Is the ALS Ice Bucket Challenge about structural inequality?

In case you have been living under a rock (or in the field, either is permissible for an anthro really) you may not have noticed that everyone and their mother is dumping ice water on their head in the name of ALS. Watching this fad unfold has provided Internet observers and other semi-employed persons an extraordinarily rich phenomenon to critique.

First of all, there’s a lot to like about the ALS Ice Bucket Challenge. By means of this fad I have learned that I have friends, Facebook friends, and friends of friends, who have loved ones or have lost someone because of this disease. It’s raised millions of dollars for rare disease research, which is inarguably a good thing. And it has done so by means of a viral marketing campaign that is, in essence, a short video clip of people acting silly. Wins all around.

It’s also interesting how, like the best of the Internet, the Ice Bucket challenge has spawned appropriation, reappropriation, and metacommentary. Here I’m thinking of Orlando Jones pouring a bucket of brass shell casings on his head to protest violence against Black youth in America, Matt Damon pouring toilet water on his head to draw attention to the lack of clean water around the world, and persons in Gaza pouring rubble on their head to draw attention to ongoing violence in Palestine. It’s really cool how the Internet allows people to riff on a theme and permutate established performances into something new.

And on the topic of performance its clear how the whole thing is highly ritualized. You have people in different parts of the world going through the same motions, for similar reasons, at more or less the same time. There’s the audience and the spectacle. There’s the physical experience, the making of a political statement as a kind of embodiment. The whole thing is extraordinarily rich.

As the fad wears on it has become clear that it is also problematic and/or revealing in someways too.

For one, the thing is a meme and its annoying in the way that memes are annoying. Like a pop song that follows you everywhere the Ice Bucket challenge has saturated the social media landscape, so its fair to be sick of it.

Additionally, its just weird how our capitalist society has created this world where charity has to take place via marketing campaigns. And its weird how public this kind of gift giving has become now that it is wrapped up in the narcissistic world of social media. I mean, I’m not making posts about every time I drop something off at Goodwill or volunteer for the PTA. It’s like it’s not enough to do good, but you have to tweet about how you’re doing good too.

But for many the issue at the heart of the Ice Bucket Challenge is the way it prioritizes the needs of a relatively exclusive community in a way that has been met with extraordinary public support. ALS is an extremely rare disease and one that disproportionately affects White males. Therefore it is revealing that addressing their needs has become so popular.

Now having said this, let me reiterate that it is tragic that persons I know have loved ones that are affected by this disease or that anyone should suffer it. Furthermore, it must be stated what a tremendous windfall this is for ALS research. Obviously, this campaign has worked beyond even their wildest dreams and they are no doubt at this very moment scrambling to plan for the drought of revenue they can expect next year once everyone is burned out on their cause.

Yet doesn’t this also say something about how health care and well being are reflective of structural inequality? Is it no accident that charitable giving towards research on a rare disease that disproportionately affects the White population would become an Internet sensation? Why wasn’t there a YouTube campaign for malaria, or whatever more pressing issue? It might be because most Internet powerusers don’t know anyone who has suffered from malaria, so it is more distant to them. They are more profoundly affected by issues that hit closer to home. And it just so happens that their voices carry more clout too.

I am reminded of the media coverage surrounding the ebola epidemic in west Africa, which only took off once Americans started contracting the disease and were med-evac’d back to the CDC in Atlanta. And the justification for bring these people, infected with a deadly disease and one so feared, back to the United States was that they deserved the best care possible. But what about the the hundreds or thousands of Africans with ebola? They don’t deserve the best care possible? Where’s their med-evac?

Having said all of this, people should give to the ALS campaign if they want to. And they should make the viral videos if they want to too. I love the outtakes and swearing toddlers as much as the next netzien.

But this is what structural inequality means, right? You experience it as benign when it benefits you while at the same time it occludes your privilege. I write this post from the comfortable bedroom of my nice house in the White neighborhood where nightly I walk the streets alone and without fear. Really, its 9pm, dark, and I’m walking out the door fully confident. It is a privilege and not an accident, as anthropologists its important to point that out even if it makes us uncomfortable.

Matt Thompson

Matt Thompson is Project Cataloger at The Mariners’ Museum in Newport News, Virginia, and currently working on a CLIR ‘hidden collections’ grant to describe the museum’s collection of early 20th Century photography. He has a doctorate in anthropology from the University of North Carolina and a Masters in information science from the University of Tennessee.

8 thoughts on “Is the ALS Ice Bucket Challenge about structural inequality?

  1. check this out: Kolkata introduces “rice bucket” challenge instead of Ice bucket, promoting the poor t

  2. That privilege and prejudice are deeply implicated in the ice bucket challenge can not be denied. But is this the whole story? As a tender hearted liberal who frequently contributes to good causes, I wonder if another important factor isn’t what I would call “donation fatigue.” Anyone who makes a donation or two online quickly finds their inbox filled every morning with emails urgently requesting additional donations (fundraisers know that those who give once are those most likely to give on another occasion). The number of appeals quickly becomes numbing. Attention turns to small causes where modest donations may, indeed, make a difference. A hundred bucks can be huge to a small charity like ALS. The same hundred bucks to fight Ebola in West Africa feels like a gesture to ward off despair. Throw in the ice bucket, which invites direct, physical, personal involvement. Add the appeal generated by celebrity networking. No wonder this thing took off like a rocket.

  3. I’m really glad you mentioned this blog in your introductory lecture this semester! Things like this keep me up at night, and it’s so great to read about from people more experienced and educated in them than myself. The whole premise of the challenge was unsettling to me for some reason, and I think this is why. Earlier, I read a blog post on the Harvard Law blog “Bill of Health” that quoted an article as stating that the cost to provide just one “quality adjusted life year” to an ALS patient, could be used to fund enough bed nets to provide over 500 in preventing malaria. And the Ebola outbreak is just awful. Both are diseases that are preventable with the right resources, and should not be so endemic in the 21st century, but it’s not as glamorous to donate to either, nor is it an opportunity to be self congratulatory, I guess. sad face

  4. I checked it out. The ALS association spends 27% of its revenues on research and services to patients. The rest goes to advertising, fund-raising, and salaries. Is this how you want to spend your money?

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