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.
"T-This is what I sound like when I speak for myself. This is what I sound like". I recoil from the sheer vocal power after listening to Erin Schick's performance poem on stuttering. It's brave, open, honest, and most importantly proudly stammered.
Her poem, to me, encapsulates the growing movement of dysfluency pride. A term I first heard at a workshop at the Glasgow BSA conference run by Sam Simpson and Katy Bailey (see also this video of Sam, Katy and St John at the Oxford Dysfluency Conference talking on this subject). It was news to me: stammer’s taking pride in their speech impediment? Have they lost the plot?
However, having read into it a bit more, I have tempered that view. Dysfluency pride/stammering activism is a movement taking strength from the disability rights movement and the social model of disability, that sadly seems to have passed stammering by in the most part. The disability rights movement led us away from seeing a disability as an individual defect but rather a form of social discrimination against certain types of human variation. For example, under the ideas of the movement, a person who needs to use a wheelchair is only disabled when society assumes the ability to walk and therefore disabled access is not provided. People who use wheelchairs have demanded society remove this assumption with a consequent increase in buildings accessible to all.
Taking this premise, stammering is only a problem because our culture values, and potentially sometimes demands, fluent speech. What right does society have to expect fluent speech from us when we are not able? What happens if we start to reject this value and demand on fluent speech?
What if, rather than hiding our stammer to appease society’s demands we fight for our right to stammer? This is the thought behind dysfluency pride.
The strongest voices of this approach are to be found in the United States, with the provocative blog Did I Stutter and the podcast StutterTalk. These both recently combined for two powerful but controversial podcast episodes, fascinating listening if you are interested in the topic. To take this view of pride in our stammers into our lives may a be a significant mental challenge after years of fluency chasing. Well, it is in my case anyway. If you look to the media, nearly all stories about stammering contain that word overcome. A pervasive view of stammering in society is as a defect that is there to be defeated; we can so easily internalise this view.
Dysfluency pride is looking for individuals to question this opinion of society and take a much more empowering view of their speech. Already many forms of therapy aim for clients to accept stammering but dysfluency pride wants us to flourish with it. It wants us to stand up and question the current fluent values of society, to stammer loudly and proudly, to show society what we sound like.
Great meeting of the South Wales Stammering Network in Cardiff last night! There were 11 of us there – the biggest number we have had for a long time. Some old friends turned up again, and it was wonderful to see the progress they had been making in their lives over the past couple of years. The Group was not the cause of that – the achievement was theirs – but we know that we made a difference.
Someone told us how he had gained fluency – enough to make him a sought-after committee chairman – through deciding not to worry about stammering. When the worry became less, so did the stammer. He was wise enough to tell us that he knew his way would not work for everyone, but I know that many of us took away something useful for our own lives. I certainly did.
Then there was that extraordinary moment, which still tends to make me break up – when someone has the courage to come along to a group like this and, for the first time in his or her adult life, opens up about stammering with other people who stammer. As usual, their reaction was partly one of disbelief: “You stammer, like I do, and you are nice people who have found a way to live your lives that gives you a sense of purpose and pride??? Maybe I can do the same ….”
We are so, so, so much bigger than our stammering – it is just a tiny facet of who we are (even if we sometimes feel it colours everything). It’s just that we need other people to tell us so. And that’s why I am so pleased to be part of a stammering support group.
Just a footnote – now that Arwel Richards has started another support group in South Wales, we might have to change our name. We will have to put an “East” in there somewhere!
Link: South Wales Stammering Network page on this website.
The recent departure of BSA’s fundraiser got me thinking about fundraising. I have heard it said that charity fundraising, in our current economic climate, is like running up a steep hill with a sack of coal on your shoulders.
However, raising money for stammering adds an extra sack. Why is this I wonder?
Awareness and understanding of stammering are improving but are still at a relatively low level. The myths about stammering seem to be deep rooted and widespread. This being the case it is not surprising that empathy for stammerers may be lacking and donations hard to generate. BSA works tirelessly to improve awareness and understanding of stammering and dispel the myths but it can only do so much with its limited resources.
My New Year’s wish is for BSA and the stammering community to work together to educate people about stammering and help remove the extra sack of coal from the shoulders of BSA’s new fundraiser. Together we can move mountains.
Yesterday was busy but brilliant.
We started the day with a visit from our Trustee Tim who got up really early to make it to the office from rural Lincolnshire. We got a presentation from a software supplier and trainer as we need to upgrade our accounts package to SAGE. At the moment we're using an MS Accounts database which I set up 15 (!) years ago, together with lots of pencil lead and brainpower of our volunteer accountant John Perkins. John has been doing our books for 15 years now but he is making ominous noises about retiring so modernity is thrust upon us. Also, with cashflow being 'interesting', it helps to know more about where the money is coming from, is going to, and how much there is at any given moment! Lots to learn, and a busy January, no doubt. If you're an accountant with some spare time, we may wish to hear from you!
Rushing off for a lunchtime meeting at the amazing Lloyd's Building in the City. In 25 years of living in London I've never once been inside. We have been nominated for a charity grant from the Lloyd's Market Charity Awards by Steve Gutteridge who works in the market - £2,000. Thank you, Steve! And not just for the £££, but for an excellent meeting on the 11th floor, with amazing views over the City, in an iconic building, featuring a wide variety of charities, all doing quite amazing work. What more could one wish for? And if you've ever wondered, yes, they DID reconstruct an 18th century stately room on the 11th floor! The nibbles were also quite excellent. Though the ride in the outside lift was a tad scary....
A quick cab ride (a rare luxury in itself) to Canary Wharf where Iain Wilkie and I were meeting with KPMG to see if they could be interested in signing up for the Employers Stammering Network. Richard Murray has been quietly beavering away to raise the issue of stammering at KPMG and as a result we got a whole hour with him and Tony Cates, KPMG UK's Head of Audit. You can't get more senior than that, and we spent the hour talking about stammering. There's very little that's more convincing than authenticity and openness about your stammer, and Richard's description of his own journey, and his leadership, really made a big difference. I'm hopeful we have a new Founder member.
Good opportunity for a quick catchup with Iain after the meeting and then off to Aldgate for a meeting of the working party on Quality Improvement (QI) of the East London NHS Foundation Trust. Like all NHS Trusts, ELFT has to find 4% 'efficiency savings' each year and after 4 years, that's 17% less than the Trust would normally have. There's no more fat to trim and the choice is between cutting services or saving money by improving the way we do things. The QI programme is in full swing with an ambitious target of being the best provider in England by 2020. But if we're going to be the best healthcare provider by 2020, surely the Council of Governor also needs to improve to be the best CoG in England by 2020? Well, that's what I asked myself - which is why I am now lumbered with being member of this working party! Getting home around 8pm, tired but happy. Followed my sister's advice of feet up, glass of wine, and some music....
One of two newly elected BSA trustees, Patrick Campbell blogs here about his initial impressions. He's off to a busy start!
Norbert greets me bright eyed and smiling at 11am on a rainy Saturday morning in East London. It is my first meeting as a trustee after being elected and my first time seeing the new BSA offices. BSA HQ certainly won't be winning any office design competitions anytime soon but the small office is crammed full of stammering: books, DVDs, wristbands, motivational posters and t-shirts.
I meet the other new trustee, Jennifer (an SLT from Manchester) and Norbert begins to talk Jennifer and me through the stammering ropes: from a brief history of the BSA to advice for appearing on TV, via charity trust funding. It was an educational and surprisingly interesting three hour lay of the UK stammering landscape. My first General Committee meeting as trustee is in one week's time and without this talk it would have been bamboozling.
The General Committee meeting was perhaps saved from being bamboozling but it was still nevertheless confusing. I walk in as Ian Wilkie is outlining the Employers Stammering Network (ESN) business plan at a preliminary meeting. Ian Wilkie is a senior partner at EY (formerly Ernst & Young). Also at the table are the BSA stalwarts: Norbert and Colin Marsh (40y experience of the BSA between them). Then there is John Evans, BSA chair, and Tim Fell, Managing Director and founder of a major turfing company. I join the table with a welcoming nod from John. Ian outlines his hopes to transform the UK's workplace view on stammering – a man with small aims! Ian's personal story is rather inspiring, in brief he says he realised what you have to say is more important than how you say it in life. Many of you heard it at the Glasgow conference (and if not you can find a great interview with him here: http://www.bbc.co.uk/news/business-22465298).
After a nuanced discussion of the current ability to expand the ESN to more companies without overstretching, Ian bids us farewell. The real Committee meeting is going to begin. Paul Blythe and Jennifer walk in and take their seats. The board review minutes from previous meetings to agree their accuracy. I incorrectly try to second the minutes of a meeting I didn't attend – you can't say I'm not keen! I successfully second the minutes of a meeting I did attend and we're off in to the real meat of the day’s talks.
The effect of the recent cutbacks is reviewed. The finances are still worrisome but stable. During the discussion, the air of the room is palpably tense. The room seems to halve in size and the temperature rises by 5 degrees as money dominates the talks. A bead of sweat rolls off my forehead. Forward progress requires spending but spending risks insolvency – what is the right balance? A balance is agreed and discussion moves on to membership strategies and a bit more on the ESN. The meeting draws to a close after five hours. My input has been limited but it will hopefully grow as I learn and understand more. I also accepted the role of Minutes Secretary. Norbert says it's not a concrete role but merely a formality of the constitution. Smiles all around from the other trustees… I hope it's not some sort of BSA initiation joke, like sending the intern to the shop for a long wait.
Well, that was ISAD2014. This year we didn't have a set piece. Or massive national TV coverage.
But what we did have were many, many people who stammer speaking out, telling the world "You know what? I stammer. It's not always easy, but it's not something I'm ashamed of".
There were so many examples but inspirational highlights for me were the moments when people did something they'd never have dreamt of doing. There was Arthur's journey to appearing in the Morpeth Herald. Kane's talk at his school and his fantastic information sheet. There was Katie's school assembly piece. Nisar running himself into the ground talking to anyone who will listen. The children and young people willing to speak to camera about what stammering means to them. All these pieces of sheer guts and courage, all these big cracks in that Wall of Silence that far too often surrounds stammering.
The BSA Closed Facebook was once again instrumental in offering support, and in cheering people on. Videos were posted and feelings were shared.
And then the larger events - huge thanks to Julia, our fundraiser, who spent 14 hours at Liverpool Street Station and to everyone who came along to help with our ISAD collection; huge thanks to my co-Chair of the Employers Stammering Network Iain Wilkie who took a day's leave to travel to Leicester and talk to Remploy - and the Remploy team who put on the awareness raising event. Many thanks to the team at Whittington Barracks and the Defence Medical Services for bringing together staff from all branches of the armed forces to hear about stammering - it's heartening to see the development of the Defence Stammering Network under Jimmy's strong leadership.
How do we tell the world about stammering? Times are tough, staff is short, and money is tight (please check out and share our ISAD Appeal!). But even if it weren't, the best way to spread awareness is for all of us, in our own way, to tell the world. That can be done via BBC Stoke as Karen did - that's a Big Step! But it can also be done through talking about it to our families and loved ones, or at work, or by posting an update on our Facebook profile. People who stammer talking about their own stammering, how it affects them and what others can do to help - that is authenticity that can't be bought with any kind of advertising budget. To everyone who spoke up yesterday, in whatever manner you did it, thank you very much!