Waterless ALS Awareness
I believe that everyone has something to give and every gift matters.
If you’ve been hanging around this blog for awhile, you know that our community built us an accessible home addition. It took financers and builders, cleaners and cooks, painters and designers and everyone in between. Our volunteers were aged between four and eighty.
So this week’s Ice Bucket Challenge left me both very excited and a teeny tiny bit frustrated.
First, if you haven’t been on Facebook, people are filming themselves dumping buckets of water on themselves, making donations to ALS foundations, and calling on their friends to do the same. People are talking, money is being raised. That’s the part that has me excited.
Then some people were called slaktivists because they probably didn’t make a financial donation, didn’t quite know much about the disease, or seemed to be more interested in their social media presence then actual fundraising.
Really? Facebook is being used for something great and we need to put a damper on that? Boo hiss.
We absoultely need money to fund research and a cure for ALS and other diseases. Money is essential, but let’s not mistake that for the only valuable contribution. One of my favorite aspects of our building project was seeing so many people give in the way they were able. If we shut out people who are not financially able to give, we’ve lost a great resource and perpetuate some sort of shaming statement about money and worth.
There has been a call to just write a check and skip the water dumping. There is certainly validity to that request but it leaves out one important aspect of this campaign….being seen. Yes, this activity is a gimmick, but behind that gimmick are real people who deserve to be seen and heard and valued. I can imagine what it feels like this week to be a person with ALS and realize that people are talking about your cause, noticing, raising awareness. I can imagine because it’s how I’ve felt on Purple Day, “Look, Epilepsy is getting it’s moment in the spotlight. People care.”
So I’m ready to make my contribution. It’s a cold rainy day outside so I’m not pouring a bucket of water on my head, but I do have something to give….information.
If you’re not really sure what ALS is, read this article which states that ALS
is a neurodegenerative disease that affects nerve cells in the brain and the spinal cord, leading to muscle weakness, loss of the use of arms and legs, and problems with speaking, breathing, and swallowing.”
And to put some stories to this disease, check out these personal blogs:
Instead of calling out names of friends to make a donation, I’m calling out all of my readers to just simply click on one of these links and read it. (But of course you can dump water on your head and make a financial contribution if you’d like because I stand by my statement that every gift matters.)
Here’s my last contribution – I’ve sat on this side of the computer screen on Purple Day and Undiagnosed Children’s Day and have watched as Facebook lit up with purple and blue respectively. No one was asked to donate money, but I know that on those days people considered how Epilepsy and other medical challenges really effect a family and told others as well.
They…you are not slacktivist. You are my people and you make me feel less alone, and that my friends, is priceless.