The ALS ice bucket challenge has moved from a plea for awareness and donations to yet another public spectacle.
The aim was simple: to raise money and awareness for a debilitating but poorly publicized disease. By now, everyone knows the routine. Someone takes a bucket of ice water, dumps it over your head, chooses whether or not to donate money to ALS research, nominates a few friends, and the process repeats with each subsequent individual.
Amyotrophic lateral sclerosis (ALS), otherwise known as Lou Gehrig’s disease, is a neurodegenerative disorder that attacks the nervous system. This leads to difficulty moving, speaking, and breathing and in most cases leads to death three to five years after onset in an individual. To date there is no known cure because cures require research, and research requires funding. Hence, the ALS ice bucket challenge.
With over 110 million dollars collected to date and a slew of celebrity participants, it is safe to say that the challenge has taken over social media and much of our daily lives. The question has been raised concerning what draws the line between a genuine desire for helping others and raising awareness and simply wanting to be part of a large public spectacle.
Just because the challenge has raised millions of dollars does not mean that it has served its dual purpose of raising genuine knowledge about ALS. It is very possible to dump a bucket of water on your head, donate money, and do no further research regarding the disease.
A quick Youtube search will undoubtedly be filled with ‘top ten’ funniest, craziest, and stupidest challenges, none of which actually address the importance of ALS research. Some participants even admit they have no idea why they are doing what they are doing, just that they were nominated to do it. Take a quick survey and it is likely very few know the water is intended to mimic the effects of paralysis.
Just recently, a 15 year old autistic boy in Ohio was attempting what he thought was the ice bucket challenge but what instead turned out to be a cruel prank. Instead of ice water, his classmates dumped human feces, urine, and cigarette butts over his head. This incident has rightfully sparked public outrage and outlines one extreme case in which the challenge has turned into a joke. For this reason, it is probably time to put away the bucket, put the ice back in the freezer, and move on.
This is not to say that donations should stop coming in. ALS is a frighteningly debilitating disease that deserves funding. What does need to stop are the videos clogging Facebook newsfeeds, twitter feeds, and Instagram that all seem to be missing the point.
Despite the controversy over exactly where the donations are going, the ice bucket challenge has resulted in bringing ALS to the forefront of peoples’ minds. It just needs to be mobilized so that awareness turns into knowledge and knowledge turns into action. Hopefully once these challenges stop, as they inevitably will, ALS will continue to spark public interest and a cure will eventually be found.