Special Needs in the Spotlight
/The Boston Globe
In the newspaper business, "sidebar" is the name given to an addendum, a "by the way" separate article that relates to the main story. It is generally short, informative, set off to the side — and almost always read by even the most impatient reader.
When John McCain announced that his running mate would be Alaska Governor Sarah Palin, my brain went straight to the imminent sidebars. I was certain that because Palin has an infant with Down syndrome, the sidebars would be all about DS and that at least until Nov. 4, there would be interesting stories about that one extra chromosome, about children and adults with DS, about their histories, their lives, and their accomplishments. People would learn that Down syndrome, also called Trisomy 21, is a condition, not a disease; that people don't "suffer" from it; that there are no victims; and that DS is just a part, not the whole, of who someone is.
Because of Trig Palin the public would learn all the things I have learned since my granddaughter Lucy was born with DS five years ago. Old myths would be dispelled. Millions would be informed, educated, entertained, and enlightened. And everyone would begin to say "children with Down syndrome" not "Down syndrome children," not because it's politically correct but because they would finally see the child, not the Down syndrome, first.
But then the Palins announced that their 17-year-old daughter is pregnant, claiming the sum total of media attention. The window to educate about DS — to listen to the parents of children with DS, to get to know adults with DS, to get past old stereotypes and fear of the unknown — slammed shut.
Ah, the irony of a woman who is for abstinence having to stand up and tell the world that her daughter didn't abstain. But is this really news? Isn't news supposed to be the unusual? The rare event? If so, does another teen pregnancy really qualify?
What really would be unusual — and valuable — would be if the candidacy of Sarah Palin, who could end up not just in the White House but sitting in the Oval office, illuminated the facts about DS. Because without public education, her 4 1/2-month-old baby boy may see his whole life defined by what he can't do instead of by what he can do. He will be pigeonholed and pitied and underestimated. And he will make people turn to their own offspring with a sigh and a whispered prayer of thanksgiving, "There but for the grace of God, go I.”
Unless the world learns better.
When the doctor announced that Lucy had Trisomy 21, I wept for her, for my daughter and her husband, and for the future, for all that I worried it would be.
I looked at this beautiful baby girl asleep in her bassinet, blond hair, blue eyes, cheeks as round as pennies, skin as soft as rain, and foolishly leaped 20 years into the future and imagined a stranger culled from old books and older movies, a stereotype, a sad looking adult shuffling along.
What a goof. If only I'd had some sidebars to read that offered a much more real image. If only I could have glimpsed Lucy, now at 5, running, skipping, climbing the steps up the slide, jumping in the bounce house, swimming, laughing, feeding her baby doll, tucking her baby doll into bed, dancing and singing every word of "Me and My Shadow.”
But what we didn't imagine, what we couldn't imagine because we didn't know, because we were uninformed, because nobody told us, was Lucy laughing, Lucy jumping. Lucy playing "Ring Around the Rosy," Lucy sitting on the floor and reading book after book after book. Lucy standing in the middle of the room with a DVD in her hand demanding in an impatient voice because we weren't paying attention, "I want to watch 'Click Clack Moo,' please!”
There are many pregnant teenagers. There aren't so many Lucys and Trigs. The world would do well to learn about them and would be a better place if it got to know them.
