Category Archives: Therapy

Talking Mats in Practice

Following on from my last blog introducing my journey with Talking Mats (TMs), I have described below two examples of my use of TMs in practice. I specialise in working with people who have had sudden onset brain disorders, such as strokes, brain injuries and other progressive brain disorders, such as Parkinson’s disease and dementia. I work in a rehabilitation hospital where we provide a service to the elderly and to a neurological rehabilitation unit.

Talking Mats has been an invaluable picture communication tool to facilitate communication with people who present with cognitive (thinking, memory) and/or communication (talking) skills as described in the examples below:

The first example of TMs shows how it can be used to get to know someone and find out what their hobbies and interests are.

This is Bob’s Talking Mat:
Topic: Indoors activities – likes and dislikes
Bob (*name changed) had a large stroke that affected the left side of his brain. This affected his thinking and talking skills. It also affected his walking and he was using a wheelchair in hospital. Bob found it difficult to engage in conversation. The Physiotherapist and I thought that TMs may be a way to help Bob tell us about himself. We also wanted to see how he responded to using TMs to see if this would help him to think about some goals.

We started with symbols that Bob would find easiest to understand, so we explored Bob’s hobbies. The topic we picked was ‘indoor hobbies’ – this was placed at the bottom of the mat. We asked Bob how he felt about different indoor hobbies encouraging Bob to place the pictures on the mat. Using a visual scale of like/so-so/dislike at the top of the mat, Bob told us he liked music, TV, snacks, and card games. He disliked reading, arts and crafts. He felt ‘so-so’ about pets, computers, chatting, cleaning, cooking, photographs, and relaxing. Using the information in his ‘All about me’ book filled out by his family and talking to Bob more about his likes, in particular music and TV, I was able to incorporate his music choices in our music group. Bob became very vocal in the music group, happily singing away to his favourite band! Bob enjoyed TMs and it was used successfully to help Bob set his goals. The picture symbols also helped Bob’s thinking, understanding and talking. The visual framework of his hobbies allowed him time to think, process and respond.

This is Ruby’s Talking Mat:
Topic: Management of domestic life
 Ruby (*name changed), a 92 year old, was admitted to hospital with dementia following a fall resulting in a fractured hip. She lived on her own with some help from carers. As a result of her dementia, her thinking and memory were affected. The dementia also caused her to muddle her words and she would talk about her pet ‘penguin’ meaning her ‘parrot’.

The hospital team were worried that Ruby may not manage at home on discharge from hospital and that she may not fully understand the risks if she chose to go home. The Occupational Therapist and I used TMs with Ruby to look at how she felt about managing her self-care and domestic life at home. Ruby was engaged in TMs, but it became apparent that her insight and awareness was impaired. For example, Ruby forgot she had carers to visit her and that her meals were prepared for her by the carers. The hospital team were also concerned about Ruby during the night as she needed help in the hospital to get to the toilet and she would not be able to do this without help at home.

The Social Worker and I worked together with Ruby using TMs to look at her capacity to make an informed choice about her discharge destination. According to the Mental Capacity Act, “individuals must be given help to make a decision themselves. This might include, for example, providing the person with information in a format that is easier for them to understand”.

We carried out TMs as shown in the picture above. The topic, ‘domestic life’, was placed at the bottom of the mat. The top scale at the top of the mat, ‘easy’ was placed in the left hand corner; ‘so-so’ in the middle and ‘difficult’ in the top right hand corner. Ruby felt that cooking, paying her bills, cleaning, shopping, laundry and money were difficult. She felt unsure about being able to make a snack and there was nothing she found easy. When we asked her if she wanted to add anything else to her mat, she said that she was worried about ‘somebody ringing the bell’; ‘falling over’; night-time – ‘being alone’.

The Social Worker and I carried out a ‘sub-mat’ to explore with Ruby other options regarding discharge from hospital. It was felt, given the level of her care needs in hospital, that a nursing home might be the safest option.

Sub-mat exploring discharge destination options including nursing home:
Topic: Nursing home positives and negatives
 The topic placed at the bottom of the mat was ‘nursing home’. The symbol options on the previous mat that Ruby felt were ‘difficult’ were used for the sub-mat. The top scale for this mat was ‘like’, in the top left hand corner, ‘so-so’ placed in the top middle and ‘dislike’ in the top right hand corner of the mat.

Ruby put the ‘eating’ symbol under ‘like’ as it meant to her that her meals would be provided and that she would be eating with others at mealtimes if she chose to. She liked that her laundry would be done for her, and she liked the fact that she would not have to worry about the shopping, cleaning and cooking, as this would all be taken care of by the nursing home. We discussed the concerns that she had about people ringing the bell at home and that she would not be alone at night time.

We gave Ruby a copy of her TM so that she could think about what we had discussed together. A few days later, Ruby called over the SLT and Social Worker on separate occasions when sitting in the ward dining room and said she was keen to ‘get going and look at nursing homes’. I felt that the visual framework of TMs had helped support her thinking, memory and understanding. It gave Ruby ‘thinking space’ to add her concerns of ‘someone ringing the bell’, and ‘being alone’ at night. The mats showed Ruby’s problem solving, such as her difficulties at home versus the benefits of a nursing home. The Social Worker and I felt that Ruby had capacity to make an informed decision regarding where she wanted to be discharged to from hospital. I am pleased to say that Ruby was very happily ensconced in a nursing home chosen by herself and her family.

Leila Paxton

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

 

 

 

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

 

Me, My Stammer and I

If someone had said to me few years ago that I would one day write a blog about something I am extremely conscious of, I would have laughed out loud! But here I am and this means a big step for me.

As long as I can remember, I have always stammered. I remember when I was about 5 years old and I was struggling to ask for a toy from a boy in a classroom and he said with a puzzled look, why do you talk like this? Up until then I never really noticed my repetition of words, struggling to get the words out etc.. I went home and asked my mum and she said it’s because you are still learning to speak and I believed her for a very long time!

Fast forward many years and I am still “learning to speak”! I was bullied in school for my stammering and my parents had to come for many meetings with the school to talk about it. Having any speech therapy was never an option as my parents believed it would all go away if I gave it time. My family helped me immensely by showing their support and patience, but I grew up thinking stammering was something to hide and not talk about to the world.

Despite being good academically I could never enjoy school, but my good grades and the thrive to achieve more kept me going, I always wanted to act and take part in debates and speeches, but settled for singing instead. This gave me a chance to experience the fluency I dreamt of. I used to envy people who could say what comes in their mind without even thinking about it!

waves Over the years my stammering was like waves with high and low points, but I became very critical and unforgiving of it. I would go over and over my speech and keep telling myself that I was not trying enough to speak properly. Thinking about it now makes me feel sad at how I would be divided into two with one side trying hard to communicate and the other just being negative! I hid my stammering from everyone and would cough, pause or whatever known hideaways to cover my stammer when talking to my friends and family, even at work. I managed to work as a telephone operator in a Call Centre for four years, but the constant efforts to cover up my stammering often made me extremely tired and out of breath.

It was only few years ago that I decided to try speech therapy. That decision did not come instantly as I had often thought of it, but only found enough drive to do something about it then.

The first call I made to find out about NHS speech therapy was very daunting in its own way. I was invited very quickly to the first appointment with a therapist in Chippenham, Wiltshire where I lived at that time. I went to the first session thinking there would be a magic cure waiting for me, but was also very apologetic to the therapist for wasting her time! After a few sessions, it was obvious that we needed to address my psychological approach to stammering before the physical side.

I attended a few sessions there and learned to be as kind, gentle and friendly to myself as I am to others! I know this sounds strange, but I learnt to look at me from a distance and appreciate myself. I started to take each conversation as it happened rather than thinking the whole day was a failure if I had stammered a few times during that day. Just as I was beginning to learn the positive ways to understand my stammer, we had to move from Wiltshire to West Sussex.

This threw me out of my comfort zone and I went back to my old self! It took me many more months to find out about speech therapy in the new area. I was told that there would only be one or two sessions to attend in my area before this service moved to Horsham, West Sussex. Desperate to do something about my attitude and state of mind, I took the chance. To be honest those two or three sessions probably did little to improve anything but they were reassuring enough to make me feel I was on the right track.

Finally, the speech therapist in Horsham helped me to achieve more and explore further. My anxiety was more about causing discomfort to others, but I learnt how that might not be the case and that others are not even bothered by it! We went through the relaxing techniques as well as some breathing exercises to ease the tension around my neck and upper torso, which helped a lot. I had days when the therapy or techniques were helpful, but there were also many days when I felt lost, confused and went back to my usual self-blaming thoughts!

One of my tasks set by my therapist was letting my employer know about my stammering. It happened at the right time as I was going for a job interview for a role I was extremely excited about. I went for the interview thinking there was no way I would get this job after I mentioned my stammering – I guess old habits die hard! But I was a little shocked and somehow disappointed to see that as I mentioned stammering and my therapy, they thanked me for letting them know and just moved on! I was hoping for gasps at least, but not even a slight twinge! That proved even more that my stammering was not as much of a trouble to others as it was for me.

I got that job and am still working there 5 years on. Not even once has anybody mentioned that my stammering has caused them any trouble or has come in the way of my job. My confidence grew with the years and I found a relief in letting people know about my stammering. This also gave me a starting point to focus on learning new skills and making new friends rather than worrying about where I stammered or got lost for words.

As one of the three speech therapists I had once said, “there is no such thing as perfect speech! It’s all about how you get your point across.”  I still have days or moments when I find myself lost for words or feel out of control, but then I take a moment and think that as long as I am able to make the other person understand my point, it’s ok.

I decided to stop taking therapy back in July this year because I felt I had gained enough skills in order for me to find my own way to be a “happy stammerer”. This ability to be ok with stammering is something I never thought I would achieve.

As much as I appreciate all the hard work my NHS speech therapists have put in to help me achieve this state of mind, I feel this was only possible when I decided to take control of my stammering rather than being controlled by it.

Anyone out there who is wondering whether therapy is for them… or perhaps have had therapy, but did not find it much help, I would like to say it’s more like trying a hat… you will have to try a few to find the one that fits! And once you find it, it will not solve all your problems but it will give you enough lift to face life with your head high!


Amna

 

 

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

 

The Neuroscience of Stammering

Most of us will likely agree that the brain of a person who stammers works somewhat differently to the brain of someone who is fluent. What is not so clear, is how it is different. Earlier this year Dr Soo-Eun Chang at the University of Michigan spoke to Peter Reitzes from StutterTalk about her research on the causes of stammering. We used this opportunity to discuss the neuroscience of stammering at a recent Open Space session.

Open Spaces provide a forum for people who stammer to come together and share their experiences and views on stammering. At this particular session we chose to focus the discussion on some of the scientific developments being made in the field of stammering research and what we felt this meant for us and the wider stammering community.

neuroscience2Dr Chang’s research has discovered that neural connectivity is a critical factor in producing fluent speech. In her work with children, she has found that those who stammer appear to have slower connections between the brains regions that control speech. Interestingly, this difference is also seen in kids who have ‘grown out’ of their stammers.

This could mean that stammering permanently changes the activity of the brain, or it could show us that children with this type of brain activity are more likely to start stammering. Dr Chang says more data is needed before we can be certain one way or the other.

What researchers do know is that timing is an essential component of speech production. When we speak, we string together a series of movements to produce the right sounds in the right order, and at the right time. In stammering, the timing of these movements appears to be impaired so that the flow of speech is disrupted.

A brain structure, called the basal ganglia, may play a starring role in all this. Buried in the centre of the brain, one of the many functions of the basal ganglia is to control movement. Scientists think that people who stammer could have too much of a chemical, called dopamine, which interferes with the ability of the basal ganglia to provide timing cues for speech. They have shown that when people who stammer take drugs to block the action of dopamine, their speech becomes more fluent.

Dr Chang explained that there is a link between rhythm – a product of timing – and stammering. A study carried out by a different research team has found that children who stammer have a weaker sense of internal rhythm compared to those who do not stammer. When these children are provided with an external rhythm – in the form of song lyrics, for example – they are able to produce speech more fluently. This suggests that independently finding and sticking to an internal rhythm is key to speaking fluently.

These insights into the ‘stammering brain’ were met with mixed feelings among the group. Some people said they felt comforted by having a physiological explanation for why they stammer, while others were uneasy with being labelled as different by science. For me, it was almost a vindication; it has given me something to fight back with against assumptions that I may be partly to blame for my stammer.

I’m aware that a focus on science – and the drugs and treatments that may ultimately arise from it – is helping to feed our medicalised approach to biological difference. It has been argued by some in the stammering community that, instead of fixing people who fall outside the norm of fluent speech, the onus should fall on society to change its expectations of what it means to speak normally.

In an ideal world there would be room for both approaches, with science providing us with knowledge and society offering us change. Indeed, despite the group’s contrasting views, what we all seemed to share was a huge appreciation for the progress being made in stammering research and the prospect of one day having answers to our many questions. My hope is that this will be paralleled by progress outside the laboratory, too.

Cara Steger

 

 

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.

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Dr Nicholas Behn
Speech and Language Therapist
City University London

 

 

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 activism and speech and language therapy: an inside view

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

Transparency

I like to be really transparent. Early after a TBI, I had such magnificently apparent social communication impairments that my verbal blurts were excused. As I recovered in visual processing, attention, balance, auditory processing, and something else I can’t remember (probably memory), I looked a lot less disabled. That made the blurts more noticeable and out of place. [Side note: if you work in brain injury rehab, notice I did not include executive function in that list of improvements because that was on a painfully slower recovery trajectory.] As long as I was well-rested and with friends I could usually control blurts. Add in stressors like exhaustion, a crowd, background noise, and the blurting would let loose.

While verbal outbursts are often considered inappropriate, there’s a beautiful truth behind them. I told someone once she reminded me of algae. While she shamed me for about 10 minutes in front of other people for this transgression, what she failed to do was find out what I meant. I was attempting to give her the highest compliment I could think of. I’d been searching in my mind for how to compliment this person, and all that would come to me was a sensation of appreciation and an image of algae. So I told her about the algae.

Barton springsAlgae–the kind I was picturing–is a luscious jewel-tone, so saturated in color as to almost be unbelievable. It’s miraculous in its depth of color. It’s soft and inviting, pleasantly fuzzy even when wet. (That is so cool about algae!) Algae appears delicate but is robust, spreading its influence far and wide. You can try to stop it, but you must humbly lose. Your algae will return, and no matter how you feel about that, it will always be back: strong, resilient, soft, and green.

This was several years ago when I had no capacity to verbalize an explanation like that. It was just a sensation, the color, my childhood memories of Texas summer heat on my skin and the softness of algae on my arms as I rested in the freezing, unchlorinated waters of Barton Springs. I felt the memories, and I wanted her to be loved the way I loved playing with the stringy strips of green that floated on the clear spring water.

But no. Inappropriate. Rude, inconsiderate, oh well.

I have many Autistic and neuro-diverse friends, and we spend a lot of time communicating online. Since I now live in the frigid tundra of Portland, Oregon, I’m not hanging out at the swimming hole anyway. So I’m online a lot. I’ve learned many wonderful things about effective communication from this particular community, and I want to share two of my reflections about that here.

  1. Sometimes there is no cruel intent at all behind a statement.

Why, exactly, is it a problem if I say I don’t like your dress? I’m only saying I don’t like your dress. This isn’t to insult you. It’s 100% possible for me to dislike your dress while still holding you in the highest esteem and even asking you for fashion advice down the road.

Consider that sometimes there is no emotional baggage, ulterior motive, or crap behind verbal outbursts. They’re thoughts that come out without regard for the listener’s feelings. But that doesn’t mean they’re intended to hurt the listener.

If I say I don’t like your dress, we could move on. You’re even welcome to tell me that hurt your feelings! Then, I can say, “I’m sorry for hurting your feelings.” This is how it goes when you’re transparent with your thoughts and don’t assume someone’s trying to hurt your feelings.

  1. Be so transparent that it hurts.

I like to use HTML mark-up. You don’t have to understand computer code to do this, and in increases the odds that your intentions will ring loud and clear online.

If I want to be sarcastic, I make that into HTML-type instructions. (Instructions are inside <>):

<sarcastic>I don’t like your dress.</sarcastic>

(Of course, I don’t get why someone would say that sarcastically, but they might.)

If I need you to know that I sincerely love your dress:

<sincere>I love your dress.</sincere>

In real life, I speak in HTML opening mark-up. I say, “It doesn’t sound like I mean it, but I really like your dress.” Or, “Don’t be fooled by my tears; I’m really happy. I’m just crying.”

When someone with executive dysfunction blurts, even if they say something hurtful, you’re not obligated to assume it’s supposed to be hurtful or inappropriate. There’s always the possibility that the words came out in an unintended tone of voice, the wrong words came out, or that they were exactly the right words, but you didn’t want to hear them.

I want to make sure that we find partnerships in communication. People with brain injury are expected to curb our verbal outbursts, think before speaking (who really does that?), and be more kind and polite. I would ask that as we work on steps in that journey, listeners explore their listening and investigate the ways in which we are just as likely to misunderstand what someone said (or meant) as we are to sometimes say something that didn’t work out. Transparency, not resentment, might be a great key to helping us get through the awkward blurty times, whether we’re the listener or the blurter.

Cheryl Green, MFA, MS

Cheryl-with-waterfallCheryl creates media that combine personal narrative, humor, and social critique to create dynamic, accessible tools for cross-disability justice. She is on the board of Disability Art and Culture Project and served on the board of Brain-injury Information Referral and Resource Development (BIRRDsong). She volunteered with the National Black Disability Coalition and the Portland Commission on Disability.

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Stutter-Affirming Therapy: Removing the Obstacles to Spontaneous Speech

isad_ribbonHow can we help people who stutter come to understand stuttering as something other than the negative opposite of fluency? We can begin by exploring with them the mechanisms of ableism that position those with disabilities as inferior. People do not exist in a vacuum. Discourses that give meaning to our world pre-exist our births. Our experiences and the meaning we make of them are contingent on these discourses. For example, the narratives circulating in our milieu surrounding masculinity, femininity, sexuality, race, and disability will drastically impact the experiences we have and how we make meaning of them. However, it would be overly simplistic to see stuttering as merely a problem of able-bodied oppression. People who stutter come to us with a very real embodied complaint that speech is difficult and effortful. They are not able to say what they want to say when they want to say it. Can we address both the social reality of ableism and also the individual reality of tense, effortful speech without appealing to fluency? Absolutely! Ableism and tense, effortful speech are both obstacles to enjoyable, spontaneous communication. When we focus on removing the obstacles to spontaneity we both work within a framework that does not privilege fluency as more desirable than stuttering and also honor people who stutter’s lived experiences of struggling to speak.

Obstacles

Privileging Fluency

  • Many people take for granted that the preferred outcome of therapy is fluency.
  • Focusing on spontaneity leaves the outcome of therapy open-ended, recognizing that communication is dynamic, sounding different in different situations with different individuals.

Discrimination and Stigma

  • We can encourage people who stutter to see their stuttering as an act of civil disobedience. Each and every time they stutter they are engaged in a political activity. They are refusing to let ableism silence their voices. They are stuttering even though society would rather them speak fluently or not at all.

Coping mechanisms

  • Often coping mechanisms that have been developed to help mitigate the experience of daily stigma and discrimination prevent spontaneous speech because they prohibit open stuttering and attempt to obfuscate it.
  • These can include the addition of starter sounds, silent blocking, hesitant pauses, changing words, tensing of articulators, and avoiding speaking altogether.
  • People who stutter can be encouraged to break up these coping patterns. Together, we can find easy, enjoyable, and pleasurable ways of stuttering.

Stuttering as hardship

  • The experience of stuttering is often presented exclusively in terms of suffering and hardship.
  • Fortunately these problem narratives can never capture the full richness of people who stutter’s lived experiences. They will have plenty of material from which to craft new narratives with new meanings.
  • We can assist people who stutter to uncover moments and memories that contradict these problem narratives by exploring their past experiences for times that stuttering was not unpleasant or worrisome. Maybe there were even times they enjoyed stuttering.
  • Ableist discourses run deep in our society and often people who stutter will need additional support crafting stutter-affirming narratives. We can invite them to roleplay stutter-affirming communication both in the therapy room and outside of it. How would someone who enjoys stuttering act? How would they speak? What would their stuttering sound like? What would it feel like in their mouths?

iStock_000012551980XSmallStutter-Affirming Therapy
By welcoming people who stutter to address the above obstacles to spontaneity we can support them in making new meanings of their experiences. They can come to understand stuttering as a valuable part of their lived experience and not merely the negative opposite of fluency. By affirming the experience of stuttering we open up its meaning to a myriad of possibilities. Its unpredictability can be fun and exciting rather than a source of fear. The movement of lips and tongue can be pleasant rather than frustrating. The sounds of repeated syllables can be desirable rather than embarrassing. We must not restrain these new meanings with any preconceived notions of what success looks, sounds, or feels like. Instead we can help people come to take pleasure in their speech no matter its form, to help them find a stuttering aesthetic of their very own.

Happy stuttering!

Christopher Constantino

Christopher Constantino is a PhD candidate at the University of Memphis and a speech-language pathologist at Shelby County Schools. His research interests include the discursive and material production of disability, the therapeutic process, and the facilitation of agency. Chris enjoys riding his bicycle. Contact him at christopher.d.constantino@gmail.com