The Ice Bucket Challenge: Boon or bane for ALS sufferers?

“I knew this shit was coming, but tonight? Really?” So begins Eminem’s live-on-stage Ice Bucket Challenge during a concert in Detroit. After some more joking and screaming from 45,000 fans, hype man Mr. Porter adds, almost as an afterthought, “Listen, before we do it, you can go to alsa.org to find out more about what we’re doing.” This prompts only a muted reaction from a crowd clearly waiting to see Eminem covered in ice on stage. Rihanna then comes on stage with the ice, eliciting a much noisier response from the screaming fans.

Meanwhile, South Carolina’s Governor, Nikki Haley, starts her video with, “Stephen, along with some other amazing people, comes to visit me at the State House every year to talk about this terrible disease, but today is a great day in South Carolina for an ice bucket challenge”. That’s right Nikki, you have really got the importance of the challenge encapsulated there. It is a great day for throwing ice on your head, and having your kids do it to remind us of how important your family is to you, as a politician, in the months before your next election.

What do these two videos have in common here besides a desire to appeal to their fans? Nikki Haley manages to use 10 seconds of her 90-second video to remind viewers of the purpose the challenge, which at first glance does not sound particularly long. But, when compared to the 6 seconds Eminem devotes in his 80-second video, the 6 seconds George Bush includes in his video, and the complete lack of reference to ALS at all in videos by Justin Bieber and Lady Gaga, it seems like Haley has done quite a good job. Perhaps the worst example of this neglect of ALS itself in the ice bucket challenge comes unsurprisingly from the Daily Mail, which described Poppy Delevigne’s ice bucket challenge as follows: “Poppy Delevingne shows off washboard abs in green bandeau bikini as she performs ALS ice bucket challenge.” It also used the same article as an opportunity to promote the sales of the same bikini to women across Britain in its super-useful ‘Now get one like it for less’ section.

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The Ice Bucket Challenge has its beneficial effects, of course. The ALS Association in the USA has, over the course of the past month, raised more than double what it raised in all of the previous year. Awareness of the illness has no doubt increased, but I suspect that many people who have been exposed to it on Facebook and Youtube could still not say what ALS actually stands for (Amyotrophic lateral sclerosis), let alone begin to comprehend its symptoms and devastating effects on those who suffer from it and their family and friends.

The Ice Bucket Challenge is not the kind of thing I would typically take umbrage with, certainly not to the extent of writing against it. Like most people, I would see it as just the latest social media craze, albeit for a better cause than usual. However, for me, neurodegenerative disease is not an abstract concept on the internet, but a living reality, having watched the body, and then mind, of my grandmother be ravaged by a similar disease, Multiple Sclerosis (MS), for the first 17 years of my life. It makes me sad and angry to see ALS trivialised in this way. Neurodegenerative diseases are not pleasant in any way; they are the opposite, leaving many of those they affect in a living hell where they gradually lose all motor skills and much cognitive function – unable to walk, and confined to a bed in a hospice or care home, they lose the ability to speak, hear, use their limbs, swallow, and even breathe. The median survival time from ALS diagnosis is 39 months. The daily experience and life of those who have these diseases, and the people around them, is a far cry from videos of people smiling with ice on their heads and a wet t-shirt. It is a cruel yet inescapable fact that the challenge involves completing an action which is physically impossible for many with the disease: raising a bucket over your head and tipping it over yourself.

I am not accusing anyone who has participated in the challenge of bad intentions, and I am sure that they too care about raising awareness and money to fight against it. But this is the precise problem: while the people who participate have mainly done so for good reasons (and with good effects), the overall phenomenon is incredibly trivialising. Because we have now reached an era previously thought impossible – an era where a deadly, horrific disease that leaves very little hope of survival for those it afflicts is portrayed in social media merely as something that can be used for likes, shares and comments, screams from fans at a rap concert, and votes in South Carolinian gubernatorial elections. It is telling the world that ALS is something to be considered briefly with a modicum of solemnity after an oh-so-funny-and-original twist on the theme of throwing ice over your head, and then forgotten as just another post on your wall on Facebook. It also bears a striking similarity with the neknominate in both its form (do something, video it, and then nominate 3 friends to do it within 24 hours) and medium (predominantly social media).

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Don’t even get me started on the turf war that has erupted in the UK over which charity will be the beneficiary of British donations, pitting Macmillan Cancer Care against the Motor Neurone Disease Association. William Foxton in The Telegraph summarises it brilliantly: “When I put my money into one of their tins, I expect it to be spent on cancer research, not pushing another charity down the search engine rankings.” There are also concerns in the charities community about the Challenge crowding out other charitable donations that would otherwise have gone to equally-deserving and needy organisations.

Let’s be honest, the focus of the ice-bucket challenge has never really been on ALS. The challenge itself wasn’t even about ALS originally, it was just another viral phenomenon in the vein of neknominate. Indeed, for many people, as we have seen, it is rather a method of self-promotion for B-list celebrities and former Presidents trying to stay relevant.