I’ve been getting OH SO MANY links to videos of people doing the “ALS Ice Bucket Challenge”. And just as many questions about how do I feel about this?
…That’s complicated.
If you’re somehow unaware of this whole thing, the ORIGINAL idea was put forth by a guy – NOT PETE FRATES, he did NOT start this, okay? – who challenged a friend to *EITHER* donate $100 to ALS research *OR* dump a bucket of ice water on his head. Once you do it, you call out three friends to do the same.
And it’s the EITHER/OR part that gives me mixed feelings.
People have missed the original intent. It’s gone beyond – with people just…dumping a bucket of ice water on themselves. Proudly showing the world that they *won’t* donate to ALS research, I guess? In fact they would literally rather pour ice water over their heads than give money to a charity. According to the original rules.
The most amazing star power has taken this up, and I really really really hope they’ve missed the point and are doing BOTH ice dump AND donate, because if Martha fucking Stewart won’t even slide ALS research a Benjamin? Seriously fucked up. But for the most part, it’s just become this machismo WOOOO ICE BUCKET YAY LOOKIT ME egofest. I’m really happy that nearly all of the celebrities I’ve seen do this make a point of calling it the ALS Ice Bucket Challenge and asked people to donate money to the ALS Association.
..except Steve Gleason. Fuck that guy. His “No White Flags” charity is a good one, but in his challenge video he’s co-opted it for his own fucking charity instead of the actual ALS Association, WHICH IS WHERE THE MONEY BELONGS. NO WHITE FLAGS, NO THUNDER STEALING, ASSHOLES.
The Ice Bucket Challenge has gathered a LOT of hate, too. “This is so fucking stupid. How does dumping ice on your head cure ALS? ”
Uh. It doesn’t. Which, No shit? No one really thinks brainfreeze will magically fix a terminal disease.
Is this promoting awareness that ALS even exists?
YES.
Holy SHIT yes. It’s completely unlike all of those stupid goddamned breast cancer awareness games on Facebook (“post the size of your shoe with a frowny face! teehee! Don’t tell anyone what it means!” HOW THE ACTUAL FUCK IS IT PROMOTING AWARENESS IF YOU ARE ACTIVELY REFUSING TO EXPLAIN WHAT YOU ARE DOING, YOU DUMB BITCHES) – promoting ‘awareness’ to something I’m pretty goddamned sure people are already aware of. Seriously. WHO HAS NOT SEEN THE MOTHERFUCKING PINK RIBBONS BEFORE. YES WE KNOW ABOUT BREAST CANCER K THX. (BTW SUSAN G. KOMEN IS A COMPLETE BULLSHIT CHARITY PLEASE STOP GIVING THEM MONEY, YOUR PRECIOUS PINK RIBBONS AREN’T HELPING DO SHIT. (Seriously Google that shit. They are terrible and have terrible policies. Don’t give your money to a ‘nonprofit’ that pays its CEO more than the motherfucking President of the United States.) )
Unlike breast cancer, ALS NEEDS an awareness campaign. I’ve often bemoaned the fact that NO ONE KNOWS WHAT THE FUCK ALS EVEN IS. Including ME before I was diagnosed. This is how it went when I told people before:
“I have ALS.”
*blank look*
*sigh* “…Lou Gehrig’s Disease?”
(half the time another blank look, but sometimes:) “I’ve…heard of that? I think? Is that bad?”
“It’s going to kill me slowly by turning me into a meat shell and then suffocating me, so yeah, it’s pretty bad.”
And now thanks to this whole ridiculous thing, I’m finding the conversation going like this:
“I have ALS.”
“Oh, shit, I’ve heard of that, that ice bucket challenge is going around. That’s pretty fucking serious, isn’t it? I’m sorry!”
It’s still not common to find someone who knows exactly what it is, but it’s a pretty good goddamned start. ALS doesn’t have a sexy celebrity spokesperson or a beloved childhood actor suffering from it, there’s no “star power” to my disease. The best we have is Stephen Hawking, and half the time people don’t even know who HE is, even after you say, “The scientist guy? In a wheelchair and talks with a robot voice? *sigh* He was on an episode of South Park?” And because human beings are FUCKING TERRIBLE ANIMALS, without ‘star power’, no one gives a shit.
Even though people have completely missed the point (except for example Jimmy Fallon, I fucking love his challenge video), it’s still getting word out that ALS is a thing. A thing that deserves attention and money and time. And thanks to this stupid meme, the ALS Association has seen a DRAMATIC upswing in donations. There’s been SUCH an upswing in donations lately, SO many people hitting the ALS wiki, that it’s goddamned inspiring.
And I just can’t hate that.