Tag Archives: City Lit

Stammering Pride & Prejudice, City Lit, 3rd Nov 2016

I must admit I arrived with a little apprehension, this was the first time I had attended a public event related to stammering. I was aware that I was wearing two hats, as a person who stammers and a psychologist who has a special interest in working with PWS.

The opening remarks by Mark Malcomson were warm and welcoming, there was a real sense of excitement in the room around exploring this novel and perhaps controversial way of viewing stammering. As a psychologist I’ve tended to think about how a person relates to their stammer and the psychological processes that may or may not help in living well with a stammer. Whilst I have an appreciation that the social world we live in will influence this, I had never fully considered that stammering as a problem can be viewed as a socially-constructed phenomenon and so I really was intrigued to learn more about the social model of stammering.

The first talk was by Prof Michael Boyle who is looking at how one might go about reducing stigma around stuttering. This was an interesting look at the stereotypes around stuttering and how these are reinforced in the media. Michael is clearly doing some great work looking at ways to influence public attitudes to stammering. One of the things presented in his research was how people sometimes associate stammering with anxiety and there was the idea that this is a negative stereotype that should be refuted, with stammering presented as something separate to anxiety. I was interested to find that this evoked an emotional reaction in me. As a psychologist, I was struck by the parallels in how PWS are stigmatised in many similar ways to people with mental health difficulties. We are consistently given messages about how we ‘should’ be… whether it be happy, calm or confident. Anything other than these desirable mind states are ‘wrong’ and need to ‘fixed’ or controlled. Those of us who don’t easily fit this, again whether it be disfluency, anxiety, lack of confidence, I could go on… are given the idea, even as children, that we must change this. This can lead to a sense of shame around  normal human experiences and emotions and presents a narrow and limited view of what it is ‘ok’ to be like. My concern with some of the ideas alluded to in Michael’s talk around anxiety as separate to stammering is that we risk reinforcing negative stereotypes around mental health and potentially invalidating the experience of the many PWS (me included) for whom stammering AND anxiety are intimately interrelated aspects of ourselves. Ultimately PWS will have a diverse range of experiences and personalities, so as a community let’s celebrate this diversity.

Next up was a hard-hitting and thought-provoking talk by Katy Bailey. Katy talked about how negative attitudes toward stammering is akin to a person without legs being denied a wheelchair. How we are constantly given the message that to be different is wrong or bad. She recounted her personal experience to highlight how the way that stammering is approached, even within the world of stammering research and therapy, can reinforce this ‘damaged’ narrative. Internalisation of these narratives leads to an internal struggle to control stammering. For me, Katy hit the nail on the head here! Social and cultural norms will tell us it’s wrong or bad when we don’t fit the mould, when you couple this with our problem-solving brains that tell us we should be able to control our internal experiences in the way we can our external world, we end up with the makings of a lifelong, futile struggle to control what can’t easily be controlled. Moreover, this struggle ultimately comes at the cost of pursuing a rich, and meaningful life. PWS often sacrifice important personal values and goals in an attempt to control or hide this part of themselves. These sacrifices or costs will come in small packages, a latte when you wanted a cappuccino, and really big packages, giving up on the dream of a particular career or vocation. Katy highlighted the role of acceptance or letting go of the struggle as a meaningful way forward for her in living with and coming to find meaning in her stammer. As a therapist who teaches acceptance-based therapies (namely Acceptance and Commitment Therapy or ACT) and someone for whom working to let go of these struggles has been so liberating and empowering, Katy’s talk really resonated with me. Moreover, it highlights the need for more work clinically and research on the potential role for acceptance-based therapies (which are gaining momentum in the world of psychology) in working with PWS. Here the move is away from control and towards willingness to experience uncomfortable feelings, such as stammering, in order to move toward values life goals. This theme of self-acceptance was echoed later in discussions between Chris Constantino, Josh St Pierre and Dori Holte, and in Walter Scott’s talk about how his stammering was approached in school.

The rest of day saw talks by Iain Wilkie on the wonderful work he is doing with the Employers Stammering Network (ESN). Iain talked about how it’s to everyone’s benefit if people who stammer can feel more comfortable and able to be open about their stammer at work. Even more, people who stammer bring particular strengths and value to an organisation.

Other highlights included Sam Simpson and Rachel Everard talking about how speech therapy might inadvertently reinforce unhelpful social norms, and the need for PWS to develop a positive, empowering collective identity to be able to ‘live choicefully’. This echoed the conspiracy of silence Iain referred to earlier in the day. Sam and Rachel’s talks brought up the need to educate SLTs in this complex interplay between social, psychological and physical factors that affect how people live with a stammer.

Some light relief from the hard-hitting stuff was provided by Patrick Campbell, Ian Hickey and Nisar Bostan who entertained us with comedy and poetry. The day ended with a bang with Ian leading a reading from an excerpt from one of King George VI speeches. Anyone in the audience who was, as Ian beautifully put it , ‘lucky enough to stammer’ was invited to join in. Such a moving end to the day and truly put meaning to the idea of pride in stammering.

I’m so grateful I was able to be part of this day, I feel sure that these ideas are the start of something really important in changing and challenging how we conceptualise stammering both for PWS and crucially for the therapists working with them. Sam said it when she said PWS are best placed to challenge the status quo, from the inside AND I know therapists can play such a powerful role in empowering people to find the courage required to do this work. Let’s get to work!

 

Lorraine Maher-Edwards
Email: lorraine_maher@yahoo.co.uk
Twitter: @LorraineEdwar

 

Stammering activism and speech and language therapy: an inside view

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This month Sam is guest blogger for the Did I Stutter? Project – you may read her blog here

Reflections on my first BSA Conference: inspiration, connection, courage and community

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A week later and I am still feeling buoyed up by the positivity of the British Stammering Association’s National 2014 Conference, held in association with the Scottish Stammering Network in Glasgow. I was not sure what to expect as I made the long train journey north on Friday 22nd August, arriving just in time to attend the City Hall drinks – a grand and fitting social event to mark the beginning of the conference.

Conversations flowed as readily as the wine – with old friendships quickly renewed and new friendships founded. I was struck by the warmth, energy and harmonious chatter as the evening progressed – and which set the tone for the rest of the weekend. People mixed and mingled freely at mealtimes, between presentations and late into the night. It soon became apparent that the social aspect was an integral part of the conference’s success for many of the delegates – as the early morning photos at George’s Square clearly testify!

Significant highlights for me included:

  • Iain Wilkie’s keynote on ‘Transforming Employability’. Drawing on research highlighting employers’ ignorance and misunderstanding of stammering, Iain outlined the evolution of Ernst and Young’s ‘Stammering Network’ since its inception in 2011, which led to the launch of the ‘Employers Stammering Network’ (ESN), a BSA supported initiative, in 2013. Combining personal and corporate narratives interspersed with thought-provoking quotations, Iain advocated a cultural shift towards diversity and inclusiveness underpinned by flexible support processes involving the shared commitment of both employers and employees. To this end he invited all present to open up dialogues about stammering at work in the understanding that ‘there is no courageous conversation without vulnerability’. More information can be found on the BSA website: www.stammering.org/help-information/professionals-and-business/businesses/unlocking-talent-employers-stammering-network
  • Co-presenting with Katy Bailey (www.free-speech.org.uk) on the relevance of the social model of disability for stammering and employment. Relocating the problem of stammering in society and offering participants a chance to identify the physical and attitudinal barriers experienced in the workplace enabled us to explore how prevailing norms, language and stereotypes can go unchallenged and become insidiously internalised. Practical ways of managing these oppressive external and internal barriers were then discussed. Here is our handout if you are interested in finding out more.
  • Dr Allan McGroarty’s reflections on ‘Dr Quack and his stammer cure: quick fixes, bogus treatments and charlatans’. An amusing and informative review on how to spot a ‘Quack’ following the growth of the Internet and social media. Allan concluded by reflecting on the important role that the stammering and professional communities need to play in questioning and challenging false claims about stammering therapy in the public domain.
  • RSM Jimmy Lang’s motivational speech on ‘Reaching the Top’. The sheer grit, determination and resilience that Jimmy has applied to progressing his career in the army are truly impressive. Furthermore, his willingness and commitment to using his experience and influence to benefit others has resulted in the Defence College of Health Education & Training (DCHET) joining the ESN and developing clearer systems and support processes for other military personnel who stammer. Jimmy’s personal story offered a direct and powerful challenge to the ‘why try?’ effect often reported in the research (Corrigan et al., 2009; Boyle, 2013) due to the internalisation of public stigma. Exposure to Jimmy’s encouraging and constructive ‘can do’ attitude was particularly timely for the student I sat next to, who was contemplating a career in speech and language therapy and questioning the implications having a stammer would have.
  • Convincing reports on the BSA impact at the AGM, with a persuasive video testimonial on the successful Facebook page, underscored the need for greater involvement in fundraising in order to safeguard the future of the BSA: “Ask not what the BSA can do for you, ask what you can do for the BSA!”
  • The Gala dinner at the spectacular Science Centre followed by a highly entertaining impromptu exploration of Glasgow’s nightlife.
  • Bob Adam’s and Trev Bradley’s dynamic, engaging and practical workshop on ‘staying safe on the streets’ – a salient reminder given the unfortunate mugging of one of the conference delegates in the early hours of Sunday morning.
  • The infamous ‘Open Mike’ session where delegates queued for the entire 90-minute session to speak out in front of the bigger group – many for the first time, some to share their conference reflections, others to signpost a helpful resource (e.g. the Opening Doors employment course run jointly by City Lit and the BSA) and one person to get some practice in before his daughter’s wedding later this year!

A heartfelt thank you to everyone who made the 2014 conference possible, especially David Lilburn and John Mann, and to everyone who came and contributed to such a lively and memorable weekend.

In the online feedback, I was set the task of capturing the essence of the conference in four words. They would have to be: inspiration, connection, courage and community.

The next BSA conference is scheduled for 2016 – I’d highly recommend making a note in your diary now!

Sam

Boyle, M. (2013) Assessment of stigma associated with stuttering: Development and evaluation of the Self-Stigma of Stuttering Scale (4S). Journal of Speech, Language, and Hearing Research, 56, 1517-1529.

Corrigan P., Larson J. & Rusch N. (2009) Self-stigma and the “why-try” effect: impact on life goals and evidence-based practices. World Psychiatry, 8, 75-81.

 

 

Therapy in Waterstones

Behind most books lies a tangle of anxiety about perception, rejection and word-choice. So the laden shelves of Waterstones in Teddington seemed a perfect backdrop for the local launch of ‘Stammering Therapy from the Inside – New Perspectives on Working with Young People and Adults’. Like publishing, the event pulled together an array of knowledge, experiences and feelings into full public view: therapists, people who stammer, people who don’t stammer. To my left was a man who, like me, knew the authors through therapy. To my right was a father whose son stammers; he had dropped into the shop out of curiosity. Elsewhere in the audience was Norbert Lieckfeldt who for many years has campaigned as head of the British Stammering Association. Speech therapy, whether private or in groups, is so easily hushed away like an embarrassing medical operation. The King’s Speech helped slash the stigma and fuel media interest, but hearing Sam, Carolyn, Rachel and others talk publicly about the evolution of their work seemed to take this one step further – from screens and newspapers into real-life.

Over many years I have been inspired by all three
authors at various stages of therapy. This event was a
reminder that I have struggled to communicate to
others what this therapy has been all about. For all they know I’ve been star-jumping and balancing
marbles on my tongue, like Bertie under Lionel Logue’s instruction. I suspect they are unaware of the
emotional mechanics at play. It was provoking to hear two people talk publicly about their own therapy. As Yahoo’s head of retail, Dan Durling has to (in his own words) ‘talk a lot’. He had at first approached his intandem therapy with frustration, wanting not to ‘talk’ about his stammer but just get a cure. It had taken him some time to realise that his friends and colleagues actually cared much less about his imperfect speech than he did. This was an important step in his journey toward acceptance and modification.

Similarly Cara Steger, an amateur violinist, in a display of ‘therapy in action’, talked of her struggle with the passive-sounding idea of ‘acceptance’. By contrast Cara had been used to a physical struggle in trying to be fluent. She compared her speech to learning the violin. The initial controlling impulse is to grip the bow tightly, but with learning and hard work comes a realisation that a lighter touch produces a better sound from the instrument. That had felt similar to learning to work with, not against, her stammer. It is rare that I hear other people stammer, and ironically I find it difficult when I do. Dan and Cara were largely fluent as they spoke, but where they did stammer I felt initial frustration for them, before focusing on the content of what they were actually saying. I wondered if others went through a similar process, and I reflected this might be how people feel when I speak.

Stammering is complex, uncertain and serially misunderstood. There is much to be gained from opening up a traditionally internalized experience, against our media backdrop of polished fluency and rapid delivery. For communities, schools, employers or whoever else, perhaps poignant local events like this are the way to go.
Walter Scott

Living well with stuttering

To celebrate International Stuttering Awareness Day on Tuesday 22 October 2013, Selena Donaldson, speech and language therapist for The Fluency Network at The University of Auckland hosted an informative breakfast seminar. This seminar featured a pre-recorded question and answer session with Sam Simpson and Rachel Everard, two of the co-authors of ‘Stammering Therapy From the Inside’. This event marked the opening of The Fluency Network at The University of Auckland, New Zealand’s newest service for people who
stammer.

Sam and Rachel introduced the concept of ‘living well with stuttering’. They discussed the idea of therapy supporting living with stuttering in a more comfortable way and deconstructed the common misconception that stuttering is something that has to be ‘fixed’. Sam and Rachel acknowledged that there is a range of approaches to stuttering therapy, and that the therapy process parallels a journey, in which a person may try different things at different points in life. They emphasised the importance of being transparent with clients about the type of approach taken, and the theoretical base behind it. Rachel stated from her own personal experience of stammering that although there are useful fluency shaping techniques available, those techniques can be difficult to apply in practice, unless the person becomes more open and accepting of their stuttering.

During this seminar, Sam and Rachel also spoke of self-disclosure. They emphasised the importance of not viewing stuttering as something that needs to be hidden, and promoted the value of stuttering being acknowledged by family and friends. They also emphasised the speech and language therapists’ role in offering clients a flexible model of therapy to help clients on their journey towards self-acceptance. These were concepts I have recently explored with a client at the University of Auckland Fluency Network Clinic. My client was interested in fluency shaping and the freedom approach to stuttering as well. Self-disclosure proved to be a highly powerful tool for this client, who was initially apprehensive about self-advertising and voluntary stuttering due to his past negative experiences. Having independently decided to self-disclose in a group situation outside of the therapy environment, he reported the experience to have been positive, stating, “the stutter doesn’t define me”.

It was wonderful to hear from Sam and Rachel, across the world, on International Stuttering Awareness Day, and to open the University’s new service with their astute and holistic clinical reflections.

Irene Yap
Master of Speech Language Therapy (Practice), final year student
The University of Auckland

Book launch

Launching ‘Stammering Therapy from the Inside’
9th May 2013 at City Lit and the House of Commons

Over 120 people who stammer and speech and language therapists gathered at City Lit for a day of talks relating to some of the key themes from the book. Trudy Stewart kicked off with an inspiring personal analysis of the therapeutic relationship using the metaphor of a bridge to depict key variables that influence the unique structure and form of each alliance as well as the qualities that both architects (the client and therapist) bring to the construction process. St John Harris followed with a thought-provoking and eloquent exploration of the social model of disability using the film ‘The King’s Speech’ and his own experience of stammering and therapy to illustrate (click here to read). Finally, Carolyn Desforges and Richard Seals concluded the morning with a passionate demonstration of the value of therapist/client collaboration in maintaining a specialist stammering service within the current NHS.

After lunch, Carolyn Cheasman briefly spoke about the genesis of the book and some of her own personal highs and lows during the editorial process; and I was able to pay tribute to the many therapists and clients, both present and absent, who have influenced my professional development, fuelled my interest in stammering and inspired my philosophy of therapy. Next, the Right Honourable Ed Balls, who contributed to a chapter in the book, gave a candid and humorous account of his experience of therapy and the process of ‘coming out’ as a person who stammers in the public eye. A personal reflection by Willie Botterill followed, highlighting the key influences that have shaped her approach to therapy and career. Finally Katy Bailey brought the talks to a close with a frank exploration of some of the challenges and intrinsic contradictions of stammering therapy that aims to promote fluency and acceptance of stammering (click here to read). Following Walt Manning’s summing up, this inspiring day ended with a reception at the House of Commons to launch both the book and the Employers Stammering Network.

Here are some photographic highlights:

Book launch
Myself, Dan Durling, Ed Balls and Jan Logan celebrating our co-authorship of the chapter on 1:1 therapy at City Lit
Co-editors Carolyn Cheasman, Rachel Everard and myself with City Lit Principal and Chief Executive, Mark Malcomson at the House of Commons
dusk

What a truly momentous day!

Sam

The House of Commons at dusk

Stammering therapy from the inside

‘Patience is bitter, but its fruit is sweet’
– Aristotle

As some of you will know, I have been involved in editing a book on co-authoring stammering therapy knowledge with Carolyn Cheasman and Rachel Everard at City Lit over the past few years. My first foray into the world of publishing books, it has been an adventure that has taught me a great deal about patience. The idea of the book – to provide people who stammer and their therapists with a shared platform to reflect on their different experiences of stammering and therapy – originated from discussions Carolyn and I began back in the early 2000s. At that time we struggled to find a publisher who considered client and therapist accounts to be valid evidence. Thankfully attitudes have since changed and, over a decade later, our determination has paid off as the book was finally published this month:

 

 

 

 

The collaborative process of editing has been both predictably and surprisingly time-consuming; a journey, marked interchangeably with highs and lows, that has required considerable resolve, good humour and willingness to compromise. Despite or possibly because of this, I have found the experience deeply engaging and satisfying. I sincerely hope the final publication serves to inspire both therapists and people who stammer to continue to collaborate and extend the boundaries of thinking about stammering therapy.

‘I alone cannot change the world, but I can cast a stone across the waters to create many ripples’
– Mother Teresa

Yalom (2008) first drew my attention to the phenomenon of rippling. The value of listening, bearing witness to and learning from the stories, wisdom and expertise of my clients is precious to me, and the idea of passing the importance of this on to others has provided the personal meaning, commitment and perseverance to see this project through to its end. I hope the book illustrates the significance and potency of listening to those central to the therapy process, yet who all too often remain unheard. The integration of client and therapist perspectives invites a paradigm shift, where insider accounts are included not simply as an adjunct, but as a robust, integral source of information in their own right.

To mark the publication of ‘Stammering Therapy from the Inside: New Perspectives on Working with Young People and Adults’ there will be study day at City Lit on 9th May 2013 focusing on several themes from the book. The Right Honourable Ed Balls MP, Shadow Chancellor of the Exchequer, will be speaking at the official launch of the book at lunchtime. Having contributed to one of the chapters in the book, he is also hosting a second celebratory event at the House of Commons later that evening. I cannot help but smile with continued disbelief at the thought of marking the publication of this book in such a way. It seems incredible, when I think back to the early discussions about the book with Carolyn, to consider how small ideas can be sown and in time grow in such surprising and unpredictable ways.

Sam