On ALS & the Ice Bucket Challenge

In which I talk about ALS, the ALS ice bucket challenge and its effectiveness, and get a bucket of said ice water dumped over my head. Please donate at ALSA.org or an ALS-related charity of your choice.

I tagged…

 VIDEO TRANSCRIPT

Hello, Earthlings! You’re watching Adam the Alien and today we are going to talk about the neurodegenerative disease ALS, AND the ALS ice bucket challenge and its effectiveness.

[THEME SONG PLAYS]

I don’t often script these, but I did script this one. So if you see me looking at a paper, that’s why.

I was tagged to participate in the ALS ice bucket challenge by my friend Nikki, a fellow member of the Classy Ladies group, and a collab channel compatriate on the mostly defunct channel, Vlogtag.

However, there are some things which must be said first, so that’s going to be part three of this video. So let’s begin with part one: what is ALS?

ALS is short for three words I may or may not be able to actually pronounce correctly: Amyotrophic Lateral Sclerosis. It is also known as MND, for Motor Neuron Disease, and perhaps most commonly (at least within the United States) as Lou Gehrig’s disease, after the famous baseball player whose plight brought the disease to the public eye in the first place.

ALS is, and I’m now quoting directly from the ALS Association website, “a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them. Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert.”

I want you to let that to sink in for a moment. A fully functional mind inside a body that is rapidly just not working. That is terrifying. On top of that, while some people with ALS and related disorders, such as Stephen Hawking, manage to live much longer than expected, they are the very lucky exceptions. Most people with ALS die within two to five years of their diagnosis.

Now, I am not an expert on ALS, and I encourage everyone to look up more information. Because aside from a very vague memory of maybe studying a little bit about Lou Gehrig’s disease at some point way back in elementary school, most of my very limited knowledge comes from Wikipedia, the ALS Association website, articles about the ice bucket challenge, and YouTube videos.

Which brings me to part two: the ice bucket challenge and its effectiveness.

The ice bucket challenge is a viral, charitable meme in which participants either donate money, dump a bucket of ice water over their heads, or both. Though I will be dunked in ice water at the end of this video, I made a donation of $10 (which was all I could afford) before the filming of this video.

Now, there are many critics of the ice bucket challenge, and they have a lot of valid points. Initially, I was one of those critics. It seemed to me, at first, that most ice bucket videos I saw barely mentioned, let alone talked about about, ALS or even where to go to donate or even that this was all for donating and raising awareness. I did not know what any of this was about. I just kept hearing about it over and over, and I saw people like Chris Pratt saying, “Oh, this is for a good cause!” And I’m like, “What is the cause?! Tell me about it!”

However, despite the failure by some to disseminate any kind of information, the ice bucket challenge has led directly to an increase in awareness about ALS and an increase in donations to ALS-related charities.

Prior to the ice bucket challenge, I knew exactly jack and squat about ALS other than those three letters. I didn’t even realize that ALS, MND, and Lou Gehrig’s disease were the same thing. And I certainly did not realize how frightening and terrible the disease actually is. This lack of knowledge comes in spite of having watched numerous videos about ALS every single year, during YouTube’s charitable Project for Awesome event. To my dismay, none of the information from any of those amazing videos stuck in my brain amid the deluge of amazing charities and causes being promoted.

Many critics of the ice bucket challenge cite selfishness, attention whoring, slacktivism, and general ineffectiveness as points against this viral awareness campaign. But the purpose of the ice bucket challenge is to raise awareness and draw attention to ALS. And the best way to raise attention to something is, unfortunately, by using attention-grabbing tactics.

It’s true that not everyone who participates in the ice bucket challenge is doing so for the right reasons. Some people, maybe even most people, are at least partially influenced by the desire to gain attention for themselves or to feel better about themselves. When I first asked for help in making this video, just…get someone to dump a bucket of ice water over my head, I was met with immediate cynicism, even anger, and just general resistance from people who were saying that’s it’s all about self-promotion, it’s all about “Me, me, me, me, me.”

And to some degree, that is true. But I also think there is a certain degree of selfishness in all charity. Nobody donates their time or money just because it helps others. That’s a reason. That’s a good reason. That’s a reason that I think most people who do this, and anything else like it, have. But there’s also that inner feeling that helping feels good! It feels great! It feels awesome!

People help others because it makes them feel good to do so. It feels good to help those other people. And because of that, the line between selfishness and selflessness is pretty blurred. They’re not the opposites everyone likes to make them out to be. It makes us more comfortable for them to be opposites, but it’s not the truth.

Furthermore, while people who give their money or time in a truly private way are truly admirable, wonderful people doing a great deal to make a difference, it does nothing to promote awareness.

That is, of course, assuming they didn’t tell anybody about what they did, about this wonderful thing they did. Which, let’s be honest, is pretty rare, because everybody loves to brag a little bit about the good things they do for other people. That bragging, however, is not always bad, because it’s the loud, annoying, self-aggrandizing things that bring attention to a cause and make people know about it, make people learn about it, make people investigate more about it. Whether they love it or hate it, more people are aware of ALS and what ALS is because of a purportedly annoying, selfish trend.

It’s not just awareness that’s ballooned as a result of the ice bucket challenge, either. At the time of this video, the ALS Association, which helps raise money for ALS research and to support those who are suffering with ALS, has raised over 88.5 million dollars and counting as a direct result of the ice bucket challenge.

And that brings us to the other major criticism I’ve heard for the ALS ice bucket challenge: that by promoting ALS and raising more money for the cause, money is being diverted away from other just as noble and just as needy causes and charities.

The thing about this particular campaign, though: it is not pulling money that was earmarked for other charities. It’s not about getting people to donate to ALS over, say, suicide prevention or cancer or whatever else. The viral, memetic nature of the ice bucket challenge, combined with the awareness of ALS and people feeling guilty if they don’t donate means that it is extra money being donated. It’s beer money! It’s movie money!

I mentioned earlier that I donated ten dollars. If I hadn’t, that money would have gone to gum. I’m serious. That money would have gone to sugar-free gum. Not to a charity. So you have taken my gum money and it has gone to ALS research.

So what this campaign is doing isn’t decreasing from the amount of money being given to other charities, at least not significantly, and not noticeably. It’s increasing money given for ALS research and support independently of any other charitable giving. All because people don’t want to be left out of a crazy popular meme, and simultaneously don’t want to be seen as stingy, uncaring douchebags.

So while I am normally someone who values a person’s intentions over their actions, I can’t argue with the results, here. Whether the people participating in the ice bucket challenge are doing so out of the selfless desire to help another human being or whether they’re doing so out of any number of completely selfish motives ranging from self-promotion to moral superiority, it’s doing a great deal of good, either way! It’s spreading awareness, it’s raising money for a good cause, and in some cases (though I’m sure not all) it is even raising the morale and lifting the spirits of those whose lives are directly affected by ALS.

Which brings us to part three: the ice bucket challenge itself. Here we go. Oh God, no, it was supposed to be quicker! It was supposed to be quicker, now I have time to think about it.

EMILY: Sorry! Don’t think! Don’t think! Ready?

ADAM: Ready! NO, GOD!

AAAAAAAAAHAHAHAHAAAAA!

I challenge Julia Wilde, Dr. Noise, and the Norman Tweeter crew. You have 24 hours, or you can donate, or you can do both, whatever. Just uh…yeah. Do it. And everyone else, look up information on ALS. You can donate to the ALS Association in…there’s a link in the doobly-doo. Sorry, my thinking is not well now. Brrr!

Anyway! I’m Adam the Alien. Until next time: fare thee well, and I hope everyone donates.

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