When something with more substance than kittens goes viral, it seems the skeptics and cynics who referee our public discourse feel obligated to roll their eyes and call fouls on the play. With the ALS #IceBucketChallenge, for example, they brand the ubiquitous videos circulating online and on social media with words like cliché and slacktivism. Some, like Los Angeles Times columnist Bill Dwyre, have told the kids to get off his lawn, noting that it’s “sad news” that we “seem to need a viral Internet event to stir us up.” Others, like Slate’s Will Oremus, have dismissed the practice; in his words, “A lot of the participants are spending more money on bagged ice than ALS research.”
When Bill Gates, LeBron James, Mark Zuckerberg, Ben Affleck, and most of the lineups of major television network shows are all doing something, it’s worth asking the questions that critics like Dwyre and Oremus are asking about effectiveness and action. Americans do have a tendency to be online followers, still vulnerable to believing what Harriet Beecher Stowe told us in Uncle Tom’s Cabin back in the 1850s, that the best we could do about a social problem is “feel right.” Put our hearts in the right place, this line of thinking goes, and the rest will follow. The problem with this is clear: it obviates the need for any of us actually to do anything or put ourselves on the line in any way. It lets us off the hook.
Whatever your particular take on memes or hashtag activism may be, I think we can all agree that making the world a better place requires forms of commitment expressed in real time. But the mistake that critics of the #IceBucketChallenge are making is the assumption that a bright line exists between what happens on Facebook and what happens in real life. It assumes that because it’s easy to put a video of yourself online, the people doing it aren’t also doing what’s harder: giving of themselves, their money, or their time.
But according to national news reports and the ALS Association itself, that assumption just isn’t backed up by the facts. The numbers suggest that the people pouring ice water on their heads (and/or the ones who aren’t) are writing the checks, making the donations, and getting it done. According to the ALS Association, as of August 18, they have received, “$15.6 million in donations compared to $1.8 million during the same time period last year (July 29 to August 18). These donations have come from existing donors and 307,598 new donors to The Association.”
So here is my question: why does the virality of the #IceBucketChallenge prompt such backlash? It isn’t just columnists and cultural critics sharing their irritation.
Here is a random sampling of comments from my own friends (whose ultrasound photos, food snapshots, and TV commentary I have encountered for years without a ruffled feather) about the prevalence of the #IceBucketChallenge on Facebook:
- “Enough with the ice buckets.”
- “I cannot imagine doing this and actually filming it.”
- “Seriously? Why not just write a check?”
In response to Mr. Dwyre and to these commenters, I have some counterpoints to offer: Whether or not it’s “sad” that we live in a world where we need a viral Internet to motivate us to get our asses in gear, it’s true and real. People record and post their lives on social media all the time and no one blinks.
Also: $15.6 million. Anything that brings in over three hundred thousand new donors is an unqualified success. Who cares if people are just doing it to be cool or to strike a pose or to avoid peer pressure, as long as they’re putting their money where their buckets are? The ice buckets are not pink rubber grips for your handgun or the pink gloves NFL linebackers put on every October. They are translating directly into results to fight a disease that Lou Gehrig put a face and a name on over seventy years ago but most Americans still have never heard of. If Magic Johnson had announced he had ALS, I promise you this country would know the name and symptoms of that disease. Which isn’t to say that HIV awareness hasn’t been utterly and foundationally crucial in our culture over the past thirty years. It has. Period. But the example proves the point that one reason people still wonder what ALS is that Lou Gehrig gave his famous “Farewell Speech” in 1937 and it was broadcast on radio, not streamed out live to millions of smartphones as a news alert or immortalized in an ESPN “30 for 30” documentary. The reason that Magic Johnson and Michael J. Fox and Angelina Jolie have leveraged their celebrity as a moral imperative to publicize the health challenges they’ve faced is because they know this: media coverage and public attention raise money and when it comes to medical research, money talks.
At worst, virality and media attention can contribute to the constant digital binge-fest to which we sometimes feel desperately addicted. But that shouldn’t diminish the fact that at their best, media and public attention – whether achieved by celebrity endorsement or a publicity gimmick gone viral – tell stories no one is paying attention to, enfranchise those among us with less social or economic power, and literally give voice to the voiceless.
I know what I’m talking about when I say voiceless. I mean it literally, because the last time I saw my grandmother a couple of months before she died of ALS in 2001, she could no longer speak. She had spent the previous few years slowly losing that ability, as it became harder and harder for her to eat without aspirating food into her lungs. She had survived lung cancer, the loss of the husband she married at 17 without warning from an aneurysm, and brought to her fight with ALS decades of a life lived with integrity and grace, not to mention three children and a host of grandchildren who loved her more than anything.
When I saw her that last time, she was still her indefatigable self, bopping around and writing animatedly on a yellow legal pad to communicate with me, her granddaughter who had recently graduated from college and had been living in New York for just under a year. Planes had not yet struck the Twin Towers, so instead of worrying about the fears I would face as an adult (as other family members did at her funeral that October), she wondered (via the pad) if I had a boyfriend. I didn’t, but almost wrote down that I had a friend I had a crush on (he is now my husband). I wish I had written that. I remember giving her my favorite lip balm from Sephora because she wrote that she liked the way it felt on her lips.
These personal details are what I was thinking about when I poured that ice water over my face, accepting the challenge from a younger first cousin who had even fewer years with our Granny than I did. I participated in the Ice Bucket Challenge and gave money to the ALS Association in memory of a woman to whom I owe a great deal and whose voice—such a vital sound in the melody of my childhood—went silent before its time. I think it’s great that CEOs, celebrities, and friends of mine are doing it too, even if they don’t have a personal connection or if they’re doing it just to look cool. And if that bothers you, I suggest you do what I do when I see something on Facebook that pisses me off: ignore it and go live your life the best way you know how. I’m pretty sure my grandmother would offer you the same advice.