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.