Tuesday, August 19, 2014

Ice Bucket Challenge Criticism

We know that fun, gimmicky, irrelevant campaigns like the ice bucket challenge for
Amyotrophic lateral sclerosis (ALS) have a greater capacity to go viral than perhaps something more issue-based. I'm sure that's why many people participate. If you can have fun and do some good at the same time, why not?

In general, I don't object to a campaign being fun and of course, I am pleased to see so much money is being raised for ALS. It's a terrible brain disease that gradually paralyzes people who have it and then kills them.

But I am offended and disappointed (but not surprised) that, despite the campaign's incredible popularity, public discussion about ALS is almost totally absent, except in news coverage, though even that, I've noticed, has often been superficial. But the criticism has not been.

In his article Health section of Time, Jacob Davidson, whose father died of ALS, explains the problem well.
"ALS needs all the awareness it can get, but somehow I doubt many learned a whole lot from contextless tweets of wet celebs smiling and laughing." 
On social media, people are literally just talking about ice and nominating people.

Slate writer Will Oremus also wrote a really great piece that highlights the issues of the campaign. This is my favourite part.
"As for 'raising awareness,' few of the videos I’ve seen contain any substantive information about the disease, why the money is needed, or how it will be used. More than anything else, the ice bucket videos feel like an exercise in raising awareness of one’s own zaniness, altruism, and/or attractiveness in a wet T-shirt."
I would also say that many people feel they are noble for enduring the discomfort of having an ice bucket poured over themselves.

Davidson and Oremus are responding to the common defence from ice bucket challenge participants and supporters that the ice bucket challenge DOES "raise awareness."

I agree with these writers, as readers of my blog will understand from my other awareness posts.

Awareness can only be called awareness if it fills a knowledge gap -- meaning it doesn't just share superficial information that everyone already knows, but in the ice bucket challenge, people don't even do that -- and compels people to take necessary, relevant action. Why do so many people think that simply uttering the name of a condition counts as awareness? We all know or have known people who deal with serious illnesses. It is our responsibility to understand what they are going through and how to help them.

My main issue with the ice bucket challenge is the notion that public discussion about a cause isn't necessary if a campaign is raising money for it. I think we set a very dangerous precedent if we start thinking that discussing a condition and its social issues will hurt a campaign's bottom line, which is basically what people have argued to me. Raising money isn't the only thing a cause needs, contrary to what many people seem to believe.

So what are these social issues of ALS?

One is cost. It is extremely expensive to care for someone with ALS, from assistive devices to care. In Canada, the application process for the Federal Government's Compassionate Care Benefit is not appropriate for the nature of the disease and many people don't qualify for the benefit. ALS Canada has advocated for changes to this. I am going to write a letter to my MP and see how I can get involved. 

I'm not sure what the solution to my criticism is: how do we raise money on this scale with a relevant campaign? How do we engage people in the issue itself on this scale, or engage them period?

I have had health issues my whole life and I have been served by numerous non-profit organizations. I would be REALLY angry if people campaigning didn't bother to learn about my challenges or why I have needed certain supports, not just because it's disrespectful and ignorant, but because if people don't educate themselves when the audience and the platform are this huge, when will they?


  1. With so many internet-fueled campaigns (KONY 2012, anybody?), I'm not sure how much substantive difference the viral campaign here will have. Of cours,e if a few people get engaged and some money is raised, that's unquestionably a positive thing, but it also gives people a false sense of warm-fuzzy-I'm making-change-activist-feelings.

  2. Hi Katy, I agree with you.

    I find it odd that I never see any evaluation of the outcome of these campaigns aside from X volume of Tweets raised, or whatever. This doesn't account for context and doesn't measure the real impact. I agree with you and I think this kind of evaluation of impact is perpetuating the mainstream misinterpretation of impact.

    Of course, the ice bucket campaign HAS raised a lot of much needed funding for ALS and I think many people see this as a free pass or even incentive to continue campaigning irrelevantly/without discussion or other necessary action. This is dangerous. Fundraising never, ever replaces activism. Our society needs both and this time is a great opportunity.

    Thanks for your comment, Katy. Your insight always contributes so much.


  3. I agree. I wish there had been much more discussion on ALS. It definitely needs it. That's why this is my favorite ice bucket challenge. https://www.youtube.com/watch?v=h07OT8p8Oik The man who did it, made a fun video to watch, but then provided real ALS information. I hate to see him diagnosed with ALS at such a young age. Our son was diagnosed with SMA Type 1 at 8 weeks of age. SMA is like ALS in babies. Most people have never heard of it, despite the fact it is twice as prevalent as ALS. We need to treat rare diseases now. Thank you.