Activism or Slacktivism: has the ice bucket challenge been a success?

If you’ve visited facebook anytime recently then you will no doubt have come across a video or two of friends dousing themselves in ice cold water. The ice bucket challenge is a campaign with the aim of raising awareness of, and funding for, Amyotrophic lateral sclerosis (ALS), or as it is often referred to in the U.K., Motor Neurone Disease (MND).  In the past weeks the challenge has gone viral with millions putting themselves through mild discomfort, with the hope of fulfilling these aims. The campaign, however, has not been without its critics, so I felt compelled to write this and perhaps shed light on a few misconceptions, and say why I think the ice bucket challenge has in part been a great success, but why it is also likely to be a short lived one.

John Maino performing the ice bucket challenge

ALS in brief 

Before we get to the ins and outs of the challenge lets first look at what ALS is (of course all those who have completed the challenge know this already, having read about ALS before your cold wet endeavour). ALS is a neurodegenerative disease, in which the upper and lower motor neurons are affected, resulting in muscle spasticity and atrophy.  In simple terms motor neurons deliver signals from the brain to muscle fibres, allowing us to have voluntary movement of those our limbs, and involuntary muscle contractions, such as the ones that control our breathing. In patients with ALS the motor neurons degenerate, manifesting in fatigued muscles (spasticity) progressing to muscling wasting (atrophy) which ultimately result in the loss of muscle control, and the inability to speak, eat, swallow and breath. The progression of the disease varies from person to person, but the average time from on-set of symptoms to death is around 39 months. Clearly ALS is an aggressive degenerative disease, and with no cure available, it has unimaginable consequences for the individuals, families and friends of those affected.

#IceBucketChallenge

The ice bucket challenge is a campaign with 2 main aims. Get people talking and raising awareness for ALS, and raise funds for research into a cure for the disease.

From a funding perspective the campaign seems to be working. As of 25^th August $79.4 million have been raised, compared to the $2.5 million raised in the same time period last year, this is a major achievement and is undoubtedly great news for ALS research. But the problem is that this is likely to be a one off windfall. Medical research is incredibly expensive (take the U.S national cancer institute which receives $4.9 billion dollars annually). Research organisation like the ALS association and MND association largely rely on a core of donors who give regular donations to sustain their activities. While the money raised by the ice bucket challenge is vitally important to finding a cure, we have to be realistic about what your one off $5 donation will achieve. If you feel compelled to donate to one of these (or any other organisation) on a monthly or annual basis they will certainly be very grateful!

The second aim of the campaign is to raise awareness and get people (especially politicians and key stakeholders) talking about ALS. Having a campaign that touches millions of people is great for awareness. But while many people are seemingly happy to give themselves a cold awakening and (hopefully) part with some hard earned cash, by the time they emerge from a warming shower how much do they really know about the cause they just contributed to? This is hard to judge, the reality is that unless people actively seek information on ALS they can quite easily take part without even knowing what ALS and MND stands for. So even if they donate, if defies the second aim of increasing knowledge and awareness. When you see people commenting on videos with the likes of ‘love it’  ‘awesome’ ‘hilarious’ (a few from my own timeline there) it becomes even more difficult to argue against the fact that a part of this is Slacktivism (actions in support of a political and social causes requiring little time or involvement) at its finest. 

By all means go ahead and do the ice bucket challenge, but remember what its for, and try not to join the every increasing number of slacktivists out there! You could read out one of the facts from this sheet at the start of your video, so your friends watching learn more than how composed you are under the bucket! 

Get involved for the long haul

Unfortunately ALS is not the only underfunded and under recognised disease. Many people (some of which will of course have participated in this campaign) dedicate their lives to raising awareness of neglected health issues, of which very few will ever make it to your facebook feed. These people are the true catalysts of change, driven by passion and motivation that goes well beyond what’s trending on social media. If you’re passionate about a cause then get involved and be ready for the long haul, because the change you seek is likely more than a bucket of ice-cold water away.

Henry.