The Ice Is Not Enough


Oh, the ice bucket challenge. You probably already know what I’m talking about, but in case you somehow don’t have Facebook/don’t have the type of Facebook friends who dump ice on themselves in shared videos (you lucky thing, you), click the links. 

 

I’m kind of not a fan? Is that bad to say? There are already a handful of things online about how the ice bucket challenge (a thing I refuse to capitalize) is a really self-centered form of activism (“look at me! I’m doing something good for the world! And aren’t I pretty?” -everyone doing the ice bucket challenge). 

I guess coming from my perspective, it feels a little different than that. Of course it’s self-centered, but most forms of fundraising for causes are self-centered. You do a good deed, but you also get a t-shirt you can wear that says something about how you did a good deed. You do a good deed, but you also get to ride around on your bike in front of cheering people who are afflicted with some terrible disease and then people give you medals. All of this is about drawing attention to the fact that you, good-deed-doer, are awesome and everyone should notice. At the root of this is money, the money that you are giving to the cause of your choice, but let’s be honest, that’s kind of not the point. And in the ice bucket challenge, giving money isn’t even the goal, it’s a cop-out for those who won’t dump ice on themselves. 

As problematic as that all is, let’s talk about the ice itself. Supposedly, the ice bucket challenge is done to simulate the symptoms of ALS and show the pain that ALS patients endure. A pain that, if you believe the ice bucket challenge videos, is suffered by young folks with nice tans in summer clothes outdoors, and lasts about 5-10 seconds and is then followed by giggling. What are we raising money for again? These videos are also intended to spread “awareness,” but awareness of what? In most of the videos that I’ve seen, the person only briefly mentions ALS/donating but doesn’t mention anything about what the disease is, where donations will be going, or even that the ice-dumping is (again, supposedly) about symptom simulation. They don’t even say “amyotrophic lateral sclerosis,” because what, that would be too many syllables? 

I know that ALS is not MS (though they share some symptoms, but ALS kills you, and MS doesn’t, etc), but I can’t help but imagine the MS versions of this challenge. The Spin Around Until You’re Dizzy and Throw Up Challenge? The Lie On Your Arm So It Goes Numb Challenge?  The Lie In Bed All Day With A Migraine Challenge? What about the cancer, Crohn’s disease or diabetes versions? These don’t sound like super entertaining videos. The reality is that most symptoms of diseases are not pretty, and simulating them doesn’t make for attractive little 30-second clips out in the sunshine, because they aren’t anything you want to re-create. Somebody somewhere decided that a bucket of ice was similar enough to the pain and numbness that ALS patients feel. Somebody somewhere trivialized illness. Did they have ALS? Are they a doctor? Maybe, but that still doesn’t make this an okay thing to do to the rest of us dealing with chronic illness. 

Back to those people biking around for attention I mean causes: earlier this summer, I stopped by (seriously, for like five minutes) the MS Bike-a-thon in my hometown and was horrified. I saw a lot of people riding around in the heat on bikes. I have MS, which means (for me) that I can’t deal with heat, or balance on a bike very well. Participating in the MS Bike-a-thon would be fairly close to impossible for me. It would involve a hilariously unflattering ice vest and like… training wheels. It wouldn’t feel empowering or exciting. Marathons for cancer and walk-a-thons for muscular dystrophy fall into that same category, it seems: do stuff that sick people can’t do to raise money for them. Why? I’ve heard the response of “we’re doing it for you,” and I wonder what you guys think that means. Do you think I would rather watch people who I’ve never spoken to bike “for me” or do something with them? I would rather talk to them and have a conversation and do an activity that we could all do so that they knew exactly who and what it was that they were raising the money for. I would rather be included than pitied. Fuck them biking for me, because as a disabled person, I value the things that I can do, and I value my independence. I don’t need people who I’ve never met to do things because I can’t. 

Maybe this isn’t the right answer for some people, those who suggest that it’s okay because face it, it’s raising tons of cash. I wonder, though, why the money needs to be raised like this? What about the “nothing about us without us” slogan? Sure, that’s primarily used in regards to disability-related policy-making, but it can also be applied here. What if, instead of sharing a video of yourself drenched in cold water, you shared a piece of writing or art by someone with ALS? Or someone with any of the many other diseases/conditions that affect people, which would also benefit from donations to further necessary research. We’re talking, our voices are here, and they’re why people should care (and donate, if they would like to and are able). Not because someone unconnected to the cause looked into an iPhone camera and laughed a bit before saying “come on, guys, it’s the right thing to do” and then dumped ice on their head. Because of us. 

9 Comments

  1. Thanks for writing this! I learned a lot.

    For the most part, I agree with your observations about the ice bucket challenge. Like many other kinds of activism surrounding illness and terminal illness, the implementation is problematic: (1) it glorifies fundraisers, and may ignore the people for whom the fundraiser is supposedly for, (2) it doesn’t necessarily spread information effectively, and (3) in some cases, it can actually be disempowering to patients. I agree that bike-a-thons, marathons, etc., can all be problematic in these ways.

    But to be honest, I sometimes think problematic, effective fundraising is better than non-problematic, ineffective fundraising. Although I haven’t done too much additional research, my sense from some of the videos I’ve watched is that fundraising for ALS is one case where I’d support the problematic ‘awareness and donation movement’ anyway.

    From one video—some videos (see Rachel R.’s) actually did a good job communicating information about ALS—I learned a few things I didn’t know before: (1) ALS is terminal, (2) expected post-diagnosis lifespan is around two to five years, and (3) the only treatment proven to be effective extends life by a few months.

    I know medical research for most terminal conditions could use more funding, but I think it’s especially true when our best medicine can only prolong an already-short expected lifespan by a couple months. I think raising money now, even through something like an ice bucket challenge, is probably more good for the world than bad.

    Of course, if anyone has a better idea about how to raise a lot of money for research like this—I’m all ears. We can even brainstorm together, if you’d like. Believe me, I’m invested in activism that is effective and non-problematic.

    Reply

  2. Yes! Thank you so much for writing this post. I have just wasted the past 2 hours at work trying to find out how/why the challenge involves ice water at all. EVERYWHERE I went except your site, told me ad nauseum about how it was for this challenge to raise money for ALS research. Duh.

    I have MS myself and thought that “maybe” there was an intended meaning to the activity beyond raising awareness etc. BUT, all media anyones, corporate or personal, don’t mention that part of it at all!

    YOU DID! Thank you so much.

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  3. Unfortunately, you did not do your research about the ALS Ice Bucket Challenge and the person(s) who started this. Please take a moment and watch the SportsCenter Feature on Pete Frates called Pete’s Challenge.

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  4. There will be detractors with the mainstream, because its too mainstream for them. For someone who chooses to support any cause, it has to be feasible, executed with the least amount of effort, effective and generate the most bang for the buck. So I guess those guys who make this challenge going viral are bunch of assholes right? That ALS receiving donation money rolling is at the expense of ALS patients right? That no one should have any fun in doing something they do not fully understand too right? Check on google trends. People like me actually googled and get to know more about ALS and Lou Gehrig’s Disease. This search term went up trend over 1000%. Don’t be so quick to judge.

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  5. Thank you, Cade. I didn’t know about why a bucket of ice water. I hope your aren’t pissed at me for sharing. Love you.

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  6. I agree with the poster. In this world it seems there can’t be generosity without narcissism. The name on the plaques wall as a donor. The hierarchy of donors for theaters (producers, executive producers) I’ve survived a few bouts of illness and have not been made weller by people wearing certain colored ribbons. Let’s do the good that we do as though God had no recording secretary making note of our good deeds. Let’s not announce for public display how humble we are. Changing our name on FB for a day saying we are all Trayvon Martin isn’t the same as putting ourselves in harm’s way for the cause.

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  7. Thanks for sharing this — really appreciated your insights and your thoughtfulness. Yours is the first “I’m kind of not a fan..” post that made perfect sense to me! Thanks again.

    Reply

  8. To the ADMIN of “Spinal Tapped”, I mentioned you in my Facebook posting of my Ice Bucket Challenge last night! Thanks again for such an insightful posting.

    Reply

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