Moneeza Walji is the CMAJ Editorial Fellow 2014-15
You’ve likely been nominated by someone in your family, your group of friends or in your organization to do the . Amyotrophic Lateral Sclerosis (ALS), often called Lou Gehrig’s disease, is a disease characterized by the progressive degeneration of motor neurons. The cause of the disease is unclear and it has no known cure. Approximately 2,500 to 3,000 people in Canada are affected by ALS according to the . As the ALS Ice Bucket challenge has taken Facebook - and the world - by storm, social media is abuzz with a new term: "Slacktivism".
Slacktivism, according to the Oxford Dictionary is an action “performed via the Internet in support of a political or social cause but regarded as requiring little time or involvement”. The idea is that the Internet has inspired fads or trends to drum up support for a cause that most people don’t feel passionate about. I guess the question is: Is it all that bad if it raises a LOT of money?
What has the ice bucket challenge done?
Most people say the biggest thing the Ice bucket challenge has done for ALS is to raise awareness (I’d argue it’s raised a whole lot of money too but we’ll get to that). According to Facebook (), 2.4 million unique videos had been uploaded of people doing the Ice Bucket challenge by August 18th, 2014. That’s a lot more people who know something about ALS than before. Whether that increased knowledge results in better health for the people who know about it, is arguable. Increased awareness could result in more empathy for those experiencing the illness. At the same time, ALS is not a public health issue in the same way that Hepatitis, HIV/AIDS or even Ebola are. Awareness of the disease doesn’t necessarily translate into better health for those who know about it. What the current awareness has translated into is....
Money, money, money. Current statistics for funds raised by the Ice Bucket Challenge are staggering. The ALS Society of Canada has , which is over their $7 million national operating budget. In the same time frame, the US ALS Association has received $94.3 million dollars in donations, and donations have not shown signs of slowing yet.
We also can’t forget the shameless self-promotion the initiative has afforded those in the spotlight. Politicians, performers, socialites are all throwing themselves, and buckets of ice water behind the cause, raising immense sums of money and branding themselves as “people who care”. Positive publicity has been a huge advantage.
So what are the drawbacks?
Some say the ice bucket challenge could be harmful to your health. Having freezing water dumped on you could be a recipe for disaster if combined with the right risk factors. Others say it is a waste of clean water, for the millions without it around the world and for those in California experiencing a .
I’d argue probably in addition to the health drawbacks, skewing the priorities of philanthropy is a large concern. Perhaps I am a charitable cynic but let me walk you through an historical exercise:
In early 2001, the United Nations Secretary General Kofi Annan challenged governments to address the international HIV/AIDS epidemic that was overtaking much of the developing world by creating a Global Fund to address the problem. He asked governments to pledge money to support the creation of this fund. This was at a time when UNAIDS (the United Nations Agency for HIV/AIDS) estimated the number of adults and children living with HIV/AIDS worldwide to have been 28.6 million. (To provide perspective that was the equivalent of 92% of Canada’s population in 2001). In 2001, Canada pledged 25 million dollars to the Fund. That amounted to about $0.87 per person affected in 2001. We congratulated ourselves on the impact we were making on the disease, but were we really making an impact? Currently the >$94 million dollars that's been raised for ALS amounts to at least $209 per person living with ALS worldwide. The discrepancy is obvious. I am not trying to say ALS is not a worthy cause. Thousands of Canadians live with this debilitating disease and money is needed to fund research to find a cure and support their quality of life. But when “Slacktivism” takes hold, what does that mean for other worthy causes? Are people less likely to donate to other causes? The jury’s out.
Viral philanthropy campaigns are great for the causes they fund, but are in no way representative of the disease burden they address. ALS may very well have fallen in the category of “”, that is, diseases that are debilitating but, fortunately, rare. This (which quickly went out of date due to the speed at which funds were raised), shows money donated in comparison to deaths attributed to the disease.
Current conflicts have created and many organizations could use an urgent influx of money to deal with these crises. Similarly, the Ebola crisis in West Africa has been deemed a by the World Health Organization and seems like a more appropriate cause for launching what is, essentially, a crowd funding exercise.
So is it all hopeless? Of course it's not. There’s a collective feeling of doing good, enthusiasm, and being part of a movement, that has appealed to many. Though my Facebook feed is still crawling with videos of individuals, families, companies, and schools doing the ice bucket challenge, some people are taking this Slacktivist approach to causes that really matter to them. More individuals are doing the ice bucket challenge and donating to ALS along with other causes they care about. By giving a shout-out to organizations that matter to them, they go beyond being part of a viral campaign, to making a deliberate decision to stand behind a cause they believe in. That’s exciting. That’s a kind of activism I can get behind.
What do you think?