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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!
And here we are, 1 October. That came round rather sooner than I thought it would.
The cuts have taken effect and today I'm on my own in the office. Time to think, and to finish my presentation tomorrow at Citigroup.
Or perhaps not? A call about mentioning stammering in your application, and a parent of a little girl who's started to stammer. And an SLT updating her service's address. Limiting helpline hours doesn't work, they just call the office line! The meter reader came round, looking for the key to the meter cupboard (gone AWOL - the key, not the cupboard), and a potential funder wanted information about how many enquiries we get from Essex - asap, please. Been quite busy, really. The bank manager left a message and wants to talk with me (uh-oh) - I think it's just an unusual transaction they want to query. Time to make lists. Haven't looked at my emails at all and it's already past lunchtime.
It IS possible to get through normal, expected things. But I'm worried about the unexpected, and about loss of opportunity. I've been asked to do a Skype presentation in November - is this crucial? ITV are coming back trying to organise a TV appearance on the morning sofa. Do I have time for that? I've got an email from someone who lays out her approach to stammering therapy in great detail; it's quite interesting, you can feel there's some insights around the edge that could lead to more. Do I have time for that? "Norbert, will you write something about the cuts for our magazine?" Do I have time for that?
We've had such lovely feedback and so many offers to help out and volunteer - thank you everyone. Bear with us, I need some space, we all at BSA Towers need some space to see how things settle around us and see what help we need. The Facebook group is off to a splendid start, with people volunteering to moderate.
Even on a lonely day in the office (I really need to get some speakers for my PC) I firmly believe we've taken the right decision - though I may slightly waver in my conviction next payday. After yet another helpline call from a Mum, this time from Walthamstow, we just don't have the right to risk BSA and all of our services on the assumption that our luck will always hold.
Well. That was powerful and emotional stuff.
I liked how the programme made it clear how debilitating a severe stammer can be. How limiting. How distressing. There's no such thing as 'just a stammer'. "I'd rather lose a limb" says Vicky Croft who lost her fluency following a stroke only eight months ago when before she'd been 'the life and soul of every party'.
It is so clear that change can only come when there is the courage to make yourself vulnerable. To look at yourself just the way you are, and let others see you just like that. The temptation to hide, to give in to fear can be overwhelming. There's great risk, personal risk. But clearly also great mutual support. You're not alone, not on a McGuire course, nor in the stammering community as a whole, should you choose a different path.
Talking, as Musharaf says, means to show the world who you are - this is the time in his life where he finds his own path, carves out his own niche and discovers with others who he is and who he wishes to be. But when speaking is hard, how can you do that? If you can't share of yourself with the world, where are you going to fit? We saw powerful emotions from loved ones and family worried about limited futures.
As always, and perhaps inevitably, the programme didn't focus on the hard work after the course. Maintaining the technique, keeping up the courage to change and be vulnerable, takes a lot of effort and a lot of support. I often felt it is the post-course support that marks approaches like the McGuire Programme and which is crucial to their success.
Accepting stammering, as was said elsewhere on this site, doesn't mean resignation, and it doesn't mean 'accepting the unacceptable'. If I were Musharaf, I'd find my speechlessness unacceptable. The only question is how to go about changing it.
Stammering shapes us, depending on our temperament, our experiences and our upbringing. We all arrive at this point, the point of "something's got to give, something has to change" in a different mould. And so there's no one size fits all. As a person who stammers, McGuire isn't for me. That's down to my temperament, and perhaps (if I'm honest) also to the luxury of no longer being a severe stammerer. But then, vocal fold management, or block modification, soft onset or mindfulness aren't really for me, either. However, speaking both personally, and as someone who's responsible for the UK's charity for stammering, I'm glad the option is out there for those like Musharaf to make the most of it.
This week, our BSA staff is back in the office. We're only a small staff, so a lot of our 'out reach' work, like the BSA conference, is dependent on a small and mighty dream team of loyal volunteers. A few members of that dream time, (which is open to anyone by the way), are David Lilburn and John Mann. Last year, I was able to spend the day with David and John as they jumped out a plane for BSA (!) So, this past weekend it was nice to see them in passing as they were flying around, albeit in a very different way, making sure everything ran smoothly.
The topic of the conference was Employment, which at first I thought may exclude or disinterest some people. However, my negativity was definitely overruled as I saw how it helped to bring everyone together a bit more. Usually at conference the stammering community comes together, but the different therapy approaches sometimes clash. Everyone who stammers is different, and different approaches suit different people. In the past, I saw that there was sometimes a weird rivalry of 'us' and 'them.' But this year, it seemed more communal, more positive, like everyone was coming together with a common purpose - perhaps to fight discrimination against disability, or to learn about public speaking, or to hear Iain Wilkie's keynote speech which featured lots of information about the Employers Stammering Network (it also included quotes like the one from Robert Frost's poem, "The Road Not Taken." One of am favourite poems)
Anyway, it just seemed a bit calmer and positive with everyone, no matter what their approach or view, coming together. One of my highlight as the BSA fundraiser, a former support group organiser, a McGuire coach and a workshop leader was seeing Debbie (who will be featured on Stammering School on C4 tomorrow night) standing up in front of the lecture hall and expressing her thoughts on social and supportive groups.
Personally, this conference, for me was a bit more stressful. Insomnia doesn't make me very chatty. But, at the same time it was lovely to see old friends and meet all those Facebook group faces I've seen in little pictures! Erin and Ruth from the Women's Facebook Page, who I chatted with on Friday night, were just as lovely in person as they seem online. All in all it was another fantastic conference, and we should be proud to be a part of this great charity, that really is being the change we want to see in the world.
I've sort of lost the thread of what I was saying, but, I hope we can keep the positive, communal momentum going in the future. The BSA needs you to help us in doing this just as much as you need us to have a place to get together to speak out about stammering.
So, here I am. Just in Darlington on the train home. 2 full days of Conference. 100+ residential visitors. 60+ day visitors on Saturday. As always, I'm knackered but happy. Not quite as knackered as the folk opting for the late night "Ordering Drinks and exploring Glasgow" workshop, but still.... Impressions? As always too little time to talk to anyone properly. Hugely grateful to David and John. They pulled off an amazing event. Professional. High quality. But also warm and friendly. Creating a safe place to dare and be vulnerable, to be authentic, to test out new things and to experience that the fear before the Conference was something worth facing down. This in my experience doesn't happen by accident - but hard work and excellent planning help! The Open Mike session - brilliant as ever. Actually, better than ever, because for 90 mins people queued up to have a go in front of everyone. Tales of courage, tales of "never done this before", Jimmy encouraging them with his parachuting analogy (must have helped though I'm terrified of heights :-)). Simon arriving determined to go to the front for the first time in nine Conferences and so he did. Clare from Doncaster telling the Director of the EHRC Scotland *exactly* what discrimination for stammering looks like - breathtakingly shocking. Iain's keynote on the Employers Stammering Network. The fantastic evenings at City Hall and the Science Centre. Sitting next to David at the Gala Dinner who, if there had been a competition for Happiest Man in Britain that night would easily have made the top three. Being able at last to publicly acknowledge Jan Anderson's immense contribution to stammering self help in Scotland. Seeing our founder Sparrow who just received an MBE for his achievements. Great reports on BSA's impact at the AGM by all my colleagues. Great testimonial on video on the success of our Facebook page. Great to see the Scottish Stammering Network in full swing. Here's to their Glasgow Open Day on October 4th! Thank you to everyone who came. You're inspirational. Thanks to everyone who made this day possible, the team, the volunteers, and especially John and David. A special thanks also to my colleagues and BSA's Trustees, old and new. It is good to be reminded about why there simply has to be a BSA, and what it takes to keep it going. Further blogs perhaps later. Just wanted to get this off my chest.