It starts with a nagging muscle cramp. And then there’s a twitch in your leg that won’t go away. Weeks later you notice that half your body is inexplicably weaker than the other half. Soon thereafter your breathing becomes labored. You go see one doctor, who sends you to another doctor, who sends you to yet another doctor. After a myriad of tests rule out other possible causes, you are diagnosed with amyotrophic lateral sclerosis. Statistically, you will be dead within three to five years, but within a year there is a good chance that you will be trapped inside your own permanently frozen body. You will be able to think clearly, move your eyes, and control your bowels but beyond that you will have no function of your legs, arms, feet, hands or any other voluntary muscle systems.*
Although I understand that this would have put a serious damper on the recent viral sensation known as the #IceBucketChallenge, a part of me wishes that each participant recited that statement before dumping a bucket of ice water on his head and posting the video to Facebook, adjacent to the picture of his lovely homemade lasagna from the night before and the advertisement hawking a great deal on Comcast internet. To be sure, the campaign has undoubtedly been effective at raising awareness of the letters A, L, and S, but I don’t think it has actually succeeded in raising awareness about the disease at the heart of the movement.
The actual origin is debated, but a recent Slate article speculates that, unbelievably, what has become the ALS #IceBucketChallenge may have its roots in a Canadian version of a British drinking game called Neknominate. From there it possibly morphed a few more times before, on July 14, a semi-pro golfer by the name of Chris Kennedy dumped icy water on himself and challenged two friends to do the same or, if they didn’t, to “donate $100 to the ALS Foundation.” This marked the first time the challenge was associated with any ALS organization. I think that’s important to point out. The ALS Association did not create this viral sensation, and people who criticize them because the campaign wastes water or because the act of pouring icy water on oneself doesn’t inherently raise awareness should keep that in mind.
The GuideStar team kept seeing comments on social media questioning the campaign, so we recently launched a survey to get your opinion about the campaign’s effectiveness in advancing the ALS Association’s mission. The survey asked one simple question: “How effective do you think the ALS #IceBucketChallenge has been in meeting the ALS Association's overall mission?” with options to select a number from 1 to 5 followed by the opportunity to leave a comment. 1 corresponded with a response of “not at all effective,” 2 with “minimally effective,” 3 with simply “effective,” 4 with “very effective,” and finally 5 with “extremely effective.” After a week, with more than 100 responses, the average score was a 3.71, or in other words somewhere between “effective” and “very effective.” Personally, this is very close to where I net out.
This campaign, as with almost all things in life, falls into an unremarkable valley known as “a gray area,” below the much more noteworthy peaks of black and white. Despite some survey comments to the contrary, the #IceBucketChallenge is neither the greatest thing to ever happen to the nonprofit sector, nor is it the most annoying thing ever to happen to Facebook. It is, however, something that took us all by storm that demands further exploration. There is a nuance to this campaign that we should not overlook: whether this kind of viral movement really advances the social sector – and a singular nonprofit’s mission.
Questions of the campaign’s effectiveness in raising awareness aside, there is no doubt that the money the ALS Association has raised from the #IceBucketChallenge is going to be an effective tool in their battle to fight this awful disease and provide assistance to those who are suffering. The nearly $100 million that has been donated as a result cannot be underestimated as an effective weapon in combating this disease (assuming they properly handle the financial responsibility that comes along with such a large collection of donations.)
As I think about this campaign, I wonder what would have happened if, say, after $50 million was raised, the people challenging their friends to blindly donate to ALS would instead challenge them to donate to the most effective charity closest to their own heart. GuideStar has long preached about the money that is essentially wasted when people solely give with their hearts, rather than with their hearts and their heads. Would that have made people stop and think before dumping that bucket of ice? Would it have made them think about the disease that was the reason for the ice dumping? Would it have advanced the social sector over all if they did? I think so.
Many of the comments that people left following GuideStar’s survey centered around the feeling that this campaign became some sort of trendy popularity contest rather than a true act of charity: “slacktivism” as some called it. There may be some real merit to that, but perhaps that’s not a bad thing. Engaging people in a topic as heartbreaking as ALS is tough to do, and this campaign was nothing if not engaging. As with anything that engages millions of different people, however, there were individuals who made this campaign all about themselves, raising no awareness of ALS and instead raising plenty of awareness to their own Facebook pages. Sadly, this is a part of life.
At the end of the day, the efficacy of the #IceBucketChallenge should be judged by two things. First, did the campaign further educate the public about the tragic disease first brought to the nation’s collective attention by Lou Gehrig in 1939? Second, did the campaign raise funds to help fight the horrible disease and better the lives of those stricken with it? Undoubtedly, it was successful on the financial side of things, increasing the ALS Association’s typical donations during the same period last year by more than 4000%. But to the first point, it is my belief that the campaign has failed to truly educate the public about Lou Gehrig’s Disease.
Before I saw my first #IceBucketChallenge video my knowledge of ALS was limited to Lou Gehrig’s speech at Yankee Stadium and Stephen Hawking’s perseverance in fighting the disease. Sadly, after watching hundreds of people making themselves instantaneously cold and wet, I knew nothing more about amyotrophic lateral sclerosis. So much so that when I had the idea to start this blog by describing the initial symptoms of ALS, I had to Google “what are the initial symptoms of ALS.” This is the real failure of the otherwise effective campaign: after all of this attention and millions of dollars raised, people still do not understand the disease.
“My name is Gabe Cohen and I nominate the social sector to take the real #IceBucketChallenge: think before you give.”
If we all succeed in that challenge, there will be no need for a survey: our efforts will all score 5 out of 5, “extremely effective.”
*A quick note to anyone who wants to learn more about what happens when diagnosed with ALS: check out Mark Kari’s gut-wrenching tale of discovering that he has ALS. Most of the introductory paragraph was inspired by his courageous tale.
Gabe Cohen is the Media and Outreach Manager for GuideStar. To contact him, send an email to: firstname.lastname@example.org.