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I went to my first Open Day several years ago in Nottingham. It was the first time that I had come into contact with the BSA. And what particularly struck me at that event was the confidence of many of the people there. The London Open Day was the same.
To speak with confidence, whether stammering or not, is hugely liberating. And I see the job of the BSA as helping to build confidence by providing forums, opportunities, information, peer support, advice and inspiration to people who stammer. In many ways Open Days encapsulate what BSA is all about. It’s about empowering people who stammer to believe in themselves, and to have the courage to take those challenging first steps on what can initially appear to be a daunting journey.
And going to an Open Day is the first step for many people who stammer. They have the opportunity, often for the first time, to talk to other people who stammer, and to get inspiration both from them and from the speakers.
Take Shelagh Fogarty, who is a presenter at LBC London Radio. Shelagh told us during her keynote speech that she first realised she stammered at the age of nine. She had the good fortune of having a very understanding teacher who took all the pressure off her at school. But it must be one of the worst nightmares for people who stammer to be a radio presenter. Certainly mine, anyway, but Shelagh wasn’t going to let her stammer stop her.
Shelagh’s speech is fluent now, but she was asked whether someone with a noticeable stammer would be offered a job as a presenter today. Interesting question… She didn’t know the answer, but felt that if you wanted the job you shouldn’t let your stammer stop you from applying. It’s time we had a stammering presenter!
I would have liked to have gone to all the workshops but, of course, you have to choose. I went to two outstanding ones. It would take too long to recount them here, but everyone I spoke to had found great value in all the workshops they had been to during the day.
We talk a lot about changing society’s attitude to stammering, and about ensuring that people who stammer are not discriminated against. That’s important. But Open Days are about taking responsibility for our stammer, and making a conscious decision to discover ourselves through the experience and inspiration of other people.
I’m not content to just sit back and ask society to accommodate my stammer. Understand me and allow me reasonable adjustments, yes, but in the end it’s me who has to decide what I want out of life. The fact that so many people came to the London Open Day is testament to their refusal to be ruled by their stammer. I really enjoyed talking to some great people from all walks of life with one question in common: I stammer, but how can I make the most of my talents?
The worst thing about a stammer is that it puts you off doing what you really want to do. The message from the speakers at the Open Day was: don’t let it! Be brave and the rewards will be great.
I stammer. In (UK) legal terms I’m disabled because my stammer has a “substantial adverse effect on my ability to carry out normal day-to-day activities”.
I don’t want to be discriminated against. I don’t want my stammer alone to be a reason for not employing me. And I want reasonable adjustments in the workplace to take into account the fact that it might take me longer to say things.
I may be disabled, but I’m also good at my job.
Saying I’m disabled gives me protection under the Equality Act 2010. 'Disability' in the Equality Act is a legal concept. You don’t have to "admit" that you would consider yourself disabled in a wider sense. You can dissociate yourself from the disabled world if you like, and still get the benefit of the Act.
But we can’t have our cake and eat it. Are we being disingenuous, on one hand, to demand protection against discrimination and, on the other hand, to disclaim association with the disabled community?
Can you compare stammering with other disabilities? Is it in the same league as cerebral palsy or the inability to walk? Alex Taylor, who is confined to a wheelchair, certainly thinks so. As he says, “freedom of expression is far more important. It’s the key to our personality”.
freedom of expression is far more important. It’s the key to our personality
Looking at it another way, it’s not the stammer that’s disabling, it’s society’s attitude which disables us. I’m disabled, but not because of my stammer. I’m disabled because of the attitude of people around me.
I used to look on disability as an unfortunate label, with derogatory implications. I suppose I didn’t want to be seen as disabled. What’s wrong with being disabled? The problem is that the word disabled can have negative connotations such as powerlessness, incapability, and being "different". But now I feel that my view may have been rather insulting to other disabled people.
People with other disabilities are basically ordinary people too, just with a particular impairment. Many of them would not want to be considered "different" but would see themselves as "normal" people who can’t walk, see, or make sense of words, etc.
But what does the word "normal" mean? People who stammer make up 1% of the population. By one definition, therefore, my stammer is not "normal". I would say that I’m a normal person, but my stammer is not normal. Would you consider dyslexia or depression to be "normal"? There are so many people in a population with some form of disabling impairment that it becomes normal to be disabled in some way.
If something about you is not normal are you, therefore, disabled? My size 15 feet are well outside the normal range. Am I disabled? My dancing partner would argue that I certainly am. Does the size of my feet have a substantial adverse effect on my ability to carry out normal day-to-day activities? No. I therefore don’t qualify for protection under the Equality Act. You can see that the degree of disability can range from mild to moderate, severe, or profound.
So, of course, it’s up to us individually to decide whether we view ourselves as disabled or not. Personally, I don’t want to get too hung up on the word disabled. Being disabled is part of me. It doesn’t define me, but I’m very proud to be associated with disabled people, some of whom are truly inspirational.
I’m sometimes accused of being a fake. I take that as a huge compliment.
Through a combination of speech therapy and relaxation techniques I’ve been able to control my stammer to a point that people think I’m fluent.
But am I being disloyal to the stammering community by seeking fluency? Should I be stammering freely, and proud of it?
The fact is, I never found it much fun to stammer. I get greater enjoyment out of speaking more fluently.
The advice from some quarters is to stammer confidently. But say that to the mum of a three-year-old who has just started to stammer, or to someone with a stammer so severe that it takes minutes to say a short sentence. And the problem is that there’s such a spectrum of type and severity of stammer that it’s almost impossible to dispense one-size-fits-all, universal, advice.
On the surface there seems to be two, opposing, sides to the stammering debate.
First, those who think that society should look on stammering as a normal, but different, way of speaking and as part of the rich diversity of human life. By changing society’s attitude towards stammering, it is said that people who stammer will be more confident (and, therefore, naturally more fluent) because they have no reason to feel tense, anxious, and ashamed.
Second, those who think that stammering is a speech defect and something to be overcome, or at least improved, using the many forms of help available.
Or to put it in academic terms, the social model versus the medical model.
It’s easy to like the social model. It’s somehow cosy and reassuring. It requires no effort from people who stammer. It places responsibility squarely on society to smarten up its act.
Not surprisingly I’m a fan of speech and relaxation therapy – examples of the medical model. But I’d be the first to acknowledge that these interventions don’t work for everyone. And that’s why I think the social model is so important, too.
And yet, I fear that people who stammer could expect too much of a society which is confronted by a legion of human problems and disabilities. Yes, society should celebrate diversity. But don’t people who stammer, too, have a responsibility to use whatever help there is to mitigate the difficulties they have? It’s a two-way thing.
Acceptance, treatment, awareness - you’ll find all views expressed here in the BSA . The BSA supports and advises people who stammer and their families who are urgently, sometimes desperately, seeking help. Today. But it also works tirelessly to change society’s attitude towards stammering. The irony for me, of course, is that it needs confident stammering to deliver the impact required to spread awareness and to increase understanding in society.
Perhaps I should start stammering again…
At the Manchester Support Group, we’re very excited about our ideas for the 2016 BSA Conference. We’d like to hear your ideas too! We’ve put together a brief survey for you to complete:
The conference will be held from September 2–4, 2016 at Hulme Hall. This is in a leafy area of South Manchester, adjoining the university and the famous “curry mile” of Rusholme. A wide range of pubs, clubs and coffee shops are nearby, as are the free entry Whitworth Art Gallery and Manchester Museum. The city centre is a 20 minute walk, or you can catch one of the very frequent buses on Oxford Road, the busiest bus route in Europe.
The keynote speaker is former shadow chancellor, BSA patron and Chairman of Norwich City Football Club Ed Balls. We’d love to hear your ideas for other invited speakers, or for activities at the conference. We’ll be issuing a call for submissions for BSA members or other interested parties to run workshops or give talks shortly after tickets go on sale.
For now (and until September) please send comments and queries about the conference to:
You can also send messages to us via the BSA.
The BSA board of trustees (called General Committee), with Norbert in attendance, got together this month for their quarterly meeting in London. For some of us that means getting up at 5.30am to catch the train and be in our seats by 11am. Phew, just made it! My fellow trustees are a fantastic bunch with one aim in common - to help people who stammer. We take our job seriously and recognise the size of the task in hand. But we don’t take ourselves too seriously, so it’s a good balance! The trustees are mostly people who stammer and they come from all over the country. The aim is to have a board of trustees with a wide range of backgrounds, skills and experience.
What’s the point of the meeting? Well, we look at what’s been happening, consider what we would like to happen, and then decide how we're going to do it.
The law defines trustees as having control of the charity. In other words, they’re legally responsible. So in simple terms, it’s the job of the trustees to look after and nurture the BSA for current and future people who stammer. Many people probably think that the main task of the trustees is to oversee the finances of the charity to ensure that it stays afloat. Although this is an important aspect of the role it’s by no means the only one.
Part of our responsibility is to have a clear vision, or ambition if you like, of what we want the BSA to achieve. Then we have to decide how we’re going to achieve it. So there’s a good deal of thought, or strategic planning, that’s required. But we don’t operate in a vacuum and there will be all sorts of things going on in our environment that might influence our strategy, and we have to be alive to those. So the trustees are currently reviewing our vision for the BSA to ensure that the charity is doing all it can to help and support people who stammer over the next 5-10 years. As we’re a user-led charity your vision for the BSA is really important so we want to hear your views, too. As a starter for 10 here’s mine:
- for people who stammer to speak with confidence (stammering or not), so that they can enjoy life to the full, and make a greater contribution to society at large.
- for society to “get” that it’s what you say, not how you say it, that matters.
Please let me have your comments by the end of February - you can email me at email@example.com.
Back to the meeting! It was a very full agenda including an update on ESN from Iain Wilkie who kindly gave up his Saturday morning to be with us. We had reports on finance, the website, education, fundraising, Young BSA, social media, the National Conference, and Open Days. A lot of work goes into producing these reports, and I’m grateful to the staff and trustees involved.
I mentioned Norbert earlier in this post. Whilst it’s the job of the trustees to determine the policies and strategic direction of the BSA, it’s Norbert who has to implement those board policies. He’s the bloke who actually gets things done with the help of his part-time staff and volunteers, including Lee, Helen, Allan, Arifur, Cherry, and Mandy. Without Norbert’s commitment, hard work, and specialist knowledge not only would our vision for the BSA not be fulfilled, but also the everyday servicing of the stammering community would grind to a halt.
And so the meeting ended at 5pm. No time afterwards for a pint for me, sadly, because I had to get home for a birthday party. But by the time I got back at 9 the Abbot Ale tasted all the sweeter….
I was fortunate enough to sit in on a stammering awareness training session last week. It was run by Michael Turner, a person who stammers, and Christine Handsley, a speech and language therapist at Grimsby Hospital. The session was aimed at receptionists and others who are in patient-facing roles.
Michael himself is a beneficiary of speech therapy at the Leeds Stammering Centre, and it was there that the idea of training patient-facing personnel was born. A presentation was designed around a questionnaire/quiz and PowerPoint slides, and it was evident from the degree of participant interaction at Grimsby that it was a huge success. The receptionists left with a real understanding of the problems we face and an appreciation of how to respond to people who stammer, both on the telephone and face-to-face.
Michael stammered freely during the presentation, something that he feels is important in order to give receptionists an intimate feeling of what it's like to stammer. The same presentation by a fluent speech therapist, for example, would deliver the information but lack the same powerful impact.
What Michael is doing is hugely valuable because, as a direct result of his work, people who stammer will have a less stressful experience when visiting Grimsby Hospital. In addition to that, Michael says that his own confidence and self esteem have soared since leading the sessions.
Can we at the BSA encourage and support Michael's initiative in other areas of the country? Could it include any customer-facing organisation? These are questions I would like to discuss at the next BSA Trustee meeting in January. In the meantime, please feel free to contact me with any thoughts of your own.