I love nitpicking!
Because so many videos fail to do this, I want to start with what ALS is.
Amyotrophic lateral sclerosis also known as Lou Gherig’s disease because a famous person
had it, and that’s what happens when you’re famous: the world memorializes you as a horrific
rare disease that strikes suddenly and, over a few years, rapidly degenerates the muscle-controlling
motor neurons in your body until you are a fully aware person trapped in your own emaciated
flesh and soon you’re so weak you can’t breathe right and you use machines and pain
killers until you die.
And there’s no cure.
Like many kinds of cancer, ALS can be genetic, but most victims have no identifiable reason
they got the disease, and it’s probably a complicated mix of environmental factors.
Unlike cancer, it’s exceedingly rare. An estimated 30,000 / 314,000,000 people in the
US have it, which means the chance it’s you is a fraction of a percent. If there’s
a condition you do have, it’s probably heart disease or cancer. Most of which can be prevented
by eating right and not smoking.
Hopefully you’re taking those preventative measures by the way, since heart disease is
not where the money is. Which begs the question, what really led ice bucket challengers to
donate to the ALS Association? Because if the goal was to save lives, money could have
been 500 times more effective if invested against diseases that kill large numbers of
people. So either each person carefully researched where their donation was going and, fully
aware that there are many worthy causes to support, chose ALS… OR... the ALS Association
won the viral lottery and people mostly donated because it was an easy way to make themselves
look good.
After all, the ice bucket challenge feeds off of peer pressure. The challenge works
like this… well, wait a minute! There aren’t any rules! The website lists none, and that’s
probably because the ALS Association didn’t even start the challenge. Ice bucket challenges
have been around for quite a while, and the ALS variant started with a pro athelete, and
at that time the rules were pretty simple.
You have 24 hours to dump ice on your head, and if you don’t, you donate $100 to the
ALS Association.
And after that the rules started to morph. So you get to challenge other people (3 to
however many) and some say you have to donate $10 no matter what.
And then people started to assume crazy things like the ice water is supposed to emulate
what it feels like to have ALS.
There are many articles about why the challenge raised four times more money than the Association
has in its entire operating budget. But it mostly boils down to a few things, the first
being luck.
It’s impossible to predict what will go viral. Ice bucket challenges happened before.
The right people and celebrities just happened to see the ALS one, and off it went.
Second being the nature of the issue. One of the difficulties anyone who wants to reduce
poverty or hunger or homelessness or crime has to face is the fact that these issues
feel old, tired, and endless.
ALS on the other hand, that’s a horrifying disease most people have never heard about
that might have a cure. There’s a sense of urgency there - a sudden new problem that
your money might be able to end.
And let’s face it, this challenge is much more fun than attending a $100 per plate charity
dinner. The nature of the challenge also lends itself to the showboating and general stupidity
the internet thrives on. Combine that with how easy it is for the average person to make
a video. A smart phone can handle it. Of course there are people in the world who don’t
have smart phones, but then that population isn’t necessarily the one you would go to
for donations.
Though in the US the people who can least afford to give are the ones who donate the
greatest percentage of their income. Which may be why this viral campaign has generated
a critical mass of mini donations. Unfortunately, this also means there will be less money donated
to other causes because of moral licensing. The $112 million has to come from somewhere,
and much will be away from other charities.
And then of course accountability, AKA peer pressure. This is not a distant nonprofit
saying do this or people will be sad, this is your friends. Your family. People who will
know if you don’t take the challenge. Plus if you don’t do it, they’ll also know
that deep down inside you’re an uncaring snob. You must pour ice on your head to prove
you’re generous and cool.
You’re helping solve a specific terrifying problem, it’s fun, it’s easy, you’re
accountable, you get to make other people miserable by challenging them, and viola!
A recipe for viral fundraising.
Don’t get the wrong idea, though. While you can replicate a challenge like this pretty
easily for a fundraiser, it’s not going to go viral again. Within a few months few
people will remember much about the ALS ice bucket challenge, and most will not donate
to the cause again.
And the only reason I’m not completely cynical about this internet phenomenon and all the
stupid videos and drama it created, the scams and the uproars over animal testing and embryonic
stem cell research and wasting water, the only reason I can curb my cynicism is because
of a single video.
Five months ago I was diagnosed at 26 years old. I hate talking about it. I really hate
talking about it. Nobody wants to see a depressing person that’s dying and has 2-5 years to
live. They don’t want to talk about it. They don’t want their day ruined.
It’s hard to live in a world where there’s lots of problems. And sometimes I think that
the only thing we can really do is pick something that matters to us, a cause that you can personally
champion. So my challenge to you is not to dump ice on your head. It’s to pick something
that matters to you and be a champion for that cause.
OOooooookay! I’m going back to making dumb videos.
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