"That must be Sean!" I thought, at the opening reception for the Chromosome 18 community in San Antonio, Texas. I was at the conference to enlist the cooperation of families in Positive Ties, a new Positive Exposure project which will educate medical students about living with a genetic condition. Recognizing faces, like Sean's, from photographs was like encountering celebrities whom I've only seen in pictures, suddenly walking and talking a few feet from me. It's a different magic than the other conference attendees experience when seeing Rick Guidotti's photography: From my perspective, I'm seeing familiar photos proving themselves to be true to life, while families see an instant of their lives captured in one of Rick's photos. From either side of the photographs, both I and the families were affected by the uniquely multifaceted images with which Positive Exposure captures the truth of human beings affected by genetic conditions. It is this truth that we are seeking to bring to medical professionals with Positive Ties.
Attending a group session the next day, I listened to parents who spent their lives at the crossroads of various systems: medical specialties, genetics, speech therapy, occupational therapy, schools and insurance companies all controlled a piece of their worlds. Designations like "autistic" could be the determining factor in whether or not a child received certain services. In their quest to overcome obstacles in their children's lives they were fighting with both hands: their left was open to whatever new diagnoses might hold new clues or entitle to care. The right was pushing away all labels, fighting for their children's right to be "just kids," period, without any special status. In the absence of coherent medical information, these families had been trailblazers in determining the possibilities available for their children. While seeking answers they often found more questions; as many participants expressed, "my child surprises me every day."
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