To read on Down Syndrome Prenatal Testing website:
Rewriting the story of Down syndrome
For many, thanks to deinstitutionalization, education inclusion, and medical treatments, they know a different Down syndrome than others. This new knowledge is rewriting the story of Down syndrome.
Knowing a different Down syndrome
In 2015, Karen Gaffney spoke at a TEDx conference held in Portland, Oregon. Gaffney happens to have Down syndrome and also happens to be a long distance swimmer, being the only woman with Down syndrome to swim the English Channel as part of a relay team and to cross the width of Lake Tahoe on her own. You can view Gaffney’s TED talk below and at this link.
Gaffney begins her talk telling a story about her 5th-grade teacher. After Gaffney was an adult, her teacher called to tell Karen she needed her. Her teacher had just received a prenatal diagnosis of Down syndrome and, as Gaffney relays, her teacher “knew a different Down syndrome than her doctor.”
This was because she had taught Gaffney as a student and stayed in touch with her. Her doctor, however, it seems, lacked experience with individuals Down syndrome. He therefore held outdated, inaccurate views on what a life with Down syndrome can be like.
Gaffney shares how when she was born a doctor counseled her father about institutionalization. The doctor, no doubt believing he was delivering quality care to a new parent, advised Karen’s dad that she may never be able to tie her shoes or write her name. Gaffney pithily notes that the doctor forgot to mention the English Channel to her father.
Since Gaffney’s talk, many others have had experiences that the physician who spoke to her father or the one who cared for her teacher likely couldn’t imagine. Indeed, not a week goes by that there isn’t a featured story about an individual with Down syndrome surpassing outdated expectations.
Here are just two:
Where Hope Grows
Karen’s talk was in May. In August, a blu-ray and DVD was released of Where Hope Grows, a movie whose supporting actor is David DeSanctis, a young man who happens to have Down syndrome.
Karen’s confident delivery of her talk at TEDx no doubt surprised and impressed many in attendance. Similarly, DeSanctis’ portrayal of a young man who plays a key role in turning the lead character’s life around also exceeded many’s expectations, not the least for the role being DeSanctis’ first time ever acting.
The producer of the film shared a moment, though, when DeSanctis may have given into the doubt so many have of the capabilities of individuals with Down syndrome.
On a cold night, the crew was filming at a minor league baseball stadium in Louisville, Kentucky. It was the first week of filming and the stadium had 500 extras there to see DeSanctis perform. In that moment, DeSanctis admitted to Milan Chakraborty, the film’s producer, and Chris Dowling, the film’s writer/director, that he was overwhelmed and didn’t know if he could do it. Chakraborty shares how they gave DeSanctis a pep talk:
We also told him he had changed our lives and he was going to change the lives and perceptions of everyone in the crowd.
DeSanctis went on to shine that night in his performance, even entertaining the crowd between takes by dancing to the piped in music. Watching his performance in the film shows Chakraborty’s prediction to have proven to be true.