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From: Leys Geddes
Date: 21 Oct 2008
Time: 03:27:27 -0500
Remote Name: 86.163.200.31
Thanks, Shirley, for what you say - and I agree, it is a very difficult problem. PWS tend not to speak out, so awareness is low and, as a result, virtually no charitable money is donated, so we do not have the financial muscle we would need to change the situation. In the UK, for example, charities asking for money for homeless donkeys get far, far, far more money than us! Meanwhile, most non-PWS still think stuttering is a sign of weakness or nervousness, so they think it's kind of our own fault anyway and we could cure it quite easily if we simply pulled ourselves together! So, because we do not have enough money to advertise, like most other charities (non-profits to you) we need to concentrate on helping the media to understand the difficulty and to help us change things. So I think we need to look out for examples of very good or very bad things which happen to PWS, which we can give to the media, who will reach that huge non-PWS audience for us. It's not easy, and I've only achieved a good level of publicity twice in three years: firstly, by complaining about the categorisation as 'Comedy' of some videos on YouTube which showed people struggling to speak; and, secondly, by fighting for the introduction of Early Intervention in England, because it is by far the most cost-effective way of reducing the prevalence of stuttering. The first story was featured in the Guardian, one of our most influnetial daily newspapers and, from there, it was picked up by the BBC and some 30 other news media in the UK and abroad. There were also interviews on the BBC Radio 4 PM programme and BBC Radio London. At the peak of the campaign, hits on the BSA website rose from around 1,500 a day to 3,700. A worldwide campaign against YouTube was then developed, featuring an online petition. This is what I have done, and I'm sure there are there are other PWS doing similar things. But I don't know who they are and therefore there is no big world plan for us to work together to change things. So I try to keep up good relationships with people in the States, because your population is five times the size of ours and, if we can move together, we will be much more likely to achieve change!