Over the summer it was hard to miss the massive wave of online videos in which people all across the country were dumping water on themselves and nominating others to do the same in the name of supporting patients with ALS (a progressive neurodegenerative disease also known as amyotrophic lateral sclerosis or Lou Gehrig’s disease). There have been a wide range of participants as well as responses to the phenomenon. From Chris Hemsworth, who thanked his fellow Avenger Robert Downey Jr. for nominating him to be a part of the “ASL” challenge, to Stephen Hawking, who, suffering from a motor neuron disease himself, asked his children to participate on his behalf. There was also Olivia Wilde, who used her video as a way of simultaneously drawing attention to the shaming of breastfeeding in public by using “breast milk” instead of ice water, and Anthony Carbajal, a YouTuber whose very personal video has now over 16 million views.
While there were many who took part, if to varying degrees of effort and understanding, the ALS Ice Bucket Challenge was met with a great deal of criticism from those who considered it a form of “slacktivism” or ineffective, and even harmful, viral philanthropy. In keeping with the criticism of somewhat similar online activism campaigns such as Kony 2012 and the equal-sign profile pictures in support of marriage equality, there have been accusations of narcissistic trend-setting and feeding dangerous illusions of non-solutions to legitimate issues. It is undoubtedly possible and not at all uncommon for people to participate without having a legitimate understanding of or even genuinely caring about the cause they are presumably supporting. For those participants it can be considered a form of privileged ignorance to be so removed from those affected and to promote potential misinformation. In the case of celebrities it is often debatable whether their participation diminishes the significance of a reality by adding a layer of stylish appeal or serves as a productive use of their influence. In any discussion about philanthropy there is always the question of whether altruism truly exists and if genuine compassion must always be exclusive from making us feel good about ourselves.
They are all fairly legitimate arguments. But there are other realities also worth considering that perhaps make blanket condemnation of things like Ice Bucket Challenges less important than trying to promote more thoughtful participation in forms of activism and philanthropy. If not everyone fully understood or cared what they were donating to, there have still been about $112.4 million worth of donations as of Sept. 12 to the ALS Association, according to their website. For those who believe they speak on behalf of ALS sufferers when accusing participants of diminishing the significance of patients’ struggles, it is worth considering that the Ice Bucket Challenge supposedly originated in Boston with Pete Frates, a former baseball player who now suffers from ALS himself. Then there is the perhaps harder to believe idea that not all participants are ignorant, trend-setting narcissists, but also people capable of understanding and caring while also participating in the wave of silly videos.
The Ice Bucket Challenge, like all its relatives, is neither a form of philanthropy nor a solution. It is neither inherently good nor inherently bad, but what we choose to make of it. There is a tendency in our society to dismiss “Media” as this corrupt and manipulative external power source rather than taking responsibility for it. This means understanding media as a social tendency that both influences and is influenced by us and thus engaging with it intelligently (i.e. being aware of your sources that determine the manner in which you receive information as well as the circumstances that determine how you perceive information). Like in any aspect of social behavior, there are various power dynamics and motives at play of which we should be aware. Much popularly consumed media is heavily and often unfairly or inaccurately influenced by powerful and biased individuals and corporations or even guided by political and commercial motives and agreements rather than an intention to neutrally deliver important, factual information. In the age of the Internet and widespread social media, perspective becomes all the more important as we grant more individuals access to platforms on which to be heard and give weight to smaller voices. In the case of the Ice Bucket Challenge it is as important to understand its potential negative consequences as well as its potential positive effects.
The Ice Bucket Challenge has also united a community of support while taking a moment to focus its attention on one of the many tragic realities we face and must address. It helps alleviate the pain of something undeniably dark by turning devastation into an opportunity for smiles and laughter. It provides affected people the chance to have their stories heard and shared, connecting both blissfully-ignorant and suffering people, a chance to create solidarity through a shared sense of compassion. This is not true of all its participants, nor perhaps is a #IceBucketChallenge even the most effective way of sharing stories, raising awareness, curing ALS, or uniting people under an empathetic understanding. For some, however, it is and its potential to be something meaningful and productive is something worth examining and nourishing.
As for Anthony Carbajal, he is one of the Ice Bucket Challenge’s optimistic participants and among the even fewer who know best the bleak reality of ALS. His video is somewhat lengthy compared to others. It starts out as rather silly with Carbajal sporting a bikini while washing his car before taking the challenge and then nominating Ellen Degeneres, who of course has now responded by not only participating and donating but also asking Carbajal to come on her show to do it with her. Coming from a family history of ALS, Carbajal has lost a grandmother to and currently cares for a mother suffering from the disease. Up until now he has known the devastation of being a firsthand witness while living in fear of the moment when, at age 26, he himself was also diagnosed.
“I really hate talking about it,” Carbajal says in his video. “That’s probably why nobody likes talking about it is because…nobody wants to see a depressing person that’s dying…But right now the ALS community has the main spotlight, and for once in my entire life I’ve seen it in the forefront…Not many people know about it, and there’s not very much incentive for pharmaceutical companies to invest the billions of dollars it takes to develop a drug, because I’m not profitable. I’m not worth saving.”
The playfully-charismatic young man performing in a bikini gives way to a tearful plea for people to listen and understand as Carbajal splices in shots of himself taking care of his mother, unable to move or hold her head up, as he speaks of his reality, noting that, “if I simply dump ice on my head I don’t think you’re really going to get the point.” He ends his video by expressing deep gratitude to those who have participated — “You have no idea how every single challenge makes me feel, lifts my spirits.”
And while he cannot speak on behalf of all those affected by ALS he speaks honestly at least for one. If it provides him, and likely many others, a sense of emotional support or healing, does that not make a simple video of dumping ice on one’s head worth it? If, in the face of his reality, Anthony Carbajal can hold on to his sense of humor and optimism, surely the rest of us can try as well. That optimism is what can push us forward — not just by moving on from tragedy but facing it with the hope that there is something better to be working towards.