An edited version of this article appeared in the Sun Sentinel on Aug. 31, 2014. I’m restoring some of the thoughts that were trimmed for space considerations. The original article can be found here: http://www.sun-sentinel.com/news/opinion/fl-oped-als-ro-20140831,0,3681510.story
She died two years ago today, August 31, 2012.
Diane Riportella was my sister, and Lou Gehrig’s disease stole her from our family and her community. She was the most sinful of saints, a fundraiser for numerous charitable causes, a fitness instructor, a marathon runner, a “Woman of the Year” with a vocabulary that would embarrass a drunken sailor.
She was 51 when she was diagnosed with Amyotrophic Lateral Sclerosis, a degenerative disease that affects the body’s motor neurons and leads to a loss of the ability to control muscle movement. The muscles atrophy. Paralysis ensues. Death usually occurs within two to five years. There is no known cause or cure.
Diane told me the worst thing about getting Lou Gehrig’s disease was that she never slept with him. That was her sense of humor. She was 56 when she died.
She would have loved the “ice bucket challenge,” in which people dump buckets of ice water over their heads “or” donate to ALS research and treatment, calling on their friends to do the same. Now down to its last cubes, its results have been impressive, an indication that many of the people who splashed themselves also flouted the so-called rules of the challenge by donating anyway.
The ALS Association collected more than $101 million in donations in the past five weeks. Last year, in the same time frame, it collected $3 million. [Note: The association’s three-pronged mission includes research, patient services and education/advocacy. You may earmark your donation if you want to insure it goes to a specific use].
Another charity, Augie’s Quest, raised more than $3 million through the challenge, compared to $400,000 last year. [Note: Money donated to Augie’s Quest and the ALS Therapy Development Institute goes exclusively to research].
Yet for reasons that baffle me, there are those who treat the ice bucket challenge as a problem that needs to be solved. Refusing to take part in conspicuous giving, some choose to be conspicuous about not giving, making a spectacle of the fact that they refuse to make a spectacle of themselves for charity.
Then you have Orlando Sentinel columnist Beth Kassab, who wrote: “The solution is simple. Just give the money, if you choose, and forget the water.”
What kind of solution raises $3 million to solve a problem that raised $100 million?
Kassab joins other critics of the challenge who decry it as “just another” flash-in-the-pan Internet fad. This would be a valid observation if the ubiquitous Harlem Shake videos from 2013 raised a dime for any cause. They didn’t.
The ice bucket challenge is a fad, to be sure, and it’s going away. But “just another fad?” No. It stands apart.
William MacAskill, vice president of Giving What We Can, raises money for global poverty charities. In an argument that smacks of petty jealousy, MacAskill believes some of the donations finding their way to ALS are coming at the expense of other charitable causes. Diane Riportella would have had two words for such an argument. I can’t repeat them here.
MacAskill makes no case for why other charities are any more deserving of or entitled to contributions than the ALS Association. If ALS is “cannibalizing” donations from other charities, as MacAskill asserts, then an equal case can be made that other charities have cannibalized from the cause of ALS in the past. Neither argument is philosophically valid.
Here’s the cold, hard truth MacAskill ignores — no charity is entitled to freewill donations. Every non-profit bears the responsibility of fundraising, of getting its message out to the public in a way that causes the rest of us to respond by opening our hearts and our wallets.
Not all criticism of the ice bucket challenge is unfounded. The waste of water is irrefutable. I used pool water when I took the challenge, but the ice came from the fridge, so guilty as charged. If you’re in California, where there’s a serious drought, I suggest you skip the water entirely. If you must use water, do it at the beach — fully dressed, of course. After all, it’s a challenge. Make it fun.
Or do what actor Charlie Sheen and my Sun Sentinel colleague Doreen Christensen did — put cash in the bucket instead. You need not waste a drop of water.
My point is, while inconspicuous giving is laudable, conspicuous giving is more effective. Supporters of this cause tried to give quietly last year. But we’ll take this year’s $100 million “problem” over last year’s $3 million “solution” any day.
Thank you all for talking about ALS and giving to a worthy cause.
If you didn’t play along, that’s OK too. Giving is a personal decision. No one who declines to participate should be criticized for that private decision. I sympathize with many causes, but I can’t donate to all of them. Who can? And who can find fault with another person’s charitable priorities?
We now yield to the next Internet fad.