Maria is the training director for Wideaware who provide disability equality training online and face-to-face. She is a qualified access adviser and has worked in the UK, US and Italy as a trainer, project manager and employment placement worker for people with learning disabilities.
Maria is severely deaf, wears hearing aids and lipreads.
With so many people believing they would be better off dead than disabled, horror-style “awareness” campaigns such as this one alienate disabled people even further from the rest of society.
While I respect that Sarah’s Story might be an accurate portrait of how the protagonist felt when the disease struck, it is only too easy to exploit that to induce pity and guilt in anyone watching the film so they are compelled to donate money to the charity.
Disabled people have enough to deal with without having another “well meaning” charity showing them as being virtually “raped” and helpless victims of their impairment.
Instead of shocking people into donating money, why not show instead how far the charity can make donations go? What is my donation going to achieve: an adapted home? An accessible workplace? A personal assistant to help and support people with the condition when it is needed?
What do people think? Am I alone in thinking that, with all due respect to Sarah’s story, disabled people are not simply helpless victims of their impairment?
I couldn’t agree more with the comments above. The video is quite unbelievable. I wonder if anybody making it stopped to think how someone with motor neurone disease, or a wheelchair user, would feel watching it.
Showing such negative models does nothing but harm. For me, seeing disability shown in a positive, but realistic light, helps me enormously in having a positive attitude towards my disability and illness.
If society starts to break down the barriers that disabled people face then it is possible to participate fully in society. The disability discrimination act provides the tools but actually using it to bring about change is not easy. Perhaps if the same attitude towards the DDA as exists for health and safety legislation came about, and organisations were fined bucket loads of money for transgressing the guidelines, real change would happen!
I did some Disability Equality Training with a large charity which does street collection once and challanged them on negitive portrail of disabled people.
They still somehow manage to justify it. So there is work to be done –
tess mc manus 7 December 09
Mari, we go back a long way and I have huge respect for all you have done. When you speak I listen carefully. Especially about disability.
So I want to step forward and admit here that I am one of those who think that “I’d be better off dead than with a severe disability”. I’m ready to get any bad comments from the people who read you here, but do help me understand why I’m wrong in thinking this way.
Thank you for your answer(s).
silvia 7 December 09
Hi Silvia,
it’s fantastic to see your message and you should not expect any ‘bad’ replies to your message because your concern is quite justified. Especially after seeing this video!
The problem with thinking about disability in this way is that it focuses on the impairment, on the actual physical or mental problem that someone might have. That cannot be removed but what the disability movement try to make people understand is that the vast majority of disabled people have learned to live with their impairment and there is no point in focusing on whatever is “wrong” with our bodies but it’s much more effective to focus on the barriers because these can be removed.
For example: I am severely deaf. That cannot be changed. However if people enable me to lipread when they talk to me or share information in a way that I can understand, then I am still deaf but much less disabled… do you understand?
This video is wrong because it only focuses on the ‘experience’ of the ‘sufferer’ who has just been diagnosed. While this is of course never easy, it’s important that those with this conditioned are not pitied and instead are enabled (with equipment, support, home adaptations, accessible environments) to live a fulfilling life as much as possible.
It is important that charities like the Motor Neurone Disease society understand that they have a responsibility when publishing such a powerful advert: what message are you giving to people?
Why are you focusing on what is wrong with the body, making people pity those who are disabled, when actually you should concentrate on what as an organisation they are doing to support those with this disease? And what message does this give to someone who has just being diagnosed with this? Can you imagine how devastating it would be for anyone with the disease to be portrayed like this?
Of course after watching this advert, anyone would say that they’d rather be dead than be disabled!!! Can’t blame them!
I don’t know if I have explained myself well. I do not mean to minimise the devastating impact of the disease on someone. But at the same time, my argument is that we ought to respect their dignity and do not feel that one person’s experience is actually representative of them all.
Many people that have received terrible diagnosis from a medical point of view have gone on to win medals at the Paralympics, achieve success, employment…
We are not better off dead! Even when the impairment is very serious.
What would Stephen Hawkins say watching this video? Would he also feel that he should be better off dead? What if he had made that decision years ago and the world would not have benefited from his thinking and his genius?
In the end: disability is part of life. Disability is part of the human condition. And it’s possible to live with it and also achieve very good quality of life!!!
It’s only ignorance about the possibilities and the solutions that makes people afraid of impairment and disability and videos like this certainly don’t help.
I can totally agree with everything you say.
Obviously this advert is trying to make an impact in order to raise more money, but it scares the hell out of anybody. Most of all out of the ill ones.
I can clearly see that it’s important to cancel as many obstacles as possible for disabled people. That there’s no point in stressing how many things they can’t do, just gotta work on things they can do.
It’s just that having a totally able body, being born like this, being very active, I have the tendency to think that my life would undergo such a revolution, for worse I think, and my loved ones would have to change their lives so much to care for me that… You know, it seems the easiest answer to say “I’d rather die”. For my sake and for theirs.
Of course I’m talking about impairments such as the one of the advert, not being unable to speak or losing a leg for example. As bad as these disabilities are you can still look after yourself quite easily. This is a very treacherous subject and I really don’t want to speak in any disrespectful terms, so I’d better stop!
As always thank you for the precious help in understanding things not familiar to me.
Love.
silvia 8 December 09
I think that video would be acceptable if it was just part of the message, with a second part showing what can be done to help the disabled. I am not against using shocking ‘techniques’ to get people’s attention, but it has to be a constructive kind of shock, one that also shows the more positive sides, like all the help the disabled could get that would improve their lives, if only people stopped ignoring them. People should donate because they believe the quality of life of the disabled can and should be improved, not because they saw a shocking ad that shows a terrible disability and donating some money will reduce the shock and entitle them to ignore the disability issues for the rest of the year.
vesna 8 December 09
My first impression in watching this video was, this is a clip from a horror movie. Towards the end it goes on to say “Now you know how it feels to have Motor Neurone Disease”. Sorry no I don’t know how it feels all I see is that disabled people once again are being exploited. This video actually made me sick to the stomach. No one knows how it feels except the individual person them selves. I do get fed up with organisations who think that they are helping when in fact they at times do more harm. They may mean well but I think they should Reassess the sort of messages that they send out. Their campaign would have been much better if they helped you to understand MND, including the types of MND, symptoms and the risk of developing MND.
