It is heartbreaking that a diagnosis of Down syndrome so frequently is accompanied by the words, “I’m sorry.”
Sixty-seven percent of children prenatally diagnosed with Down syndrome are aborted in the United States. But the lives of people with Down syndrome are no less valuable because they sport an extra chromosome.
Several years ago, a wonderful law passed in Maryland ensuring that a prenatal diagnosis of Down syndrome must be accompanied by accurate, up-to-date medical information about Down syndrome as a condition. Rather than hearing an “I’m sorry,” parents should be supported in welcoming their child and helping him or her live to their fullest potential.
Children and adults with Down syndrome face additional challenges, it is true. They may have to overcome language difficulties, physical disability, educational, housing and employment barriers, and a less than inclusive society. Nevertheless, organizations like The Arc of Maryland tirelessly advocate so that each person with Down syndrome can live as independently and freely as possible.
More than ever before, people with Down syndrome are breaking barriers in the workforce, athletics and education. Their life expectancy has increased from 25 in the 1980s to over 60 today. And a Harvard study found that people with Down syndrome, alongside their parents and siblings, are happier than the general public.
Let’s be clear. People with Down syndrome are not valuable because they are happy, or employable or gifted entrepreneurs, chefs, swimmers, actors, public speakers, models, triathletes (although they are all those things).
In a moving testimony before the US Congress in 2017, Down syndrome self-advocate Frank Stephens said he did not feel he should have to justify his existence. He said, “I am a man with Down syndrome and my life is worth living.”
People with Down syndrome are valuable because they are people, members of the human family, cherished by God their creator. This World Down Syndrome Day, celebrated March 21, is a reminder for everyone to welcome people with Down syndrome for who they are, with their unique chromosomes, unique challenges and gifts, unique longings and dreams.
One of my greatest heroes is Karen Gaffney, a disability self-advocate with Down syndrome. She is a brilliant open water swimmer who swam the English Channel in a six-person relay and “escaped from Alcatraz” a whopping 16 times. Speaking at an event in 2018, Gaffney highlighted the painting The Adoration of the Christ Child and pointed out the baby Jesus emanating a “great ineffable light shining on the faces of Down syndrome.”
“It is my prayer that this great and ineffable light, a light too awesome and sacred for words that shines on the faces of Down syndrome in this painting will also shine in the hearts and minds of all of you as you stand up with us and for us, to show the world that Down syndrome is compatible with life,” Gaffney said.
May it be so.
Also see
Copyright © 2021 Catholic Review Media
English
Spanish