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2017 was a vintage year for the BSA. So many incredible people have done so many amazing things in 2017 that it’s impossible to be able to honour them all. What is certain is that the lives of many who stammer have been improved by people who are passionate about helping others through their own experience.
Talking about stammering
It was a year that put another nail in the coffin of silence around stammering. How? By talking about it. It’s only by talking about stammering that we’ll nail the social stigma surrounding stammering. And it’s only by us talking about stammering that we’ll nail our own limiting, self-stigmatising beliefs about our stammer.
The BSA is here to help. I see the BSA as being the catalyst for change, encouraging and inspiring people to make a difference to the lives of everyone who stammers. You, our members, are Team BSA, and it’s you who’s driving the change.
The reason the BSA abandoned its membership fee at the beginning of the year was to tear down a possible barrier in our efforts to speak as one voice. That strategy is working as evidenced by the fact that membership has doubled in the last twelve months. But we need it to increase tenfold to maximise the volume of what we have to say.
Raising awareness about all the issues around stammering is something we can all do, must do, at every opportunity. 2017 was an outstanding year in that respect. Norbert led the way with a presentation at the Department for Work and Pensions after which the Customer Services Leader, Martin Berry, said:
“I have worked for the Department for nearly 24 years and I am struggling to think of a talk that has had as much impact as yours. A high number of staff have talked to me about how they will act and react differently when listening to someone who has a stammer.”
Raising awareness about stammering came in a multitude of different guises. Those lucky enough to get tickets for the play “Unspoken” by Neil Rathmell and Trudy Stewart were treated to powerful theatre exploring the feelings and experiences of living with a stammer (and we've only just had confirmation the play will be staged in London at the City Lit on March). Teacher Abed Ahmed’s brilliant video showing how he helps his pupils come to terms with their stammer went viral on social media.
Humber NHS Foundation Trust joined forces with Hull City of Culture to develop Hear in Hull which included an imaginative animation based on conversations with children who stammer. Their ambition is to show the animation in every school in the country.
Creative talent comes in abundance in people who stammer, and exhibitions by Rory Sheridan and Wendy Ronaldson showed how art can be a highly effective medium for delivering powerful messages about living with a stammer.
Many others have raised awareness, and much needed funds, through feats of endurance. Jimmy Lang swam for miles despite a touch of flu, Ade Abimbola ran the marathon in an impressive time, Iain Wilkie rode his bike all day and couldn’t sit down for weeks, and Michael Thompson played 100 holes of golf in one day. I even managed a little walk myself.
Educating society about stammering is at the core of raising awareness. BSA Trustee, Patrick (Paddy) Campbell wrote an important paper called “The Way We Talk” in which he explores the use of language around stammering, highlighting the stigmatising effect of certain words. The Huffington Post published a brilliant article by Iain Wilkie titled “An Obsession With Fluency In The Workplace Creates Barriers For Those Of Us Who Stammer” in which he provides valuable insight into the benefits of equality and inclusion.
2017 saw some firsts. The Airedale Stammering project scooped the Guardian Digital and Technology Award for Public Service. The BSA collaborated in this initiative. This outstanding achievement celebrates a combination of innovative thinking, the imaginative use of widely available technology, and the determination to deliver a much-needed service to people in need. As a result of the tremendous work by Steph Burgess adults who stammer can now access speech therapy live via their laptop or mobile - free.
Another first was the live streaming of the Giving Voice event at UCL. The success of this event guarantees that it will be the first of many, allowing everyone to benefit from presentations and lectures.
The benefits of being open about our stammer has been a common theme throughout the year, no more so than at events put on by the Employers Stammering Network (ESN). The emergence of inspirational champions like May Breisacher, Betony Kelly, Angela Morgan, Paul Barrett and Mark Benton will ensure the message gets through that it’s OK to stammer at work. Mark says:
"There’s no doubt in my mind that being open at work has been one of the biggest enablers in terms of career advancement for me."
ESN Manager, Helen Carpenter, in conjunction with Employers Network for Equality & Inclusion, wrote “Understanding Stammering – a guide for Employers”. This is a seminal paper which all employers would do well to read. Its effects will be far-reaching for the prospects of people who stammer in the workplace.
The Redefining Stammering at Work Programme, run over three sessions, has been evaluated by City University thanks to funding from the Dom Barker Trust. This research confirmed, perhaps unsurprisingly, the barriers and challenges imposed at work for people who stammer. It also reported that attendees achieved a greater acceptance of stammering, self-confidence and self-esteem on completion of the workshops.
A new ESN hub has been established in Bristol, with the hope of another one in Birmingham. Open Days in Ashford, Kent, and in Merseyside have been responsible for bringing people together to talk about stammering. Such is the popularity of these days that we want to encourage as many as possible in the cities around the country.
Helping and advising parents to negotiate the path though the education system for their children who stammer is a big part of what we do. And we’re so fortunate in having Cherry Hughes’ expertise on these matters. One of the most heart-warming moments of the year came when Norbert received a letter from a Mum whose son, who stammers, sets out on his first day of secondary school. Letters like this make me proud to be associated with the BSA and the people within it who work so hard.
As we move forward into 2018 we have much to look forward to. Change for the better is taking place every day that passes. Our members and volunteers, our staff, the Trustees, Speech and Language Therapists, partner organisations – all working towards a society where every person who stammers has as much chance of a full and rewarding life as anyone else. How good is that?
Stamwalk reminded me of my own experience with stammering. You stand at the threshold of life with a stammer and it looks daunting. You can visualise what the destination looks like, but it seems a long way away, and there are many obstacles in your path.
I remember standing at the famous sign post at John O’Groats. Decision time. Do I catch the next train home? Or go for it?
The first step south was the most important. I knew the road ahead was going to be hard. I knew it was going to be painful. But I also knew that, unless I faced the difficulties, I would never get to where I wanted to go.
I was walking at about 3.5 mph. It seemed very slow and I didn’t appear to make much progress hour by hour. But now, when I look back after 56 days I think, wow, that’s an awfully long way. In fact, it was 1,035 miles and 2,163,629 steps. And the thing is, every single one of those small steps has played its part in getting me down to Land’s End.
Raising awareness about stammering is a bit like that, too. It’s never going to be quick. It’s never going to be easy. But every single conversation we have about stammering raises awareness just that little bit more for the good of ourselves and for the whole stammering community. It’s only when we face our stammer and talk openly about stammering to our family, friends and colleagues that we’ll be able to look back after a few years and say, “Wow, look how far we’ve come”.
The walk from John O’Groats to Land’s End will go down as one of the most incredible experiences of my life. It was an enormous privilege to represent people who stammer as I walked down through the country, talking to folks along the way. It was a unique insight into the fears, hopes and ambitions of many fellow stammerers, and a rare opportunity to take stock of my own voyage on the stormy seas of self-discovery. It was an honour to meet speech and language therapists, many of whom are responsible for transforming the lives of their clients – what a wonderful profession it is. And
I got the chance to see some of the most beautiful areas of the country up close and personal.
I wanted to walk the length of the country because I felt we needed to do more to raise awareness about stammering. One of the best ways to do that is to talk to people. Face to face.
Raising awareness about stammering, to those who have little understanding of it, is a no-brainer. But raising awareness is more than talking only to the uninitiated. It’s also about talking about stammering to people who stammer, because many of us don’t talk about it. So, Stamwalk was also about raising awareness of the benefits of talking to our family and friends, people who know us best, about our stammer. If we’re open to them about stammering it’s much easier to be open about it to colleagues and even strangers. It’s difficult to talk about stammering - I know because it took me many years to do it. But it’s the best way to face a stammer.
In the 56 days I was on Stamwalk I stayed the night in only six B&Bs. The other 50 nights I was with members of the BSA, speech therapists, friends, and family. They all welcomed me into their homes, fed me, ran a hot bath for me, tucked me up in bed, and sent me off with a sandwich and Snickers bar the next morning. I can’t thank them enough. Without exception, they were pleased to be involved and wanted to help. Those who knew nothing about stammering demanded to know all about it and you can be sure that, when they next sit down to dinner with friends, they’ll say, “You know what, I talked to this bloke from the BSA and he said…..”.
That goes for everyone I spoke to during the long days, too. Although some mentioned the King’s Speech and Ed Sheeran, no one really had any clue what causes stammering, what it feels like to be someone who stammers, or how to relate to us. But they were curious and wanted to be better informed. When they next meet someone who stammers they’ll see them as perfectly normal people who happen to speak in a different way.
The point, here, is that films and plays featuring stammering, interviews with celebrities who stammer, and videos about stammering are all helpful. But the value of us, all of us, talking about stammering to the people we know and meet is incalculable. It’ll do more good than 1,000s of films, celebrities and videos.
One of the challenges of Stamwalk is to make sure we make the most of the opportunities that arose. For example, Tony Adams, journalist and broadcaster, asked at the Birmingham event what he could do to help. Preet Kaur Gill MP said she would ask a Parliamentary Question. Liam Byrne MP offered his support, as did Steve McCabe MP. George Freeman MP said that he would hold a reception in the House of Commons to raise awareness about stammering. The event in Bristol was the first occasion that the regional ESN hub got together, and a new hub was proposed for Birmingham and the West Midlands, and for Newcastle and the North East. Many other introductions were made with the promise of future collaboration for the good of people who stammer. Our job now is to facilitate those intentions.
A highlight of Stamwalk for me was the companionship of those who walked with me. I will never forget the time we spent together, some for a few miles, some for the whole day. I would like to think we will be friends for many years. It would be great to meet up again soon, although we all have busy lives to lead.
I have to admit to a major failure. I set out to enjoy a different pint of ale every day of the walk and to record my tasting notes. The project was, however, doomed to failure when I discovered that Belhaven and McEwans were the only beers on offer for the first two weeks, with the exception of Sheepshaggers Gold by Cairngorm Brewery. Readers of my blog will know that I signed up three sheep for membership of the BSA, but that’s as far as I was prepared to go.
I set out on Stamwalk to raise awareness about stammering, to increase membership of the BSA, and to raise money for the work the BSA does for people who stammer. I’ve never been afraid of ambition. But what is certain is that raising awareness about stammering is not going to happen overnight. It’s going to take many small steps to make a difference, and we all have a part to play in getting us to Land’s End.
Update: This walk from John O'Groats to Land's End started in July 2017. Visit Tim's Stamwalk blog for his latest blog posts on it.
There’s been a fantastic response to our call for support for Stamwalk. As a result, Norbert and I made the decision on Monday to go for it. The number of you who have responded has shown that we have the core of support necessary. But that’s only the start. To make the impact we want we need as many of you as possible to get involved.
Just to remind you, I’m going to walk from John O’Groats to Land’s End, meeting and talking to people about stammering all along the way. Start date is 27th July. Dates and timings of the entire route are already on the Stamwalk page.
As some of you know I’m very keen that we should talk about stammering. Talking openly about our stammer is something that many people who stammer find incredibly helpful. And talking about stammering to our friends, our colleagues, and the general public is essential if we want them to understand what it’s all about.
There’s been a lot of brilliant talking about stammering lately - ESN, DSN, radio and television interviews and documentaries, conferences and seminars. It’s an exciting time for people who stammer, and you get the feeling that a momentum for change is building. Now it’s time to walk the talk.
Walking the talk from John O’Groats to Land’s End is a visible demonstration that people who stammer live and work throughout the country, with no boundaries of background, profession, race, religion or politics. It’s an opportunity for us to learn from and to help each other, to inspire each other, and to reinforce the fact that stammering is nothing to be ashamed of. It’s an opportunity to promote the benefits of speech therapy and to celebrate the amazing people who work in that profession. And it’s an opportunity to turn around the public’s negative reactions towards stammering that persist today into an appreciation of the wealth of talent that people who stammer have to offer.
Stamwalk is also about the BSA, and how it can do the best for people who stammer. As BSA Chair, I’m very happy to take the lead. But we need lots more help. The success of Stamwalk will be measured by how many people we can involve and include. So please get in touch if you can support us. You can support by walking with me for as long or short a distance as you want. You can support by arranging an event on the night I’m in town, remembering to invite the local newspaper reporter along. You can support by spreading the word on social media. And if you have a spare bed in the house I will gladly, and gratefully, sink into it.
Stamwalk is also an opportunity to raise funds for the BSA. All money raised will go towards funding the activities of the BSA and will not be used to cover the costs of the walk itself. You can donate at
www.justgiving.com/stamwalk or donate by texting STAM53 £5/£10 (delete as appropriate) to 70070. So if you wanted to donate £5 you need to text STAM53 £5 to 70070. You can't donate more than £10 through Textgiving.
I was going to write this blog on the train on the way home from BSA Manchester 2016. But I fell asleep. Surely the sign of a great weekend…
Today, refreshed, I can reflect on the huge achievement of Max Gattie and Jen Roche together with their team at the Manchester Stammering Support Group. Not only was the conference run in a highly professional way, but it also brought together an extraordinary collection of people, both speakers and attendees. I say extraordinary because I have rarely been with a group with such a universal desire to help and inspire other people who stammer. Comments on Facebook endorse that.
I had the privilege of introducing Ed Balls during which I took the opportunity to tell the Conference about the new BSA strapline, Talking About Stammering. You can see it under the BSA logo on the web pages. You’re going to hear a lot about this strapline in the years to come because the Trustees feel that talking about stammering is the cornerstone of our ambition to improve the lives of people who stammer.
And, indeed, improvement was the theme of the conference.
But what does improvement mean in the context of stammering?
Well, the word improvement has connotations of development and growth, probably over a period of time - a progression. Some people use the word journey to describe the progression. I like the word voyage because it makes it sound more of an adventure. It’s a voyage of self-discovery, yes, but it’s also a discovery of the help that’s available.
Improvement suggests a movement from one state to a state considered to be better – a change for the better over time.
And that’s why the theme of the conference, improvement, was so exciting. There’s so much within ourselves. Our theme said you don’t have to accept how things are now. There’s hope. You don’t have to remain locked away in a dungeon of dysfluency or disaffection. You don’t have to look back in later years and regret the missed opportunities.
And, of course, one other great thing about improvement is its inclusiveness. Anyone can do it! It’s inclusive, and it’s possible. Because we can all improve.
The point of the conference was not to come away fluent. But it was to come away feeling inspired to improve. To develop a greater belief in ourselves. To reinforce our unwillingness to be shackled by our stammer. To build our confidence.
Of course, we talk about self-improvement. But what about society? Do we not also have to move society forward to a state of better understanding of what stammering is, and of how to relate to people who stammer? And the conference addressed that, too.
The first step to improvement is talking. Talking about stammering. And that’s where our new strapline comes in. Quite ironic, isn’t it? Talking, I mean, when many of us are used to zipping it. Finding excuses not to talk.
But talking about stammering is something we must do more of. The BSA already talks about stammering. We must do more. We should encourage people who stammer to talk about their stammer. We should encourage people who stammer to talk regardless – not to hide away and be ashamed of their stammer. We should talk about stammering more in schools. We should talk about stammering even more on social media. We should talk more to our employers about stammering. We should talk more to our employees about stammering. We must insist society talks openly about stammering because only by talking about stammering are we going to mitigate, and eventually remove, the stigma around it.
So the BSA is committed to talk about stammering because that is how we will improve the lives of people who stammer.
There will be an unmissable opportunity to talk about stammering in the lead-up to International Stammering Awareness Day on 22nd October. The BSA needs your input because the more people who are prepared to talk about stammering, the better. We need people to talk to their regional radio and television stations. We need people to talk to their local newspapers. We need people to talk to anyone who will listen. You will soon be able to download an information pack from the BSA website to help you talk about stammering whenever the opportunity arises.
Finally, a big thank you to everyone who made BSA Manchester 2016 such a success!
The BSA National Conference in Manchester is coming up fast and with that workshop organisers like us are making our presentations and talks to (hopefully) entertain, intrigue and inspire attendees. Our first “Why Sssooo Ssserious” workshop at the London Open Day was initially met with a few odd looks and comments, so we thought it would be good to explain the thoughts behind it for its upcoming sequel in Manchester.
Laughter is powerful. Jokes in society about stammering that peddle prejudiced, negative views are all too common. These jokes undoubtedly play a significant role in creating and maintaining the large amount of public stigma surrounding stammering as well as assisting the development of internalised stigma. Fortunately, this common experience has united the stammering community to crusade against laughing at stammering, from the playground to the television.
The chosen tag-line at the time though “stammering is no joke” seems to too black and white.
People who stammers’ often almost uniformly negative experience of jokes about stammering can cloud their vision to this potential of positive jokes about stammering that can break rather than make stammering stereotypes.
In our experience, the laughs come easy and acceptance follows when you mention stammering in a humorous light
- Ian, for instance, often opens his presentations with “I have a stammer and will probably have some long blocks. If you just bear with me, I’ll try and have you out by Christmas”. It immediately puts both himself and the audience at ease. The elephant in the room is outed straight away and they know it’s something that can be acknowledged… even joked about.
- Nisar has found that using humour allows him to set the tone for how we are received rather than allowing the tone to be dictated by a third-party at the expense of our predicament. He has been inspired by Katherine Preston with her positive and occasionally humorous approach to stammering. Nisar finds himself quipping and playing with his stammer during prolongations as an antidote to constantly bogging himself down under the self-inflicted pressure of his negative thoughts and ideas about stammering.
- Lesley has found, like Ian, using humour when talking about her stammering experiences makes advertising easier as it not only puts her at ease but the listener too. It gives the listener the opportunity to engage in a positive conversation about stammering.
- And, Patrick once managed to win a local round of the Toastmasters Humorous Speech Contest with a speech entitled “H-H-Hilarious”.
More widely, the power of laughter has been noticed in other stigmatised disabilities as well. Indeed, a positive disability comedy movement has blossomed over the past 10 years.
One great example is Jess Thom, an activist using humour in Tourette’s. She founded the site TouretteHero, which celebrates the humour and creativity of Tourette’s. She says:
“[We use humour about Tourette’s] to challenge the assumptions about the condition and about disability more generally. To reduce fear of difference, biscuit, and help everyone feel more comfortable talking about it, Biscuit, because it is crucial the voices of disabled people are heard to counteract the rhetoric that is often used about disability. In my experience, humour plays an important role in cutting through fear and helping people feel at ease with difference. Laughing matters”
There are already several stand-up comedians who stammer: Jaik Campbell, Nina G, Chris Douce, or Drew Lynch to name but a few. We even made a show reel of them to show at the workshop – until the Wi-Fi failed. They are all great to watch on YouTube.
The massive potential of positive jokes about stammering and disability is only beginning to be realised. We hope our workshops can encourage this trend to continue.
Monday morning after a tumultuous few days - feels almost a relief to be back in the office and not glued to the telly.
As the Chinese curse goes, "may you live in interesting times". It's a whole new ballgame out there and we will need time to evaluate the impact on BSA. Some of it will be unique to the BSA, some more widely felt in the charitable sector. Some of it may not be apparent for some years and is dependent on the outcome of any negotiations, so we may be worrying prematurely.
Nobody has yet quite worked through what the impact on the economy will be – not as catastrophic as prophesied but not as good as it could be, most likely. There is likely to be an impact on our fundraising as those Trust funders who support the BSA, thanks to Lee’s hard work, may see the value of their investments (and therefore their dividends) decline. Not only that, charities are currently in receipt of €200m EU funding each year and as these funds run out over the next few years and new ones won't come on stream, there will be a greater demand on charitable trust funders to make up the shortfall. This will result in far greater competition for a smaller pot of money. This may have potentially the biggest impact on our income.
What's happening in Whitehall - what will be the impact on our work to influence government policy and practice? BSA has been supportive of the Communication Trust's efforts to make sure that the communication needs of children will be firmly anchored in the Government's new Life Chances strategy which aimed to give children from poorer backgrounds a better start in life. Will a change in leadership put this on hold?
As with charitable giving, any potential financial support from Government for our work may well be less likely as priorities may shift as a result of the referendum.
On a personal level, while our members and supporters have always been very generous, any worries about their economic future may well mean there will be less spare money to support the cause, or for items of extra spending, for example to attend our Conference.
But equally, in these interesting times, we as a charity and a community for and by people who stammer need to be ready to support each other; to lift each other up, and to be there, as BSA always has been, with advice, with encouragement, with inspiration and with support.