Alright, I’m the first person to question Internet activism. I’m still not convinced hashtags fall under the category of “activism.” I’d blog about slacktivism before I’d retweet a trending topic, honestly.
Enter: the ALS Ice Bucket Challenge.
Interestingly, the first video of someone doing the Ice Bucket Challenge that appeared on my newsfeed wasn’t someone I knew to be involved in ALS fundraising or someone in my family. This made me think something different was going on immediately, since my uncle has ALS and our family is highly involved with the ALS community. Then I saw a Mic article about the Ice Bucket Challenge, and I Googled it, finding a ton of articles explaining what was going on. Most headlines were similar: here’s why people are dumping ice water on themselves, etc. One stood out.
First of all, rude.
The article rightly questions how this challenge is helping anything. I get it. That’s valid. But the fundraising numbers alone say that it is—people are contributing to the continued funding of ALS research.
Beyond a bunch of arguments the Jezebel article makes that are completely irrelevant (see: “Should I feel bad for these people dumping cold water on themselves? I’d rather feel bad for the people with ALS.” Good thing no one is asking you to feel bad for anyone.), its writer completely misses what I’d argue is the point of the Ice Bucket Challenge: what it offers that other forms of awareness-raising don’t always.
It offers laughter. It offers a break from the horrors of ALS. It offers a chance to make your friends do something ridiculous. And the thing is: it’s not hurting anyone.
If I’ve learned anything watching my uncle live with ALS, it’s how powerful the right attitude can be. The man is the master of the well-executed ALS joke. When he began to use a walker, he attached a cup holder to it so he could tote around his giant gas station sodas. While I’m sure there are days that feel hopeless and sadnesses that overwhelm, my uncle has a unique ALS story because he is willing not to take it so seriously all the time. The thing is, we take things like this seriously automatically. A willingness to laugh sometimes doesn’t mean you don’t care or aren’t doing the situation “justice” or are ignoring the real suffering of families who have already lost loved ones to ALS, because, let’s face it: my family will go through that, too.
It only means we’re all going to live life fully alongside a family member with ALS, in all that life’s particularity and grief and laughter and love.
The article ends like this:
So maybe the next time you want to help fight a deadly disease, cut a check, volunteer your time, go to medical school—anything but this. Those Facebook likes aren’t really helping anyone.
First of all, I’ll tell ya what’s not helpful: that Jezebel article. Because even if ice buckets can’t cure ALS, those videos may have offered a minute of laughter, a minute of not thinking so hard about this disease. They may have offered levity to the work so many people do daily in hopes of furthering the next drug’s development. Through reading responses to the Ice Bucket Challenge, I’m learning to think twice about determining what is and is not helpful. A given method of activism may not be how I’d choose to show my support (though only because I haven’t been Ice Bucket Challenge-d yet!), but that is, by no means, a reason to denounce it completely.
Sometimes the best thing we can do to help is to brighten someone’s day when they may not be able to do it on their own. It’s no small task to change an emotion, and we’d do well not to underestimate that.
My family and I are involved in the Bright Side of the Road Foundation, which funds the Barry Winovich Endowed Chair for ALS Research at the Cleveland Clinic. For more information or to get in touch with some of the coolest people you’ll ever meet, hop over to their website here.