If you have been on social media over the past couple weeks, your feed has no doubt been overflowing (pun intended) with videos of celebrities and friends doing an ice bucket challenge. Some say the challenge has been about raising awareness for ALS (amyotrophic lateral sclerosis, a neurodegenerative disease) from the beginning, but others say it started as a dare that was retroactively claimed for ALS. The last couple weeks have helped raise this year’s donations to the ALS Association to over $70 million, which is a big difference compared to the $2.5 million raised last year.
It might have irked you that the people dropping buckets of ice water on their heads were doing so to avoid donating to ALS, but then you figured that hey, it raises awareness, lots of celebrities are donating and posting videos, so it’s all good. In fact, this article in no way wants to discredit or minimize the experience of people living with this disease. ALS is a devastating illness that makes even simple activities increasingly impossible to carry out. One partner of a person with ALS said to imagine that you are trying to lift a forkful of food to your mouth with a twenty pound weight attached to your wrist. People affected by this disease are grateful for the attention over the past few weeks, because research into cures and treatments is only possible through adequate funding. But what does the ice bucket challenge mean to people living in the developing world, and how do we find a balance between donating because something is ‘shiny’ and makes us look good with donating to research that will impact more people world-wide?
Unfortunately there is no cure for ALS, and life expectancy is only 2 to 5 years from diagnosis. However, the incidence of ALS in the United States is only 2 per 100,000. A recent article by Scott Gilmore from Macleans says that this viral campaign misdirects charitable donations to a sector that is not in the greatest need. He says that need, influence, and urgency are factors that need to be considered when donating. ALS is classified as a rare disease, with deaths per year putting it far below the top 20 fatal diseases. Breast cancer alone kills 72,000 Canadians per year, whereas ALS deaths average at 600. Gilmore argues that the per person breakdown for donations to the ALS Association vastly outnumbers those to other fatal diseases. Lastly, he says that research for ALS is not an urgent need, and donations would go further in crises like the refugee situation in Syria or Ebola, a ‘full blown global health emergency’.
A viral campaign is any fundraiser’s best possible outcome. It means a chance to feel good about donating and be recognized publicly for doing so. The campaign’s high visibility means that people worldwide are aware of the trend, and it turns out that it is not just Scott Gilmore who has qualms about this latest ‘slactivism’ fad. Heather McTavish, a CUSO volunteer working in Costa Rica for the Network of Model Forests, refused two nominations for the challenge. She says that her Latin American colleagues and friends cannot understand why so many people are wasting water when 80% of the world’s population is ‘exposed to high levels of threat to water security’.
To highlight the need for water and food security in the developing world, Manju Latha Kalanidhi, a reporter for Oryza in India, came up with a new take on the viral campaign. The ‘rice bucket challenge’ encourages people to share pictures of themselves donating rice. In India, where a quarter of the world’s undernourished reside and 10.8 million people lack access to clean water, Kalanidhi thinks ‘the idea of dunking oneself in icy cold water…[feels] preposterous’. She wanted to do something local and meaningful that would not waste resources.
Matt Damon, the co-founder of Water.org, also had qualms about participating in the ‘ice-bucket challenge’. His nonprofit seeks to provide clean drinking water to the 800 million people who don’t have access, so wasting a bucket of drinkable water ‘seemed a little crazy’. So he used toilet water instead.
There hasn’t been a lot of good news in the past few weeks, so the ‘feel-goodness’ of donating and raising awareness for ALS is a welcome reprieve. However, people living in crisis situations do not want to be forgotten. By substituting rubble for ice water, Palestinians have created their own version of the campaign to draw attention to the ongoing military offensive in Gaza. Abu Yazan, a resident of Gaza, says that ‘we don’t have water, and when we [do], we can’t make ice since the electricity is off most of the time’. They aren’t even asking for money, but want to raise awareness about a humanitarian crisis that some people are calling an ‘ethnic cleansing’.
If you already donated to ALS research but have more charitable dollars to give, or if you are still deciding on an organization to donate to, perhaps consider Gilmore’s guide to donating. ALS is a terrible disease, but it is not a global health emergency like Ebola. And before upending a bucket of clean drinking water onto your head and uploading it to the internet, perhaps consider the 800 million people who do not have the luxury of clean water.
Sourced from Scott Gilmore at Macleans, Heather McTavish’s Blue Tierra blog, Mallika Rao at Huffington Post, Amar Toor from The Verge, Bo Stern’s blog, Robbie Couch from Huffington Post, and the ALS Association.