Right so I have seen a few posts about the down sides of the ice bucket challenge and yes there are a few from water wastage to the charity’s morality… but here is my take and an example of the benefits and change awareness can bring.
It isn’t only about the charity making money or research. It’s also about raising awareness and the comments coming out about the charity’s money making, the morality of the pharmaceutical industry and that your money won’t help or isn’t going where you think argument, or that other atrocities deserve your attention more along with a few others totally misses that point.
Yes, it is a waste of drinking water, a scarce resource a privilege that over 8 million people don’t have access to at all but attacking the awareness raising isn’t going to help that rather I’m proud that it can also be used to highlight this cause and raise equally raise awareness of the need so many have for clean drinking water. Besides fracking is a far larger waste.
Awareness as considerably more important than the money thrown at it a charity and ALS and MND suffers deserve their conditions highlighted. In Britain thanks to the fame and popularity of Stephen Hawkings who is wonderful role model and inspiration to so many, there is a basic awareness the condition and conditions like it exist but for those that don’t have the fame and can’t afford the adaptations he has, it can often be a far cry from how we see him or how it affects them.
I can liken this to my own experience of autism. My son was diagnosed with severe autism before the MMR debate made autism headline news. Before charity’s like Autism NI, PAPA, and the National Autistic Society where in full swing the way we see them today and before the huge raising autism awareness campaigns. Its easy to look at how the awareness of autism has increased in society since then, through campaigning and ground work.
No, I don’t actually know anyone who has directly benefited financially from any of the autism charity’s but I definitely see its affects and do know many people and groups that have hugely benefit from training the charity’s provide.
The awareness raised in society locally has lead to the building of the mental health children’s hospital unit the Iveigh Centre where my son is currently a patient, being built. It has lead to many affects on carers reports and awareness within the health and medical fields of the stress a carer suffers, it has lead to our police receiving specialist training in communication and autism helping young adults with autism feel safer and more confident outside and decreased incidents of negligence or inadequate police response.
Awareness means my son can walk down a street without being stared at, made fun of or bullied, it has helped shops and business understand and work with his abilities especially communication. It has created cinema cards, radar toilet cards, buddy cards for leisure service as well as after school support clubs. It has helped raise awareness of what siblings go through and put in place young carer programmes and training.
I have seen education authorities take note and open autism units in schools, train teachers in autism strategy and talk of opening an autism school. It has helped the inclusion and understanding of autistic individuals.
I have been proud to see autism legislation coming from Stormont with the Autism Bill NI and spoke at the Green Party AGM of my experiences proud that they are supporting and highlighting their agreement and willingness to push a post school autism strategy.
It means that ignorant comments that I received when my child was a 6 year old still in nappies and an adapted buggy like “what’s wrong with him, is he retarded?” are now a thing of the past. Awareness has had a massive effect that I have watched build. It still has a long way to go yet but it’s positive light is there shining.
In the case of the ice bucket challenge it’s not about the money it’s about raising the awareness of the condition. A condition that effects human beings, and challenges us how we as individuals can help. The above is a brief description of what awareness in the last 15 years has contributed to the lives of Autistic individuals and there families. The question is what can that awareness do to help ALS and MND? Frankly, I don’t know but I do believe that have a right to it and that it isn’t too much to ask.
All this type criticism and attitude does is say the people suffering this condition aren’t worth it, reinforces a hopeless attitude in the face of the greed of companies, pharmaceuticals and charity’s alike.
Frankly, it’s hijacking the message to push it’s own anti-corporate agenda and whilst I’m the first person to speak out against that atrocity and actively campaign against it, there’s a time and a place. Let the suffers have their day, let them know you care and support them. Let the awareness be raised.
If you don’t agree with the charities morality don’t give the money, don’t donate but that is no excuse not to listen to the suffers of any condition and help raise awareness about what they go through. It is not an excuse to ignore them…
Link to my husband and my own ice bucket Challenge:
Moo-ther Earth 