This is the question that anyone involved with the ALS Ice Bucket Challenge should be asking themselves at the moment.
Is it ethical or is it unethical? Is it a waste of water, or a necessary stunt in highlighting an absolutely atrocious disease? Is it an exercise in vanity that detracts from the seriousness of the issue, or are the means through which support is procured irrelevant as long as progress is being made? I have read several defences of the ubiquitous ALS ice bucket challenge, just as I have read both scathing and veiled critiques of it from sources as diverse as Hollywood stars like Matt Damon to Daily Telegraph journalist Willard Foxton. I have also done the challenge myself and donated to the charity. Pretty much all of my friends and family, ranging from 20-something showboating jocks to respectable, higher-educated retirees have gotten in on the act. I can’t help but feel that the moral outrage and posturing that has become the bedfellow of the ‘challenge’ is really missing the point.
The loudest and most scornful critiques of the ALS challenge seem to fall into two categories. The first of these is that the challenge has become little more than a glorified tool for self promotion, a contrivance manipulated by public figures and celebrities wishing to cement or challenge perceptions of them by proving that they are ‘game’ by jumping on the social media rollercoaster. This has filtered down to ‘normal’ people who, rather than having any genuine empathy for sufferers or any desire to understand more about the condition, have indulged in peacocking displays of one-upmanship that recall the digital swaggering of the Nek-Nominate fad. They – or so the argument would go – don’t care about anything except for themselves and their own Warholian moment in the sun. But does this even matter?
The genius of the Ice Bucket Challenge is that as well as appealing to the morally and socially conscious, the great and the good amongst us with genuine philanthropic interests in the wellbeing of the less fortunate, it also appeals to the vacuous, YOLO-tattooed social media junkies (dubbed hashtag activists or slacktivists) who would pawn their own kidneys (as well as those of their grandmothers) for a set of 50 comments on Facebook including the words ‘legend’ or ‘sick’. The charity managed to find a platform that levelled the playing field; this is a challenge that has transcended racial, generational and gender barriers and sparked interest from an atypically eclectic demographic. Does anybody think for one second that the charity truly cares whether the people who donated did so with sincerity? Does anybody believe that the charity are worried that a percentage of the people who have helped to heighten awareness of their efforts were possibly entirely ignorant of what they were doing or why they were doing it? After a donation increase of $14,000,000 are the creators of the challenge losing sleep over the fact that many of the people who filmed the challenge may not have donated? I sincerely doubt it.
Compared to cancer, heart-disease, even diarrhoea, ALS is little more than a footnote when it comes to the statistical likelihood of it being the cause of your (or anybody else’s) death. Therefore, the ALS foundation must be thrilled with the unprecedented level of funding that they have received for what is essentially an incredibly rare disease. Research into HIV/AIDS, cancer and respiratory disorders linked to heart-disease are traditionally well-funded, as well as being highly visible, and also enjoy a heightened level of interest from the pharmaceutical industry who know that it is far more financially viable to produce research, drugs and vaccines for containing or curing diseases that are statistically more widespread than it is for innovating on exceptional biological abnormalities. For a disease as unprofitable (at least from the point of view of the pharmaceutical companies) as ALS, to have raised as much money as they have is a minor miracle. Despite being a rare condition, ALS is still an utterly horrific disease that heralds death within five years of detection for the majority of its victims; it is a diagnosis almost utterly devoid of hope. After all of the debate, we can only hope ourselves that the money is able to find some shreds of potential and possibility for those desperately unfortunate few, and their families, and perhaps fear of ALS will subside as it is confined to the list of fully curable human ailments.
Nobody deserves to live without hope, and the wave that ALS is riding at the moment will subside eventually as people return their attentions to the charities that they regularly donate to (if they do indeed donate to any at all). This is why I have to disagree with the vice president of ‘Giving What We Can’ – William MacAskill – who attacked the ALS foundation, claiming that is was ‘cannibalising’ the potential contributions to other ‘more worthy’ charities. That is the nature of a fad; it will inevitably end, and when it does, people will return to the things that they have always done before. Consequently, I don’t think that ALS sufferers should be begrudged their unquestionably ephemeral moment, and I also don’t think that every man, woman, idiot, genius, know-all, youth, pensioner or ignoramus who has done the ice bucket challenge should be pilloried for helping to give it to them.
In addition to this, people like William MasAskill seem to have missed the point that the controversy surrounding the ALS campaign has inadvertently given free, and in many cases high-profile, publicity to a host of other causes that are allegedly ‘worthier’. Whether it has been highlighting the need for clean drinking water in developing nations, or the continued devastation of HIV in the Horn of Africa, or the need for on-going research into the more virulent forms of cancer, each of these causes has been inadvertently, and unexpectedly, given a soapbox to shout from, pushing themselves back into public consciousness. This is certainly an unintentional by-product of the ALS campaign, but drawing worthy causes into the limelight, regardless of the level of cognisance involved in making it happen, can only be considered positive. The campaign has also opened dialogue about the nature of charity and about how funding is distributed once it is established, again, should this not be considered a success rather than a stick to beat the challenge with?
The other major category of criticism regards the mechanics of the challenge itself being unethical. Water charities have lambasted the challenge’s creators for what they perceive as a reckless and irresponsible misuse of water that is an insult to those who are living through droughts or without the luxury of clean drinking water. The high visibility of the challenge may mean that they have a point here, however this argument reminds me of the put-down that my mother would regularly throw at my sister and I if we didn’t finish our entire dinner when we were kids ‘there are people in the world who are starving you ungrateful sods’. This was said as if the food on our plates could have been Fed-exed to someone hungry on the other side of the world, as if that was a long-term cure to the problem. Likewise, those who are doing the challenge are not going to be able to fax a bucket of water to the nearest drought-suffering nation, nor are they being wasteful if the water is being used in a place where there is a self-sustaining hydro cycle. What the charities that revolve around Water Aid should be doing is using the gimmick of the challenge to remind us that donations to their causes would help to arrest the plight of afflicted nations, rather than pinning individualised guilt on some idiot from Doncaster. Their causes are extremely worthy ones and again, as mentioned above, I hope their charities benefit from entering into the debate over the challenge.
Ultimately, the Ice Bucket Challenge has brought the issue of how best to deal with suffering to the forefront of people’s minds, and in many cases it has pushed people who never would have spared a thought for this to think about it, or at least become aware of it. The utilisation of social media, via a clever, interactive and, let’s face it, pretty fun and predominantly harmless challenge is a masterstroke that other causes should be looking to emulate, rather than criticise. In an ideal world every citizen would be outward looking and caring enough to want to give as much of their personal wealth as they could to helping others, but in a world that just isn’t like that anywhere near often enough, perhaps a possibly well-meaning $14,000,000 dose of hope isn’t so bad after all.