ALS:FTS Video Blog Thingy Numba Seven: EXCITING NEWS YO

Clinic Day! Also, should you send me that article about ALS? (Spoiler alert: yes you should) Promising research! How my disease is progressing. And some VERY EXCITING NEWS. Like, I am nearly in tears for pretty much this entire video because I am going to lose my shit I swear to God you guys.

INTERNET uses ICE BUCKET CHALLENGE! It’s SUPER EFFECTIVE!

(edit: Oh my dear, precious, sweet sensitive children. How ANGRY you all are. I didn’t write this in perfect seriousness, which I would HOPE was obvious (hyperbole is fun and mental! It’s fundamental!) but I also don’t expect to actually convert anyone to the cause with it. I don’t use gentle, persuasive tones in this piece because I’m not trying to be gentle or persuasive. It’s not a rally, it’s a rant.)

Seriously, world, why all the hate?

I realize that humans are hateful, spiteful creatures and will find a reason to hate on even the most innocuous things.

Awww a sweet boy-meets-girl love story! WHERE IS THE REPRESENTATION FOR THE GAY COMMUNITY!? Uh. Okay. Here’s a sweet boy-meets-boy love story then! WHY ARE YOU SO GENDER BINARIST? HUH? Okay…here’s a ..person meets person love story? WHERE ARE THE PEOPLE OF COLOR AND THE DIFFERENTLY ABLED CHARACTERS? Well I only wrote this with two people total… OH SO YOU ARE BIASED AGAINST POLYAMORY HUH? AND WHAT ABOUT THE ASEXUALS? THIS IS VERY OFFENSIVE.

Seriously, people, calm yo tits.

YOU ARE ASSUMING I AM FEMALE. I AM OFFENDED.

No I’m assuming you’re a bitch.

THAT IS INCREDIBLY SEXIST AND YOUR BLOG IS PROBLEMATIC.

Well my LIFE is problematic, fucker, so what. But while you’re here and angry, my little social justice warrior, let me explain the difference between ACTIVISM and SLACKTIVISM. And why the Ice Bucket Challenge is both, and why that’s okay. (tl;dr – IT IS OKAY BECAUSE IT IS FUCKING EFFECTIVE)

I have a deep-seated hatred for a lot of ‘awareness’ campaigns. I feel you. I cringe when I see pink ribbon bullshit on everything (SERIOUSLY SUSAN G. KOMEN IS AWFUL AND YOU SHOULD NOT GIVE THEM YOUR MONEY). I am actually ANGRY when those stupid games inevitably make their way around on Facebook again, where some girl sends a facebook message to all the other girls on her friends list asking them to post their bra color, or their handbag color, or shoe size, and not explain what that is or why. Let me run this by you:

22!

18!

10!

7!

293495!

…Are you now aware of breast cancer being a problem?

Well, yes, because EVERYONE IS AWARE OF BREAST CANCER. EVERYONE ON FACEBOOK KNOWS WHAT IT IS AND THAT IT IS TERRIBLE. But seeing a string of numbers on your friends feed does NOTHING. Except piss me off, because you’re wasting my time AND feeling smug about it.

This is slacktivism. “Post this status in honor of everyone you know who has died of cancer!” Okay, that does NOTHING. “Sign this online petition!” That does NOTHING. “Retweet this!” NOTHING. Nothing has changed because of you. When you post pictures of abused animals, you are actually HURTING your cause, because I do not like to see that and I will defriend your ass so fast you’ll see smoke.

Protip: If you are friends with the sort of people who need to be told that animal abuse is bad, YOU NEED NEW FRIENDS.

I can see why you might be tempted into Ice Bucket Challenge hate. But let’s see if I can’t calm yo tits FOR you. Hakuna your tatas, as it were:

1. “How does dumping water on your head cure a disease?” It doesn’t. Shut up. No one thinks it does.

2. “This is wasting perfectly good water.” Uh..we can’t send this one bucket of ice water to Africa. Just like the crusts from your sandwiches when you were a kid, this particular act of waste is not taking food/water directly out of the mouth of a person who needs it. If you want to be outraged about water shortages, go write a letter to Nestle and tell them to stop bottling water from drought regions and selling it.

3. “You bought that ice instead of just making some, you could have given that $2 to charity.” True. I also bought this soda, and this shirt, and my bus ticket to get to work. I have a LOT of money I could have given to charity. I didn’t. I’m just not that much of a saint. And neither are you. Until I see you selling your shoes to give the proceeds to charity, until I NEVER see you with a Starbucks in your hand or a store-bought lunch, you can shut it.

4. Most of the videos don’t explain what ALS is. No. Most of them are 7 seconds long, and it takes that fucking long to SAY Amyotrophic Lateral Sclerosis, never mind saying what the fuck it IS.

5. “You’re dumping water on your head rather than donating money”. That’s not necessarily true. In the original bet, it was an either/or. It’s evolved into an AND situation. You don’t get visibility into the bank accounts of the people involved, so you don’t get to see that part and don’t know for a fact that they aren’t. But a lot of people ARE. See #6. Also? There are some little kids doing this. Last I checked, 6 year olds don’t have $100.

6. “This is not doing anything to raise awareness.” You, sir, are a liar. And you should feel bad. Or maybe you’re so wrapped up in your cocoon of IBC hatred that you’ve not seen anything about the RESULTS. So let me educate you:

Today, the ALS Association reported that they have received donations totaling over 22.9 million dollars.

Last year by this time, they’d received 1.9.

Let me do the math for you.

In the last two weeks, the ALS Association has received ONE THOUSAND TWO HUNDRED PERCENT OF ITS USUAL DONATIONS.

ONE.

THOUSAND.

TWO HUNDRED.

PERCENT.

I have no statistic on how much of an increase OTHER ALS charities have seen. Oh wait, let me google that shit for you. Project ALS has raised $96,000 in a single weekend. Team Gleason isn’t reporting, but I know damned well they’ve seen a spike from co-opting this meme (bastards). The MND Association has certainly seen an upswing in donations.

The OTHER thing you don’t see?

Millions of people watching these videos, wondering what the hell ALS is, and then googling it. And learning.

THERE is your awareness, bitches. In these last two weeks, if even a THOUSAND people became aware of ALS without having been directly affected by it (because that’s cheating), then I’d consider it safe to say awareness has been raised. But tens of thousands of people now know what ALS is, when a month ago they were ignorant. And MILLIONS have heard the name.

How the fuck can you hate that?

You can’t.

Sit down. Shut up. Watch the fucking videos. Laugh. Donate some goddamn money. Lighten the fuck up.

ICE BUKKIT LOLZ

I’ve been getting OH SO MANY links to videos of people doing the “ALS Ice Bucket Challenge”. And just as many questions about how do I feel about this?

…That’s complicated.

If you’re somehow unaware of this whole thing, the ORIGINAL idea was put forth by a guy – NOT PETE FRATES, he did NOT start this, okay? – who challenged a friend to *EITHER* donate $100 to ALS research *OR* dump a bucket of ice water on his head. Once you do it, you call out three friends to do the same.

And it’s the EITHER/OR part that gives me mixed feelings.

People have missed the original intent. It’s gone beyond – with people just…dumping a bucket of ice water on themselves. Proudly showing the world that they *won’t* donate to ALS research, I guess? In fact they would literally rather pour ice water over their heads than give money to a charity. According to the original rules.

The most amazing star power has taken this up, and I really really really hope they’ve missed the point and are doing BOTH ice dump AND donate, because if Martha fucking Stewart won’t even slide ALS research a Benjamin? Seriously fucked up. But for the most part, it’s just become this machismo WOOOO ICE BUCKET YAY LOOKIT ME egofest. I’m really happy that nearly all of the celebrities I’ve seen do this make a point of calling it the ALS Ice Bucket Challenge and asked people to donate money to the ALS Association.

..except Steve Gleason. Fuck that guy. His “No White Flags” charity is a good one, but in his challenge video he’s co-opted it for his own fucking charity instead of the actual ALS Association, WHICH IS WHERE THE MONEY BELONGS. NO WHITE FLAGS, NO THUNDER STEALING, ASSHOLES.

The Ice Bucket Challenge has gathered a LOT of hate, too. “This is so fucking stupid. How does dumping ice on your head cure ALS? ”

Uh. It doesn’t. Which, No shit? No one really thinks brainfreeze will magically fix a terminal disease.

Is this promoting awareness that ALS even exists?

YES.

Holy SHIT yes. It’s completely unlike all of those stupid goddamned breast cancer awareness games on Facebook (“post the size of your shoe with a frowny face! teehee! Don’t tell anyone what it means!” HOW THE ACTUAL FUCK IS IT PROMOTING AWARENESS IF YOU ARE ACTIVELY REFUSING TO EXPLAIN WHAT YOU ARE DOING, YOU DUMB BITCHES) – promoting ‘awareness’ to something I’m pretty goddamned sure people are already aware of. Seriously. WHO HAS NOT SEEN THE MOTHERFUCKING PINK RIBBONS BEFORE. YES WE KNOW ABOUT BREAST CANCER K THX. (BTW SUSAN G. KOMEN IS A COMPLETE BULLSHIT CHARITY PLEASE STOP GIVING THEM MONEY, YOUR PRECIOUS PINK RIBBONS AREN’T HELPING DO SHIT. (Seriously Google that shit. They are terrible and have terrible policies. Don’t give your money to a ‘nonprofit’ that pays its CEO more than the motherfucking President of the United States.) )

Unlike breast cancer, ALS NEEDS an awareness campaign. I’ve often bemoaned the fact that NO ONE KNOWS WHAT THE FUCK ALS EVEN IS. Including ME before I was diagnosed. This is how it went when I told people before:

“I have ALS.”

*blank look*

*sigh* “…Lou Gehrig’s Disease?”

(half the time another blank look, but sometimes:) “I’ve…heard of that? I think? Is that bad?”

“It’s going to kill me slowly by turning me into a meat shell and then suffocating me, so yeah, it’s pretty bad.”

And now thanks to this whole ridiculous thing, I’m finding the conversation going like this:

“I have ALS.”

“Oh, shit, I’ve heard of that, that ice bucket challenge is going around. That’s pretty fucking serious, isn’t it? I’m sorry!”

It’s still not common to find someone who knows exactly what it is, but it’s a pretty good goddamned start. ALS doesn’t have a sexy celebrity spokesperson or a beloved childhood actor suffering from it, there’s no “star power” to my disease. The best we have is Stephen Hawking, and half the time people don’t even know who HE is, even after you say, “The scientist guy? In a wheelchair and talks with a robot voice? *sigh* He was on an episode of South Park?” And because human beings are FUCKING TERRIBLE ANIMALS, without ‘star power’, no one gives a shit.

Even though people have completely missed the point (except for example Jimmy Fallon, I fucking love his challenge video), it’s still getting word out that ALS is a thing. A thing that deserves attention and money and time. And thanks to this stupid meme, the ALS Association has seen a DRAMATIC upswing in donations. There’s been SUCH an upswing in donations lately, SO many people hitting the ALS wiki, that it’s goddamned inspiring.

And I just can’t hate that.