25 March 2016

The Deeper Harm

I hate those "feel good" posts that go around Facebook about Down syndrome. You know the type: "Opposite team lets boy with Down syndrome shoot basket." Just Google "Boy with Down syndrome basketball" and your screen will flood with such posts. Did you hear about the girl with Down syndrome who made it on the cheerleading squad? What about the boy who was elected home coming king? Local news stations blast these stories with pity-covered enthusiasm. Hey look, boy with Down syndrome graduates high school! Local art studio recognizes painting/poem/award by girl with Down syndrome!

These stories do not warm my heart. They don't fill my soul with hope for Abigail's future. They make me angry. I block them when they pop up on my Facebook wall. I scroll past the links on news websites. To me, the headlines might as well read: "Society does favor for poor retard child." "Handicapped kid does something normal!" "Let's patronizingly applaud and pat ourselves on the back now."

I want people to stop having abortions when they receive a prenatal Ds diagnosis. I think these stories harm that goal. When we are excited about mundane things, it begs the question: Was there a chance that the mundane wouldn't happen?

When Abigail was a few weeks old, we ran into someone who'd recently heard about her dianosis. "It's okay," she said. "I know someone with Down syndrome and she says 'please,' and 'thank you,' and ties her own shoes!" My heart dropped - I didn't know I was supposed to worry about that! Abigail might not have basic manners?!

I don't want pregnant moms feeling that way! As the mom of an almost five-year-old with Down syndrome, I can assure you that she says "please," "thank you," "excuse me," and "I'm sorry." She helps set the table, she takes her plate to the sink, and we're working on asking to be excused from dinner. Basic manners are not an achievement for her and they were never a concern.

It's blatantly obvious that "charity case stories" do not promote inclusion or recognize someone's achievement or promote awareness. I think they are shallow opportunities for society at large to feel better about itself without ever leaving the couch. "Look, we helped the less fortunate! What a great community we are!"

And I think the ego boost comes at the expense of progress for those fighting for recognition. Like finding out your dad let you win Monopoly. Or that the cool kid asked you to prom because he felt bad for you. It implies you couldn't win on your own or land a hot date or succeed by your merits. To those with any kind of special needs, these stories have a terrible underlying premise: people with Down syndrome or other special needs can't do normal things, so we, society, need to cheat now and again to help them out.

There are stories that contribute something positive. The ones that recognize hard work. Like Madeline Stuart, a main stream model with Down syndrome. Or Tim Harris, the only man with Down syndrome in the country who owns his own restaurant. I also like stories that promote inclusion. Like when Pampers and Target use models of all races and abilities in their marketing. And I love stories that raise awareness, like the recent Olivia Wilde ad that challenges the way people see people with Down syndrome.

But that doesn't mean I need them blasted in my face either. It's possible to sour a perfectly awesome story by overreacting. "Oh my gosh, Olivia Wilde is a role model!" It yanks the focus away from the message - people with Down syndrome are (gasp!) people - and slaps it back across society - "We are so smart and good for recognizing Wilde's recognition!"

I think the struggles my family and I are encountering when Abigail meets the world are branches on the same tree that women and blacks and religious people and Hispanics and the Irish in the 1920s and moms of large families at the grocery store, and heck, the kid with glasses on the play ground during recess all face: discrimination. Because the moment Adam's pearly whites sank into that piece of juicy fruit, humanity suddenly forgot that we possess a certain dignity. You get it for merely existing: a dignity that you don't have to earn and you can't lose. It's from God and whether or not the world recognizes it, you still have it.

I know that this world will never recognize Abigail or people with Down syndrome as equals, but that isn't going to stop me from trying to make it happen. And today that means tearing down fluffy articles that make society feel better at the expense of my daughter.

1 comment:

Matt said...

"Because the moment Adam's pearly whites sank into that piece of juicy fruit, humanity suddenly forgot that we possess a certain dignity. You get it for merely existing: a dignity that you don't have to earn and you can't lose. It's from God and whether or not the world recognizes it, you still have it."

And then the post went BOOM!