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

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

 

 

The Day after International Stammering Awareness Day (ISAD)

kite-007Disclosing one’s stammer is easy they say… vital I say. In fact it is very much a technique I subscribe to, use frequently and encourage others to try. Imagine going into a stressful situation, an interview for example; walk through the door, friendly handshake, introductions gone well, half way through the first question, BLOCK. No sound. Embarrassed interviewers. Red faces, yours and theirs. You get the word out, will I block again? Will I stammer? Oh please get me out of here. It feels like a total failure, even though it probably isn’t. Your mind is going through all the usual worst case scenarios.

Now, try this for size. Walk through the door, friendly handshake, introductions gone well. “Before we start I would just like to say, I occasionally stammer. It’s not a problem for me and I trust it won’t be for you.” Now you are in control, you have wowed them, you have a USP. If you do block or stammer, it’s not a surprise, there will be no embarrassment, your stress levels are normal for an interview, and you’re likely to be more fluent as a result.

Early self disclosure works in many situations; with new people, those dreaded round the table introductions at meetings and even presentations and speeches. Whatever the occasion, it puts those of us who stammer in control of our speech, something we crave but may rarely experience.

So why is it then that I, someone who has lots of experience and success using this technique, finds it so difficult to talk about my stammer with my family, friends and colleagues? They already know I stammer, a fact I have never wanted or been able to hide, so self disclosure with them would be something slightly different. I know I would not suffer prejudice or ridicule, these are my friends after all, and rightly or wrongly I do crack a joke about stammering, so they know I am in a comfortable place with my speech.

Is it because I would have to speak more about feelings rather than the mechanics of speech? Is it because I would be revealing a more vulnerable side to my character they may not have seen, wish to see or I may wish to reveal? Is it because I don’t like talking about me me me? Am I, as usual, over-thinking the whole situation and should I just get on and talk to them about how stammering has and continues to shape me into the person I am?

These are questions I do not yet have answers to, but writing this has motivated me to move my self disclosure onto the next level, more personal, closer to home. I have always been sceptical of ‘awareness days’, there is a risk those not directly affected will be jolted for 1/365th of a year, then move on to the next cause. Don’t get me wrong, I fully support ISAD and the freedom it gives stammerers to speak out, often for the first time, and long may it continue. As with every British Stammering Association Conference I have attended, we must, must ride the wave of positivity and ‘can do’ generated and continue the work started on that day or weekend.

For me, that means talking to my friends, workmates and anyone else who knows me (sounds like I am on the radio!) about stammering, educating them and doing my bit towards a society that accepts dis-fluency and not expects fluency.

When I was a child I used to enjoy spending time on the beach flying kites; brightly coloured, bold symbols of fun and freedom, only just under control but high in the sky for all around to see. I will be flying the kite for stammering from now on, when will you be flying yours?

paul-roberts-photo

 

Paul Roberts

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

Stuttering Pride

img_550c7b384eebdAs a speech and language therapist who works in the field of stuttering who doesn’t stutter, I’ve lately taken an interest in the notion of “dysfluency pride” or “stuttering pride”. I have been drawn to “stuttering pride” because of the similarities I see in the “gay pride” movement. As a gay man who felt a lot of shame about my own identity growing up, I noticed some common parallels that people who stutter and the LGBTQI faced (feeling isolated, passing as fluent or passing as straight because of societal pressure).

Many definitions of stuttering unknowingly situate stuttering as something that needs to be ‘fixed’ or ‘treated’. For example the International Statistical Classification of Diseases and Health Related Problems (ICD-10) defines stuttering as “a speech disorder characterized by frequent sound or syllable repetitions, sound prolongations, or other dysfluencies that are inappropriate for the individual’s age. Similarly, the US National Library of Medicine’s website, MedlinePlus states that stuttering is “a speech disorder in which sounds, syllable, or words are repeated or last longer than normal. These problems cause a break in the flow of speech (called dysfluency)” (author’s own italicised words for emphasis).

Although helpful in the medical world, where science’s role is to fix the human body and to reduce impairment, these definitions do nothing to reduce the stigma attached to stuttering. One can look at how far the Deaf community has come along with human rights, advocacy and resistance against the removal of sign language (promotion of oral education). I often read about Deaf pride and the acceptance that being deaf is seen as a unique difference rather that a disorder that needs to be treated. An excellent book that discusses the tension between the medical model and the social model of disability is Andrew Solomon’s book, Far From the Tree. One of my favourite quotes from Solomon’s book is “Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources.” (pg. 37). Solomon’s book uncovers the complex journey parents embark on when their children are radically different to themselves. Solomon interviews parents of children with Autism, parents of children who are Deaf and many other parents of children who are different. Stuttering does not feature in Solomon’s book, but the content is relatable to parents of children who stutter nonetheless.

Following the International Stuttering Association World Congress/National Stuttering Association in Atlanta (July 5th – July 10th), my hope is that one day the world understands stuttering as much as it understands deafness. In the Deaf community, the use of sign language is central to Deaf identity, and attempts to limit its use are viewed as an attack. In a similar vein, for a person who stutters, stuttering is central to Stuttering identity and that society’s expectation for communication to be fluent places unfair demands on people who stutter.

I conclude this post with a wonderful poem by a student who I’ve been working with. This remarkable individual has taken ownership of her stutter and together we are working on ‘letting her stuttering out’ and for her to ‘give herself permission to stutter.’ I encourage you to see stuttering as a unique difference, one that celebrates diversity of the human race and one that teaches the world how to really listen.

Stuttering by Brenna (aged 10)

Stuttering is good, stuttering is bad,

Stuttering can make you happy, stuttering can make you sad.

Stuttering can teach, stuttering can learn,

Stuttering can cost, stuttering can earn,

Stuttering can grow, stuttering can shrink,

Stuttering can be stupid, but it can make you think,

Stuttering can be anger, stuttering can be fine

Stuttering belongs to lots of people, but stuttering is mine…

 Voon Pang

Picture1Voon Pang, Bsc HCS, MNZSTA, CPSP is a speech-language pathologist at the Stuttering & Treatment Research Trust in Auckland, New Zealand. Voon blogs for the Stuttering Foundation of America and has travelled to the United States, United Kingdom and Australia to be better equipped at helping those who stutter.

 

 

 

 

 

 

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