Junk Explained: What Is The #IceBucketChallenge, Who Is It For, And: Is It Helping?
First thing's first: we don't call it ALS in Australia. We call it Motor Neurone Disease.
If you haven’t heard of the ‘Ice Bucket Challenge’, it is your first time on the internet. Welcome, and thankyou for choosing Junkee!
The money- and awareness-raising campaign has gone viral in recent weeks — particularly over the past few days, when it’s clogged up every type of feed that tries to feed you.
The social media phenomenon has spread in a similar way #Neknominate did: whoever accepts the challenge nominates three others to do so, who then have 24 hours to donate $100 to the ALS Association, or pour a bucket of ice water on their head and upload the footage.
So far there have been thousands of videos uploaded, with over US$23 million raised for the disease as of Tuesday. In related but tragic news today, one of the men associated with the campaign, 27-year-old Corey Griffen, has drowned in a diving accident in Nantucket.
First Thing’s First: Australia Doesn’t Call It ‘ALS’
As most American websites covering the campaign will tell you, amyotrophic lateral sclerosis (ALS) is a progressive, terminal neurodegenerative disease also known as Lou Gehrig’s disease. The problem is that in Australia, we know ALS by a very different name: motor neurone disease, or MND.
There are five different types of MND, and ALS is the most common, making up 65% of sufferers in Australia. But where the US differentiates between the sub-types, Australia uses the umbrella term. For a campaign which aims to raise awareness for a disease, it would help to get the name right.
In an interview with techly.com.au on Tuesday, National Executive Director of MND Australia, Carol Birks, highlighted how challenging the campaign has become for her association, who aren’t benefiting from it nearly as much as they should be. “The UK, Scotland, some Asian countries, South Africa, New Zealand, they all call it MND,” Birks said. “Even in the States they have an issue because a lot of people only know it as Lou Gehrig’s Disease, they don’t even know about ALS, so the message is not always getting through.”
“I did actually just ring up one radio station here that was talking about it to highlight that we don’t call it ALS in this country, that it’s MND, but there wasn’t a lot of interest,” Birks said. “It all seems to be becoming about the ice and the water and not the cause. We’re hoping to refocus that a bit.”
After a few days spent trying to rebrand the campaign, Birks is hopeful. “It seems to be getting better,” she told us this afternoon.
Where Did #IceBucketChallenge Come From?
The challenge originated back in June as a series of dares circulating among pro-athletes, with altruism only really tacked on as an after-thought. It became associated with motor neurone disease in July, after two MND sufferers, former Boston College baseball captain Peter Frates (a close friend of Corey Griffen, and the man who inspired Griffen’s involvement in the campaign) and Pat Quinn (of Quinn For The Win), started circulating the challenge among their shared social networks.
And then, suddenly, this:
While the Topsy graph above shows #icebucketchallenge slowly gaining traction through late July and early August, it began clogging up your feed late last week, well and truly — largely because a bunch of big-name celebrities caught on, and began challenging each other.
Taylor Swift, Lil Wayne, Justin Timberlake, J-Lo, Bill Gates, Mark Zukerberg, Oprah Winfrey, Anna Wintour, Chris Pratt and Kermit The Frog have all accepted the challenge. Justin Bieber did it twice (he mentioned the cause neither times), Lady Gaga did hers as performance art, and Chris Pratt turned to booze.
Charlie Sheen won back some of the internet’s love by donating $10,000 to the ALS Foundation instead (“ice is going to melt, but this money is going to actually help”), and calling upon his three nominees — Ashton Kutcher, John Cryer and Chuck Lorre — to do the same. And, in one particularly good upload, Foo Fighters’ frontman Dave Grohl recreated the prom scene from Carrie:
And it’s entered the political realm, too. President Obama has been challenged by Ethel Kennedy (the 86-year-old widow of Robert F.), Justin Bieber, LeBron James and Weird Al — but opted to pay the $100 instead.
To show him up this morning, George W Bush took the bait (and Laura coughed up the cash).
Back home, Tony Abbott chose to make a “modest financial contribution” — but SA Premier Jay Weatherall, WA Premier Colin Barnett, VIC State Opposition Leader Daniel Andrews and VIC MP Josh Frydenberg have all been roundly moistened.
How Are We All Feeling About This?
As with anything that goes so viral so quickly, there’s been a massive backlash to the Ice Bucket Challenge. At its very basis, the rules mean that for every ice bucket being poured on a head — and there have been tens of thousands so far — the charity loses out on $100. Great!
Last week, Slate quite-fairly derided the campaign for failing to adequately raise awareness, with many videos making no mention of the charity or the disease. On Monday, The LA Times condemned the social media sensation for not taking a serious subject seriously, and the The Washington Post calculated how much water had been wasted. More generally, there’s the ever-present argument that ‘vanity charity’ or ‘slacktivist’ campaigns like this — and #Nomakeupselfie, #Cockinasock and (ugh) motorboating for breast cancer — do little to effect lasting change.
On the flip side, #icebucketchallenge is the only viral campaign to ever draw attention towards the disease, which has an average life expectancy of 27 months, and afflicts two people in 100,000 in America and an estimated 1,900 in Australia. And as of yesterday, the campaign had helped raise over US$23 million for the ALS Foundation, from 453210 new donors.
Athony Carbajal is 26 years old, and was caring for his mother — who is suffering from MND — when he was was diagnosed with the same disease in January this year. He offers perhaps the most undeniable rebuttal to the hate being levelled at the challenge, in a video posted yesterday to YouTube.
“This is the first successful advocacy that we’ve ever really, really, really had and I am so, so, so grateful,” he says. “You have no idea how every single challenge makes me feel. Lifts my spirits, lifts every single [MND] patient’s spirits. You’re really truly making a difference. We’re so, so, so grateful.”
While #icebucketchallenge is certainly problematic, any campaign that can raise money and awareness for a disease so effectively has to be, intrinsically, a good thing. But if you take up the challenge, mention the cause and get the name right — and why not challenge ’em to donate, too?
To find out more about motor neurone disease, or donate dryly, head to MNDAustralia.