Last night, one of my former students called me out by name before dumping a bucket of ice water on her head as part of The Ice Bucket Challenge. This made me go out and do a little (read: very little) research on the phenomenon and, more importantly, the disease for which it claims to raise awareness. Now, as far as public internet embarrassment goes, dumping a bunch of ice water on your head is not a bad way of going about it, but I do plenty more embarrassing things on this very blog on a (semi) regular basis. So here we go America, I’m about to look douchey on the internet for ALS!
I’ve spent the last few minutes researching Amyotrophic Lateral Sclerosis (otherwise known as ALS or Lou Gehrig’s Disease). It’s a motor neuron disease that, near as I can tell with my highly limited medical knowledge, impacts the areas of the brain that control motor skills, resulting in severe muscle atrophy to the point that control over one’s body becomes impossible. Not just moving one’s limbs, but speaking and, at more advanced stages, even moving your bowels too. One of the most prominent sufferers of the disease (other than Lou Gehrig himself of course) is Dr. Stephen Hawking AKA Entry Number #9 on My Top 100 List of Famous People I Wish I Knew More About. (Although Hawking’s current condition is not exclusively a result of ALS, but the symptoms are there and any treatment developed for it would almost certainly benefit him.)
Short version: it is an awful, debilitating disease that exists on a long list of awful, debilitating diseases that most people live their entire lives not giving any thought to.
30 seconds of wikipedia-ing has now taught me more about ALS than most of the folks dumping ice water on themselves across the internet likely know about the disease. Herein lies my problem with the Ice Bucket Challenge.
For those living under a rock and/or off Facebook, thousands (millions?) of Americans have started taking (usually) badly framed iPhone videos of themselves dumping buckets of ice water on themselves and then challenging their friends, by name, to do it in kind. All in the name of raising awareness for ALS. (Awareness…we’ll get back to that word in a second.) A smattering of largely sports-based celebrities have gotten in on the action as well, which has helped the movement gain steam.
I had been aware of this phenomenon before last night and largely tried to avoid it. Once my name was dropped though, other former students proudly began proclaiming that “IF HE DOESN’T DO IT THEN HE NEEDS TO DONATE!!”
If I DIDN’T dump a bucket of ice water. On my head. On Facebook. Then I would be mandated. By oral (pop culture?) law. To donate money. To charity?
This feel like an episode of The Twilight Zone to anyone else, or is it just me?
“Imagine if you will…”
Now, I want to be clear, I love my students (past, present and future) and the countless friends and acquaintances I’ve seen take part in this phenomenon over the last week or so. Part of me feels like an angry curmudgeon at best, or a raging asshole at worst, for thinking/writing/posting this (its the same part of me that feels bad for hating on cosplayers). Generally speaking I tend to over-analyze social trends and that more often than not results in me having less fun than other people. Given that, I need to say that something feels deeply and profoundly off about The Ice Bucket Challenge.
Off. Not WRONG, but definitely off.
Firstly, I’d like to distance myself from the naysayers toting the party line of “The Ice Bucket Challenge is stupid, dumping water on your head can’t cure a disease!” Donations to ALS support and research groups have surged over a recent 10 day period to the tune of 160,000 dollars and national awareness of the disease has skyrocketed. For all intents and purposes, if a cure for ALS is discovered, it is likely that the The Ice Bucket Challenge may actually end up having a (very small) hand in it. This is a wonderful thing and not the first or the last time the internet will sway the general public into doing something good despite itself, for a little while anyway.
This is probably the point where you’re thinking (or saying out loud to your laptop or phone screen) “so what’s the problem here, asshole?”
The problem is intention.
“Take part in the live action meme with all your cool friends or suffer the terrible consequence of helping sick people! Don’t be a loser!”
It’s like the worst misappropriation of good will that I’ve seen in a while.
Now, obviously not everyone can put their money where their mouth is and if you can’t spare the funds to support a cause, using your mouth and/or actions to make other people aware that THEY can contribute is certainly admirable. But the fact that there MUST be countless post-teens and young adults across the internet DISAPPOINTED that their frat brother, or the guy two cubicles down or that cute girl you wanted to score bikini vids of opted to donate rather than shoot their own video leaves a bad taste in my mouth.
Yes, I know there are plenty of people donating AND posting videos because being silly on the internet is fun (I do it with sarcasm and misuse of grammar and punctuation instead of my flabby body covered in ice), but to leverage 15 seconds of internet fame against DONATING MONEY TO SICK PEOPLE is…well, does that sound right to you?
You (yes, YOU) should be donating to charity because donating to charity is a reward for being well off in life and not a goddamn punishment.
Armchair Activism is an important (and unavoidable so we might as well call it important) part of modern culture, because whether you want to pick apart the intentions of the ones doing it or not, the fact is that from time to time for give or take the last fifty years, people that would have otherwise not done anything truly positive with their lives were peer pressured into doing so and some people that needed help got it as a result. As annoying and seemingly vapid as things like Livestrong, Live Aid & Kony 2012 are, PEOPLE ARE ACTUALLY HELPED BY THEM. Usually not at the level their supporters intend/claim of course, but thats beside the point.
Try as I may though, I can’t see this particular trend doing much more than spawning the creation of a bunch of youtube videos of cold people when the point, seemingly, is that the ones NOT participating in it are mandated to be the ones doing the right thing. Should we not, then, want to see FEWER ice bucket videos because the implication then is that MORE people are donating? While I have no doubt that this began with the best of intentions, somewhere along the way I think the point was sacrificed in the name of the trend.
I donated 18 dollars to the ALS Association last night instead of dumping a bucket of ice water on my head. And apparently that means I…suck?
Yup, teacher uses pop culture trend to try and “teach a lesson” to the whole internet? Thats kinda douchey, right? Am I off the hook yet?
Before I conclude, it would contradict my own point if I didn’t mention that the ALS Association is a beautiful organization that has not only been a frontrunner in the search for a cure for ALS for the last thirty years, but has also become one of the primary sources of care and increased quality of life for those suffering from ALS.
You can, and should, throw them a little coin at this link.
Again, I want to be abundantly clear: I do not mean to cast aspersions on those participating in the Ice Bucket Challenge. You are all trying, in some small way, to make a positive impact on the world around you. You is good people.
I just personally think the awareness campaign should have more actual AWARENESS involved. And a little more actual philanthropy inherent to it.
That said, for all my skepticism and for all the (mostly silent) judgement I threw at the folks participating, I still managed to come out of The Ice Bucket Challenge with new knowledge I did not otherwise have, new tools I can use to help my fellow man and, most importantly, a good deed done.
UPDATE – AUGUST 19TH 2014