Ice, Ice Baby

I have a personal history of railing against empty, symbolic gestures done in the name of “awareness.”  It began in 1997 when I observed a bunch of idiot college kids camping out on the green at Westfield State to raise awareness for homelessness.  No funds were raised, nothing was written, nobody really knew about it except for the morons in LL Bean jackets and down sleeping bags and waterproof tents.  It was empty, void of meaning and insulting to the cause and the very real people left in the cold with nowhere to go and nobody to help. I got myself in hot water with the group when I walked over and suggested they simply donate those jackets, blankets, tents, boots, hats and mittens to a local shelter instead of patting themselves on the backs.

Fast forward to 2007 when my son was diagnosed with autism and those puzzle piece logos were pretty much everywhere.  Autism Speaks is one of those organizations that likes to raise a lot of money and pay their staff most of it.  I don’t agree with their mission, what they write or what they believe about autism and take issue with them not having a single autistic person on their board. 

My son isn’t a disease, he is a brilliant and loving and terrific little boy whose brain works differently than mine.  That doesn’t make him a problem, it makes him pretty damn awesome.  He is who he is because of autism and by wanting to “cure” him of it means I don’t want him, I want some other child instead.  Horrible when you think of it that way, right?

My daughter asked me, “What has a puzzle piece sticker done for you?”  Well, Autism Speaks did do something right.  They began a national dialogue about ASD and they opened the door for other organizations to step forward and do things better.  If it wasn’t for Autism Speaks, most people would not have ever known about autism and what it looks like.  So, while I strongly dislike the logo and the organization that created it, I need to be thankful that when my little guy is having a major meltdown or needs to have special seating at Disney, folks tend to be aware (there’s that word) of what’s up and that I’m generally not a horrible mother who needs to smack her bratty kid.  People are learning that my son isn’t giving me a hard time, he is having a hard time.  That’s progress, like it or not.

The Ice Bucket Challenge isn’t a ribbon stuck to the bumper of a car, doing nothing other than making the company who prints them rich.  It’s not a pink pen or pink sweater or pink (I kid you not) heart rate monitor that does nothing for breast cancer other than make the owner of the item feel good.  This time, the challenge is raising very large sums of money for ALS.  It’s silly, but it’s working.

There are wars being fought, young black men are being gunned down in the streets for simply being black and now we live in a world where Robin Williams commits suicide.  There are many, many things in this world to be annoyed or angry or frustrated or sad about.  People trying to do good?  That’s something to celebrate, friends.