If you began reading this blog post knowing, from the title it is related to ALS and the videos of people dumping ice water on themselves; or if you have seen them, better yet played them or spent minutes of your time researching about this disease or the cause these videos serve, indeed the outreach of the challenge has been successful. The recent wave of people dumping buckets of ice water over their heads in the name of raising awareness and funds for the ALS disease has picked up momentum and will be around our social media news feeds for a while. And as in every outreach movement, if spread on without purpose and understanding, ultimately loses its meaning and becomes less valuable than it really could have been. The only way to preserve its value in the outreach is if, in every spread and sharing, with every participation, comes a deep sense of purpose and understanding- that is purpose in participating in the challenge and an understanding of what you’re really dumping over your heads.
First to clear the air on what this challenge and ALS is really about:
The Amyotrophic lateral sclerosis (ALS), also referred to as motor neurone disorder (MND) which is characterised by muscle spasticity, rapidly progressive weakness and difficulty in speaking or swallowing. It would be giving anyone who participates in the challenge too much credit to say that “the Ice Bucket Challenge allows you to know what it’s like to have the disease” because clearly it doesn’t. (Watch this)
The Ice Bucket Challenge didn’t originate as something directly related to ALS– it began simply, as a challenge that would be completed and passed on to encourage people to donate to their pet charities and nominate others to do the same. In fact, it was only popularised as something associated to the disease because of influential athletes in the United States participated in the challenge to support ALS. And the Ice Bucket Challenge, is not just about nominating each other and dumping ice water over yourself– it’s a challenge that has rules that should be abided if one would truly like to support the movement. By accepting a nomination, you accept that in a time limit you will dump ice water over yourself and donate $10 to the chosen charity, while nominating friends to do the same or suffer a $100 penalty for not fulfilling it. It’s not just about nominating each other and dumping ice water over yourself. (Read more here)
So here’s my take:
What participating in this challenge in support of ALS patients really does, is evoke awareness in not just the participators but their social circle and rally support that the ALS patients will receive through seeing these videos or through the donations that participators give. And there is definitely value in that, considering the outreach and awareness it has achieved thus far by letting this many people know about ALS. To the skeptics with whom I once strongly related, I encourage those who are not involved in the challenge to adopt a more curious attitude towards this challenge and its participants, questioning the purpose behind those who participate in the challenge and searching for an understanding to how this disease and challenge really works. Let’s give credit to the successful outreach and awareness this challenge has achieved.
However, as all outreach and advocacy movements share the same limitations, the challenge of being ‘slacktivism’-prone remains and there lies a tendency for this to become yet another awareness movement started with good intentions but whose value was abandoned along the way of its publicity and passing on.
And to reduce the possibilities of this well-intentioned Ice Bucket Challenge with respect to supporting ALS, every participant holds the responsibility of preserving its meaning and understanding their purpose in participating. While dumping ice water over themselves, participants have to realise the larger purpose of participating in the challenge and the way it is part of a bigger movement of raising society’s awareness about ALS and saying “Yes, I support ALS and I will donate $10 upon completing this challenge and encourage my friends to do the same because this is a cause I believe in and would like more people to support with me” I commend my friends who participated in the challenge and abided to the rules of the challenge and placed sufficient emphasis in highlighting their purpose and belief in the cause because this is exactly what preserving the movement’s essence is about.
If we are not ready to pass on outreach movements and contribute as an advocate to its cause, I suggest rejecting the nomination in the first place if we are unconfident of ignoring distractions (like the elements of “fun” and “cool”) and resist jumping on the bandwagon mindlessly.
With that, I look forward to being educated on the circumstance of ALS patients or any other less privileged groups from pet charities that the Ice Bucket Challenge has been completed to support; and hope to be inspired by the challenge’s advocates to contribute to the cause. Here’s to standing up for what we believe in in a purposeful way!