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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.


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.


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 - 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.



The Run-up to Glasgow

nlieckfeldt | 11.08.2014

This is my least favourite time before the Conference starts. It’s the counting of heads, it’s the sorting of meal choices, it’s making sure everyone has a bed. Ledgers. Spreadsheets. Thankfully, Steven is dealing with this in an exemplary manner. I just have to learn to let go and have faith!

Every time I tell myself not to get stressed, and I never manage. I worry. I worry until everyone has arrived on Friday, everyone’s got a bed, and I see them all in the same room talking to each other. There’s always such a buzz that I can’t hear myself think. Only then I relax.

But you know what? I get paid to be stressed. There’s a bunch of volunteers, especially David and John, but also the folk from the Scottish Stammering Network and many others, who are working their socks off. They’re working to offer an excellent programme; to make sure we’re not running at a loss (fingers crossed), and to make sure everyone’s going to have a good time.

So far, on Saturday, we’re already looking at more than 130 people attending. You can still come along, either just as a day visitor or you can still book for the two nights. Just follow the link for more information and to book.

If you do decide to come along, I don’t know what you personally will take away from the experience. Everyone always seems to have such a good time; ‘inspirational’ is a commonly used phrase. For some, it can be a life-changing experience. Me? I already look forward to my train journey home on Sunday, because I know I’ll be knackered but fired up, enthused and happy.

Liberate us from acceptance?

nlieckfeldt | 30.07.2014

A few things have cropped up recently that made me think about acceptance of stammering. We're often told, certainly as adults who stammer, to 'accept our stammer'. Accept the fact that you stammer. Perhaps even embrace it? But what does that actually mean?

For some people who stammer, accepting their stammer appears to mean resignation. For them, it means accepting the inevitable, accepting that nothing can be done. It means giving up in the face of this Thing that makes our lives hard, and more difficult and - at times - miserable.

"Far from it!" say those who believe in acceptance. Acceptance means finding peace. Letting go. How can you change, if you don't accept where you are? Don't chase the Fluency God, because this is not who you are.

But then, acceptance for many may be a therapeutic choice, ironically with the desired side-effect of increased fluency - the less stressed we are about speaking, the less likely we are to stammer.

After reading Clare Butler's research on "Wanted - straight talkers: stammering and aesthetic labour", and attending the Social Model of Disability workshop at the Oxford Dysfluency Conference (ODC) this July, I've been wondering if 'acceptance' is the right term for what we're looking for? Does it miss the problem, create unnecessary division and a dichotomy that doesn't actually exist?

Here goes nothing, getting ready to get shot down in flames! :-)

Clare's research, interviewing 36 adults who stammer of all ages about their employment experience, highlights one thing very clearly - people who stammer often 'own' the misconceptions and prejudices that people who don't stammer have towards us. We actually often believe we're less capable. We often believe that stammering is shameful and embarrassing. We know we're often not really listened to when we stammer, and we often believe that that's understandable and right. We believe we must be fluent to communicate well, and it has been made clear to us in a million little ways since we were little children that we're not really good at this thing called communication. Feeling that difference, feeling the pressure, the people she interviewed often believed they had to go beyond the normal call of duty, had to develop extra skills, had to be seen to be especially committed - in her words, expending 'emotional labour' to make up for a perceived shortcoming.

The workshop at ODC gave me a term for this - internalised oppression, defined in Wikipedia as "the manner in which members of an oppressed group come to internalise the oppressive attitudes of others toward themselves and those like them" who come to "hold an oppressive view toward their own group, or start to believe in negative stereotypes".

So, how about instead of splitting into the Fluency Camp and the Acceptance camp, we all decide to throw off this oppression and stop believing all this rubbish about us as people who stammer?

Because once we know these truths, that what we say has value, no matter how we say it; that we can be excellent communicators; that what we are is worth no less than anybody else, then it becomes immaterial if we choose to work on fluency because life's just easier that way and we're not doing it to hide, or out of shame; and it is equally ok to decide not to go down the fluency route because what I say is worth listening to, however I say it.

Therefore, let’s be liberated rather than accepting!