What We Have in Common with the American Cleft Palate-Craniofacial Association

This past weekend I gave the keynote address at the American Cleft Palate-Craniofacial Association meeting in Chicago. My talk was entitled "Facing History: Understanding Craniofacial Care in a Broader Cultural Context." I spoke about how there are common threads running throughout the personal narratives of people born with atypical anatomies, one of them being that what others see as simple "deformities" or sources of stigma are often experienced as livable, integral parts of subjects' lives.

The meeting was great; I learned so much from talking with the professional care providers for craniofacial anomalies! Here are a few of the things they know that those of us working to help families dealing with intersex need to know:

-- Integrated, interdisciplinary team care helps provide comprehensive, holistic, well-planned treatments. Craniofacial teams typically include a social worker, a child psychologist, a dentist, a speech pathologist, a primary care nurse or doctor, and a surgeon. These teams work together to make sure simplistic short-terms solutions are not offered when what is needed is long-term, individualized care for long-term concerns.

-- Having affected individuals and parents of affected individuals attend the professional meetings means educated "consumers" as well as educated professionals! Cross-talk that stretches across lived experience and professional experience keeps everyone focused on the big picture.

-- Parental distress needs to be treated directly, not indirectly through "fixes" on children. Parents deserve to have their own anxieties, confusion, and shame addressed directly by professionals and peers who can help.

-- Sharing personal stories of parents, affected children and adults, and care providers helps everyone understand she or he is not alone in dealing with these challenging situations.

I'm so excited at the possibility of getting craniofacial care providers to help us understand how to take intersex care to the next level! I'm dreaming of the day I attend an intersex care providers' meeting like this--multi-disciplinary, focusing on follow-up studies, integrating and welcoming parents and affected children and adults! ISNA is working to make this day come soon.

So please consider donating to support our efforts. We can move only as fast as our financial resources allow.

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