Friday, August 22, 2014

Me vs The ALS Ice Bucket Challenge


I am of two minds about this whole ice bucket thing going around at the moment, hopefully I can articulate myself well enough in what follows to not piss too many people off…then again, if you don’t get where I’m coming from, I’m not going to lose any sleep over it J.

Part one, the first:

I like this idea in what can probably be described as it’s core ideal. Raise awareness and money for an as of yet incurable disease. I would like to think whoever came up with the idea initially had only good intentions. I also think it’s awesome that as of me writing this, the movement has spurred somewhere in the neighborhood of 13-15 million dollars in donations and there’s over one million videos out there, so it’s probably fair to say that ALS awareness is at an all-time high. If you want to stick to the surface level of this issue then everything is all good, people are donating money and loads and loads of people that didn’t know about the illness are now aware and before you know it we’ll have this thing licked. However, that’s like looking at the rabbit hole from 20 feet away; you see it, but you’re not even looking down into it, let alone going down into it. So let’s do that…

Part two, where Cameron goes berserk:

Without discrediting everything I’ve already said on the subject, raising awareness is about the laziest thing anyone can claim to ‘do’ about anything. This obviously gets sticky when we’re talking about AIDS, Cancer, ALS, MS, Autism etc, because spreading the word is important and making sure more people are aware of these terrible monsters that live among us is integral to them eventually being eradicated. To paraphrase the comedian Doug Stanhope, let’s say there’s a terrible car accident on the highway and two cars careen off the road and into a ravine and there’s women and children and a family dog all involved, and let’s say that they’re all trapped and then one of the cars catches on fire. Raising awareness is me standing on the edge of the ravine pointing down and yelling to everyone ‘Look, LOOK!!’ I’m just making more people aware of the tragedy, but I’m not actually DOING anything about it.

Doing something about it would mean that we’d have to take time to research the problem, which means reading, and not just one or two articles, but 20-163 articles, and a lot of them aren’t going to agree with each other and most of them will have different statistics and some of them will have no statistics. And then after you’ve read all the information, and you’re adequately armed with knowledge, then you should write a letter to your senator or congressman and find out why they’re cutting funding to the companies who have bravely set out to rid the world of illness. Then after you write a letter and it goes unanswered or gets answered in some form-letter fashion, you should maybe get some of your friends together and make clever signs and march on your capitol building in hopes of getting the politician’s attention that way. If that works, then you’ll hopefully get some media time because politicians love them some media exposure and then maybe you’ll get some answers, or maybe they’ll just use the on-air time to bolster their constituency with some clever sound bytes and you’ll get a handshake and an empty promise of looking into the issue and you can go home thinking you accomplished something. You moved the chains, to use a football metaphor.

However, your little march could have just as easily been ignored and then you’d go home dejected and frustrated wondering what else you can DO to instigate some change. The world is ravaged by illness and disease, somebody should do something dammit…that’s hypothetical ‘you’ saying that. At this point, maybe you turn to the internet, because why wouldn’t you? Probably everyone that could possibly make an impact on this planet has access to it, so you just have to reach out. What’s the best/fastest way to make an impact in today’s society: viral videos. You’ll get media time, you’ll get the attention of celebrities, philanthropists, professional athletes, and maybe even some of those politicians that ignored you before…maybe even the President.

I have no idea if this in any way represents how this whole thing got started but it might as well be. I mean here’s a few other points and then I’ll get off my soapbox for the day…I know a lot of people that have done this challenge, and I absolutely don’t judge them for doing it. I think it’s the game not the player that is flawed. Let me put it a different way. Let’s say that someone from the NIH (National Institute of Health) or ALS Association (ALS stands for Amyotrophic Lateral Sclerosis and is often referred to as Lou Gehrig’s Disease, by the way) came out in a press conference and said something to this affect, "After careful calculation it is the opinion of all of myself and my colleagues that with a budget of 10 billion dollars, we can come up with a cure or vaccine for ALS. We have started a Kickstarter campaign and it will remain open until that number is reached, at which point we will have a product within 2-5 years." If that’s the situation we’re talking about, sign me up. I’ll donate money to that campaign. Even with a 2-5 year timeline on a vaccine/cure, that’s well within my lifetime and one less thing our children have to worry about. Now let’s move on to the next thing: cancer, AIDS, Autism whatever.

Where I have an issue is throwing money at a huge monster hoping it will make a difference. If you know someone suffering from or who has died from ALS and donating helps you feel like you’re contributing so that someday maybe we’ll knock this thing on its ass, then by all means, do what makes you feel good. But if you want to know why there’s no cures for some of the world’s most insidious diseases, it’s not the lack of funding and it’s not that we’re just not smart enough or don’t have the technology to figure this shit out. It’s simply that there’s no long-term money to be made in a cure (I mean there is money to be made, it's just not as much as they're making now), but there’s tremendously incredibly massive amounts of money to be made in the next fiscal year by selling a treatment; a band aid for lack of a better term. The pharmaceutical industry is a multi-multi billion dollar per year industry. If they cured all the things they treat, they might only be a multi (singular) billion dollar per year industry, and that is not something they can accept. And in all reality it’s the same issue we face with the petroleum/oil industry. Without getting too far down THAT rabbit hole, I’ll just summarize this point: it’s wonderful that the videos have raised money to help combat this problem, but 13 million dollars against a budget cut that is in the vicinity of 1-2 billion dollars is not going to turn this thing around.

I also take issue with people who are doing the video to do the video, and don’t know what ALS is and who don’t donate money to the cause, but they'r doing it in the name of ALS. Before a month ago, I was peripherally aware of ALS, but only knew it as Lou Gehrig’s disease and didn’t know they were the same thing. I don’t know anyone who is going through it or who has died from it. On a personal level, this particular campaign doesn’t resonate. That doesn’t mean I don’t care, it just means what it means to most people; if you don’t have a dog in the fight it’s easily pushed aside by other issues. For me it would be cancer. Both of my parents have gone through it, and pretty much everyone I know knows someone who has gone through it, is going through chemo now, or who has died from it. Even with all that motivation, I have a fundamental issue throwing money at a problem I KNOW has already been solved but the powers that be won’t ever let see the light of day. And if the cure for cancer comes out, it WILL NOT be because of an ice bucket challenge or a fun run or a telethon; it will be a brave individual or a collection of individuals who stand up and put the world first and their safety and well-being second and give the cure away on the internet, for FREE.

We live in the most exciting awesome time ever in the history of time. We have endless access to information and still most people keep their blinders on all the time. And hey, in fairness, with all the crazy shit that goes on in the world we can’t be sensitive to all of it, we can’t fight all the battles all the time, so maybe blinders are ok. Maybe if you want to pour ice water on yourself and give 20 bucks to ALS research so that for the next year you can pass by the guy in front of the grocery store who wants to talk to you for a minute about cancer research funding or so you can toss the spam email about the Autism Awareness march next Saturday, maybe that’s how we all have to get by.

But if you do want to actually make a change, maybe start by making a video to tell all your friends to go out and VOTE. The people in charge are the ones creating policy and cutting budgets and all that crap. If we don’t like the job they’re doing, it is exactly our RIGHT to get a new booty in that seat and hope that maybe he/she makes better decisions. Making a change isn’t easy and it isn’t quiet, and sometimes it’s not fast either, it can take time. Nothing in this world or in this life that is worth doing, is easy. It’s the hard that separates the dreamers from the doers. Go DO something today J.

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