KONY 2012, No Make-Up selfies, The Ice Bucket Challenge. Viral campaigning is gathering speed, and in my opinion, is here to stay whether we like it or not. So, can we make it better?
The Ice Bucket Challenge for ALS is the most recent of these viral campaigns and is causing a lot of debate. Despite its shortcomings (which I will discuss), I think its a great campaign. It has really gotten people talking, not only about ALS but also about the water crisis, animal testing, fundraising in general, and a whole host of other diseases. And while I am pretty tired of seeing a million new videos posted every time I check my phone, I am happy that these are the things we are talking about on social media at the moment and not trashy celebrity gossip. I don’t care who Taylor Swift is dating or which sports star is the latest in a cheating scandal but I DO care about fundraising, medical research and anything a regular Joe can do to make a positive difference in the world.
Some ALS Facts
- It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually.
- Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
- Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.
- About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
- ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
- The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.
- There can be significant costs for medical care, equipment and home health caregiving later in the disease. It is important to be knowledgeable about your health plan coverage and other programs for which your may be eligible, including SSA, Medicare, Medical and Veteran Affairs benefits.
The Ice Bucket Challenge
The Ice Bucket Challenge began in June in the US and the original rules are; if you are nominated you have 24 hours to dump a bucket of iced-water over your head and donate $10 to ALS research., you then get to nominate three more people to take part. The video is shared on social media (usually Facebook). If you choose not to do the ice bucket, you must donate $100 to ALS research. The rules have varied from country to country. Some people are donating to a charity of their choice rather than ALS.
TONS of celebrities have jumped on board and played a key role in making this such a huge campaign. And there have been so many funny and creative ones keeping the momentum going.
Having worked as a fundraiser in a few different environments, my experience is that the general public is living in a state of willful ignorance( some may call it bliss…..). Our media loves to use scare tactics, and shock value and we have become exhausted and apathetic to a lot of it. In saying that, when confronted with a worthy cause, people’s innate goodness becomes apparent and most have a genuine desire to do good. I worked for an NGO in Brisbane talking to people about donating all day long for months and 80% of people were interested, heart-broken and genuinely moved by the horrible facts. And most of them agreed that we should all be doing a little bit more.
Facebook, and social networks in general are built around narcissism and self promotion. Look at how good I look, I’m on an awesome vacation, here is my cute baby or my cute dog, here are 1000 examples of my cooking skills, here are my gorgeous friends, my nights out, my house etc etc (I am guilty of most of these for sure). Campaigns like this use that to shed light on their cause, and it’s effective. Social networking is a powerful tool, and I see no harm in using it for good every once in a while instead of the usual stream of cat videos and Buzzfeed quizzes (I’m also guilty of these). I know that some people think we should all donate quietly and not have any glory but, why not look at it from a different angle. Its not about “glory” its about spreading the message! the more people who watch, the more people who donate. Then its not only your $10 but also the people who you have inspired or motivated to do the same. If you don’t tell them, they will just spend their time scrolling through mindless crap all day. I was one of the first to criticize The “no make-up selfie” but then learned that it raised millions for breast cancer awareness. I am well aware that not everyone who posts a video or selfie is putting their money where their mouth is, but enough to raise millions that wouldn’t have otherwise been raised, do.
There are so many ways in which we get caught up in our own lives and the stresses of the daily grind that it is easy not to think of the suffering of others. And we need to be reminded. What better way to do that than our beloved cell phones and tablets? The element of fun makes it more appealing AND we don’t have to endure the “emotional porn”. (I will be writing another post about that very soon so watch this space…..). I think the days of “oh look at this poor unfortunate soul” have been worn out.
However, there is no such thing as a perfect fundraiser. In the case of the Ice Bucket Challenge, the main issues I have seen people have are concerns about wasting water, and the fact that ALS research still uses animal testing.
First of all, to the people who point out these negatives right away and totally dismiss the campaign as a result, I would like to ask you a few questions. Do you know how many other medical research projects use animal testing? Do you use make-up or cleaning products that have been tested on animals? Do you eat meat that comes from factory farms? Do you wear leather? Or, are you just looking for a reason to hate this style of fundraising?
Do you have a pool? Water your plants? Have long showers? Or again, are you just looking for a way to judge this challenge?
I am not dismissing these concerns at all, they are very valid. I have just seen a lot of comments that look more like “haters” than legitimate concern or constructive criticism.
On the flipside, I have also seen people use sea water, or pool water in place of clean drinking water and I have seen one or two people donate to water sanitation programmes in addition to their ALS donation. See? Constructive criticism is a good thing and helps improvement!
As for animal testing, that is a more complicated issue and one that I do not know enough to comment much on. I think animal testing is awful and disgusting and I regularly Google products to see if they are testing on animals so that I can make informed decisions about my purchases. I encourage everyone to do the same. I really hope that we can make more headway in that area and I’m glad that it has been pointed out. As far as I know, other research projects have moved on to more sophisticated and cruelty-free testing methods, and here’s hoping with all that extra money ALS research will be able to follow suit.
Every cause/charity gets its 15mins. It’s always something different being highlighted in the media. Some more often than others, and that is the nature of the beast. Constructive criticism is healthy and helps improve fundraising campaigns but I think that it is a little bit easy to focus on the negatives rather than the positives. This challenge is fantastic for ALS and it’s not really doing any damage to other causes. Maybe some people will choose ALS this year for their donation budget who would have supported something different last year. That already happens. Unfortunately, all causes are constantly competing for funds.