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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.

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.

 

 

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!

Being Proud of Stammering and Fundraising

jammon | 22.07.2014

Stammering and Fundraising. These are two things I know a lot about, and very little about - all at the same time.

You see, I’m a person who stammers who works a fundraiser.

Moreover, I’m a person who stammers, who is the sole Fundraiser for the UK’s national charity for all those affected by stammering. Oh my, that looks as full on as it often feels.

I was going to start off the first fundraising blog by by preaching, or teaching about fundraising.

But I think that may have to wait.
I think I’ll just keep it simple.

Stammering is hard – some days are tough, there are sometimes massive challenges.

And you know what else?

Fundraising is hard – some days are tough, and there are sometimes massive challenges.

In both, sometimes things go to plan and sometimes they don’t. Often you’re just trying to cope with the next day, the next week, the next month, the next year.

On the flip side, sometimes...

Stammering is inspirational, brave, fun and exciting. In my opinion, when the days are good and the practice and positivity pays off, stammering can seem like a blessing. A unique challenge that not everyone has to face – something wonderfully us that belongs to only 1 in 100 people!

And you know what else?

Fundraising is often inspirational, brave, fun and very exciting. When the good news comes in, and you receive the cheque, and the project is underway- it feels like the best job in world. A unique challenge that not many people face in their day to day lives - a job that helps change lives through money!

So, that’s why I’m proud to be both, a fundraiser and a person who stammers. It's a fantastic journey, well most days anyway!

There is no stuttering brain?

nlieckfeldt | 21.07.2014

The Oxford Dysfluency Conference which ended yesterday started off with a presentation by Prof SE Chang from the University of Michigan talking about her findings of "Subtle differences in brain network connectivity in children who stutter".

Now, to understand that, you'd first have to appreciate the enormous achievement of making 90 children, some as young as 3 years, lay still in an MRI scanner. If you've ever been in an MRI scanner you'll know that movement of a few millimetres either way can invalidate the readings. It takes about 40mins per reading, and it’s quite noisy so potentially very scary and very boring for the children who have to be awake and alert. She and her team managed with a significant amount of pre-scan work desensitising the children to the sudden loud noises, and hand-holding during the scan. And videos!

This research is important because without it we wouldn’t know if the previously observed differences in the brains of young adults and adults who stammer are the potential cause of stammering, or merely the way the brain adapts to many years of stammering.

Just as in studies with older people who stammer, Professor Chang has found significant differences in the amount and structure of white matter in certain part of the brain that connect different regions which are essential for an effective delivery of speech. White brain matter is the 'cabling network' that allows different regions of the brain to relay information between each other and coordinates them.

To me, this seems to finally settle the question whether we stammer because our brains are different, or whether our brains are different because we stammer. It also opens up the way for new forms of therapy, yet to be developed, which may combine speech therapy with rehabilitation methods which encourage the development of neural connections.

I was particularly interested in her message to people who stammer who find the idea that their brains are different difficult to adjust to. It can sound like we’re ‘abnormal’, or it can sound like stammering is an unavoidable fate and nothing can be done, none of which are true.

My feeling has always been that these differences are very subtle, and in the normal range of brain differentiation – perhaps in the same way that some people are really good at spatial awareness while others aren’t. If this difference were in regions of our brain that control less complex functions (eg walking) I suspect no-one would ever notice the difference, but because speaking is the most complex function the brain needs to fulfil, even subtle differences can have a significant and noticeable impact.

Professor Chang agreed, but added the following two comments: the difference we have seen are differences in the brain matter relating to connectivity between regions of the brain. Speaking as a brain function is heavily reliant on the smooth cooperation between a significant number of regions of the brain so is especially susceptible to disruption. And she made it clear that these are group findings, not individual ones. It is simply not possible with current technology to look at a brain of a single child, or a single adult, and determine whether that person stammers or not. However, even today she states that individual results from boys (not girls) who stutter showed values that were entirely different from the control group and may possibly be used in future to reliably identify stammering in a child. Professor Chang urges caution but hopes to have results soon.

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