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The non-state-sponsored exhibitionist mind virus

I don’t know who/what I loathe more: the grandstander goons hopping about on the nation’s paint-chipped bargain patios or the government and health agencies who’ve pulled much-needed funding for life-sapping human diseases, but either way I’ve a pain in the proverbial with the ice bucket challenge (IBC). I found the ‘no make-up selfie’ frenzy aggravating enough [women reassuring other women that they still looked ‘pretty’ or ‘lovely’ without the splat while being utterly convinced of their own sincerity] but there’s something about this latest on-line delirium that marks the end of autonomy as we know it. What would’ve been considered ugly chain mail in more saner times is now a marker for cyber success and skewed social acceptance. If you don’t comply, you’re anti-charity, a spoilsport, uncompassionate, selfish, a schismatic ne’er-do-well.

ALS Association didn’t create the hare-brained fundraising idea, but now it wants to own it…

Hysteria began at the digi-site of the ALS Association in America in mid summer. It’s the foundation that supports research and care for people living with amyotrophic lateral sclerosis, a muscle disease that’s also known as Lou Gehrig’s disease, or motor neuron disease here. Once the bucket is tipped, a squealing mutton head challenges others to lob iced water on their heads via phasebook/facebook. They usually have 24-hours to take the challenge so as not to donate (though the rules are constantly warping, according to taste). Here donations have been going (mainly) to the Irish Motor Neuron Disease Association (IMNDA) though other charities have also benefited. Most people don’t get that the actual premise is anti-funding and errr could be construed as offensive? If you are nominated and don’t take up the challenge, you’re supposed to suffer a fine of €100 to the charity instead of whatever you were going to fling their way (text MND to 50300). There’s no way to monitor who pays and who doesn’t and lots of people have both partaken and refused the challenge without donating a cent.

Let’s be fair, hundreds of thousands have been raised in Ireland since July (thewintercrab government slashed funding by €90,000 to the IMNDA this year) and by today it hopes to top the €1 million mark. In America the ALS Association confirmed it raised $94.3 million since July 29, compared to just $2.7 million during the same time period last year. It has also confirmed that only 27% of donations are actually allocated to ‘research’ – senior staff earn healthy six figure sums – the vast majority of its funds go on administration, education and other expenses. Incidentally it’s worth noting that there is NO CURE for ALS. It is a ferocious disease. From the time of diagnosis, most people live only two to five years. Now ALS has filed an application with the US Patent and Trademark Office seeking to trademark the term “ICE BUCKET CHALLENGE” for use in charitable fundraising. If successful, it would allow the ALS Association to stop other outfits from using the phrase for their own fundraising. It’s beautiful and strange and greedy and vile, like winter crab flavoured Doritos on a rabid dog’s tongue.

als-association-donations

Breakdown of the ALS Foundation’s Financials

In Ireland a total of 25 disability organisations had their funding cut this year. ‘Charities providing essential services, which the State declines to offer, should not be expected to rely on viral videos to keep the roofs over their heads,’ writes columnist Colette Browne in the Irish Indo. ‘At the very least, charities that people with disabilities, and debilitating illnesses, depend on should be able to count on a guaranteed minimum income stream each year without having to bow, beg, scrape, plead and cajole. Instead, the State has outsourced its duty of care to hundreds of thousands of citizens and is 
happy for social media to pick up the bill.’

iceMeanwhile supermarkets and off-licences have run out of ice, far-flung charities are bitching about water shortages in the third world, Chen Guangbiao, one of China’s leading philanthropists, is accused of faking his IBC video and a rake of urban myth horrific deaths are doing the rounds (broken necks, large buckets falling on children, blah blah) to add a bit of mounded fear to the mix. And of course there have been dozens of dramatic IBC #fails: the Belgium man who was seriously injured after having nearly 400 gallons of water dumped on him by a fire-fighting plane – as part of a catastrophically unsuccessful ice bucket challenge. As you’d expect, there’s new mutant more dangerous challenges sluing around all the time, such as The Fire Challenge, where blockheads douse themselves with an accelerant, ignite it, put the fire out, and then post the video on-line challenging like-minded blockheads to do the same. Possibilities = incalculable = never-ending.

According to The New York Times people shared more than 1.2 million videos on Facebook between 1 June  and 13 August and mentioned the phenomenon more than 2.2 million times on Twitter (that figure is up to 4.48 million now). The #nomakeupselfie hashtag has only been mentioned 221,488 times on Twitter by comparison, raising £8 million for UK cancer ibccharities. Likewise #Movember received 1,658,950 mentions on Twitter – and one in every eight of these was from the UK. So the IBC could well be the most successful on-line charity campaign of all time (more info @ The Huffington Post). If you watch this you will see where the ALS ice bucket challenge startedBaseball is a clue. Red Socks fan afflicted. Boston College player. Love story. Sport. Celebrity. Inspiration. Feverishness.

Other charities are criticising and challenging the ethos behind the IBC, calling it slacktivism, something that’s basically easy to do, funny to watch, populist and narcissistically self-promoting. Viral memes shouldn’t dictate our charitable offerings (especially when driven by celebrity or gimmicks). They point out that in 2013 ALS killed 6,849 people in the U.S., and attracted $23 million for research (a ratio of $3,382 per death). Heart disease, by contrast, killed 596,577 but only raised $54 million (a paltry sum of $90 per death). That ALS research is not an especially great need in public health compared to other nasty diseases. It’s classified as a rare disease and as such, doesn’t really need a lotto-load of funding. Charities such as Macmillan [cancer] in the UK have been accused of shamelessly ‘hijacking’ the ice bucket challenge for financial gain, and there’s also enmity regarding ownership of the Twitter #icebucketchallenge hashtag! Another general criticism is that participants of the IBC seem totally disconnected from the bleak reality of the disease, with little or no comment on the work of associations helping those living with it. In their keenness to lop about playing with water, they haven’t bothered to find out.

The Ice Bucket Challenge is a stupid idea – a form of moral bullying – and it’s working brilliantly. So both the pro and anti camps can get a lot of satisfaction from this PR pathogen and rest easy in the knowledge that it’ll mutate into something more substantial and hideous before Halloween. Charity, which traditionally began at home, has abandoned the counter-top buckets and tins of suburbia and is colonising our plug-in selves in typhus time. Those of us with some small trace of self governance left continue to donate sporadically and in serene silence. In the end we all get sick and die.