||About the presenter: Leys Geddes is a marketing consultant and Vice Chair of the BSA. He posted a video, 'Stammering Is No Joke', on YouTube last year, complaining about their refusal to change the 'Comedy' classification of some videos featuring PWS. Now it is probably the most viewed 'serious' stuttering video on YouTube (more than 32,000 viewings), it comes up first in a search for 'stammering', and many of the offensive videos have been taken down. He is certainly not the only PWS who has chosen to speak to the Outside World through main media, such as the BBC, but he is one of the few to do so who still stutters significantly. Frustrating though it is to stutter in front of large audiences, he feels that somebody needs to do it, or we will not improve awareness and understanding. Leys' personal interests include art, writing, wine, cooking, current affairs, films, music and diving. He has two sons: Alex, who is a rock star in Montreal; and Oli, who is a professional grappler and competed in the 2008 World Championships.|
There is a gap between PWS and non-PWS. Partly, it's probably to do with our general reluctance to speak out about our stutters which, in some cases may be tinged with a bit of lingering guilt but, in most others, has been reinforced by years of struggling to talk and fighting against prejudice.
But it's also to do with perfectly normal things that happen in relationships. For example, I think that people who stutter are seen as people, and not as people who stutter, by their friends, because the relationship has become deeper. Whereas the person who stutters is seen as a person who stutters by all of the new people he meets who, not unreasonably, tend to make much more superficial judgements. This is why the problem for stutterers is in opening relationships: on the one hand, they need to get past other people's prejudices and, on the other, they need to get over their own fully justified fears of rejection. So, that's why, generally, we don't talk to strangers about our stutters.
But when the PWS tries to discussing his stutter with his friends, they have largely forgotten that he stutters, and, anyway, he probably stutters much less when he is with them, so they find it hard to believe that the PWS is having a hard time in life. 'Believe me' they will say 'I hardly notice your stutter, and it certainly doesn't make me think any less of you. I don't know what you're worrying about'. This will be the absolute truth, but unfortunately it doesn't help the stutterer much. So, that's why, generally, we don't talk to our friends about our stutters.
So who do we talk to about our stutters? You got it: other people who stutter. And that's one very good reason why there is such a big gap between PWS and non-PWS. It creates a kind of Stuttering World, which is hidden away from everyone else and, not surprisingly, it means that stuttering is not well understood in the Outside World.
'If only they understood my secret'
Yes, there is a big difficulty with stuttering. Covert stutterers do not want to be seen to be stuttering because, generally, they feel that not being fluent will diminish them in the eyes of others. Overt stutterers don't much want to be seen to be stuttering either and so, whether they feel their stutters diminish them or not, they will try to reduce their stuttering and appear to be as fluent as possible. On the other hand, most stuttering associations around the world say their mission is to create a world which understands stuttering. Yet, many of their members may be doing their damnedest to avoid being seen to be stuttering, particularly in public.
So, in terms of creating a world which understands stuttering, we are our own worst enemies. Unfortunately, much of the stuttering community's support structure behaves in this same way, treating stuttering as a 'private' thing and concentrating on talking to the 1% of people who stutter rather than 99% of people who don't - thus accentuating the introverted nature of the stuttering condition.
This 'if-only-they-understood-my-secret' paradox was brought home to me last year when I was asked to do some radio interviews for the BBC. There was no point, I reasoned, in trying desperately hard to be fluent because, if I wanted the world to understand stuttering, people needed to hear me stutter and, hopefully, get the point that this was an intelligent person who simply could not control his speech.
If more of us were prepared to speak out, and to be seen and heard to be stuttering, then, some day, maybe, it will be possible for a PWS to walk into a room full of strangers and feel that, if he wants, he can say 'I stutter' - and for him, and everyone else in the room, to be easy with that.
Warmth, as we all know, melts icebergs.
To understand stuttering better, people need to see and hear it
There is an old Chinese proverb which says: 'Tell me and I'll forget; show me and I may remember; involve me and I'll understand'.
Think about when you see a guy arriving in a wheelchair: you've got a good idea what he is fighting against and so you will adjust to accommodate him - and he knows this, which make it easier for him and you to open a relationship. Most people who stutter are very familiar with "the look" which comes over a stranger's face when he hears and sees you stutter for the first time and doesn't know what the hell you're doing or what he should do about it. Should he look away? Go and talk to someone else? Call a doctor?!
I once went to a barbecue which was largely attended by Nigerians. When I first stuttered, the girl to whom I was talking immediately said 'Oh, my goodness! What's the matter with you? Is it your brain or your speech?' 'It's just a stutter' I replied. 'Oh good' she said, and the conversation carried on. If only we British were more direct and less cynical.
Of course, we don't always surprise people with our stutters, because we very often succeed in hiding them. So, not surprisingly, people cannot see what our problem is and so they cannot understand what it is like and, therefore, they do not empathise with us. We look normal, and we often try to pretend we are normal, but we aren't.
By simply telling people that you stutter, the other person can see what you have put on the table, and both you and he can sit and look at it, and talk about it, if necessary. But if you hide your stutter, or pretend you are not stuttering, you hide yourself, and then you behave defensively and all this shows. The other person senses the discomfort and assumes there is some big problem, but doesn't know exactly what it is - and so the two of you move apart from each other. That's why it's very important for people who stutter to be open about their stuttering. If we don't, no one will even start to understand what our difficulty is, and then go on to understand how deeply it can affect our lives. If you could not walk properly, you could not hide it.
Maybe we need to learn more from people with a mobility disability who, although some have no legs or only one arm - and are not as good at running, jumping, throwing or swimming as us - are, at least, bravely coming out about their disabilities. You will have seen how massive, well publicised events like the Marathons and the Paralympics almost parade their disabilities but, at the same time, demonstrate how they are fighting against them.
This may sound silly, but I think it might be a good idea if we all wore a badge saying 'I STUTTER'; that way, people could adjust their expectations when they meet us, we couldn't be so reticent about our disability - and a better understanding would be born. Similarly, if you are on the phone and the person at the other end says 'There's something wrong with this line, mate, you seem to be breaking up', I have found that it is very helpful to say 'No, I have a stutter', because this usually brings an instant apology and ensures I get their undivided attention for the rest of the call.
One place in which many people who stutter currently feel nice and safe is the internet - simply because one can communicate without actually talking. But, thinking ahead, and as the technology moves away from the written word, and towards more audio-visual formats, people who stutter may be forced to reconsider their views, or become even more isolated.
Danger of talking only to ourselves
People who stutter often feel that they are isolated. Unfortunately, the entire stuttering community and its support structures often behave in this same way, keeping themselves to themselves, seeing stuttering as a 'private' thing and seldom talking to the outside world. This focus on looking inwards, to the Stuttering World, as opposed to looking outwards, to the Real World, accentuates the introverted nature of the stuttering condition.
Those who want to help people who stutter - healthcare professionals and commercial organisations selling 'cures', fluency devices and courses - tend to speak only to those who stutter. So no one is explaining to people who don't stutter what it is like if you do. But, if only those people 'outside' did understand, it would make it so much easier for people who stutter to go happily into the Real World.
Of course, most of the national stuttering associations started life as self-help groups and so very few of them have the instincts, the money or the marketing expertise needed to reach the 99% of a country's population which does not stutter. And, even if they did have the money and the expertise, it would probably take fifty or more years to change public attitudes. If you want a parallel, think back to the Black Power protest at the 1968 Olympics. That was forty years ago and, although things have changed massively, black people are still having trouble in being recognised as equal to whites.
Stuttering is featured very infrequently in the media. On those infrequent occasions when it does get into the news, it tends to be dressed up as a good news story - with the emphasis being placed on the amazing effects of a particular treatment or device - and this gives the unfortunate impression that stuttering can be cured. So, as a result of media attitudes, 99% of the people in the Outside World have little awareness of stuttering and, if they consider it all, they probably think it's no problem.
If we really want to break through, we need to achieve 'crossover' from Stuttering World into the Outside World a lot more frequently than we do at the moment. The best way to do this is to adopt a communications strategy which deals with the fact that, in an increasingly disability-aware and politically correct society, people who stutter are still being treated unfairly. So our aim should be to get people outside to realise that it is just as unfair and hurtful to stereotype, mock, marginalise or discriminate against people who stutter, as the disabled or ethnic minorities. If we can do this, then Outside World will happily support Stuttering World in its efforts to be understood, because they know that ignorance and discrimination are Bad Things.
Again, we should remind ourselves of how it used to be for the mobility disabled. They were almost ignored. People spoke to the person pushing the wheelchair not the person in it. But, after years of education, Paralympics, special signage, ramps and so on, society now knows that these are people with a disability, not disabled people. They can talk openly about it. The disability no longer hinders the opening of new relationships.
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