Noonan Syndrome Support Group
Conference 2007: Zero Gravity
     by Kim Puchir


“You can say it and you can hear it, but you don’t get it until the light goes on and then you get it,” he said, recalling a diversity training workshop he led at a school, where kids who had just correctly answered a survey about tolerance still exhibited a negative reaction to pictures of people with albinism. Using photos and videos, Rick was able to help the audience understand what tolerance in action looks like.  By the end of the presentation the students were cheering for the people with albinism that they had been jeering at minutes before. Positive Exposure helped them “get it.”

Des smiling
Des not smiling

Images are an ideal way to reach kids in a technology-laden world. I saw this first-hand when less than 60 seconds with Rick and an iPhone were enough to draw a smile out of Dezmond. It was my first time seeing Rick in action: he was talking non-stop, snapping photos of a very serious Dez, exclaiming over his beautiful eyes and then flipping through the snapshots right in front of us on the iPhone. Dez’s mouth began turning up at the corners against his will as he encountered himself on the small screen. Gradually the photos were changing until Dezmond was a boy with a cautious smile contemplating his own smile. He was beginning to get it. It was like witnessing magic.

The next group I attended was the teen discussion about social strategies. Jason was a poised presenter, sharing his own experiences leading up to college and answering questions. The kids talked about their school hallways as if they were obstacles courses for small people.  They were often teased and misunderstood yet these young people listened to each other with politeness and maturity. They reminded me of patient martial arts practitioners, some with extra burdens yet capable of disarming their opponents with a gentle word like the flick of a fan.