Category Archives: Inspiration

Judged Response

One afternoon, whilst speaking to my closest friend Errin Yesilkaya, we wanted to do something. Just something. An exhibition sprung to mind, then I must have stammered shortly after this revelation. There we have it. Judged Response, an exhibition which places explicit focus on stammering, celebrating the differences of those people who stammer, demonstrating these differences and challenges through the medium of art, which has no boundaries, as you are not bound by what you can utter. The visual nature of the artistic medium allows for freedom of expression which people who stammer may struggle with otherwise. This was our idea and vision.

Errin and I brought Shahram Saadat on board as a person who stammers. After many meetings, we decided on our idea and proposed this to Arts SU, the Student Union of University of the Arts London where we all study BA (Hons) Photography at London College of Communication (LCC). We were successful in gaining an exhibition space at LCC, thus then our creation and curation of the exhibition began.

Our motivation for this stammering and art fusion was primarily the fact that stammering has not as such been greatly presented in an artistic context. This exhibition would be an accessible way for anyone, someone who stammers, someone who has knowledge of stammering, or ideally, no knowledge at all of the complexities of stammering to engage with the day-to-day struggle of speech. Ideally, this exhibition would be as public as possible, detached from the white space of the gallery and firmly placed within the public domain for maximum impact and a realisation from the public that stammering is a challenge and not something to be mimicked, laughed at or perceived as a weakness.

Audience and raising awareness was a key reason for us curating an exhibition of this nature. Stammering is something which is talked about, however, while it is talked about, it is not an easy subject to be public about due to the sensitivities of the subject matter, the differing views and effects it has on people who stammer, so any kind of public exposure of stammering has to be carefully, ethically thought through. Art, to some extent, has no limits, it is the artist’s personal perspective, not those of an organisation, so it has the potential to accurately represent (particularly if the artist stammers) the insecurities, strengths, niggles, that stammering brings up.

The three of us each exhibited a work of our own (I was the odd one out, presenting two), all communicating varying themes and aspects of the nature of stammering. Errin’s piece, £137.80, speaks for the way in which our consumerist culture may view people who identify themselves as having a disability are viewed within society. Shahram’s piece, Appropriated Reactions, focuses in on the facial expressions a person who stammers may experience when speaking with someone. My works, Subtitled Liberation and We Judge Because We Don’t Understand, through text in a physical and video sense, provides a liberating, anonymous, fluent opportunity for multiple people who stammer to express their true emotions about the struggle of having a stammer.

The Private View was extremely well attended by people who stammer, friends of those who stammer and people with no connection to stammering at all. Pertinent and important discussions were also held over an exciting, engaging Q&A session with the exhibitors plus Claire Norman, Founder of the Stammerers Through University Campaign (www.stuc-uk.org) and Tim Fell, Chair, British Stammering Association. Overwhelmingly, the most common phrase uttered to me during the night was ‘this is the start of something’ or similarly ‘you’re onto something’. Of which, I agreed with everyone who said this to me. This is the mission I’m on, to show the connection between stammering and art, through a number of mediums, to ultimately affect public opinion.

We are keen, as a collective, to develop a more ambitious exhibition, extending on the ideas raised in Judged Response, perhaps being more interactive and immersive. Watch this space.

 

Rory Sheridan

e) photo@rorysheridan.co.uk
w) www.rorysheridan.co.uk

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

 

Supervision keeps us awake!

I have been fortunate in my career to have some really excellent supervision, but all too often I hear from colleagues that the service they work in does not offer quality supervision. I regularly hear that for many it becomes a tick box managerial function, concentrating more on the doing of therapy rather than the being or becoming a therapist. Yes, we need to have time to check on whether we are using the right procedures, we need affirmation that we are abiding by the right policies, but this should not form the main focus of supervision sessions. I have found it helpful when supervising colleagues to devote some time in each session to the doing, i.e. the day-to-day activities of the job, but to ensure that there is enough time to talk about the being and becoming, i.e. to explore our emotional and psychological responses to our work and how the work is affecting us. Geller in Fourie (2011) rightly says that “attention to the affective and intersubjective aspects of clinical relationships has been neglected in speech-language pathology” (p. 197).

We encourage students at the Universities at Medway programme to use reflection from day 1 to explore their feelings about their experiences in becoming a therapist. We need time to explore our emotional responses and reflective writing offers a chance to do this. In professional contexts we could learn so much from colleagues in psychology about issues related to transference and countertransference. One particularly useful session I recall was where I was encouraged by an experienced supervisor to unpack the feelings that had been aroused by working with a family where there were bereavement issues, which in turn had awoken emotional responses in myself. This allowed me a safe space to reflect on my role with this family and to make me more aware of my own responses.

Nicky Weld’s book on transformative supervision for the helping professions has been very influential for me. She points to a fear of people having emotion-based conversations in supervision for fear of not being able to manage what comes forward. This lack of acknowledgement of our emotional responses can ultimately lead to a risk of burnout. In the context of ever-reducing funding, I would urge colleagues to ensure that quality supervision is provided and that time is made to attend to creating, through supervision, a safe, protected environment for learning, personal and professional development without which we will stop growing. Ryan (2004) says of supervision: “It wakes us up to what we are doing. When we are alive to what we are doing we wake up to what is, instead of falling asleep in the comfort stories of our clinical routines” (p.44). Let us stay awake and not fall asleep on the job by falling back into familiar routines. Supervision can help us unpack received wisdom.

photo-feb-2016

 

Jane Stokes
Senior Lecturer, Speech and Language Therapy
Faculty of Education and Health
University of Greenwich

 

 

 

 

See further reading:

Geller E. (2011) Using oneself as a vehicle for change in relational and reflective practice. in R. Fourie (ed) Therapeutic Process for Communication Disorders. Hove: Psychology Press, 9.195-212.

Ryan S. (2004) Vital Practice. Portland UK: Sea Change Publications

Weld N. (2012) A Practical Guide to Transformative Supervision for the Helping Professions; Amplifying Insight. London: Jessica Kingsley

Finding meaning in therapy

As a speech and language therapist and researcher, Mark Ylvisaker inspires my work. Mark was both a speech and language therapist and philosopher, and someone who passionately devoted his life to working with people with brain injury. Back in 2007, he said “in the absence of meaningful engagement in chosen life activities, all interventions ultimately fail”. A phrase like this really resonated with me as a therapist. Therapy needs to be meaningful. However, it wasn’t until a few years ago when a Professor asked me “but what is meaning?” that I started to consider the importance of this term.

In our interactions involving people with brain injury the term “meaningful” is regularly used; meaningful goals, meaningful activities, meaningful roles, meaningful participation and meaningful engagement. But what I found particularly interesting to learn was that philosophers couldn’t agree on the definition of meaning owing to its complex, fluid and multifaceted nature. In fact, philosophers argue that meaning does not surrender itself to a definition. They do agree however, that meaning is comprised of three features: connectedness, coherence, and subjectivity. Connectedness refers to the linking of experiences so that they can be understood and interpreted. Coherence refers to a person making an evaluation of their life or experiences as making sense or being coherent. This is usually done within a bigger context that may include a goal, motivation or life at large. Both connectedness and coherence relate to meaningfulness, as a disconnected and fragmented (incoherent) life is considered meaningless. Subjectivity refers to the subjective experience of connectedness and coherence, as the experiences in a person’s life have no meaning unless they are meaningful to someone.

This started me thinking about how we as therapists create meaning for people with brain injury. Some people may have a notion of what is meaningful to them but need our help to connect and make sense of their experiences. Others have lost meaning in their lives so we need to help them find it again. Meaning can be derived in many ways, from multiple contexts (or sources). An activity or action alone cannot create meaning. It is the emotional response to those activities or actions and the link to a higher purpose, motivation or goal, which is important to the creation of meaning. As a therapist, I’m often left wondering how to do that for people with brain injury. A few years ago, I came across some research by Levasseur and colleagues (2010) who described contexts according to a person’s involvement in an activity (alone through to interaction with others) and the goals of that activity (to satisfy basic needs through to helping others and contributing to society).

Taxonomy

 

 

 

 

 

Proposed taxonomy of social activities

This “taxonomy” made me realise that much of the therapy I was offering was at some of the lower levels (individual or small group activities focused on fulfilling basic needs e.g. buying a coffee, ordering lunch, having a conversation). Little therapy was focused on helping others or contributing to society in interaction with others. That is not to say we should do that, but rather, doing therapy in multiple contexts (or sources), which includes Levels 4-6, may serve to increase opportunities in which a person with brain injury can derive meaning.

The creation of meaning during the therapy process is considered essential for a person with brain injury to engage with the rehabilitation process. People with brain injury just want to take part in something, give something back to others and be someone important, in spite of their injury. If we can help people with brain injury take part in meaningful activities reflective of their desires, they may also report a better quality of life, which some would consider the ultimate goal of therapy. Some ways in which we could achieve this include: individual and group therapy; therapy in real-life contexts chosen by the person with brain injury; video-taping interactions involving people with brain injury and family members, friends and/or significant others; completion of projects designed to help others learn more about brain injury or help brain injury survivors cope with the experience of sustaining a brain injury; setting goals that relate directly to something bigger (e.g. getting a girlfriend, getting a job). These are just some examples of the contexts that may help people with brain injury find meaning in their lives.

Ultimately, I wrote this blog to convey a simple message: how important it is to help a person with brain injury find meaning in their lives. This message attests to Mark’s legacy who was dedicated to making lives for people with brain injury both meaningful and satisfying. Not losing sight of what is meaningful to our patients and clients is what we can do as therapists to take his life’s work forward.

IMG_2900

 

Dr Nicholas Behn
Speech and Language Therapist
City University London

 

 

Totally OK to Stammer at Work (2/2)

Iain smile photoMartyn: “Do you ever read poetry?”

Me : “No. Of course not.”

Martyn: “You might try it sometime. David Whyte1, something like that.”

It had been just a short conversation but, as usual, his intuition was spot on.

I’d been discussing with Martyn Brown, my Executive Coach at Ashridge2, my progress towards becoming more of myself at work, including being more open about my stammer.

But poetry, that was a weird one. I was curious.

Fast forward 5 years and here I am gratefully responding to an invitation from intandem to write about how poetry has helped me to forge a much healthier relationship with my stammer. In last month’s blog post I wrote how the Employers Stammering Network3 is aiming to make it “Totally OK to stammer at work”, whereas this article is shaped more towards my own personal journey.

Over recent years, I’ve used my experience of many years in business to confront a series of questions that I wish I’d known the answers to at the start of my career.

And nowadays, I wonder what advice I’d offer to my younger self if he asked me these questions – and, to help his imagination, what lines of poetry might I even share with him? Here’s how our Q&A session might sound:

Q 1 How much will my stammer restrict my career?

A 1: It may surprise you, because you feel so ashamed when sometimes you can’t even say your own name, but the answer rests almost entirely within your own control. Your stammer can dominate your career or it can be almost completely irrelevant. Truly!

For me the big realisation was that it was within my gift to choose how I saw myself with a stammer – either as someone who’s shame and self-oppression for having a stammer would continue all my life – or as someone who could accept over time that it’s “totally OK for me to stammer – even at work”.

That’s so easy to write, yet it took me years to get here. And one of the steps helping along the way was learning that by living more choice-fully in relation to my stammer, I could influence for better or worse the outcomes for my own career. This point about consciously making difficult choices lies at the heart of the closing lines of Robert Frost’s ‘The Road Not Taken’:

 

THE ROAD NOT TAKEN (Extract)4

Robert Frost

 

“I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I –

I took the one less travelled by,

And that has made all the difference.”

 

Q 2 : How will I ever become more comfortable with speaking in public?

A 2: For people who stammer, speaking in public is often a step too far – and we avoid it at all costs.

Throughout my career, my relationship with speaking up has been erratic to say the least! My progress has come from taking calculated risks, some successful and others not – but doing it in my own way for better or worse. Stubborn, you might call it. I prefer to call it courageous!

It’s not been easy at all – but it’s definitely been worth it.

This sometimes unbearably difficult path of making changes in mid-life is a core theme of some of David Whyte’s work, and it’s almost as if ‘Start Close In’ was written with the courageous step of speaking up in public for the first time in mind .

 

START CLOSE IN (Extract)5

David Whyte

 

“Start Close in

Don’t take the second step

or the third

start with the first

thing,

close in,

the step

you don’t want to take.

 

Start with

the ground

you know,

the pale ground

beneath your feet

your own

way of starting

the conversation.”

 

Q3: How can I cope when I’m having a bad day with my stammer?

A 3: Some days are just difficult stammering days. You’re tired, nervous or slightly out of sorts – that’s life.

And yes, there’s still pressure not to stammer at work and, even though I’ve learnt to rise above it, it can still feel bruising when it’s been a tough stammering day.

Learning self-acceptance, resilience and perspective has been crucial to coping with those days. Like Derek Walcott’s raw realisation in “Love after Love”, it’s meant looking in the mirror and accepting myself. Accepting that my stammer has always been part of me – and not to try to make it a stranger.

 

LOVE AFTER LOVE (Extract)6

Derek Walcott

 

The time will come

when, with elation,

you will greet yourself arriving

at your own door, in your own mirror,

and each will smile at the other’s welcome,

and say, sit here. Eat.

You will love again the stranger who was yourself.”

 

Q4: Where can I find advice, support and kindred spirits?

A4: Nowadays there is so much support and friendship out here for people who stammer.

Firstly, I’d point towards the British Stammering Association7 (“BSA”) the national charity for people in the UK who stammer.

And secondly to our Employers Stammering Network, an arm of the BSA, where our goal is simply to make it “Totally OK to Stammer at Work”. Don’t worry, we never discuss poetry, that’s just me!

Both the BSA and ESN offer a spirit of welcome – from people who stammer – that’s warm and genuine. Just visit the BSA Closed Facebook group to get a feel for it.

Which brings me to my final poem, from David Whyte’s recent collection ‘Pilgrim’, which develops the theme of arriving amongst strangers who themselves have walked a similar, searching journey.

 

CAMINO (Extract)8

David Whyte

 

“…….other people

seemed to know you even before you gave up

being a shadow on the road and came into the light,

even before you sat down with them,

broke bread and drank wine,

wiped the wind-tears from your eyes:

pilgrim they called you again. Pilgrim.”

 

Before ending, I have an invitation for you.

Please start a conversation with someone about how it’s “Totally OK to Stammer at Work”. You might choose a friend, a colleague, perhaps your boss.

Every conversation is an important step forward in improving workplace culture towards stammering – and if you’re stuck for how to start, you will surely find inspiration in the opening lines of ‘Start Close In’ above…….

I’m keen to hear how you get on!

poetry wordle

Iain Wilkie

Iain Wilkie is a Senior Partner at EY and the Co-Chairman of the Employers Stammering Network (“ESN”). All views and opinions expressed in this article are entirely his own.

 

References

1. David Whyte – Poet, author, lecturer. www.davidwhyte.com

2. Martyn Brown – Business Director, Organisational and Executive Development, Ashridge Business School, and Ashridge Programme Leader for EY.

3. Employers Stammering Network is operated by the British Stammering Association (see 6 below). For further information contact please email either iwilkie@uk.ey.com or Norbert Lieckfeldt at esn@stammering.org or mail@esn.org.uk

4. “The poetry of Robert Frost”, ed Edward Connery Lathem (Jonathan Cape 1967), Random House Ltd, 20 Vauxhall Bridge Road, London SW1V 2SA. “Staying Alive”, edited by Neil Astley, 2002, Bloodaxe Books Ltd, Highgreen, Torset, Northumberland, NE48 1RP.

5. David Whyte, “River Flow”, New & Selected poems 1984-2007. Many Rivers Press, P O Box 868, Langley, WA 98260, USA. www.davidwhyte.com © David Whyte.

6. Roger Housden 2003 “Ten poems to change your life”, Hodder & Stoughton, 338 Euston Road, London NW1 3BH, UK. Farrar, Straws and Giroux LLC, Collected Poems of Derek Walcott, 1996. © Derek Walcott.

7. British Stammering Association, 15 Old Ford Road, London E2 9PJ. For information contact www.stammering.org or 020 -8983 1003 or nl@stammering.org.

8. “Pilgrim – poems by David Whyte, 2012”. Many Rivers Press, P O Box 868, Langley, WA 98260, USA. www.davidwhyte.com. © David Whyte 2012.

Totally OK to Stammer at Work (1/2)

Iain smile photo “Here comes Iain WWWWilkie” was the greeting from a fluent-speaking former colleague at a reunion party in a London pub last week.

Ten years ago his words would’ve put me firmly on the back foot, but these days I grab such playground comments as an opportunity to talk about how enlightened employers are now viewing stammering as an issue to be recognised and supported. So I launched straight in and explained how two years ago the formation of The Employers Stammering Network (“ESN”) was a giant leap forward in our aim to make it “Totally OK to stammer at work”. As we chatted, my former colleague initially looked awkward but he then started listening attentively and, when I was leaving, he suggested we meet again for lunch sometime soon.

So what can we learn from this unexpected conversation about stammering in the workplace?

Firstly, the stigma of having a stammer at work is still perpetuated by many good people across many fine organisations. This is largely under-pinned by ignorance rather than malice.

Secondly, most people, including many who stammer, have never had an informed conversation about stammering in their lives. There is, as Norbert Lieckfeldt my Co-Chairman at the ESN says, “a conspiracy of silence around stammering”. Yet, once engaged in a conversation, people are often eager to learn and happy to become supporters.

Thirdly, the ESN is proving attractive to leading private and public sector employers who’ve never thought before about stammering. They’re keen to ensure their employees are not held back from reaching their full potential just because of their dysfluency.

So you might ask, what is the purpose of the ESN and how is it going after its first two years?

Put simply, our purpose is to create an employment culture in the UK where it’s “Totally OK to stammer at work”. More officially it’s “To help employers in supporting the development of their people who stammer, thereby enabling employees to achieve their full career potential, for the benefit of both the individual and the employer”. Like most purpose statements, it’s a bit of a mouthful!

Since launching with the energetic support of the Rt Hon Ed Balls in May 2013, we now have 13 [1] major organisations as members, collectively employing over 400,000 people in the UK alone. Our growth saw us recognised as one of the UK’s “Most Awesome Networks” in February 2015 by Inclusive Networks [2] and we have two more major employers lining up to join. However, it’s the support that we feel all around us that truly has Norbert, myself and many others believing that we’re on our way to achieving our transformational aim to make it “Totally OK to stammer at work”.

Most encouragingly of all, there are many employees who’ve already benefitted from their employer being an ESN member. An ESN colleague at a leading bank stepped into a much better role after gaining the confidence to ‘go for’ the job he really wanted. Another ESN colleague decided to talk openly about his stammer in front of a promotion panel in a way he’d never have done a year earlier – and got the job! And a senior manager with a pronounced stammer at my own firm told me “You changed my life!” It doesn’t get any more transformational or emotional than that!

One of the biggest challenges for the ESN is helping our members to succeed in getting stammering talked about in their own organisations. This isn’t about adding it to a wish-list in a strategy paper, but about how to change long-embedded cultural attitudes towards stammering, like those I encountered in the pub last week. It requires the public commitment of the leadership, the identification of role-models and courageous conversations that ask for and explain how to achieve that change. As Lou Gerstner, former Chairman of IBM said, “Culture isn’t one aspect of the game – it is the game” [3].

Our experience with the ESN is that it’s a tough, untrodden path that we’ve started to take; a sentiment that’s expressed beautifully in this translation from Antonio Machado’s poem Cantares:

”Pathmaker there is no path
You make the path by walking
By walking you make the path”

After all, we’re trying to get organisations to embrace something that most of us, dysfluent or not, have spent much of our lives feeling uncomfortable even talking about. However, it’s a fresh willingness to enter into courageous and vulnerable conversations that’s at the heart of the ESN’s opportunity – and in next month’s blog I’ll share insights into my own journey from a shy, underperforming employee into a more confident and fully engaged partner at EY.

In the ESN, we’re learning to be patient, to take the knock-downs and to overcome our doubts. Yet in just two years since launching, with the changes that we’re increasingly seeing in employees who stammer and with ever-expanding awareness of stammering amongst employers, it’s already become “OK to Stammer” in some parts of the UK workplace. Now that really is a path worth walking.

Iain Wilkie

Iain Wilkie is a Senior Partner at EY and the Co-Chairman of the Employers Stammering Network   (“ESN”). All views and opinions expressed in this article are entirely his own.

If you or your employer would like information about the ESN, please email either iwilkie@uk.ey.com or Norbert Lieckfeldt at esn@stammering.org or mail@esn.org.uk

 

[1] Current ESN members: A4E, BrightHouse, CitiGroup, Defence College for Health Education & Training, DHL, EY, First Group, Lloyds Banking Group, Prudential, RBS, Santander, Shell, & Warrington Borough Council.

[2] Inclusive Networks www.inclusivenetworks.co.uk

[3] Louis V Gerstner Jr, “Who says Elephants Can’t Dance?”, Harper Collins

 

 

 

Yoga and Brain Injury

Mail AttachmentI have never written a blog before, but the invitation to do so is a timely one as I ‘grow up’ and find my way with social media on my freelance ‘adventure’. Since I took early retirement from my role supporting people with Creutzfeld Jacob Disease (CJD) and their families in the NHS, my goal has been to develop all the different aspects of my work and life that I am passionate about, and link them in a coherent ‘whole’.

Working with a person’s experience of cognitive impairment, living with the risk of an inherited dementia, my family, travel, yoga …. and my travelling companion Personal Construct Psychology (PCP) are the key things I knew I wanted to be part of this new phase of my life. I worried about keeping focused without the structure of a job to go to in order to keep focused, so with the luxury of now being able to make my own timetable, I went to an early morning yoga class three times a week.

I started to elaborate my sense that yoga could bring relief for my clients living with cognitive impairment. I undertook yoga therapy training for people working with children with special needs with Jo Manuel at the Special Yoga Centre, and started to engage one of my elderly clients in a gentle yoga practice. It is striking how she can remember movements and postures from the previous week, whilst she is unable to remember what has been said just five minutes beforehand. This in itself is a major opportunity for validation in people with cognitive impairment, the critical essence of person-centred interventions, however yoga has a great deal to offer people with brain injury on many levels: rehabilitation, health and well being, managing cognitive impairment and emotional consequences of brain injury.

A year of weekly yoga therapy with a woman who was bed bound following three strokes and diagnosis of dementia, with neurogenic pain and deemed unsuitable for rehabilitation, is now moving herself around her bed, up to sitting, transferring without the use of a hoist. She is also now able to discuss the nature of her difficulties and articulate the changes she experiences in her body. The role of yoga in rehabilitation, promoting and maintaining mobility, breaking down the goals into small and manageable steps for people with neurological challenges and cognitive impairment has huge potential, not least because of its focus on awareness.

Peter Blackaby (2014) explains how it is feeling movement that brings about learning (sensory motor cortex), and not ‘telling’ our muscles to move (motor cortex). He quotes a study where monkeys have had the motor cortex for a skilled movement removed from their brain and yet can still make that same skilled movement. Another part of the brain takes over. However, when the sensory motor cortex is removed for that same skilled movement, the movement can no longer be made at all. Critically it is the noticing involved in the practice of yoga that brings about change in body and mind.

Yoga is well known for the links between mind & body, and yoga practice is in fact a physical and tangible route to achieving a state of meditation, which has evidence based health benefits in generating the opposite of the stress response in the body. There is increasing evidence for change in circulatory, emotional and mental health, in addition to changes at a cellular level in people who are recovering from cancer. From a psychotherapeutic perspective, yoga is also a way of working with the aspects of ourselves that are not easily put into words, and may never even be articulated. In this way yoga brings therapeutic intervention within reach of people with severe communication disorders.

I have been elaborating this idea from the perspective of PCP. Our theories about the world around us exist at all levels of awareness, and while psychotherapy might advocate that its role is to help people articulate their construing at lower levels of awareness, I personally wonder whether that is always necessary for change and wellbeing? In PCP we see words as merely what we use to convey our discriminations and conclusions about the world around us, and there will always be much of our construing that remains inaccessible… that part of our construing which is non-verbal, intuitive, or was developed before spoken language. Yoga enables us to experiment and elaborate ourselves at that nonverbal level and so is it surprising that the practice of yoga brings about changes in our thinking and our emotions?

There are many different forms of yoga, and increasing research evidence for the health benefits of yoga in general, and for yogic breathing techniques and mindfulness in particular. For me, I am interested in what all yoga has in common rather than a specific approach, and its contribution in the process of achieving and practising mindfulness, with a view to developing yoga as a therapeutic intervention with people with dementia and other forms of brain injury.

I am currently taking referrals for one to one work and I go into residential and day care facilities. l now look forward to teaching the first 25 hour yoga training for people living or working with people with dementia and other forms of brain injury in March 2015 at Special Yoga in London. It’s a course for family members interested in exploring ways to engage with their relatives with brain injury, for health professionals interested in the application of yoga with people with brain injury, and for yoga teachers and practitioners wanting to understand more about the experience of cognitive impairment, whether this is stable and resolving, or progressive and/or fluctuating. The flyer can be found at http://specialyoga.org.uk/teacher_training/yoga_dementia/ or you can contact me directly.

Clare Morris
07545 287139
clrmrrs@me.com
www.claremorris.org.uk
@ClareMorrisPCP

It’s time to take back our speech: Did I stutter?

X5CssgRh_400x400

Cathy and Sam invited me to discuss the Did I Stutter Project, a recently launched disability activist project for stutterers by stutterers, created by myself, Zach Richter, and Erin Schick this summer. Put most simply, we are a group of stutterers who want to be heard on our own terms, with two main goals: 1) resisting speech assimilation and 2) advocating for dysfluency pride. We are not a self-help group per se. Rather, we consider ourselves as part of the disability rights movement.

Gaining their momentum in the 70s, disability rights activists and theorists have insisted that what we understand as “disability” is not primarily a medical but a political issue of inclusion and exclusion. Human traits are tremendously varied – eye and hair color, bone structure, height, physical and mental capabilities. So why, disability politics asks, are only particular forms of variation marked as “abnormal”?

The short answer to this question is that the very process of categorizing bodies and human traits in terms of normal/abnormal or abled/disabled is deeply informed by cultural, economic, social, and political values. For example, despite progressive legislation we still erect inaccessible buildings and transportation systems that “disable” wheelchair users and deaf or blind people. Architecture that excludes certain types of people is a reflection of what and who we value as a society. Disability activists and theorists thus argue that (to varying degrees depending on who you ask) disability is not an individual and biological condition, but is a complex interaction between bodies, cultural values, and social/economic structures. “Abnormal/normal” and “disabled/abled” are, therefore, first and foremost political categories used to construct our world in oppressive ways. Because of this, disability rights movements refuse to believe that disability is fundamentally a medical issue, and instead see it as a matter of civil rights and justice. We demand to be included in society as equal participants just as we are.

Yet up until late, there has been very little attention to stuttering and communication disabilities within disability studies and activism. Did I Stutter wants to change this. We are of course not the only people interested in thinking about stuttering from the perspective of disability studies: stuttering pride is being blogged; vloged; poetry slammed; and discussed. Did I Stutter is part of a movement that is already happening.

As part of the disability activism movement, we understand stuttering to be just one variation of human speech patterns. The “abnormality” of stuttering is not a thing that can be diagnosed and treated clinically. As we argue on our site, “stuttering is only a problem – in fact is only abnormal – because our culture places so much value on efficiency and self-mastery. Stuttering breaks communication only because ableist notions have already decided how fast and smooth a person must speak to be heard and taken seriously.”

With this history and outline in mind, I return to the two main goals of Did I Stutter: 1) resisting speech assimilation and 2) advocating for dysfluency pride.

The first is admittedly more controversial. Resisting speech assimilation means that we want to speak on our own terms. We should not need to speak more fluently in order to be heard and taken seriously. One of the first and most important steps in disability justice has always been to reclaim authority over our bodies, and this is no different for stuttering. Currently the language or “discourse” of speech-language pathology continues to dominate discussions of stuttering, but we believe that the very logic of pathologization needs to go. If we really want to “treat” stuttering, instead of focusing on fluency perhaps we need to fix the society that discriminates against us and understands our speech as a problem. Did I Stutter wants to help create a world where speech doesn’t have to be made “normal” to be taken seriously, and where the very idea of normal is undone.

[Note: we recognize the issue of SLP is complex, especially insofar as SLP enables some people to access education and other socio-economic opportunities that they would otherwise be denied. We nevertheless believe it is not only necessary but crucial to critique SLP while recognizing that it is useful for some people in some instances. We have blogged about SLP here and here, and there is a good discussion of SLP on our forum.]

Secondly, we believe that dysfluent voices are important forms of communication and should be encouraged to flourish. We want people to stutter more. As I say here, “I stutter more because I do not want to live in (nor help create) a world that normalizes bodies and discriminates against those who do not fit in. . . . Stuttering more and stuttering proudly turns the tables on all those people who (wrongly) assume that, given a choice, I would rather talk just like them.” Reclaiming our dysfluent voices requires that we think of them in new and positive ways. Zach has written an exceptional blog post describing how his stutter is an essential part of his voice.

We are well aware that changing society rather than our bodies is a far more difficult and drawn-out task. Getting non-stutterers to understand and become responsible for their role in disabling our voices is going to take a long time. So is transforming conversational space to allow for our voices to be heard. And for those of us who stutter, undoing lifetimes of internalized ableism that has led to self-loathing and hate is perhaps just as difficult. Yet this is important work that we are excited to be a part of. These are our voices and it is time we take back our speech.

Joshua St. Pierre is a PhD student in philosophy at the University of Alberta and has published on stuttering and communication both academically and non-academically. Using his experience of stuttering, his work explores the normalization and exclusion of particular communicative bodies, practices, and subjects within political economies.

International Stammering Awareness Day 2014: My Shout!

isad2014logo

Raising public awareness is rife these days. There seem to be colourful wrist bands and ribbons for almost every health and social issue you can think of, and stammering is no exception. Today, on International Stammering Awareness Day, you can mark the occasion by sporting a unique sea-green version. It may be a small gesture, but it’s a positive step in the right direction:

We need more awareness around stammering!

isad_wristband250

This is true for all people who stammer, but it feels especially relevant for people who have interiorised stammers, like me. I like to think of interiorised stammering as the invisible twin of overt stammering. People with interiorised stammers are able to maintain a near-perfect fluent façade by skirting around difficult sounds and words, and avoiding certain social situations altogether. But while they may appear to speak ‘normally’, this comes at a huge mental and emotional cost. Internally, they are struggling with all the thoughts and emotions that come with having a stammer. Anxiety, fear, frustration, shame, helplessness, loneliness – these are just a handful of those emotions. And they are underpinned by a flood of negative thoughts, such as ‘People won’t accept me if they find out that I stammer’, ‘I need to be fluent to do my job well’, and ‘Stammering means that I’ve failed’.

It’s difficult for people to understand that someone can have a stammer without actually stammering. I remember confiding in an old friend many years ago that I stammer. Her response was both rewarding and devastating: “But you speak perfectly fluently.” I was elated to hear that I had successfully pulled off normal speech, but at the same time it felt very lonely to know that this meant I would receive none of the support and understanding I really needed.

I believe this lack of awareness of interiorised stammering comes in part from an overly simple portrayal of stammering in the media. The King’s Speech – a film that shone a powerful light on stammering – profiles the struggles of someone with an overt stammer. And more recently, Musharaf, from the TV programme, Educating Yorkshire, captured the nation’s attention as a boy with a severe stammer fighting to be heard in a fluent world. While difficulty with speech is a hallmark of all types of stammering, interiorised stammering challenges the perception that this difficulty is immediately apparent. It shows that stammering is actually a very varied condition, and that there is so much more to having a stammer than just talking differently.

International Stammering Awareness Day is a wonderful opportunity for us to raise awareness of these, and other, aspects of stammering. Whether it’s talking about our experiences with others, wearing a wristband or a ribbon, running a marathon, or writing a blog post (!), every effort to improve the public insight into stammering will lead to a better understanding of this condition. I look forward to the day when I can tell someone that I stammer and they nod unquestioningly.

Cara

News Group: Behind the Scenes (2/2)

I wrote last month about how some of our neuro-rehabilitation service users benefit from the experience of attending the news group we run on the ward.

news2

 

As a service, we have found that we can use our group provision for a number of purposes:

 

We can use the group to provide different packages of care to different service users within the same session. We may invite people to attend news group as part of their goal-based therapy. For example, they may be working towards a more consistent use of intelligibility strategies, or demonstrating increased communicative confidence by facilitating discussion or presenting a news item as part of the session.

Some people know they are able to participate relatively independently in group conversation. However, they may continue to benefit from support, for example to counter the effects of fatigue or distractibility. Further speech and language therapy (SLT) input for these people beyond discharge from our ward may not be indicated, but there are benefits to them continuing to attend the group while they are with us. This monitoring and maintenance package allows room for fine-tuning and further confidence boosting prior to discharge. Such people are also often positive role models for other group members who may require higher levels of support to engage in group conversation.

Some group members still early on in their admission, or newly referred to SLT by others in the multidisciplinary team, may join us for a number of assessment sessions. This may be because the group setting reveals more interactive skills than they are able to show in the often more transactionally-based ward setting. Alternatively, for some there may be an indication of higher-level language processing or social communication difficulties, which do not impact particularly on the ward. Attending the group allows further assessment of the impact, which their impairments may have in more complex group conversation. It can also provide a concrete starting point from which to discuss these subtle difficulties with the service users who may not themselves necessarily consider any difficulties to be present

Group sessions provide rich observation opportunities for new staff and students. Over the past year, we have been joined by students from nursing, medicine, physiotherapy and occupational therapy. We invite new staff members to join us as part of their induction. The richness of the experience of coming to the group as an observer is that there is the opportunity to meet people with a number of different communication diagnoses, and to see in action the strengths and needs these diagnoses may create. A further positive is that none of our observers is passive; anyone coming to visit our group is invited to participate, thus enriching their own experience and learning, while providing further positive role modelling for our service users. Our own SLT students will often take on facilitation of the group for the duration of their placement, which works particularly well with peer placements.

The news group is a joint project between occupational therapy (OT) and SLT. We have found that we need to meet frequently to review and discuss the strengths, needs and progress of each participant to ensure we keep our input focused. Otherwise, there can be a risk of running a session which goes through the motions of looking at recent news stories, but which gives no specific input to any of the packages of care identified for each service user. I will admit that this has happened at times especially if staffing is low or the ward very busy. After a ‘going through the motions’ session, I feel I have facilitated an opportunity for social interaction and the chance for some people perhaps to take on a bit of information about current news events. However, I also feel that the same session could have been facilitated by an enthusiastic volunteer with no specific training in or knowledge of communication impairment.

News group review has now evolved into a joint SLT and OT review of the needs of whoever is on our ward at any given time, and whether there are other groups we could run. This can often change from month to month as we aim to create group opportunities for the people we have on our ward, rather than to try to shoe-horn people in to a fixed format. For example, in the last fortnight we find we have several people with specific comprehension needs and have this week started a ‘points of view’ group structured with a very low language load, but providing opportunities for interaction and expression of likes and dislikes through music appreciation (a clear split in today’s group between heavy metal and the Jackson 5!), chocolate tasting, TV reviewing and more as we plan it..!

Nic Martin