The Ice Bucket Challenge: Awareness is Not Money

Like the rest of you, my social media feeds are being inundated by people dumping buckets of ice water over their heads. Friends, relatives, celebrities, athletes. Big Deal Important People like Oprah, Mark Zuckerberg, Elon Musk. If you've heard of someone, chances are they've either already taken or are about to take the Ice Bucket Challenge �" publicly immersing themselves in the aforementioned ice water, then daring three others to do the same thing.

Why are they doing this? For charity, specifically to raise money in support of the ALS Association. The point of the challenge is that you either accept it and dump freezing water on your head, or decline it and make a donation to fight ALS, a figure generally given as $100.

But why does a video of someone chilling their brain help fight ALS if the person doesn’t make a donation to go along with it? Because it makes people feel like they're doing something good. And, of course, it “raises awareness.”

And make no mistake, good feelings and awareness are the real currency of viral fads.

Before I go any further, I want to be absolutely clear: any donation made to support scientific research or patient care is a good one. Whether it’s the change in your pocket or the Picasso hanging on the wall of your Lake Como mansion. Money is money, and when given to a reputable organization, it’s all helpful.

And it does appear that the Ice Bucket Challenge is going to help a lot of people, with the ALS Association raising a huge amount of money because of the viral popularity of the dare. The numbers are hard to pin down (more on that later), but it’s a massive increase in the Association’s usual intake over that time.

So with all that money coming in and all that awareness raised, why does the Ice Bucket Challenge make me skeptical? And a little queasy?

Because awareness is not money. And the scientific researchers hunting for a cure for ALS (as well as every other life-threatening illness) don’t need awareness. They need money. In fact, what most people seem to have overlooked with the Challenge is that you get the ice bucket dumped on your head TO AVOID making a donation to support ALS research.

I want to reiterate that. Every single video you see of someone getting soaked, be they a celebrity or your co-worker, theoretically reflects a donation not made. While the “rules” of the challenge have evolved to include a smaller donation to go with the soaking (usually given as $10), the actual purpose of the soaking can’t be overlooked. No matter how popular the soakee is or how good their intentions are, and they’re almost always good, if you go by the rules of the game, a soaking represents either no money or much less money given to the fight against ALS.

As with most social media fads, the origin of the Ice Bucket Challenge is a little all over the map. The most cogent timeline, drawing on a couple of different sources, is that the phenomenon of dumping a bucket of ice water on your head and posting it to social media started not with ALS research but with a small circle of pro athletes looking for a way to goof on each other. You dumped ice water on yourself or made a $100 donation to charity.

When the fad went public, thanks in large part to Matt Lauer accepting the challenge on the Today Show, it still wasn’t connected to ALS research. That came a little later, thanks to a Boston College baseball player diagnosed with the disease two years ago. Since then, dares have been flying around Twitter, Facebook, Vine and YouTube.

But what about these dares? Sure, it’s fun to watch Hugh Jackman challenge Peyton Manning, Henry Kissinger and Ringo Starr (I made that particular one up) to face the wrath of the ice bucket, but without the donation to ALS, what’s the point? Some of the videos don’t even mention that the Challenge has anything to do with ALS, or charity in general. Without that vital context, it just looks like someone doing something stupid for publicity’s sake. And without a donation made, that’s exactly what it is.

But the awareness raised! Think of the awareness raised!

What about it? Is simply knowing ALS exists so important that we should be slapping ourselves on the back because we’ve joined the ranks of those who know ALS exists? What happens when advocacy is conflated with awareness is that people think they're philanthropists for even making the slightest gesture of giving a damn about someone else, whether that’s retweeting a Vine or spending two minutes to look up ALS on Wikipedia. But for most people, no money is involved. And remember, researchers don’t need retweets and Facebook likes �" they need money.

If you dump ice water on your head and make a donation, you’re making a gift that will help ALS patients and their families. If you dump ice water on your head and say you’re raising awareness of ALS, you’re telling people how much you care about ALS patients and their families, while making it clear that you’d rather freeze your ass off than help ALS patients and their families. What kind of advocacy is that?

Making yourself feel good is fine. And it’s not philanthropy. Telling people about an issue (and by extension, letting people know you know about that issue) is also fine. And it’s also not philanthropy.

Making a donation of your time through volunteering, a physical item of value or money, is philanthropy.

The other issue I have with the Ice Bucket Challenge is just that �" the money. I have absolutely no doubt that the ALS Association is the gold standard of fundraising for that particular disease. They have a four star rating on Charity Navigator and a score of 97 out of 100 in Accountability and Transparency. The Challenge dropped into their lap as a gift from the viral gods, and they’re doing the exact right thing by riding it as far as it can go.

However, the amount of money I’m seeing raised by the Challenge varies wildly from source to source, in a troubling way.

According to an August 12th article on Slate, the ALS Association told Fox Boston that it had raised $1.35 million in the past two weeks, largely because of the Challenge.

But an August 13th piece on Time.com put the figure at $2.3 million raised since July 29th, while an August 14th piece on Verge claimed there had been $4 million in donations between July 29th and August 12th �" the same two week period given in the first two pieces. Another Time article, also on the 14th, said the ALS Association reported $5.5 million given since July 29th.

Four different amounts of money reported at roughly the same time for the same two week time period. And it doesn’t end there.

On August 15th, Good Morning America claimed this amount:

https://twitter.com/GMA/status/500256625358565376

While on the same day, ESPN sports business reporter Darren Rovell chimed in with this amount:

https://twitter.com/darrenrovell/status/500276499489239040

The ALS Association’s own Twitter feed gave this amount one day later, August 16th:

https://twitter.com/ALSofGNY/status/500690162389897216

Where are all of these figures coming from? Is there data to support them? And how can we know which ones are right and which ones aren't?

8/19 Update: As of 8/15, the ALS Association started to put out daily press releases updating the amounts raised. They listed the amount raised through the Challenge at $13.3 million on 8/17, $15.6 million on 8/18 and $22.9 million on 8/19 - a spike of over seven million dollars in one day.

Needless to say, these are huge numbers. And there's no reason to think anyone, most especially the ALS Association, is lying about what's been raised. But if we’re judging the success of the Challenge by the amount of money it's raised, I think it's perfectly within the realm of skepticism to want independent confirmation of these amounts - while celebrating the fact that so much has been raised in the first place. The maxim of "trust, but verify" holds true - and doesn't mean anyone is a liar.

What’s clear is that no matter the reported numbers, the Challenge has been successful, both in terms of money and "awareness." ALS is on the cultural radar in a way it's never been. People are donating, some of whom are almost certainly younger people who haven’t ever made a charitable gift in their life. And that is a wonderful thing.

But don’t assume that someone dumping water on their head has made a donation themselves. They might just be doing it under the guise of spreading the word. Or boosting their own social media profile. Neither of which are especially helpful to people with ALS.

So if you’re weighing the choice between taking the bucket and raising awareness or declining the bucket and giving money �" please do the thing that the people fighting ALS need you to do. Give money, no matter what you do with the ice water.

And if you live in California, consider skipping the bucket anyway. We’re in the middle of a historic drought and “raising awareness” of that isn’t a viral fad yet.