Are you a clicktivist?

The Ice Bucket Challenge - that all went pretty viral very quickly didn't it?

One minute some sports people in the US are filmed pouring buckets of ice water over themselves  Then gradually videos appeared of people in the US doing the Ice Bucket Challenge for something called ALS.

Then suddenly one day, Bill Gates is getting in on the act, and the Beckhams and then it's everywhere.

And so then I got intrigued.  What was this ALS they kept referring to?  So a quick google led me straight to the answer. ALS stands for Amyotrophic Lateral Sclerosis a form of Motor Neurone Disease.  Of course - Motor Neurone Disease, MND - I had heard of that, in the UK it is often mentioned in the same sentence as Professor Stephen Hawking.

Then these challenges were being done by friends and soon my timeline was filled with people doing the ice bucket challenge - lots of screaming and water and people being nominated to do the same within 24 hours.  Brilliant.

But were they missing the point?  I thought this was supposed to be raising awareness for an awful degenerative neuromuscular disease.  With all that water around the message was becoming really diluted because in the UK no-one even knows what ALS is.  So another big charity with a significant brand recognition started to get in on the act.  And why not?  There's no copyright on throwing a bucket of ice water over your head for charity.

But the thing is, they already had lots of money and awareness and were able to use some of this money to buy up google ads  telling people to text a donation after doing the challenge to them.  Why shouldn't they capitalise on a fabulous viral campaign?

But something just did not feel right to me, I wanted to know a bit more about why this ice bucket campaign had started and what it meant to ALS/MND charities.

There are all sorts of stories online about how and why it all started but somewhere, someone decided that they would pledge cash for taking on the challenge, and they knew someone who had ALS.  They were aware of how totally devastating this disease is and how little people know and understand, and soon the ball was rolling.

ALS/MND is a neuromuscular disease and I found out that degenerative neuromuscular diseases include Parkinsons, Huntingdons and Spinal Muscular Atrophy.  I have friends and family who have been affected by these diseases, who have died from them, who will die from the effects of them.  The research taking place into ALS/MND may potentially have an impact on all neuromuscular diseases.  Just as the group of syndromes called rasopathies, of which Costello Syndrome is one, benefits from sharing of information and research, so the same holds true in the case of neuromuscular disease.

My eldest son told me he had found out is that the reason that the ice bucket challenge is so significant is that when you are affected by ALS/MND your body shuts down and it feels like you are permanently frozen with ice in your veins - I don't know how true this is but as a metaphor for the slow, painful, creeping death of this disease it's highly relevant.

And at this point I started to get a bit fed up with people putting funny videos of themselves up without thinking about why they were doing it.  Sadly it's so easy to do isn't it?  Follow the herd on the internet without really thinking why.

There's a term - clicktivism.  Click a link, like a post, donate money, feel good, go back to looking at cute cat videos ......

Do we really think about where our money is going and how it is going to be spent?  Do we really understand what we are doing when we like a post or sign an online petition ? We click to donate but have we really internalised what it is all about?

Charities rely on donations but they also need awareness to drive those donations and without people really understanding why they do what they do are we going to build a sustainable level of awareness to really change things?

And why throw up a bucket of icy water over your head?  If you really want to make a different why not actually do something.

I love this video I was sent recently featuring a "speak it as it is" Australian news commentator

If you have resources - time, money, knowledge why not use those instead?  Next week, next month, next year, when all the fuss has blown over and we have moved onto the next viral campaign will you remember ALS/MND?  Will you understand that people with neuromuscular diseases need research and awareness?  What will you have changed in your life by pouring a bucket of ice water over your head and posting the video on facebook.

Yes, I have been nominated and, no I'm not a spoilsport but it's turned really cold here in the UK and I just don't want to pour a bucket of ice water over my head.  I have donated however because I really think there needs to be a far greater awareness of neuromuscular disease.  I have also donated to our local hospice, St Raphaels because they provide hands on end of life care for adults in our area.

It's so easy to sit back and be a clicktivist and at the end of the day the charities will benefit but are we just becoming lazy?  Isn't it about time we really thought about what we are doing and why.  Pouring a bucket of icy water over your head & sending a quick text to donate is easy, keeping it going and making a sustainable difference, that's the harder option.

Next time you are sent a link, just think - are you a clicktivist or are you going to make a difference.

Lecture over, you can go back to googling cute cat videos now.

So far over £2.5million has been raised for the Motor Neurone Disease Association in the UK through texts for the Ice Bucket Challenge.  To donate text ICED55 and the amount you wish to donate to 70070.


  1. Caryl Purdy12:03 am

    MND is such an important cause that so few people know about. "Just" approximately 5000 people live with MND in the UK, but one of the reasons this number is so low is because this disease is a death sentence, with an average life span from diagnosis of just 14 months. 5 people die from MND in the UK every single day, and for those who are living with it, quality of life is poor and ever decreasing.

    My mum was diagnosed with MND in September 2008, after suffering from problems lifting her foot that caused her to fall over. It took about 8 months for a diagnosis, by which point she was walking with a stick to help her.

    By January 2009 she had completely lost the use of her legs. Couldn't move them, couldn't weight bear, which proved incredibly difficult and caused dramatic changes to her confidence and her attitude. By late 2009 she had lost all but the most basic use of both arms. She could move her right hand a tiny bit but that was it.

    Christmas 2009 was terrible. Mum had started to loose her voice and couldn't feed herself it was around about then the phone calls stopped, as she just couldn't speak on the phone in a voice that could be understood.

    July 2010 mum choked on some food. A few days later it became apparent she had aspirated and was 999'd to hospital with me and my sister. My step dad couldn't cope with it all - none of us were ready to lose her.

    Amazingly she pulled through. Whilst in hospital they decided it was time to fit a peg feed, but in able to do that, they had to be sure mum would survive the operation. They tried her with a cpap but she just couldn't cope with it. It was then they decided to take another x-ray, and discovered mum's lungs had started to shrink. Motor neurones are responsible for the movement of everything in the body, including lung movement, not just limbs. It was at this point we were told mum didn't have long left, and that we should be looking at a few months maximum.

    As it was she made it to September 2010 before developing a urine infection which spread to her blood and killed her very quickly.

    As it is the motor neurones that are affected, those diagnosed with MND still feel pain. Being physically unable to move yet having your back in spasms of pain because of how you are sitting is an unimaginable hell. As is having an itch anywhere on your body that you can do nothing about. Similarly the brain is unaffected, meaning that those who are diagnosed are well aware of everything going on and that they are living with a death sentence hanging over them.

    Because of the complexities of the disease and the wild variety and speed through which it destroys an individuals body, it is difficult to be able to estimate how long you have got and how exactly you will deteriorate and when.

    I will freely admit that before my mother was diagnosed, I knew next to nothing about MND, other than that it was what Stephen Hawking has. But Stephen Hawking is a truly spectacular case who is still with us 50 years after diagnosis.

    So raising awareness of MND is incredibly important, as is raising funds for vital research, all of which is shared knowledge with so many other neurological diseases. My mum did all she could to help with research from the time of her diagnosis to the time of her death - something I respect greatly and will never forget.

    As for a certain other charity attempting to get in on the act, before donating to them, why not consider how much of the money raised has been spent on Google advertising, Facebook advertising, as well as advertising on other social media platforms. Makes me feel a bit sad really!

    Also for anyone moaning about not doing it because of a waste of water... A power shower uses 7 litres of water a minute, a normal shower uses 4ish. Please don't use wasting water as an excuse not to donate - if the waste of water bothers you that much, why not just shorten your shower by a minute or two to compensate?

  2. Twinsplustwo8:08 am

    Brilliant article - the whole jumping blindly on the bandwagon with REAL awareness frustrates me so much. But.. and it is a big but I guess, it's raising a LOT of money :S

  3. The US ALS charity has raised almost $100 million dollars... So in many ways who cares if the public moves on to the next big thing... It will fund research into ALS and MND for probably the next decade. And as you say the knock on for other neurodegenerative diseases will likely be great too as there is a lot of cross over between causes and probable treatments, benifiting patients in the US, UK and worldwide.

  4. hannahphotography11:22 am

    Whilst there are people doing this challenge without donating, the important thing is that it has got the message across. Not everyone is going to run a marathon, put on a pub quiz etc to raise money.

    The internet has a new 'craze' every week - some serve a purpose, some are just silly. This one has a bit of both..