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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 shareTo 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

9 Comments

  1. Beatrice Hunt on July 25, 2019 at 1:42 pm

    The best thing to ever happen to us has been our little Raven. Yes she takes special attention but what she gives in return fills our lives with happiness. She has so much love and joy I cannot even describe what she brings into our lives

  2. Jil on July 25, 2019 at 2:02 pm

    “ Nothing Down About It! “
    My son is 21 years old and he is a blessing and a gift from God! Our family was chosen! Love my son so much!

  3. michelle tetschner on July 25, 2019 at 4:48 pm

    THANK YOU! Well said!!

  4. Caryn on July 25, 2019 at 6:48 pm

    We are beyond blessed to have Joey in our lives. JOY w an E for extra special in every way. And that’s exactly the way Joey makes everyone else feel – joyful, special and loved!!!

    • Nancy Liewald on July 26, 2019 at 12:32 pm

      We were blessed in February with the birth Of our grandson Legend, Who was diagnosed after birth with down syndrome , He has brought nothing but joy to our family and this little boy can light up a room like nobody’s business . We had 40 people walking for him at the Gigi‘s Playhouse walk in Arlington Heights , he is surrounded by love and acceptance from all of us, I pray the world sees what we see when we look at Him, A beautiful loving and adorable little boy, whom one day is going to make a huge difference in this world .

  5. Shannon Bednowicz on July 26, 2019 at 8:36 am

    One of the best experiences in my life was being able to volunteer at the GiGi’s playhouse.

  6. Janet Kerver on July 26, 2019 at 10:36 am

    Thank you Nancy and Gigi for ALL YOU HAVE DONE!!! Our granddaughter Kinley and our whole family LOVE Gigi’s Playhouse in Fort Myers, Florida👏👏👏. The general public must be educated on DS and realize what PURE JOY these children bring to those of us lucky to have them in our lives!!! 💙💛😍

  7. Francine on July 26, 2019 at 1:28 pm

    Nancy- I too remember all of the condolences you received. I remember feeling so confused for you. I also remember the Lioness that emerged after Gigi’s birth. I remember how everyone was all of a sudden confused because of you. I remember sitting back and watching your inspiration and dedication to Gigi, as if I were watching a movie . I loved how you continually gave it back to anyone who tried to rain on your parade….. I still have my box of popcorn in hand, watching you on the big screen of “Real Life”! Best of times! Loving you-Franny-

  8. Mandy Chavez on July 27, 2019 at 10:55 am

    Our Olivia is 15 mo old. Here is my post on the topic: There is a lot of chatter in the Down Syndrome Community regarding a news story from The Today Show about the gymnast, Shawn Johnson, and her husband. The couple is very transparent about their journey to becoming parents and have shared their miscarriage and their latest pregnancy. One of the recent things they have shared is that there was concern that their baby may have Down Syndrome and their relief in finding out that there child was “healthy / normal”. A lot of parents of kids with down syndrome have taken offense to their joy in finding out that their baby didn’t have DS and that the Today Show allowed DS to be seen in a negative light.
    Here are my thoughts. We also prayed and asked everyone we knew to PRAY that Olivia was healthy / normal. What parent doesn’t want their child to be normal? I remember, so vividly, asking God to “just make her perfect” and He said, “I already did”. I thought, “No, what I MEANT was make her normal” to which I didn’t hear a reply.
    The thing is, all of those feelings are TOTALLY NORMAL. You are being thrust into a world you know nothing about. You’re scared for your child and you feel inadequate to properly care for a child that requires so much. There are a thousand unanswered and very scary questions.
    Their story has ended that it appears their baby is healthy, typical. That’s great! But…here’s the IMPORTANT THING…if their story had ended like ours has, that would be great too! They just didn’t know that yet.
    It’s not the journey we wanted to be on. We wouldn’t have chosen disability for our child. Who would? And, I would still give both of my children every advantage I can, but…I also wouldn’t trade her for anything. She’s amazing. She has already made us as individuals better, as a family stronger, and we’ve seen so much goodness out of our “village”.
    I just wish The Today Show would have shown the whole picture for all of those families out there that are grappling with a new diagnosis. That it didn’t make it seem like having a child with DS was something so terrible and instead do more to promote understanding, inclusion, and celebrating all people. #teambabyroses

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