Samantha Brennan considers the ethical tensions in the ALS ice bucket challenge.
I haven’t done the ice bucket challenge, though my son, my sister-in-law, and lots of my friends have done it. I come pretty close to being the perfect subject for the challenge: I like charity challenges (I recently took part in the Friends for Life Bike Rally); and, in this case, the cause is close to home for my family. We lost my children’s grandmother, my husband’s mother, to ALS this winter. More recently, a good friend of mine has been diagnosed with ALS. I’ve learned a lot about ALS and death doesn’t seem to be the worst thing about it. Rather, it’s living with ALS that’s tough. ALS is an awful disease.
I made my skeptical views about the ice bucket challenge known early on—I’m a philosopher after all, skepticism is what we do best!—and so I escaped getting personally challenged.
There’s lots of criticism of the ice bucket challenge out there—for every bandwagon there is an equal and opposite wave of cold water ready to be thrown over it—and I won’t raise and respond to the full flurry of criticisms here. Is it dangerous and potentially life threatening? Is it wasteful of water? Does it show an utter lack of appreciation of the wonders of ice and the miracle of clean water in a world in which these things are frequently scarce?
There’s lots to fret about, but it’s hard to sustain that fretting in the face of such incredible success.
My main concern with the ice bucket challenge is a bit different.
The original design of the challenge seems perverse; either donate a $100 to ALS research or dump a bucket of ice water on your head. So, all the people sharing the videos and challenging others were in an odd way boasting that they hadn’t donated to charity. Now obviously, many people both donated and dumped ice water over their heads. Almost all of my friends and family did both. Why? I’m not quite sure.
The Daily Mirror estimates that an additional 34 million dollars could have been raised if all participants who took part in the challenge also donated money. However, it’s claimed that the challenge has raised more money in the past two weeks than ALS research has successfully raised in the past 15 years.
Some people believe that even those who didn’t give money helped to raise awareness about ALS. But I’m not sure how. My experience of telling people that my mother- in-law had ALS was that people, other than bioethicists worried about assisted suicide, knew remarkably little about the disease. The fact that they would then go on to commiserate about caring for someone with declining mental capacities let me know that they actually knew very little. One of the hardest things about ALS is that your body gradually stops working while your intellectual capabilities are fully intact. The person suffering is acutely aware of exactly how bad it is.
I’m sure it’s more fun to make and share videos of buckets of ice being poured over people’s heads than it is to share videos of people coping with the condition itself. The latter would just be sad, not uplifting and we like fun, silly, collective things. And that’s not a bad thing. It’s a fact about human nature. We could do good, be goofy, and take part in a popular trend all at the same time. I’m sure fundraisers for all sorts of causes are taking note and thinking of the next challenge.
Still, I’m puzzled about the nature of this challenge—donate money to a worthy cause, OR film yourself doing a this silly thing, share evidence with the world, and challenge someone else to donate money to the cause—and what it says about human motivation. I’d like to think it means we can do good even when the trend is ill conceived and doesn’t exactly appeal to the right motivation. Maybe others also had my response, donate quietly and don’t share. It’s hard to tell since the website for ALS Canada recently said, “You have reached ALS Canada. Due to the overwhelming response from the Ice Bucket Challenge, our regular ALS Canada site has been taken down to ensure you can access our Ice Bucket Challenge page.” From an ethical perspective, I think motives matter. But in the case of this challenge, the huge amount of good that’s resulted seems to trump the moral importance of motives. Doing good, even if for the wrong reasons, is still good.
In the end, I’m left scratching my head but smiling nonetheless. I’m puzzled by the perverse nature of the challenge and about human motivation. I’m happy despite being puzzled by the amount of money that’s been raised to help in the fight against ALS.