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This story first appeared in the Aug. 28 issue of The Hollywood Reporter magazine. To receive the magazine, click here to subscribe.
Last year, as videos of the ALS Ice Bucket Challenge spread, a strange thing happened. People who knew that my wife, Sarah, had been living with Lou Gehrig’s disease for five years, who knew she was unable to walk or talk or hug our kids or take one bite of food again, were suddenly asking us if we were OK. “Are you upset with the circus?” they asked. Did we need to talk?
I’m not sure what they expected to hear. That we were angry with people for donating millions to fight the disease that had broken our lives? That we resented the silliness, or questioned people’s motives? No doubt they were being kind but, honestly, what were they smoking? ALS is a brutal and relentless disease to live with every day, so the idea that we might live with that sadness and yet be offended by people having fun with buckets of ice was utterly myopic.
The Ice Bucket Challenge was a stroke of real genius, worthy of awards and its massive box-office success. Where it went right was in its understanding that people don’t want to be depressed with the details of a neurodegenerative disease. They don’t need to hear celebrities sharing stats about death rates and dollars. They want to watch friends and strangers and very famous people do silly things with buckets of cold water, from Bill Gates’ fantastic contraption to the ball-shrinking torment of Jimmy Kimmel having his galoshes slowly filled with ice. People donated money because they were happy — happy to laugh, happy to be sharing their compassion on social media, happy not to be dying from ALS themselves.
Hollywood itself might learn from this lesson. The reason why the fantastic French movie about a paralyzed man and his caregiver, The Intouchables, was such a hit was that it found truths through brilliant humor. We were asked to laugh, and it made us cry. By contrast, last year’s Hilary Swank shocker about ALS, You’re Not You, was laughable precisely because it hoped to make us weep.
In more ways than that, the Ice Bucket Challenge was tailor-made for Hollywood. It relied on people giving performances and usually overacting as the rush of cold water came and went. It depended on new distribution channels. And it spread because, as often happens in Hollywood, people feel it’s necessary to put their goodness on show irrespective of whether any good is actually being done. At its least appealing, the Hollywood charity circuit is about making sure your name is writ large on the invitation and your caring face is seen in The Hollywood Reporter. That child dying of malaria really should ask about the cost of The Art of Elysium’s next red carpet.
And yet, Sarah and I know from experience that it’s facile to paint all of Hollywood with this brush. When Soho House threw a fundraiser for Sarah soon after she was diagnosed, we discovered a community that was instantly caring and hugely generous. A-listers, B-listers and strangers we’d never met gave us money that, three years after the statistics said she might die, continues to extend Sarah’s life. Their generosity kept her alive. If that’s possible for us, it’s possible for everyone who needs help, whatever the motivations and methods used.
Read more from THR’s philanthropy issue below.
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