Raising ALS awareness without the ice bucket

The ALS Ice Bucket Challenge has taken social-media by storm, but it isn’t without controversy. I’m not questioning the benefits of awareness and the importance of supporting medical research charities, my issue is with the intentions of some of the people taking part.

 

The most important part of this challenge is to raise awareness of ALS and donations for the ALS Association, but taking part in the challenge is futile without also taking the opportunity to educate yourself, so here’s the basics.

 

Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease. The ALS Association is an organisation fighting for the treatment and cure of ALS through global research. They also provide care and support to people with the disease and their families.

 

In simple terms, ALS affects the nerve cells in the brain and spinal cord which control muscles throughout the body. As ALS progresses, the ability of the brain to initiate and control muscle movement is lost. Over time, the disease leads to complete paralysis and death. This rare disease only affects around two per 100,000 people, and as with many chronic illnesses, there is no known cause or cure for ALS.

 

 

The most recent figures have shown that the ALS Association has received over $50 million (£30 million) donations, which is a substantial increase compared to their donations over the same period last year.

 

At the time of writing there are over 1.2 million ice bucket challenge videos uploaded to Facebook alone, with even more across other social media platforms. The challenge has no doubt increased in popularity due to the celebrities and public figures who have taken part, including Jimmy Fallon, Mark Zuckerberg, Dave Grohl, and many more.

 

Yet many people are unaware of how this trend actually started. While there is some speculation about the exact origins of the Ice Bucket Challenge, it’s appeared since at least early June. These original videos were part of a charity rally, inviting others to take the challenge in aid of a charity which was significant to them. This saw a diversity of donations to different charities.

 

Some of these early participants chose the ALS Association, including those who were ALS sufferers themselves, and the ALS Foundation soon begun promoting the trend and have seen it spread across the globe.  

 

 

Unfortunately, not everyone taking part in the challenge seems to be doing it for the right reasons. The charitable intentions of the trend are often lost in favour of publicity.

 

Countless people are just seeing this as another fun social media activity, or means of self-promotion. I’ve seen far too many videos which don’t even acknowledge the challenge as part of an awareness campaign for ALS, who don’t donate or encourage others to, who just use it to be a part of something and nominate their group of friends. Even worse are those who say it’s a choice between the challenge and donating.

 

One morning while enjoying my cup of tea over BBC News, I was greeted with a video of Victoria Beckham’s Ice Bucket Challenge. Casting aside the questionable nature of this being classed as news, (let’s call it a slow news day), my disappointment came from the fact the presenters failed to provide any information on ALS or how to donate. They simply shared the video and proceeded to laugh at their other favourite celebrity videos.

 

This was a prime example of how what may have started with good intentions has become just a publicity stunt and meaningless form of entertainment, which somehow even infiltrated national news.

 

One comment that caught my attention, claimed that the intention of the challenge is to create the horrific feeling of being paralysed, so that you can temporarily experience the paralysing feeling caused by motor neurone disease. I’m not sure if this is speculation considering the origins of the challenge aren’t exactly known.

 

But let’s say it is the intention, how many people taking the challenge do you think are actually aware of it? And how can the sensation of ice tipped over your head in any way relate to that of a lifetime of degenerative paralysis taking over your body?

 

The defence that it helps people to understand, even just for a moment, is disappointing if you’re suggesting that people need to experience something themselves to have any understanding of it.

 

 

Studies show that psychologists have identified the phenomenon of moral licencing, which suggests that one good action leads to a false sense of belief that this compensates for fewer good actions in the future. This is like ‘doing something good to feel good,’ then feeling like this gives you a certain sense of entitlement.

 

People are more likely to be concerned with the outward appearance of looking and feeling good, than the actual good action itself.  

 

The Ice Bucket challenge is a perfect example of this, as it relies on a public act to demonstrate your altruism, regardless of the actual accomplishment. Some people do use their video to advocate ALS awareness, some people have made considerable donations.

 

This applies to everyone who makes a video and shares it for publicity, without actually educating themselves about ALS or making a donation to the ALS Foundation.

 

 

Every charity now faces competition for your donations and are beginning to use social media campaigns such as this to raise public awareness. Some are more successful than others, but all have the same goal in mind. Ultimately, whatever video you make or challenge you join, what these charities need are donations to fund their work.

 

What should determine your donation isn’t what the current most fun and popular challenge might be, for a charity that you probably know nothing about. It should be a meaningful decision, to support a charity that you believe deserves your donation. Otherwise, what are you really achieving?

 

It’s a true shame that those who selflessly work behind the scenes for charities and make donations without public approval never get the thanks and appreciation they deserve. Still, to everyone who has taken the ALS Ice Bucket Challenge, and took the opportunity to educate themselves, make a donation, and actively tried to create better awareness, I commend you.

 

But don’t beg for a nomination just to be a part of something. You don’t need a nomination from your friends or public permission to donate to charity and raise awareness. Don’t use the challenge as a ‘get out free’ card from making a donation. There’s no excuse for using a ‘fun’ publicity stunt for popularity without caring about making a difference.

 

If you need to pour a bucket of ice water over your head to have empathy for someone, go ahead. If you want to raise awareness, that’s great, and if you want to donate money to a good cause, even better.