I absorb a lot of news every week. We listen to National Public Radio morning and evening. We subscribe to Time, The New Yorker, and the Sunday New York Times. I read a handful of blogs and receive a daily Google update on stories with the key words “Down syndrome.” And usually, when an article or story catches my eye, I write about it. That might be because I appreciate the perspective or information shared, or because I’m saddened or opposed by the view it presents.
Her kiss is so inviting
and her hugs are so delighting.
And what makes them really nice
is that they’ve got a little spice
Because they’re tighter than a vice
and they go on for an hour.
My boy, between the two of us
we’ll get you on that shorty bus
And then you’re going to take it for a whirl…
Now go impress that…
As of Monday, shoelace-tying
Just a little crooked walking,
Coyly pouting, booby-sprouting,
For some reason always shouting,
Happiness and joy creating…
Down syndrome girl!
Even then, I ignored the news. I shrugged my shoulders at a Hollywood establishment that bends over backwards to embrace various forms of political correctness and yet rewards shows and movies that poke fun at people with developmental disabilities (Tropic Thunder is the other glaring recent example). I shook my head as I read the back and forth between the National Down Syndrome Congress and Mr. John Shaffner, CEO of the Academy of Television Arts and Sciences. A group of individuals with Down syndrome requested that the Emmys not broadcast a performance of “Down syndrome girl.” Mr Shaffner responded: “The Television Academy is always sensitive to these types of issues and had already planned not to air this song.” I rolled my eyes at the fact that nominating the song didn’t fall under the category of utterly-insensitive behavior.
Then, in the midst of learning about this accolade for “Down syndrome girl,” and in the midst of my decision not to write about it, my sister had a baby. Her baby has the typical 46 chromosomes, but over the course of her hospital stay, she ended up talking with her nurse about her niece, my daughter Penny, who has Down syndrome. My sister Kate is one of Penny’s favorite people in the world. Whenever they are together, there is laughter. And Kate is the only person who has ever said to me, “I think people with Down syndrome actually have greater value than the rest of us, because there are so few of them.”
When Kate was talking with her nurse about Penny, the nurse said, “It has been many years since I have helped deliver a baby with Down syndrome.” She didn’t spell it all out, but it was obvious to Kate that women who deliver in this hospital, who come from a wealthy and highly-educated community, tend to avail themselves of prenatal testing and terminate their pregnancies if they’ve conceived a child with Down syndrome.
In the same week, I happened upon a research paper by Dr. Brian Skotko of Harvard Medical School. He wrote about the decreasing population of individuals with Down syndrome even though average maternal age has increased in recent years: “For example, in the USA, there would have been a 34 per cent increase in the number of babies born with DS between 1989 and 2005, in the absence of prenatal testing. Instead, there were 15 per cent fewer babies born, representing a 49 per cent decrease between the expected and observed rates.”
I’m not shrugging my shoulders at “Down syndrome girl” anymore, nor at the Emmy nomination for a song that makes fun of my daughter and contributes to devaluing human life. From crass comedians to doctors, from high culture to low, individuals with Down syndrome are considered undesirable by many people in America. There’s a place for protest, for letters to Mr. Shaffner and picketing films and the like. But protests also draw attention to the offense. Tropic Thunder was a blockbuster hit, and after the brouhaha over Family Guy last year, it soared to the top of the most-watched TV list.
The more important response happens on a much more mundane and local level. It happens as Penny goes to school with her typically-developing peers; as she orders her breakfast at the local coffee shop; and as she works hard during swimming lessons to keep her head above water.