My 5 Lessons and Thoughts from the ALS Ice Bucket Challenge: A Reflection

Last month I got to learn about Amyotrophic lateral sclerosis (ALS) or ‘Lou Gehrig’s disease through the ice bucket challenge. Almost as soon as I saw video of the challenge, I read an article about why people should not partake in it. I have since seen many more videos and read a few more articles on the merits and also the faults of the initiative.  Even though I do not agree with the idea of public charity, I do think we need to extend the conversation and unpack why we might not agree with this challenge. Seeing that the videos have stopped, I thought this might be a good time for a reflection. Here are the most common dissents I have been hearing;

Number 1. We are wasting water: This is true, water is being wasted. If we dig deeper, most of us are against wasting of water because we know someone else is in need of that water. This is valid. However, not doing the challenge doesn’t translate to someone else receiving it. So, my question is where are all the water organizations at? Can someone come up with a way for us to translate water saved to water delivered to someone in need? If this happens, I believe that most of us would work harder to save water if we knew it was reaching someone in need.

Number 2. Related to #1, there is a drought in the US and we should be saving water: Quoting a dear friend “a lame connection to this challenge and any drought in the U.S. is absurd. Teach yourself of the cycles of drought in the West over the last 1,000 years. Maybe so many people shouldn’t live in the desert where there is little rain fall? More water is wasted when you wash your nice car! Also, have you seen how green golf courses are in the West?! These lame critiques do not solve world problems.” She also sent me this article that gives an overview of the topic.  Consumerism is high and we need not look further the amount of food that is wasted to know this. Food is thrown away without even a blink; most recyclable items are things that could be substituted with something more permanent. What we ought to be doing is taking steps to limit our own consumption. So instead of buying water how about using a water bottle or bringing mug to get your coffee?

Number 3. Dumping a bucket of ice on your head does not make you a philanthropist: Again, very true.  Again, digging deeper, I don’t think this attitude should only be limited to social media campaigns. Running a 5K/10K/marathon, doing a triathlon, going to a ‘benefit dinner’, buying a CD, etc. shouldn’t also make you a philanthropist! And yet we let people off the hook all the time for doing this! Honestly, if I had to choose, I’d take seeing the ice bucket challenge over a triathlon because when there is one going on, my everyday life is affected even more with all the parking lot closures and traffic.  Additionally, it is very common to find university buildings, foundation names, scholarships, etc. under donors’ names. Shouldn’t we count these as well?

Number 4. Money should be donated to other diseases that affect more people: This seems to make sense now, but it lacks foresight. For one, with the current epidemic of the highly contagious Ebola fever, this does make sense. And maybe we should have more people doing the challenge to raise funds for the Ebola vaccine instead. A similar critique around the current HIV/AIDS funding also offers some insights. The global attention has been at the expense of other curable diseases, and the result being that many people are actually dying of curable diseases not the incurable ones. You could also add that this is to HIV/AIDS, that all the funding went to curbing this disease at the expense of other diseases which are curable. Nonetheless, what if ALS increases and affects more people in the future? Would we not find ourselves at these crossroads once again? Additionally, what the Ebola epidemic reminds us of right now is that money unfortunately does not always follow the numbers.

Number 5. Lastly, what is more significant to be was the lesson that “History was repeating itself’; I got to learn that black people in America were tortured through water boarding and ice water.  The photo and caption I saw being circulated on Facebook is from Torture and Homicide in an American State Prison: Harper’s Weekly, 1858.  This left me really conflicted. Usually I would take a stand against something like this. Nonetheless, I know that is a link to cold water on the head, how it temporarily leaves one immobile, just as when motor neuron die and one’ s ability to initiate and control muscle movement is lost. But the point, as a few articles have noted, while the challenge went viral, another part of the another part of the country, Ferguson, and another part of the world (see #4) was crying out to be heard. It seems that is a tendency to focus all the attention on one issue at the expense of others. As some critiques have pointed out this may be because mobilizing around a disease is seen as less political and more “moral” compared to mobilizing around the behavior of public institutions such as the police. We need to interrogate the politics of the choices of which “challenges” we take up and which we do not.

Overall, I am noticing more and more a trend in the naming of buildings and scholarships, especially at the university level, and organizations such as foundations not based on their aim/objective but rather after a person or family that sponsors that entity. Somehow the good deed done mostly reflects on an individual rather than the objective, and hence I am not surprised when I see people posting videos. To me, the ALS challenge seems to have ‘democratized’ the mirror of public charity and thus on it we find reflections of people all across the economic spectrum. My hope is that the same goes for our advocacy efforts.

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