The ice-bucket challenge – Is there a right and wrong way to raise awareness?

Please note: this is not a blog addressing any issues related to the charity itself.  I understand people`s concerns over testing on animals, and the challenge being done inappropriately, but that is not relevant to the subject of this blog.

If you`ve been on-line at all over the last week or so there is no way that you can`t be aware of the ALS ice-bucket challenge.  This was created to raise awareness for Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,”  Thousands of people from across the world have filmed themselves pouring buckets of ice over their heads – people such as George Bush, Stephen King, and Cristiano Ronaldo, along with a host of other celebrities.  According to the official statistics it`s raised an incredible amount of money, but several people have complained about it.  These people say that the actual message is being lost, and that pouring water over yourself is a silly way to raise awareness.  From my point of view I simply looked at what people who suffer from the condition have to say – and everything I read by people with this condition, and their families, was extremely positive.  The idea that you could get hundreds of celebrities from all over the world to endorse your charity, would have been impossible without the use of the internet.  Of course some people have simply picked this up as a thing to do without actually thinking about the message behind it, but they still mention ALS in their videos – the message is still getting out there, whether people realise they are spreading it or not.  The use of social media to get so many people involved really was a stroke of genius from the people who created it.  But it leads to the question, is this the right way, or the wrong way to raise awareness?

If the charity raises money, and they get endorsed by hundreds of celebrities – all of whom are probably followed by millions of people on-line – how can this be a bad thing? The ice-bucket challenge is enough of a challenge that people will feel they have accomplished something, but easy enough that anybody can participate.  It`s fun, and after you`ve done it, why would you not want to nominate three other people?  If you had to do it, why shouldn’t they?  It also plays on a level of narcissism in society – some people love to be seen doing stuff for charity, much more than they actually enjoy doing things for charity.  The ice-bucket challenge lets you not only do a good act, but put it out there for the world to see.

Also, it works.  I had no real understanding or knowledge of this condition until I started seeing the videos on-line, then I googled it, found out about it, and read a lot written by people who live with it.  Now there is no way that I am the only person who has done this.  In reality thousands of people are probably aware of ALS, who weren’t before.  It is not done in a way that would inspire pity instead of respect.  It is simply saying, `we`re a charity, we need money, please donate`.  Things on the internet often go viral; whether it`s a picture, a saying, a certain activity.  They are huge – as in millions and millions of people seeing, and participating in them – in a way that things could never have been this big before.  For the most part these things are funny, and have no actual meaning or relevance behind them.  The fact that something that actually helps to change people’s lives for the better has taken off in this way, is very positive.  And even though I am usually rather cynical about things like this, I have actually found myself getting annoyed at people who criticise it.  Obviously if you were already fully aware of ASL before, and it has already affected your life in some way, this may seem like a silly way to raise awareness.  But as I said before, the voices of the people who actually live with this condition are what matter the most, and they – to the best of my knowledge – are firmly behind this.  I have read several interviews with people who either have ASL, or have a family member with this condition.  They all say that it is an under-funded, virtually unknown disease that has a devastating and terrifying effect on people`s lives.  A few people giving quietly is good, but it won`t have anywhere near the impact that a challenge like this has had.  The fact is, people who are going through this disease endorse this challenge, and in reality, their opinions are the only ones that truly matter.  I can`t say that my knowledge of this condition is perfect now, or that I have checked the charity out fully, and there may well be issues I discover as I look in to it in more detail.  What I can tell you though, is that virtually everybody on-line is talking about ALS – people who I never thought would do something such as tipping a bucket of ice cold water over their head, have been doing so happily – and these are not the kind of people who would do something for attention, or simply to jump on a bandwagon.  These people, for the most part, have donated money as well, and overall I can`t help but view something like this as a positive.  It seems to me like a very clever way to utilise the power of the internet.

The TV, radio, and newspapers are old-fashioned ways to get through to people. If you want to advertise, or raise money and awareness now, you use the internet.  A lot of people do all their TV watching, a large chuck of socialising, and spend much of their free time on the internet.  People can`t avoid something that goes viral – everybody sees it. Also challenges such as this seem to be much easier for people to deal with than an advert which shows the harsh realities of real life.  Things such as the ice-bucket challenge won’t cure all diseases, or solve all the world’s problems, but they will undoubtedly raise a lot of money.  People of all ages, from all of the countries in the world, will see these things. People don’t feel as if they are being put under pressure to donate money – they do it because they want to, because everybody around them is doing it.

 By all accounts, the level of money raised in only two weeks in unprecedented.  I am sure that in the wake of this many charities will launch challenges of their own, and in my view, using social media and the internet to raise awareness and money, is the future.  Is this particular idea perfect?  No it isn’t.  But can it lay the framework for charities reaching wider audiences, and raising more money in the long run?  Yes, undoubtedly it can.  And how can that be anything but a positive development?

For more information about ALS go to



If you need any more help or advice about Asperger`s/Autism or simply want to talk about it check out our free help and advice service ASK-PERGERS? On Twitter Facebook

And have a look at our books (at the time published under pseudonyms, but we did write them trust us on that!)


One thought on “The ice-bucket challenge – Is there a right and wrong way to raise awareness?

  1. I posted on Facebook about this same topic today, I had heard of ALS before this summer, but didn’t really know what it was or even particularly care about it. Because of the Ice Bucket challenge, I learned about it and felt good about donating to the cause. I think that is a good thing!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s