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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.

D-Day

nlieckfeldt | 01.10.2014

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.

 

 

Stammer School

nlieckfeldt | 28.08.2014

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.  

Stammering Community - a conference spirit to keep going!

| 27.08.2014

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.

Julia

After the Conference

nlieckfeldt | 24.08.2014

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.

Poverty

nlieckfeldt | 18.08.2014

Hanging in there. Surviving at times because of that miracle legacy. Being grateful for the generosity of our members. 

Robbing Peter to pay Paul. Making savings. Making some more savings. Cutting into the flesh, now that any fat that ever might have been has been trimmed long ago.

And still, managing to maintain excellent all-round services. Not only managing to maintain them, but developing new ones. Social media presence. Employers Stammering Network. The more I think about it, the more I realise how amazing BSA actually is. 

Question is, where is the end of the line? When will the luck run out, the tight-rope act end, how long is this sustainable, not merely in cash terms, but in terms of the nerves of the people involved? OK, my own nerves. Can't speak for colleagues although they're working their socks off and are fully aware of any worries. Hey, it's a tiny office. Is this how good charities die, not with a bang but with a whimper?

Why am I thinking about this today? Let me tell you about our finance system - it's a bit antediluvian and dependent on a lot of pencil lead and the amazing good will of our volunteer John Perkins who comes in every quarter, collects all the figures, feeds them and the income forecasts into a few spreadsheets and tells me what things look like. So, once every three months I get a good overall glimpse on how the figures are looking.

I'm always depressed afterwards. Every single time. John usually tries to cheer me up and says 'don't worry, something always comes up', or 'it always looks bad and then you tell me there's a pot of money here, or we can shift funds there, and suddenly the figures don't look too bad'. But what if nothing comes up? What if all the pots are empty, and there are no funds to shift?

What's the alternative. More cuts? What ought to go? The information service? The websites? Any outreach? But would any remaining rump then be worth saving?

Why am I telling you this? Well, it may explain why I can sometimes appear a bit distracted. Or not really worried about things that are being hotly debated on Facebook. Or getting a bit ratty when people blithely assume we're rolling in money. Every £ we receive through membership subscriptions, through individual fundraising, through personal donations is so hugely valuable precisely because we seem to spend every £ three times before we finally let go if it. 

Huge thanks to everyone who's donned the fundraising t-shirts. Or swum a mile in uniform. Who's sold cakes for the BSA or raised funds by chucking themselves out of a plane or just by talking to people about the BSA. Thanks to the BSA Supporters who give regularly, and thanks to the members who join in and support what we do. If you're not in one of those categories - make my day and contact Julia, our fundraiser, and see how you can help. A tiny little thing you can do right now is click on the 'care' button at www.justgiving.com/bsa - if we can reach 100 people who do that then we're in with a chance to win £1,000. 

 

 

Social media. Why do we do it?

nlieckfeldt | 13.08.2014

Sometimes it can be amazing. Sometimes it can be depressing. This has been a depressing social media week.

It started off with someone demanding of me that I must publicly dissociate myself from Facebook posts, from people, from views. And if not, well the implication is I'm clearly a vile bigot. I tried to explain that BSA doesn't 'do' politics and that the posts had nothing to do with BSA. I tried to explain that if I were to make a statement on this highly topical, highly contested and controversial political issue the post relates to then BSA would be drawn into an argument from the people on the other side of the fence. My explanations clearly held no water. I will not publicly condemn. Therefore I must agree, ergo I'm in the racist corner. My arguments aren't even noticed any more, only responded to by an arrogant "I'm asking you for the third time...".

Tonight I stand accused again. "Not for the first time" it has been noted that I lack sensitivity, especially in my role as representive of BSA. As it turns out, this relates to a complete misreading of my post, but that doesn't seem to matter. I stand publicly accused of being in breach of BSA's values, quoted as "non discriminatory, trustful, generous spirited, inclusive" - I'm not sure how I have been in breach of all of these, but I have requested clarification offline. It has touched a very raw nerve and clearly stems from painful personal experience - but it is nevertheless all based on a misreading of what I wrote.

Still, we're trustful, inclusive and generous enough to enable people to insult me publicly on a forum which my colleagues and I work very hard each day to be able to provide. At 11pm on a Wednesday night this seems off, somehow. Perhaps it'll look better in the morning.

So, why do it? Why have a Facebook page that's open for anyone to write on? I suppose because we are trusting and generous after all. Why do Steven and I look at it, think about it, respond to posts in the evenings and at weekends? Why does BSA spend scarce resources on having a social media presence?

Because every now and again, something wonderful happens.

Somebody has an epiphany. Someone's shell built up from years of pain shows the tiniest crack. Someone, in Katherine Preston's phrase, allows themselves to be vulnerable and is lifted up by the support they receive. A mum realises talking to other mums that she's doing alright by her child who stammers. Someone comes back to the group and says "I tried what you said I should do, and it worked really well, and I feel seven feet tall". Sometimes, someone even says something nice about Team BSA. And when anything like that happens, that's magic.

Tonight's not that kind of night, though. In the spirit of allowing myself to be vulnerable - you know, it's not nice to think that somewhere in this world there's somebody who thinks I might be a racist. And I know they misunderstood what I wrote but still, someone thinks I'm insensitive, not in tune with BSA's values and that I'm the kind of person who'd tell people with depression to 'snap out of it'. That also upsets me. Why wouldn't it? Sometimes it's easy to forget there's a person on the other end when we're typing away.

Perhaps tomorrow, the magic will be back.

Is this what this blog is for? Honestly, I have no idea. Still, thank you for listening.

 

 

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