Slacktivism against ALS

the_als_challenge_540There’s this guy in North Carolina named Chris Rosati with ALS, known as Lou Gehrig’s disease, who handed out donuts to folks at schools, children’s hospitals and cancer wards. He wanted to inspire kids to come up with BIGG ideas of generosity. And he has succeeded in spreading an epidemic of kindness. As Steve Hartmann of CBS news put it: “A lot of people take on a cause when diagnosed with a terminal illness, but it’s usually to cure their own disease. Rosati, on the other hand, isn’t as interested in fighting ALS as he is in healing all of us.”

This has colored my reaction to that ice bucket challenge for ALS. On one hand, it’s silly; on the other, it obviously works. From Forbes: “Have you ever “been to a big ticket charity gala? Seen the big shots competing for auction items? Visited a local hospital or museum and noticed the wing named for well-known local philanthropist I.M. Arichguy? Watched the main stage at the Clinton Global Initiative? Heard of corporate philanthropy? And so on.

“Narcissism is part of public philanthropy, though it may be too harsh a word. Enlightened self interest is better – because it’s not just showing off.”

I think the cries of slacktivism from those who consider the ice bucket challenge no more than a waste of good water – there’s a drought in California! – rather miss the point.

I mean, what’s the difference between the ice bucket challenge and going on a walk to alleviate hunger (which I’ve done), or running to fight for breast cancer, or bicycling to take on some other cause? The ice bucket challenge is faster!

Some of the videos are even clever, such as THIS ONE. I AM sympathetic to the observations by local news anchor John Gray that some of the videos could have been better; his mother died from ALS. But even he ultimately applauds the effort.

This is true: the amount of money contributed to charities to fight diseases is not necessarily proportional to how many people have the disease, or how much they suffer. It is a matter of visibility; right now, ALS has got it.

I knew a guy named Robin for a number of years who developed ALS and has since died. He was a gutsy guy, using the latest technology to communicate, involving looking at letters attached to some voice-recognition software. But it’s a bastard of a disease, and if it can be eliminated, I’m all for it.
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Ironically, the co-founder of “ALS Ice Bucket Challenge” drown at age 27.

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