Wednesday, October 9, 2013
31 for 21: Down Syndrome Awareness
Last weekend we walked for "Down Syndrome Awareness."
Last spring, when Max was not yet two months old, several friends alerted me to World Down Syndrome Day, March 21 (that's 3/21--which is a pretty good little pun). According to the internets, we were all to wear lots of socks or mismatched socks or do something with socks in order to "raise awareness." (The sock thing confused me. I blamed it on postpartum sleeplessness, but then I saw this post that explained my dubiousness much more clearly.)
And right now I'm doing it again. I'm blogging every day this month "for Down syndrome awareness."
Awareness? In the words of a famous sword-fighter, "You keep using that word. I do not think it means what you think it means."
Thing is, I don't really think there are many people out there who are unaware of Down syndrome. Heck, most lay people can diagnosis Down syndrome from 50 yards away.
So why do we write or walk or donate? Education? That's good, there's certainly a lot I didn't know about Down syndrome a year ago, and a lot I'm still learning. Advocacy? Oh, that's better. I don't just want people to be aware that my son exists, I want to make sure he has opportunities and safety and respect. Acceptance? Absolutely.
Awareness is a soft word. It's easy to get folks on board, because there's nothing to disagree with. But there's also nothing behind it.
So, despite the words on the button to your right, I prefer to think that I'm blogging this month "for community." This is my chance to get some of my thoughts down, and to read what others are up to. To find a few new blogs and to let someone else read mine, and hopefully we can both encourage each other a bit.
I walked "for advocacy," hoping that our local group can use the money to reach out to families and provide opportunities for people of all ages with Down syndrome.
I'm happy to celebrate, educate about or work for acceptance of having 3 copies of that 21st chromosome. But awareness? Nope, not a goal. We can do better than that.