Anything that negatively affects a person’s quality of life is worth collectively arising to eradicate. Amyotrophic lateral sclerosis (ALS) – referred to as Lou Gehrig’s Disease because, quite simply, Lou Gehrig had it – is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, increasingly affecting the ability of the brain to initiate and control muscle movement… which means that patients in the later stages may become completely paralysed. It strikes individuals as young as 40 and it is estimated that, at any given time, 30,000 individuals in the United States of America have it.
That’s 30,000 too many.
The latest craze to hit social media has been, of course, the ALS Ice Bucket Challenge. I have enjoyed some of the funnier and more original videos, especially the one of Patrick Stewart’s response. But despite the fact that I believe in the power of the grassroots to contribute to significant, lasting change in the fortunes of humanity, the ice bucket challenge, however, leaves me, well, cold.
It is great to see the number of people taking up the challenge for this cause and how consequently, more than enough money is being donated to continue conducting research for a cure. No doubt there is a renewed sense of gratitude from many that they are healthy enough to do this challenge. The spirit of collective fervor reminds me of the outpouring of contributions following the catastrophic 2010 earthquake that hit Haiti, the similar reaction following the horrendous 2011 tsunami that hit Japan, the outrage that followed the release of the “Kony 2012” video, the shock following the 2013 Bangladesh sweatshop fire, and, earlier this year, how quickly countless people used the hashtag “bringbackourgirls” when some 300 young girls in Nigeria were kidnapped by Boko Haram.
But there is also another similarity between the ice bucket challenge and other such phenomena: we as a society are remaining only aware of certain aspects of humanity’s suffering at certain points in time, rather than being continuously aware of the well-being of our brethren. Contributing to the increase in the quality of life of others as a response to a social media craze has an impact that is limited in its scope, and we are capable of so much more.
In this specific case, we are dumping ice water on our heads to raise awareness and funds, which is a fantastic beginning. But imagine that now, with everyone’s attention focused on ALS, we could begin a conversation on how we can contribute to the well-being of these patients on a long term basis. In two, five, ten years, how are we going to be there for these same individuals if a cure hasn’t been found, to make sure that, say, the social spaces they want to reach remain accessible to them? How are we going to support them and their families emotionally, mentally, and materially?
The question therefore become, how can we transform such events, inspired by an honest concern for the well-being of others, into a process that contributes to it?
It is important to ask ourselves these questions so as not to forget the bigger picture: well-being for all. For example, how are we supporting the containment of the current Ebola crisis in West Africa? It is a big question of course. But the success of the ice bucket challenge demonstrates that a lot of people care. We need to put this same energy into a conversation about on how to make a concerted effort for lasting change. And I am sure that it will be even more fun than this, this, this, and this.
Image credit: Chad Mauger.