Children with Down Syndrome: Will Culture Make Them Disappear?
On World Down Syndrome Day today, the United Nations will, for the first time, officially recognize those with Down syndrome. I'd say it's about time.
Despite huge advances in improving quality of life—life expectancy has doubled from 25 to 55 years in the last 30 years due to medication, therapies, and specialized surgery—the population of those with Down syndrome is barreling toward extinction.
An amniocentesis used to be widely performed on older women who are at greater risk of carrying a child with Down syndrome, but it carried a small chance of miscarriage, so some refused the procedure. Now a simple blood test can tell a woman whether or not her baby has one extra chromosome and thus differentiates a "perfect" child from a child with a life-altering disability.
A 2011 piece in the New York Post declared "The End of Down's Syndrome," noting that 92 percent of women who receive this diagnosis choose abortion. (This was before the quick and less invasive blood test.) And just two weeks ago, a couple from Oregon received a $2.9 million settlement because their doctor failed to diagnose Down syndrome during pregnancy. The parents, through their lawyer, told the media that while they loved their little girl, they would have terminated the pregnancy had they known her diagnosis.
"What you end up having is a world without people with Down syndrome," Paul Root Wolpe, director of the center for ethics at Emory University, told the Post. "And the question becomes is that a good thing or a bad thing?"
We must not be content to live in a world where abortion weeds out Down syndrome and other kinds of disabilities. Those with Down syndrome have challenges, sometimes significant, but they bring abounding joy and expressive love to everyone and to everything they encounter. A good friend of mine has a teenage son who coaches a basketball team made up of Down syndrome children and teens. Watching them play is a pure joy; it's infectious. Even when the team loses, the players act as though they are excited just to be alive, giving each other big effusive hugs. Where else can you see such good tidings involved in competition?
In a world of cynicism, pride, and unrealistic expectations, those with Down syndrome bring authenticity, innocence, a lack of guile, and a burst of unrelenting happiness. Why extinguish that?
With that in mind, please understand that I don't want to diminish the impact and suffering that comes with finding out you are carrying a child with a disability, a unique kind of hardship. My husband and I adopted four children from foster care, two as babies. As they have grown, they have developed special needs such as Tourette syndrome, bi-polar disorder, chronic anxiety, and significant learning disorders—all before the preteen years. Genetics and poor decisions made by their birth parents during pregnancy define their troubles, and define our family's daily existence. For many like us, disability has a financial, emotional, and relational cost.
While our family struggles tremendously, and often daily, under the weight of our children's illnesses, from all outward appearances, the culture would see our children as normal—and even physically beautiful, especially to this mama. However, their challenges drive us to our knees regularly, and the spiritual maturity they articulate and demonstrate, even during the hardest moments, puts us to shame.
Children with Down syndrome and other disabilities have been seen as aberrations throughout history; they have been ridiculed, used, abused, and exterminated without much thought. Even in a modern era, they bump up against our culture's notion of beauty, perfection, and normal. Our bias against people with disabilities reveals an inner defect, a sickness of the heart that is far worse than any physical or intellectual challenge.