intentional efforts to increase membership from marginalized communities.
In short, the AIS-DSD SG is blossoming into a beautifully accepting and more inclusive community.
The growing diversity and life changing impact of the group on so many attendees was apparent last week at the 20th Anniversary celebration. As founder and keynote speaker Sherri Groveman reflected, AIS-DSD SG has progressed from a group of frightened women with AIS living in secrecy to an internationally-recognized organization open to all people affected by diverse sex characteristics.
On its 20th anniversary, AIS-DSD SG awarded honors recognizing exceptional members, which included three founding members of AIC. Anne Tamar-Mattis and Dr. Katie Dalke received Distinguished Advocate awards, and Dr. Arlene Baratz was awarded the honorary lifetime membership award for her endless contributions to AIS-DSD SG including the nurturing and growth of a vital family support component and her medical and research expertise just to name a few.
For many supporters of both groups, AIC’s work is a natural extension of AIS-DSD SG efforts to nurture and empower. In reality, there is much collaboration between the two organizations, and many individuals in our communities have leadership roles in both. The life experience of several current and former AIC staff and board members reflects how an emotionally strong, well-informed and supported community creates and nurtures an effective advocacy movement. I myself am an excellent example – without the grounding of a knowledgeable and supportive community behind me I would never become the intersex advocate I am today. And I will continue to need that crucial community support as an advocate, perhaps even more than ever.
Support and advocacy must go hand in hand — especially in the intersex movement.
First and foremost, well-informed and emotionally supported individuals and family members are necessary to become strong self-advocates in the doctor’s office and beyond. As advocates for the broader community we must also first be grounded in a well-informed and supportive peer network to both empower us and catch us when we fall. And we do fall.
The trauma many of us have experienced is very real and it’s no secret to those who do this work that our past traumatic experiences can be an impediment to effectively moving forward in our advocacy. Peer support and healing is crucial to sustain our advocacy work. In fact, AIC’s leadership has formally recognized that working towards healing trauma in our community is imperative and have indicated it as one of our key goals in our new strategic plan.
Today, AIC and AIS-DSD SG engage in vital collaboration to reduce trauma, improve care, and recognize the human rights of intersex people. I am privileged to be witnessing first hand the intersection of intersex support and advocacy offered by both organizations. Our missions have been aligned since the beginning and last month’s conference was a strong reminder of the beautiful power and potential of our combined organizations to support and protect our growing community of intersex adults, children and families.
Congratulations to AIS-DSD SG on 20 years of love, support and advocacy!