Ice bucket haters should chill out

comment1We’re all terrible narcissists. Our lust for the validation of a Facebook “like” has gone so far that we have co-opted previously valuable charity campaigns in our constant search for the next trend that puts us at the centre of positive attention. It might dismay you to learn that I’m talking about the MND ice bucket challenge. In that case, you’ll be glad to know is that I’m going to spend the rest of this article telling you the above is horribly misguided.

Known as ALS in the States (amyotrophic lateral sclerosis), motor neuron disease is a neurological illness that attacks nerves in the brain and spinal cord. In the weeks since the MND ice bucket challenge began, the internet has been filled with people dumping ice-cold water over their heads. As of 29th August 2014, total donations have broken the $100m mark, sourced from 3 million donors worldwide. In the same period last year, the MND association collected $2.8m. The campaign has been an undeniable financial success, indeed it may prove to be the definitive charitable social media success of a generation. I for one very much hope that it does.

Across College, groups have taken up the challenge. Trinity’s leading neurologist, politicians and staff drenched themselves in support of the IMNDA in late August. This newspaper was a proud participant itself. However, despite the incredible projects and services that have been enabled by this influx of donations, the naysayers still circle. The familiar calls of carrion-bird journalism that seeks so desperately to find the holes in the latest trend ring out surprisingly loud across the internet. This writing may well have the challenge in its sights, but all the shots fall far wide of the target.

Slate’s Felix Salmon fires off a salvo on the efficacy of donation. He highlights the $100m invested in MND research since 1985 which has produced, in his estimations, little or no gain. In fact, the opposite is true. In April of this year, the Harvard Stem Cell Institute published encouraging findings on possible new therapeutic medication derived from patient stem-cells. Salmon also seems to ignore a glaring explanation for the lack of advancement in MND treatment, namely the lack of interest from big pharmaceuticals. Developing new drugs costs billions in R&D, but MND represents a tiny base to sell product to (around 5,600 cases are diagnosed in the US annually). The US government funds a so-called ‘orphan disease’ program to subsidize companies to develop treatments for neglected diseases like MND in recognition of this.  If MND organisations have the ability to do basic research, it may also encourage drug companies to develop MND treatments.

Moreover, Salmon’s concerns that there is no scope within the MND research community to capitalise on the influx of funding are poorly founded. Professor Orla Hardiman is Clinical Professor of Neurology in College. Along with members of her internationally renowned team of researchers working on identifying the causes of MND, she took up the challenge some weeks ago.  On the subject of the funds raised, she writes, “International consortia for MND are making great strides, and the funds generated will be put to good use within these consortia.” However, a breakthrough would have “huge ramifications for all types of neurodegeneration – including the commoner forms such as Alzheimer’s and Parkinson’s Disease.” Far from being ineffective, the money raised thus far has the potential to change the course of research into, and treatment of, a raft of diseases which inflict such terrible suffering on so many.

Opportunity cost is the next line of attack for detractors. Salmon writes about a kind of “charity cannibalism”, but it is difficult to see how this is occurring. The challenge has clearly captivated a new demographic of largely younger, more technologically savvy donors and has done astonishing well as a result. Indeed, it isn’t really clear what Salmon’s problem with the challenge specifically is. Of course there is a finite amount of money available for donation; charities operate in a capitalist framework, for good or ill, and when looking for donations they are by definition competing against other causes. Regardless, it is never good practice to cite opportunity cost as a barrier to investing resources in alleviating human suffering. Why? Because it ask us to quantify suffering itself. Is a corollary of the argument presented that the MND should abandon all palliative care provision because there are more “efficient” ways to use its resources? Charities exist across a spectrum of advocacy, and we should be grateful for all of their work. The idea that we shouldn’t attempt to alleviate the suffering of people with MND because it is inefficient should leave a repulsive taste in our mouths.

The genius of the challenge is that it ties social validation to philanthropy.

Unsatisfied with feeble attempts to question the efficacy and legitimacy of the campaign, Arielle Pardes of VICE widens her scope to target internet activism in general. She lambasts it as a farce, an exercise in “pretending we care” because it’s “trendy”. We must thank her for reminding us that “social problems continue even after you stop hash tagging about them”. In discussing the red equal campaign that swept across Facebook immediately before the Supreme Court debate in the US on the Defense of Marriage Act (DOMA), she writes, “Yes, DOMA was upended. No, it wasn’t because of your Facebook photo.” This alludes to a bizarre misunderstanding of the value of social movements within social media. Social media is an exercise in branding, in constructing a digital identity to present to a world where so many do the same. The value of being able to identify with a cause online is clearly of massive value, both to campaigners and those affected by a given issue. Imagine how encouraging it is being gay and seeing 3 million people across the world wear a badge proudly displaying that they believe in you. The social media face of charities and movements obviously  don’t claim to solve social problems, but that doesn’t mean they are without value.

Pardes then raises the problem with people’s motives for donating. She attacks the rampant “narcissism” that she sees lurking beneath the surface of the campaign. Even if Pardes is right; what the challenge represents is MND campaigners identifying a means to encourage donation (narcissism) to the tune of $100m. In the face of that kind of financial success, motives are irrelevant. However, narcissism doesn’t rule here. The genius of the challenge is that it ties social validation to philanthropy. It is great that people think giving is the coolest thing going. Long may it continue. Charities can imprint philanthropy into the social identity across the globe with just a few words of a challenge. Moreover, Pardes seems to misunderstand the value of protest and identifying with a cause in a democracy. She tells us that we had no impact on changes to gay marriage policy. Does she think that the political will to pursue policy outcomes condenses out of thin air? Political will in democracy is born of social pressure, and that pressure is ours to create. Smash against the glass walls of the state, rattle the bars and they’ll listen because they have to; cover the internet in the red equal signs and they cannot but take note.

While the ice bucket challenge is not a political campaign, it benefits massively from the awareness raised. Questions have been raised about how much the challenge really is working for MND. Pardes points out that many videos don’t mention ALS at all. I agree with Slate’s William Oremus that the challenge is not a perfect means to spread awareness. I too would much rather the 3 million people had donated after reading a five page leaflet. The problem here is that that was  never going to happen under the status quo. The campaigners have made it possible for their message and cause to reach millions, albeit imperfectly. Awareness isn’t just a buzzword that charities hide behind when campaigns don’t go well. It makes an enormous difference to people’s lives. If the challenge means that even one MND sufferer has a better life experience because strangers now have even a cursory understanding of the challenges they face, it was a resounding success. The internet sages we’re battling are keen to tell us that we should volunteer our time, or campaign for MND if we really care. Until several weeks ago no one knew what motor neuron disease was, and it is quite difficult to campaign for something you’re not aware of. Thanks to the challenge, many people now are, and more widespread campaigns are now possible.

So let the normal practices of charity get singed. Let viral campaigning have its moment in the light. Let it show off. Don’t begrudge MND organisations for identifying our narcissism as a mechanism to get donations, and exploiting it to the tune of a $100m success.  Don’t let the internet sages fool you, in an age of social branding MND campaigners have shown us that its possible to make philanthropy all the rage. Professor Hardiman called the challenge “inspired” and she’s quite right. More than that, it has been a revelation. Keep plunging under icy cold water with zeal, safe in the knowledge that you’re making thousands of lives that little bit better.