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From: Leys Geddes
Date: 22 Oct 2008
Time: 03:10:10 -0500
Remote Name: 86.163.200.31
Hi Elaine. The stuttering associations tend to spend most of their time providing a kind of 'club' for PWS, and this is a very good thing because it is great to talk, and not to feel that you are alone, and to be in a place where everyone understands. But when those PWS go back into the outside world, they find it is not so good to talk, they are very much alone and virtually nobody understands. It's much the same when you come out of a therapy class! So this just seems like too much of a hole to climb out of, especially as finding a wide scale solution to the awareness and understanding issues will probably entail going on TV or radio, and telling the world - and that is the very last thing most PWS would want to do! Also, as awareness is so low, the stuttering associations get virtually no money and so they do not have the budgets they would need to launch advertising campaigns which might start to change things - so it's Catch 22 and we are still stuck in the hole. I am no hero, but I am about the only PWS I know who works as a marketing consultant and, therefore, is familiar with this kind of problem. So, I think that, as we have no money, we need to do more public relations and get out of this hole by giving the media some really newsworthy and interesting stories about stuttering. It's not easy, as I have explained to others at this conference, 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 influential 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. In answer to your second question, a PWS certainly does know that his friends see him as a person, who might stutter from time to time, but that it does not define them as a whole, and that is indeed not even one of the first things that come to mind when they think about them. So, to cut a very long story short, the friend does not care about the stutter and therefore assumes that everyone else doesn't care about it either. But when that PWS goes for a job interview, the interviewer certainly will care about it, becasue it is the main thing he sees... The problem, Elaine is not so often about having relationships with people you know, it is about OPENING relationships with new people, and trying to deal with your fears and their prejudices.