The success of the ALS ice bucket challenge (or the MND ice bucket challenge if you are in the UK) has sparked a lot of interest regarding the role of social media in raising awareness and funds for charities. On the monetary front, it has been an unconditional success, as it has raised millions of dollars and pounds for the respective organisations. It has also led to a lot of debate regarding charities in general and has created off-shoots such as the rice bucket challenge to feed the homeless in South Asia and multiple clean water initiatives. What it has not been able to do, however, is initiate a lasting culture of change and support that would really help charitable causes. Nor has it been able to create a long-term commitment to tackling the problem it championed, instead amassing a gigantic fund in one go that, in reality, might not make much difference.
First of all, it needs to be noted that the majority of people who donated with the challenge are those who are likely to donate to charities anyway. They might have decided to prioritise ALS (or any of its off-shoots) due to its current popularity, or they might have made an additional donation to it alongside causes they normally support anyway, but the ones who took time to spend money on the campaign are those who would not have needed convincing in the first place. A lot of other people simply wanted to dare their friends into drenching themselves and took advantage of that trend, evidenced by the large number of videos and accompanying texts that made no mention of the charitable nature of the campaign at all and instead only focused on the participant looking tough while getting doused in freezing water.
With regards to information, the challenge did raise awareness about the disease itself by talking about its causes and effects, but it did not place it within the larger context of rare and orphan diseases. This is, of course, no fault of the charities – their job is to focus on their own work – but there has been virtually no discussion about the actual prevalence and general pharmaceutical funding for the disease. This is not restricted to the ice bucket challenge either; the recent social media campaigns for types of cancer did not try and place the condition in any context. With cancer, that does not matter as much because it is already an issue discussed regularly in the mainstream.
With orphan diseases, that is not the case and it really needs to be. This is particularly problematic because, while the challenge has raised millions, very few participants actually know how much their contributions helped in practical terms. Not this should act as a means of discouraging such donations, but we need to be aware of whether this sort of spontaneous challenge is enough on its own. Common sense would suggest it is not, but common sense usually goes out the window when we are busy congratulating ourselves on a job well done.
Challenge-specific issues aside, the one key failure of mass social media campaigns is its short-term legacy. The ice bucket challenge has been a longer trend than other similar campaigns, which is excellent to see, but it is already winding down. We have donated; therefore, we have done our part. But the work of the charities are not over and the disease is far from being eradicated. Spontaneous campaigns need to be complemented with larger awareness campaigns that encourage long-term commitments by participants. Groups like Marie Curie Cancer Care and the Trevor Project, while similarly requiring donations, tend to prioritise recruiting volunteers because working directly with the organisations provides a deeper understanding of their situation and, therefore, is more likely to make us continue supporting them.
This lack of understanding is reflected by how very few people did not appreciate the difference between the US-based ALS Association and the UK-based MND Association, often donating to the one that was across the pond for them when they wanted to support the local initiative. It did not help that allegations of misusing funds were levelled at the US charity and that they tried to monopolise the ice bucket challenge so that other charities, like Macmillan Cancer Support, could not use it to raise their own funds. The latter attempt was dropped, thankfully. The former concern, meanwhile, was created by misinformation; the US charity did use a large portion of its funds to pay its employees but no CEO bonuses were cashed in using donations.
Unfortunately, when this sort of misinformation plagues such a rapid campaign, it can lead to a sudden drop in support when there is no larger understanding to help counter it. The fact that charities work differently in the US than they do in the UK also complicated matters further because UK donors thought that the MND Association worked in the same way and withheld their support for a while. Further obstacles, such as religious opposition based on how MND research involves stem-cell techniques or environmentalist concerns regarding animal testing, means that the necessarily short-term nature of such campaigns are eventually detrimental.
Charities require substantial support. Coming from a country where most good comes from NGO’s, but where a lot of these NGO’s then feel like they can do whatever they want as a result of that importance, I can appreciate the tricky balance that needs to be struck when handling such important issues. From experience, I can say that working with a group is the best way to assuage any concerns you might have regarding a particular group. Reading a few different Google results (from reliable sources of course) is a good alternative. At the end of the day, however, there needs to be a deeper understanding of how things work, even if it might not give us the chance to brag about helping out.
This post is by no means an attempt to prevent people from donating to the ice bucket challenge. Nor is it a ringing endorsement of the campaign.* All I ask is that whoever reads this understands that charitable organisations and their concerns are complex, and they take the time to find out about a cause they want to support.
*My humble suggestion is to try and support a local initiative. In my home country of Bangladesh, concerns like homelessness, clean drinking water for slums, labour rights, LGBTQ+ rights, healthcare and education, and food distribution, are just some concerns that regularly get overlooked, and it might be more beneficial to try and support a group tackling those instead of channelling finite resources into an already-burgeoning campaign.