Good Morning America aired a segment this morning entitled "Living with the Joy Gene." It was a seven-minute segment about Williams syndrome and featured a young man with Williams syndrome. You can go to this link and click on the title Cracking the Code of Happiness to watch the clip.
Diane Sawyer begins by asking what if we all felt joy all the time and alluded to the idea that a "mysterious medical condition" may hold the key to unlocking that joy. Diane Sawyer is not one of my favorite news people and her slow pronunciation of the difficult phrase "Williams syndrome" started me off with a sour taste in my mouth. Not a bad segment as a whole, but anyone who has spent a day with an individual with Williams syndrome (or many days, in our case!) can tell you that these children are not perpetually happy individuals. It is an insult to them to imply that they are not capable of having other emotions. Although Clare is still young, we can already see some of the fears, anxiety, and frustrations that individuals with Williams syndrome experience - just like all the other people in the world who do not have Williams syndrome. Yes, they do have an immense capacity for love, as Diane Sawyer says again and again, but they are not that one-sided. To give the GMA segment credit, it was stated that this supposedly unending joy did come at a price and spoke briefly about the young man's heart procedures and his difficulty with fine motor skills, especially with the use of his hands.
I have debated this back and forth in my own mind, and I am glad that Williams syndrome is getting more positive exposure in the media. More and more scientists and researchers are becoming interested in studying Williams syndrome, which will hopefully help Clare and others in the future. It was refreshing to see a positive spin on Williams syndrome (instead of negative views, such as a recent article in the Wall Street Journal which featured a young child with Williams syndrome as the reason why mainstreaming in the classroom is a bad, bad thing). It would just be nice to see a piece that was more multi-faceted to give a true picture of what living with Williams syndrome is really like. We do see so much love and joy in Clare, and we treasure that special gift Clare has to touch other's lives in amazing ways. But it does come at a price.