blog

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.

Giving Something Back....

Mandy Taylor | 07.09.2015

Some of you will already know me as Mandy from Northern Ireland. However, last summer I made the move across the Irish Sea and now live in Cheshire with my partner Pete and our four children.

I became a Trustee during a very difficult time at the BSA, a time in which we had to cut our staff hours even though demand for our services seemed to increase. However, funding was an ever prevalent issue.

During the last year we have lost two of our longest serving staff due to these cuts.

People are human and they needed more than the BSA could provide and two charities have now gained two very experienced, energetic individuals. As Trustees we wished them well with heavy hearts, but as ever, we look at what is best for them. So Steven and Julia, the very best of luck (not that you need it) in your new positions and I hope they also serve you well.

Steven leaving has left big holes, for membership services, for helpline work, for administration, and one in finance as he was responsible for recording all the monies in and out.

As this is what I do myself, being one of those accountant types, I was lucky to be in the position of offering a bit of my time and so I have now joined the staff for one day a week. Norbert is a hard task master, as that 8 hour day kind of expands and you do not even realise it! However, like every one of the staff at BSA, we are paid for a number of hours but the actual hours worked, well, we do it to give something back.

I am in a lucky position that I can work mostly from home, but I do get to go into The Big Smoke every few weeks to touch base. I obviously had to sadly resign as a Trustee and I will continue at present to do my 'day job' working for a marketing agency in Wilmslow.

So, yes, it will be my good self who now records the ins and outs, drawing up the finance reports and generally keep the Finance Committee of the General Council informed of how the BSA is performing.

So a change of direction for me, yet another path starting, and I look forward to working alongside Norbert, Helen, Cherry, Lee and Allan as well as the numerous volunteers who work so hard to give us all a voice. It was the BSA who helped me find mine and I am very proud that I can now help give something back.

 

Volunteering at the BSA

Amanda Carrington | 02.09.2015

Hello, my name is Amanda and I have been volunteering at the BSA office for four months.  My main role was to update the National Database of NHS Speech and Language Services.

Before I volunteered at the BSA, I came across many individuals who had children/teenagers who stammer. Although I could sympathise, I could not direct them to an organisation that could help them. My role as a volunteer has taught me that information and services are so important, because so many individuals and families are struggling. Receiving the right information and direction can literally change your life: "small keys can open up big doors".

It has been great to see such a great support network for people who stammer, stammerers supporting one another, encouraging one another.  The BSA are a family, and families stick together.  This is important because of the isolation that many stammerers face.

I have personally been inspired by some of the individuals that I have met.  Their stories have been encouraging, and speak of perserverance, and triumph over adversity. In my time at the BSA I learned a lot about people who stammer.  Our stammers are all very different.  However, we may have a lot of things in common such as

  1. hating making phone calls to people we don't know!
  2. speaking in public  
  3. social phobias. 

I have learned about discrimination in the work place through the Employers Stammering Network, and the different type of obstacles that we stammerers face. It has been an education, I thought I knew all there was to know about stammering, I was wrong!

As a stammerer, I feel blessed to have volunteered with the BSA, I have enjoyed it. It has been a priviledge to work with such a lovely team (Norbert, Steven, Allan, Lee ,John etc.)  I would recommend coming to volunteer at the BSA, to help out in the office (maybe even taking over my role of updating the database).  Not only will you be providing much needed help, but I believe you will  be personally impacted by your experience, as I have.

Bye for now!

Amanda

Helen Carpenter, ESN Membership Manager, introduces herself

Helen Carpenter | 28.08.2015

Today is just my second day in the role of Membership Manager for the Employers Stammering Network. I wanted to take the opportunity in my first week to introduce myself, to say how delighted and excited I am to be here and to thank everyone for the warm welcome I have had. 

By background I am a linguist and a librarian, but I have worked for a number of charities and membership organisations, including the Association of Charitable Foundations. I've also co-ordinated projects that relate to supporting diversity and inclusion and managing cultural change. I am particularly interested in issues that relate to people, places and identity. This is my first connection with stammering, so I am looking forward to listening and learning!

I was looking for a new part-time job and first found out about the ESN Membership Manager role from Jan Logan, a speech and language therapist, previously at the City Lit, whom I know not because of her background, but because we have both been going to the same Tai Chi class for a number of years.  It confirms my view that chance conversations can lead in unexpected directions!

I am really looking forward to meeting everyone, and if you'd like to contact me, please do: hc@stammering.org 

Self-stigma: be energised by prejudice and express righteous anger

Patrick Campbell | 10.07.2015

Lionel Logue: “Why should I waste my time listening to you?”

King George VI: “Because I have a right to be heard! I have a voice!”

Colin Firth exorcises the words across the halls of Westminster Abbey. It is my favourite moment of The King’s Speech. It is such an empowering stammering epiphany

King George, to me, is not speaking to Lionel; he is speaking to himself. He is re-claiming his right to speak. A right that he had lost among all of the negative thoughts and feelings he had around his own speech.

“Because the nation believes that when I speak, I speak for them. But I can't speak”, the King laments early in the film.

All this week StutterTalk have been at the International Fluency Association’s 2015 World Congress producing numerous podcasts with experts on stammering research. The episode I found most interesting was with Dr Michael Boyle on self-stigma in stammering. Stigma it seems can come in two flavours. Public stigma is the most recognisable form. The stigma enacted by society on those who stammer: laughing at an individual who stammers, turning them down for a job because of their speech.

Self-stigma is a more subtle form. Self-stigma is the internalisation of the negative opinions of society. It is those moments of holding back on saying or doing something because of a fear about the reaction of others to stammering.

Self-stigma is thought about in three stages of de-valuing ourselves: awareness, agreement and application of stereotypes. The individual first becomes aware of a stereotype about their stigmatised conditions from society (King George realised that those around him believed stammering showed weakness). They then come to agree with that stereotype themselves over time (King George believes his stammering is a sign of his personal weakness) and finally, and tragically, they come to apply it to themselves (King George believes himself unable to be king because he is weak).

To me, this self-stigma is an understandable response to a society designed for fluency, which wrongly and incorrectly discriminates against our natural way of speaking by a thousand cuts: from strange looks, through automated telephone systems up to the “you can’t even remember your own name”. It is no surprise an individual who stammers can come to view their own speech as inherently wrong and that that subsequently negatively affects the course of their lives. And research shows us that this does happen.

In a galling study into employment aspirations of people who stammer in the UK, nearly three-quarters of participants reported that their speech dysfluency meant certain roles were ‘definitely out of bounds, like a policeman, soldier etc’.  One participant explained ‘I had to think about what I could do, not what I wanted to do, 'want' really didn’t come into it'.
This is the tragic end-point of discriminative views of general society on stammering. The person comes to hold themselves back. 

However, research into self-stigma has highlighted a surprising finding: some people “are energized by prejudice and express righteous anger”. Some people with disabilities come to rage against the negative stereotypes that proliferate in society rather than accepting them. They gain in self-esteem rather than lose it. They believe themselves capable with a disability and place blame for any lack of ability with a discriminating society rather than anything inherently wrong with themselves.

King George in that great scene kicked out his old negative self-stigma of his own speech and replaced it with an anger demanding a right to speak.

Perhaps before we begin to change society’s negative opinions of stammering, we too must fight to change how we ourselves think of stammering. Then we can begin to demand our right to be heard.

Stammering and happiness

Norbert Lieckfeldt | 11.05.2015

Tonight, Professor Paul Dolan talked about stammering and happiness. Paul is something of an expert in happiness, having written last year's bestselling "Happiness by Design".

So, I was interested. Paul is an economist and as an economist he asked himself the question ‘why does money make us happy’? You have an input (money) and an output (happiness) but what happens in between, what turns one into the other?

His answer was “attention”. Important to us is only that which we pay attention to. So more money makes us happy while we pay attention to it - but unfortunately, we soon stop doing so.

Why? Our brain doesn't like paying attention - it's much happier running on autopilot because that's much less effort. It’s not for nothing that we use the phrase ‘pay attention’ – there’s a cost to it. But whatever our brain does choose to pay attention to seems really important to us - probably far more important than it actually is. So, the 'trick' of being happy is to focus attention on things that make you happy: spending time with friends, walking in the countryside, listening to music, etc. We are happy through paying attention to things that make us happy; we’re unhappy because we pay attention to things that make us unhappy [terrible simplification on my part, but you get the drift].

So, what is the link to stammering, I hear you ask? Well, stammering is unpredictable. If, as Paul says, we'd be guaranteed to stammer on every sixth word, we'd soon get used to it, and our attention would wander because the brain doesn't like to waste effort paying attention to utterly predictable things. But predictable is what stammering is most definitely not. Unpredictable is dangerous. So we watch out for it, anticipate it – we pay attention.

If the old dictum of "stammering is what we do when we try not to stammer" holds true, well, you couldn't focus more attention on trying not to do something if you tried. "Don’t think of the white teddy bear", said Paul. What are you thinking of right now? See?

It would also explain why secondary behaviours work - for a while. They distract our attention from stammering. Until they become so automated that our brain can stop wasting effort on them.

But I was most struck by the importance of happiness, when I was asked to say a few words at the end about what BSA does. And what I said was that we can't give people fluency. No one can. We can offer knowledge, insight and choice. We can fight to ensure every person who stammers gets the understanding and respect they are entitled to. And we can hold and nurture the stammering community which is a rich source of mutual support and wellbeing.

Not every person who stammers can become fluent. But I believe that every person who stammers has the potential and the right to be happy. And to help that along is, in essence, what the BSA is here for.

The event tonight was a fundraiser in aid of the British Stammering Association and Action for Stammering Children, the charity supporting the Michael Palin Centre. Huge thanks to Paul Dolan, to Chloe Foy for organising it so beautifully, for the LSE for hosting us in such splendid surroundings and to Elaine Kelman of the Michael Palin Centre for her most illuminating questions! Most of all, thanks to everyone who bought a ticket and helped to make the evening a success.

What's happening with the Northern Centre?

Norbert Lieckfeldt | 30.04.2015

The Leeds Stammering Support Centre has been a great success since its inception in 2011 – not just through the delivery and development of service for children and adults who stammer but also by serving as a Northern Centre of excellence and training for many SLTs, both specialists and generalists.

It had many determined and supportive god-parents like BSA patron Ed Balls and the Trustees of Action for Stammering Children, the Speaker of the House of Commons opened the Centre, and it had the enthusiastic buy-in from Leeds Community NHS Trust (LCH) and the Leeds stammering specialists around Trudy Stewart (aka Dr Trudy) - as well as the Yorkshire and Humber Primary Care Trusts who were willing to block-fund the Centre so that clients from all over the region could simply show up on their doorstep and receive help.

Over time, things became more difficult. Primary Care Trusts were abolished and Clinical Commissioning Groups came in so that funding from outside Leeds became more difficult. Expected numbers of referrals from outside Leeds failed to materialise as money in the NHS was getting tighter.

At present, the Centre will continue to offer specialist speech therapy services for adults and children in Leeds who stammer albeit with reduced staffing. Leeds Community Health will remain committed to accepting referrals for specialist services from outside Leeds, though the funding would now have to be in place before they can do so.

BSA wants to see excellence in service for everyone who stammers, and we believe given the cuts we see in NHS speech therapy services that a Northern Centre could serve as a hub to test out different models of service delivery. There are many area in Yorkshire who would never need to refer clients because they themselves offer a great service – but they could still benefit from training or networking opportunities. There are areas without a specialist service which could benefit from a ‘roving therapist’ who attends a local clinic at certain times of the week. The Centre could also be a place to develop telehealth for more remote areas. These are services which, properly piloted, could attract funding from Clinical Commissioning Group

For that to work, we would need an independent review to look at what worked well, and to see what may need be done differently in future. Following on from that, we will need buy-in from NHS providers and commissioners as well as the support of Action for Stammering Children.

We at BSA are hopeful that with a strong sense of commitment and good will on all sides an even better Northern Centre can re-emerge, offering great services for people who stammer, of all ages, in the North of England.

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