Sometime early last week is when I saw the first video. I wasn’t sure what it was all about. Then, in the ensuing days I saw more posts, more hashtags. The trend defined itself. My Facebook newsfeed was transformed into a waterfall of ice water, pouring a shockingly cool awareness over me. With each brief video I watched I could feel my awareness grow colder until the ice water finally took hold and I was numb. Numb to awareness. The Ice Bucket Challenge is not without merit, we should all become more aware, but at what point do we recognize the banality of these video-challenges and take actual strides to achieve awareness?
When a close friend of mine, and fellow Bobcat Territory contributor, nominated me for the Ice Bucket Challenge I struggled with how to approach the nomination. I rest firmly in the camp that believes posting a half-minute video on Facebook of me getting doused with ice water will do little to raise meaningful awareness for Amyotrophic Lateral Sclerosis (ALS), aka Lou Gehrig’s disease. Of course I have the option to forgo my icy shower and donate $100 toward researching a cure for ALS. This act of philanthropy is ostensibly the more productive half of the challenge. But, let’s be real, as an unemployed graduate student looking forward to an unpaid internship this fall there is no way I’m donating $100 toward anything that doesn’t directly (read, subjectively) improve my wellbeing. Still, I wanted to accept the challenge to raise awareness while avoiding the icy numbness of hashtags and shame-driven video-challenges.
I thought carefully about how I could do this. My instincts brought me to the ALS Association’s website where a wealth of educational literature is available to interested parties, caregivers, and family members of those who suffer from this terrible disease. I was surprised to learn about the many research milestones achieved through funding by the ALS Association. Most importantly, I realized just how little I knew about the disease, its frighteningly quick onset, its difficulty to diagnose, and the different forms of ALS that indiscriminately strike people of all ages across the globe. For all I did not know, I found reassurance in what is being done at the forefront of the fight against ALS.
With some knowledge gained under my belt I decided to learn more about Pete Frates, a man diagnosed with ALS and the person most responsible for the viral Ice Bucket Challenge videos. With an entire website dedicated to telling Pete’s courageous story I was able to glean even more information on ALS. I found links to other organizations dedicated to researching ALS and helping patients and their families. I watched videos about ALS patients and those who are working toward better treatment and cures. What started as a simple web search turned into a journey of increased awareness. The same videos I mocked and despised for their apparent lack of awareness influenced me enough to learn about ALS and led me to Pete Frates’ website, the genesis of those very videos.
Had I not been nominated to undertake the Ice Bucket Challenge I don’t know that I would’ve done this research and increased my own awareness. In this sense, the video(s) achieved the goal of raising awareness for ALS. However, can we assume that every person challenged and every video posted created a similar response as my own? Unfortunately, I doubt very much that the majority of people posting Ice Bucket Challenge videos are actually taking the time to raise their own awareness. Maybe I’m wrong, I certainly hope I am, but if I’m right we are in the midst of a tragically ironic instance in which even the intended audience is unaware of any apparent contradictions.
It is wholly irresponsible to call upon others to raise awareness without first being aware yourself. The true challenge within the Ice Bucket Challenge is not choosing to get cold or donate more money than you want to. The actual challenge is realizing how unaware you are, taking accountability and increasing your own awareness. It’s easy to donate money, if you have it. It’s even easier to dump a bucket of ice water on your head and then challenge your friends to do the same. It’s hard to look at yourself, figure out what you don’t know and then aim to learn something. In that process, not only do you learn something new but also you learn about yourself.
There’s no denying the Ice Bucket Challenge has increased donations and created a buzz around ALS. But how long will it last? When will this campaign be replaced by another iteration of KONY 2012? When will ALS and the Ice Bucket Challenge lose appeal? These questions have uncomfortable answers, much more uncomfortable than ice water on your body. Lasting awareness, for anything, can only be achieved through individuals who choose to educate themselves and in turn educate others.
After raising my own awareness about ALS and Pete Frates I’m choosing to donate what I can to the ALS Association. With my newfound awareness I plan to be a repeat donor in the future. I’m not, however, going to nominate anyone to take on the Ice Bucket Challenge. Instead, I urge anyone and everyone to read up on ALS. Become more aware and make your educated decision on how to best help raise awareness. In fact, we could all stand to increase our general awareness about anything and everything. So go out and learn something new, learn about yourselves and whatever else you might be unaware of.