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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