How the ALS Ice Bucket Challenge Started, Why Critics are Unfair, and Why I Still Won’t Do it

For one of the best versions of the Ice Bucket Challenge check out this video by someone with ALS. After doing the Ice Bucket Challenge (and some not so sexy car washing), he describes and shows you what it is like to have ALS.

It now seems like the ALS Ice Bucket Challenge is winding down after raising $100 million for Amyotrophic Lateral Sclerosis, primarily for the ALS Association.

As Forbes note, that’s an increase of 3,500% on the same period last year and by every statistical measurement that’s a phenomenal achievement for what was previously a pretty much unknown disease, let alone an unknown charity.

In marketing terms it was a fantastic success, both in raising awareness and funding (though this was more an accident, as we’ll see in the next paragraph). So overall the staff at the charity must be pretty happy with themselves, unless they’ve read too many of the online criticisms which inevitably follow any massive public exposure.

public twerking
Better than most other ‘massive public exposure’ that goes viral…

Yet despite that, I still wouldn’t do the Ice Bucket Challenge or donate personally to ALS research. To explain why, let’s first take a look at the Ice Bucket Challenge itself, how it started, and some of the common criticisms of the ALS Ice Bucket Challenge.

The Viral Campaign Wasn’t Planned

It may come as a surprise to many people, but the ALS Ice Bucket Challenge wasn’t planned. The ALS Association didn’t start the Ice Bucket Challenge and it wasn’t promoted by them in the beginning for the purpose of raising awareness and funding for ALS.

In fact the Ice Bucket Challenge already existed in small sporting communities in the United States, with members of one golfing community in particular doing it to raise money for their various charitable causes. The ALS Association’s website notes this, saying that people impacted by ALS started to join in and nominated others in the ALS community.

Then one of the people doing the challenge in the early days (mostly in New York), was connected through Facebook with a Boston athlete diagnosed with the disease, Pete Frates. After retiring from basketball because of ALS, professional athletes in Boston who knew Pete from college did the challenge for him.

It reached the local news and continued to spread in probably the best version of an epidemic. The rest is, well not history, so present?

Wasting Water?

It was also an entirely American thing at the time. The target audience was never people across the entire world, executives weren’t sitting in a boardroom planning the event and how best to raise awareness/fundraise/make the general public look like idiots for a good cause. For this reason, those criticising it for wasting water aren’t technically wrong, but their mild annoyance is misplaced. Of course it wastes water, sort of. But it was never designed as a global campaign. It was in the context of a wealthy community and spread from there. And for those who jumped on to the criticism bandwagon without knowing much about it, if they really cared about saving water then this is small fry. They should be fighting against Nestle and Coca Cola (among other multinationals) trying to privatise water, saying ‘water is not a human right’, and buying water in villages in developing countries and forcing villagers to buy their water back in bottles in order to drink. For more individual action they could make a bigger impact if they took public transport, bought local goods, and became vegetarian, rather than writing a Tweet, a Facebook status or an article online blasting a charity.

Likewise take many other charity fundraisers and they will use more water. Aside from the amount of water used in a typical flight to another country as a volunteer, how much extra water would someone use while training for and running a marathon? Far more than a bucket.

Then you have articles from Time from someone who “figured out why they hate the Ice Bucket Challenge“. The writer here basically says ” I shudder to think about what we look like dumping freezing cold water over our heads while so much of the world at this time is plunged into acute suffering over which they have no control.” Consider how America looks when it’s planking, owling, taking pictures of food, imagine how America looks when it provides military equipment to Israel to bomb Gaza (one of the places we must symbolically imagine the suffering for). Imagine how ridiculous America looks to the world as it faces an obesity epidemic while so many starve… America looks ridiculous for a lot of reasons, dumping a bucket of water on their heads for charity is the least of them. And at least this has the potential to change a portion of that suffering.

Only 27% of Funding Goes to Researching the Cure?

Once people found out more about the ALS Association they found the public records and the convenient picture breaking down where the charity allocated its 2014 budget.

There people saw 27% goes to researching the cure and spread that number. However they didn’t provide the context. If you only hear 27% of the money goes to researching the cure then of course it looks an aALS Foundation budgetbsolute waste, money-grabbing executives at big charities ripping off kind souls trying to help the less fortunate (or so the narrative goes). But when you understand a further 19% goes to patient care, and that 32% goes to public and professional education (i.e. raising awareness and training doctors), then 78% funds go to patient care, short-term and long-term. It’s actually a good percentage for a big charity and ALSA is rated highly for financial accountability and transparency.

The biggest portion spent, on public and professional education, is especially important for a relatively unknown disease. People simply not knowing about a disease is a massive hurdle not just to researching the cure, but if doctors can’t identify it properly many people could go undiagnosed.

Most importantly, that was the 2014 budget. The 2014 budget was built from past funding and reflects those goals. That means everyone who has donated in 2014 is donating to a pot for 2015, which will be allocated at the start of the year. It’s a point missed by almost everyone who criticised the spending.

The ALS Association typically has a budget of $25 million a year, and so the $100 million+ from this campaign is in effect now four years of a budget coming at once. It’s levelled everything up. The amount of money it would have taken to otherwise achieve the awareness the Ice Bucket Challenge has is astronomical. And with that portion done so successfully, the percentage allocated for direct patient care and researching the cure should hopefully rise substantially.

Does the Ice Bucket Challenge Show a “Selfie-ish” Culture?

And this is why one of the particular criticisms really makes no sense. In one particularly viral response, Rappler published one person’s rant about the Ice Bucket Challenge, criticising the culture beyond it, of people looking for attention before giving to a needy cause. To this writer it was all about the individual, all about a “selfie-ish culture”. There may be some truth in that, but the object of attack was completely wrong. The campaign itself should not be targeted as it utilised something bad and tried to make something good out of it. By criticising the ALS Association for their campaign because it apparently uses the selfish culture of our society is like saying we shouldn’t use vaccines because it uses a portion of a disease. Sometimes bad things can be used for good. But if the writer is correct that our culture is so self-interested (and there may indeed be some merit to some of the general ramblings), that’s no reason to not donate to a charitable cause. The very reason that so many charities exist is because there is so much need. Society may be selfish, but not helping out and criticising a campaign which is trying to make a difference is even worse.

Why not take it a step further and plank for a cause? Why not owl for a cause? Or something that at times does annoy me, is people posting pictures of their decadent dinners. There are going to be internet crazes because there are going to be bored young people with access to the internet. People will plank and owl and take pictures of their dinner anyway, regardless of how many people are starving in the world. So make use of that; how I’d love to see a different charity get awareness every time there’s a new craze. How about you take a video of someone kicking you in the balls and nominate 3 people to go through the same? Everyone must donate $100 to the Fairplay for All Foundation. Or pick something else if you want, less painful.

Instead, that Rappler writer comes across as an angry, old man complaining about the problem with kids these days. He actually uses that phrase: “I am worried that kids these days believe that in exchange for their valuable and most sought-after attention, they feel that they also deserve some attention first.” But what should you expect from the winner of The Apprentice Asia, Jonathan Yabut? In an article talking about how selfish our culture is, he writes about what he thinks, using ” I ” 43 times in a first-person narrative. Likewise is the irony totally lost on Jonathan (and Rappler) that in an article analysing a charity’s fundraising campaign, criticising society’s selfish culture, and bemoaning glamour, celebrity, and status, a news group has chosen to publish the opinion of a reality TV star?

Still, Why Not Donate?

So most of the criticisms against the campaign are woefully inadequate then. Even if the ALS Association was responsible for the Ice Bucket Challenge itself, rather than being  happy accident for them, it wouldn’t deserve the criticism it received for it.

So why won’t I do it still?

The answer is more about context. It’s not right for me but it may be right for you. I don’t spend time taking pictures of myself planking, owling, or of my food, and posting them on all my social media. For other people they enjoy this social interaction. I used to do lots of pranks at Uni, for example. I still smile remembering one time I managed to grab a friend’s towel and clothes from him while he was in the shower. So he had to run through the halls naked and dripping wet, only to realise his door was locked as his keys were in the pants I took and I’d locked the door. Or when my friend came back from a night out really drunk, to find that his room was literally empty… his bed, his desk, everything. If I could, I would have uploaded videos to Youtube in seconds.

Now I live in Payatas and work in community development here. At the Fairplay for All Foundation we run a drop-in centre, education sponsorship, an urban farm, and, what we’re mostly known for, Payatas Football Club. It’s all part of holistic community development to permanently break the cycle of poverty. We work with some of the poorest children in the country, a lot of the kids are missing half their teeth because they’ve rotted off through eating food we threw away in the trash and junk food. They’re kids who have to work climbing up and down garbage trucks as they drive past to collect the trash we’ve thrown away, starting work when the rest of us are going to sleep.

The target audience for the Ice Bucket Challenge is the wealthy citizens of the world who have spare time and can afford a small donation while doing something fun. Back at Uni, I probably would have found it funny to make people involuntarily join the Ice Bucket Challenge by throwing the ice water out of the window and donating to charity every time I soaked someone.

So ALS is worthy of attention. ALS is a horrible disease, no question about that. Though the question of context goes to priorities. When you have no priorities except for studying for your degree or starting out in the workforce, a time of life which I hope everyone gets to experience, joining in viral campaigns like that makes complete sense, it’s fun.

But for anyone who no longer has those luxuries, or never had them in the first place, then priorities make a huge difference.

Looking at it Objectively

That’s where you need to start looking at things more objectively. There are an estimated 30,000 people with ALS and that’s not insignificant. But that is basically the number of children under the age of 5 who die every day because they lack the food, shelter, basic medicines and, yes, water, to survive (You et al, 2010). Every day. The equivalent of 9/11 ten times in one day, the equivalent of a stadium full of people just disappearing.

Raising $100 million over 30,000 people works out to US$3,333 per person. In the USA that’s a relatively small investment. In the Philippines, it’s higher than the GDP per capita (as in most countries). There’s no doubt for that kind of money you could save far more than 30,000 of the 600,000+ who die of Malaria every year, or the 1.6 million who die of AIDS.

And that’s why we need to be smart about charity (and so many other things). One of the charts shared around showed the disconnect between where people donated and what actually kills us.

donate versus kill

Unfortunately when dealing with charities we have to make a choice. There is limited funding and plenty of worthy causes. So you have too look at it objectively.

And this is why I wouldn’t give to the ALS Association. But that’s for me and my context. For other people, they can give a little in this campaign and focus on other charities afterwards. Others may campaign exclusively for ALS (but will need to understand the importance of other NGOs). It’s all about personal situation.

So that’s not to say giving to the ALS Association is not worthwhile. Perhaps the worst part of the articles online bashing the ALS Association is that they’re talking as if we’re living in an ideal world where charities can raise money in the most ideologically perfect of ways.

In an ideal world, ALS would have been cured already. In an ideal world Malaria, Cancer, and AIDS would too. Instead they’re all diseases we want to cure.

If pharmaceutical companies had an incentive besides profit, for example, charities wouldn’t need to exist to fill the holes they left in society. If governments were more responsible and cared for their citizens, they wouldn’t be subsidising junk food, deregulating the drugs industry (environmental/financial regulations too), and increasing the costs of healthcare for when people inevitably get sick. The free market has brought many things, some of them good, but when something is not profitable it ceases to exist: and in this system that typically goes for people too.

The statistics so far have all been about the United States. But of course there’s a much better way they can do healthcare. For the wealthiest nation in the world to spend more money on war than treating its own citizens is disgraceful. If all the disease-based charities in the US collectively lobbied Congress for universal healthcare and a Department of Health with a relevant budget for research, co-ordinating to rally the public, perhaps this issue would be solved in the long-run as cures could be found and transplanted to other regions. But that’s not likely.

That’s because businesses and government profit from the system. When we talk about the USA and UK (until recently) giving foreign aid to other countries, that was typically tied up with a myriad of conditions. On one occasion, for example, when the USA gave money to African countries for AIDS treatment, they were at the same time banning those countries from developing their own drugs (in the WTO) and instead making those countries buy American brand drugs at four times the cost. Remember that the aid is a loan which the other country is expected to pay back with interest. It’s like going to a car dealership for a cheap second hand car and having the owner legally force you to buy a Ferrari and then pay for it, plus interest, over the next few decades.

For a more amusing way of looking at healthcare, outside the US, check out this comic strip about Breaking Bad.

walter white cancer britainAs imperfect as the NHS is, it does mean families aren’t nearly so frequently torn apart by medical bills. The selfish society, built on business and money for its own sake, has largely created these problems and left the hole that NGOs are trying to fix.

So yes ALS deserves attention, though I do think other causes deserve even more. In an ideal world we would adequately fund all the right charities, or even better prevent a need for charities in the first place. Given the world economy, it’s actually relatively easy to budget that change, though given my own context it’s not right for me to give to ALS.

The problem with the whole thing is not the Ice Bucket Challenge or the ALS Association itself, then, the problem is a systematic failure of governments and corporations to actually care about people.

And if we all started doing that… wouldn’t that be something.

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