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.


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.

About junecaldwell

June's short story collection Room Little Darker is published by New Island Books in May 2017. She's a prizewinner of The Moth International Short Story Prize and has been shortlisted and highly commended for many others including: Calvino Prize in Fabulist Fiction, Colm Toíbín International Short Story Award, Sunday Business Post/Penguin short story prize, Lorian Hemingway (USA), RTÉ Guide/Penguin Ireland and Over The Edge New Writer of the Year. In 2010 she received an Arts Council of Northern Ireland (ACNI) bursary for fiction. Her work has been showcased at the Italo-Irish Literature Exchange in Nogarole Rocca / Verona (May 2012), Read For The World (June 2012) and Bloomnibus (June 2013) at the Irish Writers' Centre, Galway Pro Choice (Aug 2013), Over the Edge Galway (Dec 2013), Stinging Fly Spring Launch (March 2014), At The Edge, Cavan (May 2014), The Winding Stair Prizewinner's Reading (Sep 2014), One City One Book: DLR Lexicon Barrytown Trilogy reading (April 2015), Hodges Figgis Book Festival (Oct 2015), Bogman's Canon Fiction Disco (Nov 2015, April 2016), Doolin Writers' Weekend (March 2016), Five Lamps Arts Festival (Mar 2016), National Concert Hall: Kevin Barry Recital Room series (April 2016) and the Eastrogen Rising: A Rebel Cabaret. Her creative writing has been published in Woven Tale Press, The Moth, The Stinging Fly, Literary Orphans and Popshot, as well as a non-fiction biography of a Trouble's moll with Gill and MacMillan in 2006. Her short story 'SOMAT' is published in The Long Gaze Back: The Anthology of Irish Women Writers, edited by Sinéad Gleeson/New Island. Journalism: The Gloss, The Guardian, The Observer, Sunday Times, Sunday Life, Sunday Tribune, Sunday Business Post, Sunday Independent, Ireland on Sunday, Irish Independent, as well as a number of women's magazines and trade journals.

Posted on August 29, 2014, in Uncategorized and tagged , , , , , , , , , , , , , , . Bookmark the permalink. 20 Comments.

  1. It drives me absolutely nuts and it is a form of cyber bullying. Ive been called a spoil sport for not joining in and being told “its just a bit of fun”. Big pharma heads are sitting on their yachts laughing their arses off at the 2 euro donations that the brain dead proletariat are happily throwing at them. Research = animal torture, now thats quite a sobering thought for the ice bucket fun people. Its all part of a cunning plan to keep people terrified and fearful. No talk on prevention. Its designed to make people feel like victims, who are going to get sick and there is nothing they can do about. Its one big con. They know the link between motor neuron disease and eating meat and dairy, the same way countries that do not consume dairy do not get breast cancer. Breast cancer is caused by dairy and conventional deodorants. They know the link between aluminium in deodorants and they are not used on breast cancer wards, as a result, but they dont tell anyone about this until they actually get breast cancer. As for the no-make up selfies, what a joke that was, the ex model set in particular on my FB, presented themselves with dyed eyelashes and eyebrows and foundation on. One girl who I have met who has bad skin had flawless skin in her selfie and described herself as being “brave” for not wearing make-up!!. These gigs have enabled the narcissism in people to thrive and every idiot who wants attention to have their five minutes of fame. Its ingenious marketing and the proletariat have lived up to their subservient roles by doing exactly what they are told. Meanwhile, big pharma are enjoying their donations, sipping champers on their yachts and animals are being ripped apart in labs, all in the name of “good fun”.

  2. Some food for thought there Susan! Ta for commenting.

  3. Reblogged this on susanjcaldwell28 and commented:
    My sister’s brilliant piece on the cyber bullying that is the “Ice Bucket Challenge”. Well worth a read.

  4. You are most welcome. This says it all really, sorry I couldnt find a pic of big pharma on their yachts!!!

  5. Jane Summerfield

    June your piece absolutely hits the nail on the head. These types of charitable exhibitions are increasing in number and are so symptomatic of our culture these days. I have seen FB friends that I consider normal, getting sucked into this nonsense and in two particularly sad cases, actually tipping ice over themselves!!! Then in a Salem-ish witch hunt they name three other people who apparently, are the lowest of the low if they don’t follow suit within 24 hours. It is utterly purile. When did giving to charity become such a ‘look at me’ fest??? And don’t get me started on how this money is used/wasted. Apart from the dreadful and scientifically pointless animal torturing, what these mindless bucket tossers are actually doing is providing huge salaries and pensions to pen pushers. It is so sad how the public are manipulated these days. Thank you for pointing that out with such detail and precision. xx

    • Thanks so much Jane! And I absolutely agree with everything you say. People do more and more and think less and less. A friend of mine messaged on F’book to say ‘I’d love to comment but I can’t as my Aunt heads up one of the big charities [here in Ireland] and the first thing she did when she was made CEO was run out and buy herself a new jag’. It’s a brutal joke! There are charities however who do a lot for people on the ground, for sufferers and their families, and I admire the work they do, but they all seem to “cost” a huge amount to run and salaries are more often than not in the six-figure arena while most of the bucket-tossers I know are on the dole or in post-recession low-income jobs. But a trend is a trend, and brainpower is put on ice for a chance to shine and squeal for a few seconds of cyber theatrics. *sigh*

  6. Jane Summerfield

    Yes indeed. Charities who try and guilt those who cannot afford to give are a particular bug bear of mine. I have seen up close a local animal charity sit on thousands of Pounds donated in a Will by a local lady who wanted to help the cats. That money is simply sitting in an account. I think it is criminal. Meanwhile they are out shaking buckets.

    Anyway I just popped back because Susan has just told me you were both the sisters of the wonderful Aide who ran the Cock & Pye. He was such a lovely man, and the whole community was devastated when he died. I live in Ipswich and loved that pub. Without him it has become ‘just a pub’. It truly is a very small world isn’t it? xxx

    • Wow Jane, what a coincidence that you knew Adrian! Yeah, he was a super guy, very special and hilarious, bright and kind, we miss him terribly (particularly his kids). I miss my trips to Ipswich too but don’t think I could stomach going back now or seeing the pub. What a small world! PS. Terrible about that lady’s money sitting in a bank and not doing what she intended. I wonder what the reason is?

  7. Well the Ice bucket challenge is trivia for the sycophants while the rest of us try to do something useful with our lives.

  8. Jane Summerfield

    The charity in question is Cats Protection June which is a national charity but has local branches who handle their own money. Like many national charities they sit on millions of Pounds which people have donated to directly help the animals, but which simply goes into the reserves which help no-one. They claim they need it for ’emergencies’ but I expect by that they mean if the money stops coming in and they have their own salaries to pay. I would now only contribute to small charities here and abroad where you have evidence that every Penny is spent on the animals. One dear lady in Romania actually posts pictures of all the dog food receipts!!

    I can understand why you would not want to come back to Ipswich. Adie was always so kind and helpful with the football supporters group I am part of. Our Treasurer Colin Kreidwolf was a particular friend of your brother’s, I don’t know if you know his name?

    Some people pack a long and busy life into a short time. I think your brother was one of those, bless his heart.

  9. Jackie Pattison

    Great article. I particularly like the last two sentences. My birth family think I am ‘boring’ for not participating. When questioned one relative had no clue what ALS was or that it was even anything to do with the IBC! Seriously mindless…I despair…

  10. aoibhinn Marie

    Totally agree June, fair play to you for being brave enough to speak about it. You’re right, the challenge was donate or throw a bucket of iced water over yourself. So why are millions of people dousing themselves with water & where are the photos of receipts? A huge amount of people have taped themselves doing it & because you’re pointing out the stupidity they will attack you now so as to save face. Priorities are important when money’s an issue; 250 ADULTS in Ireland are affected by MND but thousands of children are sick in Ireland & on wating lists, many will die on waiting lists because of lack of money. If people have money to give to help others give it to the best causes, not the one you’re being told to give it to. Cure MND in 50 yrs or save dying children now – I know what I’d pick. And people should just give it, stop being narcissistic about it. Finally much research tortures, mutilates & kills innocent animals. I personally will never fund such abuse.

  11. The link between motor neuron disease and animal protein consumption has been know about for years along with a whole plethora of other increasingly common diseases and yet these large charities continue to collect money by using fear and then making people feel good about themselves with stunts and sponsored runs etc.

    People blindly follow the crowd without questioning that what they are doing is taking part in a marketing ploy. How do I know because part of my formal training in marketing was to raise money for not for profit organisations. In short I understand the system.

  12. June, I really enjoyed reading your article and made me chuckle too. I cannot stand charities such as ALS/Cancer Research – they exploit the fear in people and humans unfortunately, a lot of them, have herd mentality. If their friends are doing something, they want to follow. As you say there is no cure for ALS and yet people are going mental about the IBC – what the f..k is that about? Why not inform people of prevention, changing one’s diet but hey, that is not profitable and where will these fat cats get their money from them if cures were found…

    As for the “selfies” craze, that left me speechless 😦

    • Not sure about this, Rani. There is research being done into switching on and off of genes that lead to cancer and other conditions. It’s long-term and tedious work but relevant if you are concerned about MND or cancer.

  13. Thanks Jackie, Aoibhinn, Kevin and Rani: all of you have interesting things to say. Appreciate it.

  14. Excellent blog June, absolutely spot on. People should not be shamed through stunts like this into giving to a charity they would not otherwise support, quite apart from the very relevant issues of fund distribution and animal testing.

  15. Thanks for such a great, thought provoking piece, June. It’s refreshing to come across independent thinkers. I’m not surprised though knowing your sister Susan as I do. I said at the outset whoever thought of tapping into this societal narcissism for fundraising was ingenious. Making a killing. Couldn’t agree with the sentiments of you and your sister more, Susan. This is not about charity, it’s really a microcosm of why our society is in the sorry state it is, why people will follow the crowd anywhere, even off the cliff. It also shows most people have no clue what they are really funding.

    • Love that line Jane: ‘people will follow the crowd anywhere, even off the cliff…’. So true! Thanks for taking the time to comment. The IBC frenzy was really getting to me and I couldn’t keep my gob shut any longer. We live in a fad culture more and more because of the internet. Alan, ‘stunt’ is a good word, I don’t think people cared what they were donating to as long as they got to hop about and roar and get friends to do the same. I feel for anyone with a serious illness, but wish more was done on the ground to make quality of life issues easier.

  16. Mike Rowe
    August 27 · Edited
    Off The Wall

    “Hey Mike!! Charlie Willis challenges you to do the ALS Ice Bucket Challenge! He did it & donated so come on!!!” Posted by Mary Willis

    “We’re waiting, Mr. Rowe. You’ve been challenged over and over. What’s the hold up??”
    Posted by Maxine Allen

    “I’ve challenged you twice now. Since you have not responded by video, I certainly hope you’ve already donated.” Posted by Pia Yoacham

    “DUDE. ARE YOU GONNA TAKE THE CHALLENGE OR NOT!!!!!” Posted by Charlie Baker

    “It’s my understanding the person challenged has 24 hours to respond. Wonder why the coyness? But, maybe the coyness is the answer…and the answer is No?” Posted by Wanda Manning

    Hi All,

    Since yesterday was apparently National Dog Day, (seriously?) and since my second-to-the-last post triggered a variety of observations around my apparent failure to “rise to challenge,” as it were, I’m weighing in with another image of young Freddy, who like his master, has decided to forego The ALS/Ice Bucket Challenge.

    I mean no disrespect to the 500 or so individuals who have publicly challenged me to participate. And God knows, I’m in near constant need of a cold shower. But as a guy who has represented some rather large, profitable companies while running a non-profit foundation, I’ve got some opinions on the subject of persuasion, especially as it applies to fundraising. And I’ve been struggling with how to share those thoughts in a way that will not make me look like a douche-bag.

    First of all, I tip my hat to the marketing genius that conceived of this device. Thanks to The Ice Bucket Challenge, The ALS Association has collected $75 million dollars in donations. That’s up from just $1.9 million over the same period a year ago.That’s amazing, and totally unprecedented. And if we lived in a world of unlimited philanthropic resources, it would be fantastic news. But we don’t live in that world. We live in a world where generous people of finite means must allocate their charitable giving with discretion – in the same way they allocate all other expenditures. In this world, more money for ALS means less money for Heart Disease. More for Malaria means less for Diabetes. More for AIDS means less for Alzheimer’s. And so forth.

    It’s not exactly a zero sum game, but the cannibalism factor in charitable giving is a very serious problem. According to the experts, 50% to 70% of all the money collected as a result of the Ice Bucket Challenge will directly impact future contributions to other charities in an equal and opposite way. In other words, if The ALS Association collects a $100 million – as it’s on track to do – other charities competing for the same dollars will collect between $50 and $70 million LESS. Thus, the largest donations do not necessarily go to those charities that serve the most people or do the best research – they go to those that who market themselves in the most effective way.

    This informs the way I give, and the way I solicit. It’s one thing to sell cars or trucks or jeans or paper towels. God knows, I’ve been there, and I’m comfortable with the consequences of pushing one brand at the expense of another. But in the non-profit world, the stakes are bit higher. I’m reluctant to participate in a challenge that’s raising so much money for a small association, especially when it impacts other research that will eventually save the lives of millions. That’s the cold and shitty calculus of charitable giving.

    Of course – I understand those who see it differently. If my Dad or my brother was among the 6,000 diagnosed with ALS every year, I’d be standing under a shower of freezing water, waving my checkbook in the air and challenging the world to get on board. I remember when my Mom was diagnosed with breast cancer – I would have done anything to fix it. In fact, I took off my pants and challenged the world to donate the cost of their favorite pair of jeans to help find a cure. I get it.

    But here’s the thing – if you decide to give charitably, it’s important to understand everything you can about the way your money is going to be spent. That’s not happening here. The spectacular success of the Ice Bucket Challenge is not the result of a conscious, collective commitment to rise up against a terrible scourge; it’s the result of a marketing campaign. Consequently, a foundation accustomed to working for decades on a million dollars or so in annual donations, will now have to manage a $75 million jackpot. That worries me, as it should anyone who has ever studied the fate of lottery winners. That’s not their fault, but it doesn’t change the situation, and I’m not inclined to challenge more people to send more money to coffers that are already overflowing.

    Some of you will remember a recent post about my friend, Jill Brown. Jill is a stuntwoman who got a brain tumor and lived to tell the tale. Last year, she asked me to sponsor her in a walk to raise money for brain tumor research. She didn’t like asking, and I don’t blame her. Asking people for money is never fun. Even for a good cause. But Jill was very grateful for a second chance at life, and determined to support those suffering from the same condition that she overcame. So she personally called everyone she knew and explained why she walking, how the money that she raised would be used, and why the research was so important. Consequently, she raised a tidy sum for a great cause that was near and dear to her.

    Point is, Jill did several difficult things. She vowed to walk, at a time when walking wasn’t so easy. She committed her time, her energy, and her passion to a cause that mattered deeply to her. And most importantly, she made the whole thing personal. That made me want to help her. Not just because she’s my friend – but because she was helping herself.

    The Ice Bucket Challenge is different. Here, people I’ve never met give me 24 hours to either write a check to a charity I’m not familiar with, or dump a bucket of cold water over my head. Tell me honestly – if that precise challenge arrived to you privately, via the US Mail, what would you do with it? You’d throw it in the trash, right? But a public challenge is not so easy to ignore. Online, everyone is watching. Your friends. Your co-workers. Your clients. Maybe even your boss.

    When it comes to asking people for help, I don’t like to put them in an awkward position. So the only challenge I’m issuing today is to Freddy. If he can refrain from peeing on the floor, I’ll send a check to the local shelter. Beyond that, I’m staying dry.

    Again – to anyone who’s been affected directly or indirectly by ALS, my heart goes out to you. And to those who challenged me personally, I know your heart’s in the right place. So I’m going to reserve the right to dump various substances over my head at a future date for whatever reason I deem appropriate, and encourage you all to ignore the gimmicks, get informed about the charities you wish to support, and contribute generously to whatever cause resonates with you.


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