Visit BSA's new blog. It'll tell you something about the BSA – what we do, how we do it, stories we encounter, stories that move us. Perhaps it will also make us think about the everyday stuff we do, take for granted, and don’t realise we never told anyone we’re doing them.
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.
At the AGM last week I had the pleasure, on behalf of the BSA, to present John Evans with a token of our gratitude and appreciation for his contribution to the BSA as Chair over the last three years. He deserves to sit back and enjoy the fine claret we gave him in the knowledge that the BSA is in a good position to build on the work of recent years. John's wise council and balanced advice, based on his Christian principles, have been a solid rock in what have sometimes been quite stormy waters. John's commitment to the BSA in terms of time and energy has been extraordinary. Few BSA members fully appreciate what he has achieved, but I suppose that is a reflection of John's modest and unassuming nature.
I'd like to thank the Trustees for electing me as their Chair, and hope that I can fulfil their trust in me. But we shouldn't underestimate the challenges we face. In short, we've got a big job to do in a climate of limited resources. The role the trustees play, in partnership with Norbert and his staff and army of volunteers, will determine how successful we are in that job. Ultimate responsibility for the BSA lies with the trustees. We have to ensure that the BSA has a clear vision, mission and strategic direction, and that the BSA is focussed on achieving these.
Everyone involved with BSA and ESN has a tremendous opportunity to effect change for the good in our society. With competent governance, firm financial controls, and the skill and commitment of Norbert and his staff, we can help people who stammer believe in themselves, enjoy their lives to the full, and make a greater contribution to society at large.
I'd also like to pay tribute to the two outgoing trustees, Colin Marsh and Mandy Taylor. Colin has been a devoted warrior for the BSA for over twelve years. He’s one of the most kind-hearted men I’ve met, dedicated to spreading understanding about stammering. We will miss his inimitable emails and his encyclopaedic knowledge of the hostelries around Bethnal Green.
Mandy’s enthusiasm is infectious. Her contribution to discussions is always lively and intelligent, and her willingness to get involved is an example for us all. She recently resigned her trusteeship in order to take up a part time job with the BSA as Finance Officer. And she's been invaluable in filling the gap between Steven and John Perkins leaving and finding a longer term solution.
So we thank them for their selfless input and very much look forward to their continued involvement with the BSA in the years to come.
It’s always exciting to welcome new trustees onto the Board, and the arrival of Rob Pinn and Jimmy Lang is no exception. We eagerly await their contribution in terms of new ideas, expertise, and enthusiasm. I know they will find the job of helping people who stammer a rewarding experience.