|About the presenter: Leys Geddes is a marketing consultant and copywriter. He is a person who stammers and is Vice Chair of the British Stammering Association. He says: "I was once fired because of my stammer. Despite the stammer, I have always enjoyed talking to people, and always tried not to let my life choices be affected by it." Leys' personal interests include art, writing, wine, cooking, current affairs, films, music, diving and driving. He has two sons: Alex, 26, who graduated in Drama, Film and TV from Brunel and is currently a rock star in Montreal; and Oli, 22, graduate in Computer Science from Imperial College and a professional grappler (wrestler), competing in the 2007 World Championships.|
The stated purpose of International Stuttering Awareness Day is "to promote awareness and understanding and to show appreciation for people who stutter and the speech language professionals who work with them." An important part of ISAD is about creating awareness and understanding of stammering amongst people who do not stammer. Many of us have a vision of a world which understands stammering; and the campaign we are running is helping us get there - and could help you too.
Unfortunately, stammering is a low interest subject, largely because people who stammer don't much like talking in public and talking about their stammers. Thus the public hardly ever see anyone stammering, especially in key arenas such as national media. The purpose of this campaign is to seek support for PWS and to encourage comparison between society's attitude to stammering and mobility disability.
YouTube, created in February 2005, and combined with Google videos less than a year later, encourages subscribers to upload videos and share them with other viewers. According to Wikipedia, a survey in 2006 showed that "100 million video clips are viewed daily on YouTube, with an additional 65,000 new videos uploaded every 24 hours. According to Nielsen/NetRatings, the website averages nearly 20 million visitors per month."
YouTube has been criticised for showing videos of teen violence, animal abuse, and uploading copyrighted materials. Especially troubling to us, however, were some videos which show people stammering, or pretending to stammer, which had been classified as Comedy.
If you search You Tube, you'll see that there are many clips which show people stammering, or pretending to stammer, which have been classified as Comedy. Some examples of these 'Comedy' stammering videos include:
So, in late July, we posted a video on You Tube which which you can see at http://www.youtube.com/watch?v=-epHaW8nTJQ. The video was simple, shot on a webcam - as are many You Tube videos - and featured me, a PWS, speaking directly to camera. In order to create awareness and some understanding, we felt it was important that the stammering was seen and heard, not hidden. The tone was authoritative but a little humorous, because we were seeking understanding, not sympathy.
The video runs for about 5 minutes 40 seconds and the script includes statements such as: 'Although it's now clear that the root cause of stammering is a kind of faulty wiring in the brain, the exact cause is still not known. Yet the understanding of, and the support for, most other kinds of disability has improved greatly in recent years. But, in many ways, to have a difficulty in talking is just as life changing as having a difficulty in walking - and possibly even more so - because we are increasingly defined by how we talk and communicate with others.
It is hard to change things because, obviously, most stammerers are not good at talking, and so we are not keen to stand up and explain how it is. The media are not keen on giving time to stammering because, well, it just doesn't make good TV or radio. Then there are some very unhelpful film and TV entertainment programmes in which made-up characters have been given a stammer in order to provide a cheap laugh or to indicate that there is some flaw in their personality. As a result, if stammering is considered at all, it still tends to be treated as a kind of joke.
Speech therapy will often help to control the effects of a stammer but very few adults ever achieve complete natural fluency. So, please, if you know or meet someone who stammers, try and understand what it is like for them. And - please - if you think stammering is a joke, just spend a few moments imagining how you would feel if you knew exactly what you wanted to say, but you couldn't actually say it.'
Initially, as we had expected, the video was viewed mainly by PWS, and was much applauded by them for its directness. But our key aim was to achieve 'crossover' and obtain coverage for the You Tube story and the video amongst a much wider, non-stammering audience. To this end, we had been building interest in the You Tube disagreement with the Guardian, a much-respected national newspaper.
In late September, they published an article written by their Health Editor, headed 'Anger at YouTube stammer clips'. It went on to say that 'The British Stammering Association has strongly protested to the YouTube website over videos showing people struggling to speak which have been classified by the website as comedy'. It quoted our original email to You Tube, which had asked whether they encourage viewers to laugh at people who are blind, crippled or deaf: "Are they part of the comedy show too?" Kate Hoey, a Member of the UK Parliament, kindly provided her support by explaining that "For many people, particularly youngsters, stammering is not a joke - we need to ensure that help and support is given as early as possible and, most of all, we need to educate the public to understand the impact it has on people for the whole of their lives."
Viewings of the video now took off. Shortly afterwards, the story was lead article on BBC Online News Features. This has been followed by features on stammering and interviews on two BBC Radio programmes, so far. It is worth recording that page views of the BSA website were exceptionally high, reaching a peak of 3,686 on the day of the BBC Online News Feature. All of the UK media coverage, the Guardian article, the BBC Online News feature and the two BBC Radio interviews, can be found at http://www.stammering.org/events_leys.html
There has also been a great deal of media attention outside the UK, with at least 20 sites - in France, Norway and Italy and many other countries - having picked up the original Guardian story. The international pick-up has been due largely to the ubiquitous presence of the internet and the fact that You Tube is an international operator.
I tell you about this campaign not only because I would like your support, but because You Tube is a worldwide organisation and therefore you could benefit as much as us from this story.
Key to the success of the campaign has been the use of the same PWS, namely me, in the video and the two radio interviews. We reasoned that when these things are said by people who stammer then, difficult though it may be for a PWS, it has a lot more weight.
There was a very good exchange at the end of one of the radio interviews where the compere said: 'Often when I finish recording an interview with a guest they'll say "Oh, d'you know, I um'ed and ah'ed during that and I sounded a bit uncertain - would you mind just - can you take those out - can you make me sound better?" That's something you often hear. What should we do when we're editing this interview?'
Which allowed me to reply: 'I think you ought to leave it exactly as it is. I think that is partly the reason you hardly hear anyone on TV, on the radio or whatever who has a stammer - it's inappropriate - and everyone hopes to clean you up. But I think it's terribly important, if people in the outside world have to start to understand how it is to stammer, then they have to hear a person stammering.'
So, although my speech was pretty dreadful throughout these interviews, it did not matter because our aim was to raise awareness of stammering and, hopefully, to demonstrate that PWS are just as sensible as everyone else, but simply have trouble in getting the words out.
At the risk of appearing rude to many eminent therapists, it may be that those expert people who kindly speak on our behalf, but do not stutter themselves, can make the whole subject seem a bit antiseptic and impersonal - which is nothing like how life really is if you have a stutter. So we have thought for some time that if we can first address stuttering as a social problem, then the need for professional or medical help will follow much more easily. A bit like alcoholism or mental illness or depression, I guess, where you don't want to be seen to be sloping off to see any kind of shrink until you can talk about whatever it is fairly freely with your friends and colleagues.
So it gives us great pleasure and hope to see that when people have 'permission' to talk about stammering, which is what the No Joke media exposure has done in the UK, then a lot of PWS are very happy to come out. The change in the 'climate', so to speak, brings the top of the silo closer, and thus makes desensitisation more achievable.
Since You Tube is a worldwide organisation, we can all benefit from this story. So we encourage every other stuttering association to join and extend this campaign all around the world, as a part of this International Stuttering Awareness Day and to continue throughout the year!
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