Why Do Media Portrayals of Kids with Down Syndrome Matter So Much to Us?
I was so torn over the controversy about the Today Show segments with Shawn Johnson and Andrew East. First of all, congratulations to Shawn and Andrew! Every new parent should be congratulated, and every child should be celebrated. The anticipation of a new baby is one of the best possible gifts we get in our lives!! When prenatal tests reveal that the baby’s health may be at risk, it feels devastating. But a diagnosis does not necessarily mean an unhealthy child and a sad life.
Oftentimes, when families receive a diagnosis of Down syndrome, they hear condolences instead of congratulations. When my daughter GiGi was born with Down syndrome, that was my experience. I remember being so afraid of this new life that everybody was apologizing for.
What we didn’t know then was what an unbelievable gift our GiGi was. Not just to our family, but to the world! GiGi’s birth led to the creation of the first GiGi’s Playhouse Down Syndrome Achievement Center. As GiGi approaches her 17th birthday, we are celebrating the opening of our 46th GiGi’s Playhouse location! And we are celebrating this strong, accomplished, beautiful young woman who has broken through barriers like we never could have imagined. Just last month, she sang the national anthem before the Chicago Cubs game at Wrigley Field in front of 40,000 people and brought down the house! Google it!
I would never be the person I am today without having her incredible strength to guide and inspire me. I invite everyone to reach out to a family with a child with Down syndrome or stop in at a GiGi’s Playhouse to experience the pure joy, strength, love, and potential they will find. One visit will take away some of the fear associated with Down syndrome and open your eyes and your hearts to some of the most incredible people in the world!
Look at the joy in this picture. Just look at the faces of Zachary, Jacob, and Noah !! Are they healthy? Yes! Does one happen to have a diagnosis? Yes! Does that define him? No. Please don’t be afraid. There is nothing to fear! Except having three rambunctious boys in your house!
We heard from many of our families this week who were upset by the Today Show segments about Shawn and Andrew’s unborn baby. Some were upset by the implication that children with Down syndrome are unhealthy rather than healthy. Some felt that the story relegated people instead of recognizing the fact that people with Down syndrome live full and meaningful lives in today’s society. And some were bothered by the idea that a Down syndrome diagnosis would mean that a life was not worth celebrating. I totally get that, but I do not believe that there was any ill intent.
We reached out to the producers and talent at the Today Show this week to share these concerns and to make sure they understood how this story resonated with the Down syndrome community. The media plays a powerful role in shaping how people with Down syndrome are perceived. They heard our voices and invited us to provide more insight, which I hope they have found in your voices and in this post.
To the Today Show staff, we thank you for inviting a conversation about this subject. There is so much more to this story that we would love to share. To our GiGi’s Playhouse community, we thank you for standing up in support of every family and individual with Down syndrome. You are true warriors, and we could not have a better tribe. And to Shawn and Andrew, we thank you for your honesty and for the pure love you have for this baby you have yet to meet. Sharing your story gives voice to the journey so many of us have in common. Congratulations from everyone here at GiGi’s Playhouse. ~ Nancy Gianni, Chief Belief Officer