Tag Archives: Connection

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

My Journey with Talking Mats

Talking Mats (TMs) I hear you say, is that a mat that talks?! And so begins my story of Talking Mats. Talking mats is an evidence-based pictorial tool developed by Dr Joan Murphy in 1989. Since its creation, it is used in the UK and worldwide.

What does Talking Mats do? It gives individuals with thinking and talking difficulties a voice. This means that it gives those with difficulties expressing themselves a medium to communicate: for example, to express thoughts, make choices, have a chat. Research has shown its effectiveness with individuals who have sustained a stroke, dementia or MND as well as adults and children with learning difficulties. It is also used with individuals who stutter and asylum seekers where English is a second language.

How do you use it? Firstly, I suggest to anyone new to Talking Mats that they enrol on the day’s Foundation Training to understand the theory of Talking Mats whilst gaining the practical experience on the training. A topic is selected from a core of topics and the individual is asked how they feel about aspects of this topic, placing the picture on the mat where they feel this applies to them. There is a top scale with a range of headings depending on the question asked. For example, see the picture below – the topic is ‘hobbies’ and the top scale is ‘like – so so- dislike’:

Talking mats can be used to explore a variety of elements including the individual’s insight and awareness, their goals, exploring their views, management of activities of daily living, facilitating capacity, and facilitating conversation. The complexity arises in the use of Talking Mats and the skill in asking the relevant questions. Initial mats, can often, lead to a ‘sub-mat’. More to follow on this with case examples in my blog next month!

I initially did my foundation training in London, run by Talking Mats, in 2013. Since that initial day’s training I have not stopped using Talking Mats! In November 2015, I travelled to Talking Mats HQ to train as an accredited trainer in Stirling, Scotland. The 2-day course was inspiring and reflective. Joan, Lois and Rhona brought out the best in us and gave us constructive feedback to continue our learning. Their hospitality and the beauty of Scotland left me feeling inspired and confident to deliver their foundation training. The course participants were teachers, SLTs, OTs and a social worker. In sharing each other’s videos, we exchanged views and ideas. I came away with ideas of using TMs as an outcome tool; and to explore using TMs in our groups – I had not considered this before. It encouraged course participants to reflect on their own communication skills in their videos carrying out Talking Mats, as well as how to teach the core principles of Talking Mats to others. I am now qualified to teach Talking Mats at foundation level (beginners). So far, I have run one course in the NHS and one independently. I have enjoyed teaching Talking Mats and incorporating my own experiences of using Talking Mats. The reflective process is also transformative for the participants who have attended my foundation courses. The use of video and reflective feedback enables changes in SLT practise. Feedback from participants included their use of TMs: using TMs symbols they were able to reflect on what went well and what didn’t. The ideas and the variety of videos shared by the group participants was just as inspiring for me as a facilitator, as it was for them. Ideas such as using TMs with carers to compare their views with their relatives and using a child’s TMs picture on the front of their SLT report or school report, for example.

I highly recommend the accredited training for those that have completed their foundation Talking Mats training and have experience of using Talking Mats in practice.

 

Leila Paxton

For more information about Talking Mats, please visit: www.talkingmats.com
For more information about this blog and foundation training (TMs beginners) please contact me via:
Email: leilapaxton@hotmail.com
Twitter: @leilapaxton

 

Inside Culture Club

Dom: ‘Post brain injury life is about staying busy and in touch with the world. To that end one of the things I go to is a group set up by my counsellor Cathy that we tentatively call ‘Culture Club’. No, we don’t sit around and discuss Boy George! Once every two months a group of about 6 brain injury survivors plus Cathy sit in a pub in Teddington and discuss anything we’ve been up to. We’re all at different post brain-injury stages; we’re all different ages and very different people. Lotte is the cinema expert; I tell bad jokes and tell Martin I find modern art questionable. He sighs, I’m sure they all do. Cathy tries to stop me swearing. More sighs. The point is it is something to do rather than just sitting at home which seems to be the all too often fate of the brain injured. We have one thing in common, it’s not much, but it’s enough.’

Angela: ‘Everyone is friendly. I look forward to it a lot. I like the variety of topics. I find it funny and Dom makes me laugh. If I could sum up Culture Club in one word, I would use the word “stimulating”. I find the group as a whole, stimulating. I find it hard to communicate which can be frustrating. It helps when Cathy sits next to me as I feel as if I have a friend. I would recommend the group to other people.’

Toby Art 2016Toby: ‘A group for people with speech issues. Although it is called the culture club, it is basically a group for people to get together and chat. Topics could be theatre, comedy, film, TV…basically anything that is NOT sport or politics!
It is a fun and supportive group of people where you will not feel judged. I’m using it to focus on turn taking and concentrating on anything cultural that I might encounter. There is also a marvellous selection of biscuits made available! I do my artwork at:   www.workshop305.com

Martin: ‘Culture Club is a group. I didn’t want to be part of it. I didn’t want to have a stroke – but I did. We all have reservations and might be cautious about coming to a group like this. But once you are there, it’s friendly, inclusive and accepting. We are all different but have things in common. You can say and share as much or as little as you like. You should dare to join us and take that leap.’

Culture Club takes place every other month on a Tuesday morning. Check out the website for more information: www.intandem.co.uk/pdf/groups/cc2016_2.pdf or contact Cathy: cathy@intandem.co.uk .

 

Stammering: A Million Courageous Conversations

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“Iain, I’m going to be submitting a business case for promotion to manager in June.

I normally stammer on my name which then knocks all my confidence, especially when meeting someone for the first time. Also, my fear of stammering often stops me from contributing to larger groups.

These are going to be increasingly important for me if I’m to be promoted and to be a successful manager.

I’ve never discussed my stammer with anyone at work before but it would be great to talk. Can I book some time in with you soon?”

This email received in January 2015 was a simple but not easy way of inviting me into a conversation about stammering. It led to an authentic, at times emotional and certainly courageous conversation between two people who’d never met before.

For the email’s author, it was the start of a year in which they transformed their working relationship with their stammer and achieved huge personal growth. For myself, it was a privilege to have been invited to play a small part.

These days as Co-Chair of the Employers Stammering Network1 (“ESN”) I’m increasingly hearing about courageous conversations similar to the one I’ve shared above. Perhaps best described as a rising conversational tide across public and private sector organisations, it gives us encouragement that we’re on course to achieve our vision to “Change UK employment culture so everyone who stammers can achieve their full career potential.”

However, what does it really mean to have a courageous conversation in the workplace? 

After all, isn’t courage really about physical bravery such as a sporting success or military engagement? In many ways it is. Yet courage is also about less visible acts.

Poet and author David Whyte explores this interior dynamic as one where:

“To be courageous is not necessarily to go anywhere or do anything except make conscious those things we already feel deeply and then to live through the unending vulnerabilities of those consequences.” 2

In other words, a conversation in which we offer up our own vulnerability to others is courageous. When we talk for the first time about the pain, shame and stigma of having a stammer we are indeed revealing our vulnerability. The closer to the heart it is the more powerful and productive the conversation can be for everyone.

As Professor Brené Brown, an acknowledged leader in the field of vulnerability and courage, explains:

“Courage is a heart word. The root of the word is ‘cor’ – the Latin word for heart.

In one of its earliest forms, the word courage meant ‘To speak one’s mind by telling all one’s heart.’ ”3

In many ways the visible and invisible elements of courage mirror what happens to us when we stammer. In other words, what people see and what they can’t see. It is not the exterior physical manifestations of our dysfluent speech, facial contortions or defensive body language that can hurt us most, but the interior turmoil pounding away in our heads, stomachs and hearts.

Perhaps it’s no wonder then that employees with interiorised stammers, whose speech typically sounds fluent on the outside, find it so difficult to reveal their hidden dysfluency and feelings of vulnerability on the inside.

Yet Brené Brown reminds us that there is still true strength to be found here:

“Vulnerability sounds like truth and feels like courage.

Truth and courage aren’t always comfortable, but they’re never a weakness.”4

So in practice, how can we successfully apply this vulnerability, truth and courage in conversations at work?

Timing can be everything and in the working world these conversations often happen as we approach points of change, whether it be a new job, a promotion or the opportunity to take on an exciting new role, especially if it requires more public speaking.

When as a senior manager, I was asked to join and lead our audit training team, it was totally unexpected as I’d always avoided instructing on any training programmes! After agonising over the decision, I accepted the role. Had I been more courageous, it could have been the catalyst for a conversation about my stammer. However, the dialogue with my boss amounted merely to his clipped comment that I needed to develop my facilitation and presentation skills, countered by my grudging acknowledgement that he might just possibly be right! It was another two years before we had that courageous conversation about my stammer as he mentored me towards becoming a partner in our firm.

There is no ‘preferred way’ to hold a courageous conversation and there’s an array of courses, multi-step programmes, articles and poetry out there. They range from “straight-talking, take no prisoners” to the “let the spirit take you wherever it will” approaches – it’s whatever works best for you.

Choosing the right conversational partner is choosing the right conversation. Do you want someone who’s going to be open, to whom you can listen and will perhaps be a little courageous themselves? Or someone more focused on listening to you and on being a friendly, receptive ear. Again, there’s no right answer. My own mentor was occasionally open, sometimes uncomfortably challenging and always supportive.

As helpful content and support for these conversations, the ESN website www.stammering.org/esn will soon include a series of case studies featuring employees talking openly about the relationship between their stammer and their work. Whether we stammer or not, much better though to use our own stories, the ones that only we can wholly tell, giving ourselves an open canvas to engage in a truly courageous way.

My invitation to you.

With a UK labour force of over 30 million people5, it’s a long haul journey to achieve the cultural change the ESN is aiming for. However, with over 300,000 UK adults who stammer, our families, friends, therapists and allies in both predictable and surprising places, our home team could very well be a million people strong.

That’s potentially a Million Courageous Conversations!

So my new year invitation to you is to become one of the million people forming our home team and to have at least one Courageous Conversation about stammering this year – a conversation through which, by being a little bit vulnerable, you’ll be amazed by what a difference you can make.

Iain Wilkie

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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.

 

 

 

  1. The Employers Stammering Network is operated by the British Stammering Association. For further information please email either Helen Carpenter at hc@stammering.org or Norbert Lieckfeldt at nl@stammering.org.
  1. David Whyte, “Consolations. The Solace, Nourishment and Underlying Meaning of Everyday Words”, Many Rivers Press, 2014
  1. Brené Brown, “I Thought it was Just Me: Women Reclaiming Power and Courage in a Culture of Shame”, 2007, Gotham
  1. Brené Brown, “Daring Greatly: How the Courage to be Vulnerable Transforms the Way we Live, Love, Parent and Lead”, 2012, Gotham
  1. Office National Statistics, www.ons.gov.uk

 

 

 

 

 

 

 

 

 

 

 

 

 

The Quiet before the Word

An aneurysm ruptured in my brain when I was 27. The facts are simple enough. Yet, I find this topic resists such simplicity. I had been an American abroad, touring a show to the International Fringe Festival in Scotland. I was onstage when it happened, though I don’t remember when I stopped singing. I don’t remember the fall. My next clear memory was waking up in an Edinburgh hospital, after my emergency brain operation was already finished.

Situations like this tend to be terrifying for those involved, and to my parents who flew across the world to rush to my bedside, their memories of this Scottish hospital are infused by this anxiety. But what I remember most from this place was the Quiet. This was not a Quiet I had known before. It was a presence more than an absence, suffused with a marvelous sense of order.  I had a nothing mind, a flotsam mind, and it was carried on this placid current of Quiet.  To experience this Quiet was to be it. My body had undergone a traumatic experience, but my mind was serene. There was still so much I didn’t yet know about my brain injury – didn’t realize I’d acquired a language disorder called “aphasia” – and that my internal and external voice were both affected. With my inner monologue on mute, I was mainly spared from understanding my condition early on. Unable to pose myself the question: “What is wrong with me?” I did not, and could not, list the many things that were.

I would never want my impressions of the hospital speech therapist to be unflattering. She was nice enough. Attentive. But I registered her presence with a slight irritation. My days were suffused by this occupying and glorious silence, and then this slim woman, with birdlike shoulders, would pester me with things to do. I couldn’t exactly grasp her purpose there, but it was abundantly clear to everyone else. I couldn’t read without assistance. Writing was prohibitive. I could only say 40 or 50 words, and didn’t know when I was speaking in gibberish. It’s sometimes like that with a neurological injury. The brain is the organ of perception, so when your brain is injured, your perception can be injured too. I desperately needed my speech therapist. I just didn’t realize that yet.

My sense of awareness lurched forward in stages. When I was released from the hospital, I had to abandon the independent life I was living in New York, following my parents back to their Los Angeles home for a long language rehabilitation, which involved another brain surgery, and speech and language therapy three times a week.

I had always planned to return to Edinburgh, and visit the hospital that treated me, but it took more than five years to do so. I contacted my SLT beforehand and she didn’t simply want to meet up, she wanted to make me dinner too. She was incredibly warm. Over her homemade marinara sauce, we laughed and caught up, and she expressed her gratitude in being able to work on my case. She told me that many of her patients were often in more acute stages than I had been. They needed help breathing or swallowing. Though my language had been seriously disturbed after the rupture, at least she was able to employ speech exercises with me. That was rare.

I am so glad you decided to come back to Scotland, she told me. Even after such a distressing experience.

I said that actually most of my hospital memories were pleasant ones.

Really? She was surprised. You seemed so frustrated…

Her comment and her past observations made sense, but I also couldn’t correct her at the time. Now I was able to tell her that when left to my own devices, I had been content. Even blissful. The things that disturbed my equanimity were mainly related to other people – their expectations – often motivated by their concern for me.

My SLT gave that a lot of thought. She said that therapists are stuck in a difficult situation. It was important not to infantilize your patients. Even if their language is rudimentary, their minds are usually sophisticated. But when you think of them as adults, as people just like you, your empathy engages. And when you imagine yourself facing such an appalling deficit, you tend to fixate on the desperation.

But when we assume people might be uncomfortable, we start to see discomfort manifesting everywhere, she said. Expect the worst, the worst appears. And we rarely suspect we might be the source of our patient’s discomfort.

This conversation became a touchstone for me, a reminder of the constant limitations we face with our narrow perception.

I realize my brain injury was a generous one, because often I didn’t know what was wrong until I had already recovered from it. And these many years later, I see the perspective of the speech therapist, and the woman in the hospital bed. I am finishing a book about my path back to language, and volunteer with people who live with aphasia. I appreciate the wide variety of linguistic experiences, and as much as I can, I try to give people an opportunity to speak for themselves. Still, I know there is a lot of value in Quiet. And even though a word can be beautiful, so can the silence that precedes it.

Lauren Marks

 Lauren-Marks-ResizedLauren Marks is an American author living in London. In 2007, an aneurysm ruptured in her brain, and since then, she’s been writing her way back to fluency. She has been published in Fresh Yarn, The Huffington Post, Brain World, and Aphasia News, has spoken at venues ranging from book fairs to university classrooms, from professional conferences to storytelling events. In the UK, she volunteers at Connect: The Communication Disability Network. Some of this article includes excerpts of her upcoming publication, A Stitch of Time: Portrait of a Mind in Construction. More at www.AStitchofTime.com .

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

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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.

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.

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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

News group: ‘being part of something’ (1/2)

10.30am and this week’s News Group is about to start on the neuro-rehabilitation unit where I work as a speech and language therapist. As I arrange chairs and sort through the newspapers, John arrives without any prompting, having remembered to consult his diary for his programme for the day. John is working on strategies to compensate for memory impairment.

Steve is next to walk in. He has come prepared with a couple of news stories to present to the rest of the group. Steve has had a long hospital stay and is close to getting home now. He wants to fine-tune his speech intelligibility strategies as he hopes to make moves to a gradual return to his job where speaking to small groups is a significant component. The plan is that next week he will co-facilitate the group with me as he has enjoyed re-exploring the nurturing side of his nature; discovering that he can be supportive of others here in hospital just as he has done in his work role in the past.

Jan arrives on time having consulted her diary too. She announces that she has ‘done her homework’. She spent a session with the speech and language therapy assistant yesterday selecting and preparing a news item to present to the group. Jan has used the group to rebuild her communicative confidence. This was low when she first came to us due to difficulties with verbal explanation as a result of generally slowed processing. Like Steve, Jan has now become a supportive member of the group, using sessions both to challenge herself to convey information and her own opinions concisely, as well as to encourage other group members to contribute to the discussion:

‘Other people share topics and I’m learning more. It’s like educating. I’m learning about more and different things. I’m speaking loudly. Preventing other people from butting in because before I just whispered. Now I don’t shut up talking. Definitely more confident. I can tell people ‘shut up, I’m talking!. I won’t cope with rudeness. I liked having the chance to prepare the day before.’

‘I was worried at first about coming but then I actually really enjoyed it.’

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As Steve and Jan organise their notes, Hashim comes in, with my occupational therapy colleague and co-facilitator. Hashim finds it difficult to inhibit voicing his every thought, which as well as impacting on conversation, is affecting his ability to engage and benefit fully from his other therapy sessions. We will agree as a group before we start that we will endeavour to let everyone have a turn at getting their point across, and that we will supportively highlight when any group member may be returning to a theme they have already clearly expressed in whatever way they can. This provides a structure for giving direct feedback to Hashim as necessary. He also has the opportunity to interact with positive role models such as Steve and Jan throughout the session’s discussion on world news, sports news, celebrity gossip, local news or perhaps even a bit of light-hearted ‘ward gossip’. More serious ward issues may arise at times. The group is a safe place to express any frustrations and to problem-solve with others possible courses of action. As staff members, we may be able to take an opportunity here to provide information, or to offer to take on an advocacy role for a given issue if needed.

Now Val walks in with a student nurse who wants to learn more about the role of the SLT on the ward, and who will join our group today. Val has marked expressive aphasia. In a group setting, she has been able to show that her functional communication skills far outweigh her abilities in more specific word-finding tasks and in the limited, often practitioner-led, task-focused conversation opportunities which she is most frequently exposed to on the ward.

Vladan too has aphasia. Previously a keen daily newspaper reader, he has said he enjoys the group as it allows him the extra time he needs to absorb information about what is going on in the world. Participating in the group also provides Vladan with unpressured space to try out compensatory strategies, such as drawing or circumlocution, when word finding difficulties arise. 1:1 support from one of the two co-facilitators is available. Any encouragement to verbal output from Vladan is in response to whatever course the group discussion is taking. There are no test questions or situations where Vladan is expected to attempt to convey information already known by others in the group. Some weeks, with his strong auditory comprehension abilities, Vladan may choose to participate primarily by listening and commenting with facial expression (often cynical!), a laugh or a nod.

Josie completes the group for this week’s session. It is not easy for Josie to remain orientated to time and place. The group provides an opportunity for her to receive gentle orientation as we will generally begin by checking the date on the newspapers, again avoiding any direct testing. The daily news then provides ready-made, genuine material for orientation to the times we are living in as the group as a whole attempts to piece together the facts on any given news story before moving on to opportunities for discussion and debate.

‘It’s lively and thorough and makes me feel as though I am part of something.’

Although definitely a place for rehabilitation, our ward does feel very much like a medical ward with people spending large amounts of time at their bed-space on a bay when they are not engaged in therapy sessions or activities. Group members have frequently reported that they enjoy the opportunity to socialise with other people they may otherwise not meet; people from so many different backgrounds and ways of life:

‘Works as a social mechanism – that’s important for people with communication problems. It helped me to work on volume and voice but it was more about confidence.’

Group members consistently express how they enjoy the group sessions and will talk about the news group during their other therapy sessions that day. The group membership can change from week to week according to the admission and discharge patterns on the ward. However, the format of the group is such that as long as we have news to discuss, there will be people on our ward who can benefit from and simultaneously contribute to what the news group has to offer.

 Nic Martin

Please note all names have been changed to protect identities.

 

Helping people with aphasia have better conversations

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Aphasia is the name given to a condition where speaking, understanding, reading and writing are damaged. If you experience aphasia, it can be devastating. Speaking is a bit like blinking – it is something you take for granted until that bit of grit lands in your eye, then you realise just how much you rely on it. In the UK around 152,000 people have a stroke each year, and one third of them will be left with aphasia.

Living well with long-term aphasia has been linked to an ability to maintain close friendships and relationships as well as a sense of control and independence over one’s life (Brown, Davidson, Worrall, & Howe, 2013; Cruice, Worrall, & Hickson, 2006). The ability to have a conversation is central to this. Just think about how many conversations you have with different people every day. Whether it’s having a good gossip with neighbours, chatting to our children about their day at school or speaking with friends and colleagues, we need to be able to speak and understand to have those conversations. Aphasia can make conversation almost impossible, devastating the quality of people’s lives, and the lives of those nearest and dearest to them.

For this reason I applied to the Stroke Association to do a PhD to further explore how we, as speech and language therapists, help people with aphasia develop skills and strategies to have more enjoyable conversations.

Left aligned logoPrior to my PhD I was part of a UCL based research group that developed the ‘Better Conversations with Aphasia’ (BCA) therapy (Beeke et al., 2013). BCA helps people with aphasia and a regular conversation partner of their choice learn about how conversations work in general, and then explore how their conversations are working. The aim being for them to then make informed decisions about how they may (or may not) want to change the ways they currently accommodate aphasia within their conversations. Watching videos of their own conversations, and the conversations of others is key to this approach. However, some clinical settings access and permission to use video with clients is not always easy. For this reason, I am keen to find out how speech and language therapists working clinically work on communication strategies with people with aphasia and their partners. My end goal is to then compare ‘typical’ clinical practices to the BCA approach, to better understand how different therapy techniques might change peoples’ communication strategy use.

If you would like to find out more, or you have aphasia and are interested in taking part in my PhD project, please visit my blog http://www.firleb.wordpress.com. You can also follow me on twitter @firleb.

There is also a free, aphasia friendly, e-learning tool for people with aphasia, their family and speech and language therapists, which can be accessed via this link: https://extendstore.ucl.ac.uk/product?catalog=UCLXBCA

All you need to do is register and then you can access it.

Firle Beckley

PhD Student University College London/Stroke Association Junior Research Fellow

Beeke, S., Sirman, N., Beckley, F., Maxim, J., Edwards, S., Swinburn, K., & Best, W. (2013). Better Conversations with Aphasia: an e-learning resource. UCLeXtend.

Brown, K., Davidson, B., Worrall, L. E., & Howe, T. (2013). “Making a good time”: the role of friendship in living successfully with aphasia. International Journal of Speech-Language Pathology, 15(2), 165–75. doi:10.3109/17549507.2012.692814

Cruice, M., Worrall, L., & Hickson, L. (2006). Perspectives of Quality of Life by People with Aphasia and Their family: Suggestions for Successful Living. Topics in Stroke Rehabilitation, 13(1), 14–24. Retrieved from http://thomasland.metapress.com/index/4jw57vg8g6x31qvj.pdf