Tag Archives: Learning Through Experience

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

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 .

 

Positive stammering

positive-language-possible-ableWhen I say to people sometimes that I see my stammering as a positive in my life, they can find it a strange notion. Normally people can only envisage stammering as a negative concept.

My stammering is my natural pattern of speech, and having a stammer does not limit my speech nor hinder my conversations. Communication is so much more than just a speaking voice; it is your body language, facial expressions, your aura. Over the many years in my adult life I have found that being quite open about stammering brings many more conversations and opportunities to make my speech a positive attribute in both my professional and social life.

Quite recently I was thrown back into the position of having to update my CV and prepare for interviews as I had relocated from Northern Ireland and needed to secure a new job.

I have had many discussions with people about how to introduce stammering into my interview conversations. Also dilemmas such as do we tick the disability box? When is the correct time and place to disclose the fact you have a stammer? Can we ask a potential employer for special measures without setting ourselves at a disadvantage?

Our main issue is that in fact we are all different, each person’s stammer is unique in the same way we are all individuals. What affects one person may not affect another, and what seems impossible to one person may be a breeze to another.

For me, I decided that my stammer was something I could be proud of. The experiences that I have had over the last five years I would not have had if I was indeed a fluent person. And so I sat to write my stammer into my CV without actually using the words ‘I stammer’.

This became so much easier when I look at my stammer in a positive way. Showing that through my working relationships my stammer brings strong characteristics is really uplifting. I am able to say that by being very aware of my own speech makes me much more aware and sensitive to other people’s diversities. This makes us much more approachable if others can see that through our own difficulties we are open to accepting theirs.

Through my contacts within the British Stammering Association, going to their conferences, Open Days and getting involved in community groups I can show that I have a good network and that I am actively sourcing and meeting my own needs for back up and support.

For me, stammering has not disabled my life, but has added to it. It has given me more skills that I may not have finely tuned if I had indeed been a fluent person. It has also got me more involved with people from all sorts of places and made me push my own targets forward in terms of doing things for myself and independent travel.

And so, during my interviews I always managed to get my stammer mentioned during a question regarding strengths, talents or interests. Never in a negative way, never in an apologetic way. Mostly it was well received, employers were genuinely interested and it didn’t seem to put any off.

Socially, as I have got older I have cared less about my speech and the amount of fluency I have. My friends and family have become more comfortable with it as I have opened up more. I cannot believe I wasted so many of my younger years afraid to discuss things and be open with people when I was struggling.

My own breakthrough, so to speak, was whilst taking part in some research and being asked to visualise and describe my stammer as a ‘thing’. Something tangible you can see and touch.

For me, this was what turned my stammer into a positive. At that time, I saw my stammer as a weed, like a growing, choking ivy. It could be chopped down, but it was always there, ready to grown again, untamed and relentless. I did not like the thoughts of living with that all my days and so there and then I decided the weed needed to change, something needed to be in its place. And only I could change that. Only I could make that happen.

So I became much more open, stopped trying to ‘fit in’, met more and more people who stammered through the BSA and was soon able to realise that so many people have this dreadful negative feeling towards their stammering. I wanted to change this, I wanted to try to get people to believe in themselves, and that even with a stammer you can be whatever you want.

A_sunflower

For myself, that weed is now a flower, a sunflower, tall and proud, bright and majestic. I had support to get it there, I couldn’t have done it alone. But we must reach out, go out on a limb, take a chance. We will stumble along the way, but the rewards are so much greater than finding we are choked by our own silence.

So for me, stammering has opened doors, albeit you have to be ready to pull that door open wide and walk through it. When you do, you are faced with a whole new world, one where we can all stand like those tall, beautiful flowers and feel the sun on our face.

Mandy Taylor

 

 

 

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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