September 23, 2019

The Ice Bucket Challenge: Where metrics meet meaning

A philanthropic campaign designed to combat an aggressive and debilitating disease has gone viral on the Web. 

In little more than a month, the Ice Bucket Challenge has inspired a spectrum of regular folks and celebrities — including politicians, athletes and movie stars — to dump a bucket of ice on their heads or donate to a cause. That cause is amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, and eventually leads to total paralysis and death. ALS affects nearly 30,000 Americans, according to the ALS Association, and the only hope for those afflicted is to fund research for a cure.

Enter the ice bucket and its frosty dare: Participants record themselves dumping a bucket of ice water over their heads, post the video to Facebook, Twitter, YouTube or Instagram, and then challenge someone else to do the same within 24 hours or donate $100 to ALS. Fortunately, many do both.

[Related: Jewish Journal’s Ice Bucket Challenge]

The proof is in the numbers, and these numbers are astounding: The ALS Association announced on Aug. 25 that it took in $79.7 million from July 29 to Aug. 25, compared with $1.9 million during roughly the same period last year (just a week earlier, they’d reached $22.9 million; by the following Friday, that figure rose to $53.3 million; and by the end of the weekend, nearly $80 million). More than 1.7 million of the contributors are “new donors,” many of them likely inspired to give out of gelid giddiness — or the joy of being in the company of a star-studded cast of participants, including Bill Gates, Oprah Winfrey, George W. Bush and Sergey Brin, all of whom have screeched and shivered on camera. 

“I am ready for the ice now,” Winfrey declared with quivering defiance, just before friend Gayle King dumped a bucket of ice over her ebony tresses. Winfrey shrieked and panted in her video posted to Instagram and challenged “The Hundred-Foot Journey” actors Helen Mirren and Dayal Manish, along with Steven Spielberg, Winfrey’s co-producer on the film, to do the same.

Spielberg, of course, was adorably game as two assistants sluiced ice water over his head. “Ohhhh MAN, That’s COOOLD!” he shouted. Next, he challenged J.J. Abrams, George Lucas and Jeffrey Katzenberg; Katzenberg even donned a tux for the trick, explaining, “When Steven Spielberg invites you to something, you dress for the occasion.” 

Abrams, creator of TV shows “Lost” and “Alias,” revealed in his Facebook post that his grandfather suffered from ALS, announcing that he would both dump and donate in his honor. 

Others used the forum in clever and crafty ways: Instead of ice, Hollywood bad-boy Charlie Sheen dumped $10,000 in cash on his head, challenging his former cast mates on “Two and a Half Men,” the CBS show from which he was booted, along with show creator Chuck Lorre, to match his donation. Revenge is a dish best served cold.

But statement-making aside, what accounts for so many leaders joining a frenzied public trend? And how did ALS’ incidental #IceBucketChallenge metastasize from kitschy caper into fundraising phenomenon? 

Part of the reason has to be that it’s so darned fun. Who doesn’t want to see Spielberg cry out from cold shock? Or watch Jimmy Fallon coordinate a group donate-and-dump on live network television? More than merely “follow” your favorite star by stalking their thoughts, you can actually follow in their altruistic footsteps. In a highly networked world, the Ice Bucket Challenge collapsed boundaries between watching and participating; between citizen and celebrity; between triviality and charity.

Who knew philanthropy could be entertaining, engaging and enabling all at once? 

The trend’s other strength is in its challenge. Most human beings have a competitive streak and want to prove that they’re game for a little test. This one was attainably simple: Give or do. Or do both. And it’s democratic: Everyone is eligible, proving you don’t have to be rich to participate in philanthropy — you simply need a smartphone.  

And yet, some have found the gimmick oppressive, publicly compelling people to give to this worthy cause, while ignoring so many others. And with so much emphasis on the slapstick silliness of it all, one wonders whether the deeper message about the urgency of the disease is being obscured. How many participants in the Ice Bucket Challenge know enough to explain what ALS is? So far, there’s no metric for that.

Still, there’s no denying that the brilliance of combining the social media ecosystem with the impetus for a cause has worked wonders for ALS, which now has significant new money to direct toward medical research that matters. Life expectancy for someone with ALS is, on average, just two to five years from the time of diagnosis. Its cause is unclear, and there is currently no cure, although one FDA-approved drug, riluzole, can slow its progress. 

In a sad and ironic twist, 27-year-old Corey Griffin, who helped spawn the Ice Bucket movement after watching his friend Peter Frates struggle with the disease, died in a tragic diving accident on Aug. 16. Life can be as fickle as an affected cell. And with death so unpredictable, it’s no wonder so many are (literally) streaming toward life.