....As the brother of a woman with Down syndrome (DS), Skotko took exception to the notion that an extra chromosome ruins everything — or anything, for that matter. Go ahead and mock my clothes, Skotko, who is based in Boston, wrote in an open letter to GQ that he posted on his blog. “But, whatever you do, do not mess with my sister.” Skotko then schooled Thompson on what “Style Down Syndrome really is.” He wrote: “It’s smiling when everyone prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as a gold medalist. Style Down Syndrome is strong-willed, persevering, and forgiving — because it has to be.” (GQ later apologized privately but refused to do so publicly.) “Mock my pants, not my sister” provides a glimpse of the passion with which Skotko advocates for his sister and all people with DS. But Skotko is much more than an advocate. He is also one of the country’s leading medical clinicians, geneticists, and Down-syndrome researchers. The goal of his work, as he explained it to me when I visited him at Massachusetts General Hospital, is to make “tomorrow better than today” for people with Down syndrome. Put another way, Skotko is using his extraordinary talents to help move society beyond mere tolerance for people with DS and toward a celebration of them....
Posted on: Thu, 18 Dec 2014 18:05:42 +0000
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