Tag Archives: Disability

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

 

 

 

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

 

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.

 

 

 

 

 

 

Fluent made language

LanguageBeing a stammerer, I believe, has the ability to provide an individual with certain positive attributes. One of the attributes I have found is a great respect for language. The experience of not saying what you want to makes you acutely appreciate the power of the right words. Whether it is in ordering in a restaurant or performing an oral presentation, you come to realise no word is a perfect synonym for another. Each word comes with its own unique associations and connotations.

Just recently, I have come to closely consider the words I and others use to describe stammering. The words may often sound positive – overcome, manage – but there are often subtle negative connotations present.

1398720426618Now, I am no linguist, but I decided to read a bit more into language and social stigma. In 1980, Dale Spender wrote a seminal text in feminism called “Man Made Language”. In the book, she lays out the power of language to influence society and individuals.

”[Language] is our means of ordering, classifying and manipulating the world. It is through language we become members of the human community”.

She then goes on to explain how the dominant sex “men” have dominated language – God is always a he, sex is penetrative – re-enforcing the lowly position of women. English is a man’s language that continues the oppression of women. This line of thought has since been continued from feminism into disability: an able majority has created a language that oppresses the disabled.

For a few minutes, I want to briefly write on how, maybe, a language pre-dominantly made by fluent people shapes our consciousness and our beliefs about stammering. How a fluent made language oppresses people who stammer. I would like to highlight a few more obvious words we could really do without in the stammering vocabulary. Words that continue to encourage society and stammerers to view stammering as a stigmatising defect rather than simply another way of communicating.

Overcome
I shudder with rage every time I read this one. It is the go to word for fluent newspaper writers everywhere: they aim to hold people who stammer up as inspiration porn to sell newspapers: not tackle social stigma. Look below the surface: overcome re-enforces stammering as a weakness. It implies stammering is something that can be beaten if only enough effort is applied.

Control/Manage
These two words are ubiquitous in the description of stammering therapies and successful outcomes for stammering therapies. They encourage stammering to be thought of as individual defect that should be minimised through effort rather than a disability which should be respected.

Grow out of
Commonly used when describing children who stop stammering. To me, it suggests those children who have not stopped stammering have failed to grow up. If only children who stammer were stronger, more confident they would have stopped this awful behaviour by now…

I think I may have just touched the surface with these few obvious examples. Society stigmatises stammering by a thousand cuts, not in an obvious fashion. I believe it’s time we started to use our walking thesaurus word-switching brains, refined by struggling with speech, to benefit stammering: to think about those subtly oppressive phrases we might use and replace them with empowering ones.

Patrick Campbell

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

X5CssgRh_400x400

 

 

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.

info@storyminders.com
www.WhoAmIToStopIt.com
Stories from the brainreels podcast

 

The Quiet before the Word

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

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

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

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

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

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

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

Really? She was surprised. You seemed so frustrated…

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

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

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

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

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

Lauren Marks

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

Power, professionals, privilege and person-centredness…

DSC01389_lightAs an allied health professional and educator in the health and social care sector, I interview a lot of would-be health and social care professionals. Almost without fail, these university applicants talk about caring and their desire to work with people, of communication skills and understanding. In due course the successful students study hard to achieve their professional registration. The academic Caroline Ellis-Hills and her team have written that rehabilitation is about helping people to live a life not dominated by their disability; a shift from the traditional medical ‘fix-it’ models. With professional registration comes the opportunity to use newly acquired knowledge to support people to live such lives. This privileged opportunity is one of both position and potential power.  In policy, education and as health and social care professionals, we talk about being ‘patient-centred’; in reality and borne out in the research literature, we may be falling short in this aspect of our practice. It is my observation that many therapists, including me, readily slip into a ‘gift’ model of rehabilitation; one where as a product of our knowledge, we tend to hold the power and suggest what is best in the light of available evidence. As a result we tend to dominate and drive rehabilitation and in turn lose sight of the person at the centre. Again the research literature reflects this. For some years now, William Levack and his colleagues have looked in detail at what happens in goal setting; a central tenet of rehabilitation practice. They have observed that while therapists talk about person-centredness and empowerment, when there is disagreement between patients and teams about which goals to set, patient preferences seem to get lost. Regrettably, I recognise my own practice in Levack’s observation of therapists steering a patient to set less ambitious, more realistic goals; a goal Levack and his colleagues call a ‘privileged goal’. In the past I have rationalised this as therapeutic, avoiding raising unrealistic expectations and supporting the development of insight, but I am increasingly ill-at-ease with this element of practice and it is fast joining my list of behaviours and practices to eliminate in rehabilitation along with the over used and thinly considered phrase: ‘no rehab’ potential’. Furthermore, I’m asking myself (and my students), what’s the more normal behaviour; setting a realistic goal or setting an unrealistic goal? Hands-up …. I set a lot of unrealistic goals … for myself, over and over again …. so, I don’t really demonstrate very good learning either. Is this a health condition?

It’s reassuring that the research literature is documenting these phenomena and encouraging practitioners to think about practices that have become so embedded that we have ceased to examine what is really happening in these powerful interactions. However, notwithstanding the contribution of evidence based practice in recent years, we need to be wary of being too dependent on the research literature. For me, the most powerful prompt to re-evaluate my practice came from two ad hoc personal interactions. The first with a social work colleague who many years ago told me: ‘when someone is told they have ‘no rehab’ potential’, they feel like they have scored ‘null points’ for life’. The second was hearing the experiences of my school friend’s husband, David. David had an aggressive brain tumour in 2005, (http://www.braintumourresearch.org/david-grant_725 ). When diagnosed he was told his life expectancy was about 15 months. A decade later, David is still here. He’s only recently retired from fulltime work and remains both independent and active, contributing to student education, cancer charity and policy work.

When I first heard David talking about his goals I remember worrying that he lacked insight about the gravity of his condition. David’s goals were big, ambitious and emotionally laden; things like, ‘I’m going to walk my daughter to school on her first day at school’. As a friend, I struggled with how to react. I felt empathy for any therapists who might have been trying to rein him in and recalibrate his expectations. Actually, it was me who had to recalibrate; David did not and does not lack insight. He is absolutely realistic about the gravity of his condition, but this does not mean he cannot also be active and hopeful. The importance of supporting and nurturing hope features little in health and social care education but is an area gathering attention. Returning to the research for a moment, there’s evidence that, just like David, patients can remain hopeful but equally grasp the seriousness of their condition. Bright and her colleagues reviewed the literature about hope in relation to stroke and suggest that while there’s some evidence that health and social care professionals can have a positive role in fostering hope, they are just as likely to dash hopes, to justify this as setting realistic expectations and what’s more, seldom see fostering hope as their role.

Clearly there is a balance to be struck, but I have always thought that there is huge merit in the phrase David recalls his oncologist using: ‘David, you have a very nasty brain tumour, but a small minority of people do very well; join them!’. After all, how do the health and social care professionals ‘know’ what a realistic expectation is?  For a couple of decades now we have been encouraged to look at the evidence, the statistics and empirical research; to embrace evidence based practice. There is of course value in such evidence, but it doesn’t tell us the whole story. David, for example, is excluded from brain tumour survivor research because …… well, he’s survived too long! The occupational therapist and writer in the field of rehabilitation, Karen Whalley Hammel, encourages us to tease apart the ties between knowledge and power. As far back as 1999, Coulter wrote in the British Medical Journal: ‘….while the professional is knowledgeable about the individual’s condition, only service users and carers know about their experiences, circumstances, habits, preferences and values; the partnership approach to care should be based on mutual respect.’ There are echoes here of George Kelly’s characterisation of two experts in the room. A decade and a half later we still talk about patient-centredness as if it is a new concept and campaigns such as Kate Granger’s (http://hellomynameis.org.uk/), suggest there is still a way to go and that there are small things that can make an enormous difference.

I’m encouraged that increasingly I see issues of hope and person-focus thoughtfully discussed by both therapists in training and those more established in practice and I find myself thinking: ‘Is an experienced practitioner the one with the most up-to-date disease-specific research knowledge or the wise one, open to possibility, practising their craft with care and respect and above all with a focus on the individual?’

Deborah Harding
Senior Lecturer, Rehabilitation
Faculty of Health and Social Care Sciences
St George’s, University of London
Email: d.harding@sgul.kingston.ac.uk
Twitter: @HardingDebs

Sadly – not all academic journals are open access yet, but for those who are interested here are the references for any literature I have cited:

Bright, F.A.S., Kayes, N.M., McCann, C.M. and McPherson, K.M. (2011) Understanding hope after stroke: A systematic review of the literature using concept analysis.  Topics in Stroke Rehabilitation. 18(5): 490-508

Coulter, A. (1999) Paternalism or partnership? Patients have grown up – and there’s no going back. British Medical Journal, 3 19: 719–20

Ellis-Hills, C., Payne, S. And Ward, C. (2008) Using stroke to explore the Life Thread Model: An alternative approach to understanding rehabilitation following an acquired disability. Disability and Rehabilitation, 30(2): 150-159

Kelly, G. (1963) A theory of personality: The psychology of personal constructs. New York : Norton

Levack, W., Dean, S.G., Siegert, R.J. & McPherson, K.M. (2011) ‘Navigating patient-centred goal setting in inpatient stroke rehabilitation: How clinicians control the process to meet perceived professional responsibilities’, Patient Education and Counseling. 85(2): 206-213

Whalley Hammel, K., (2006) Perspectives on Disability and Rehabilitation: contesting assumptions; challenging practice. London: Churchill Livingston

Insider accounts: Living with communication disability

As a student Speech and Language Therapist (SLT) nearing the end of your training, you begin to feel a bit like you might know a few things. After four years of placements and the range of experiences you have amassed through interaction with a variety of clients and their families, you start to think ‘Ok, I’m beginning to get the hang of this.’ Your tentative steps become surer as you get to grips with assessments and hypotheses and management plans and the wonderful array of devices in the SLT toolkit. But, as a fledgling clinician it is also important to sometimes silence the internal noise of ‘What does this test result mean?’, ‘Which therapy approach do I think is best?’, ‘How many intervention sessions should I give this client?’ And just listen.

In a lecture called ‘Insider accounts: Living with communication disability’, Cathy Sparkes and Sam Simpson provided us with this opportunity. They invited a group of their clients with a range of communication disabilities to come in and talk to all the final year student SLTs at UCL. With our assessor’s hats firmly off, we were able to sit back and listen to people’s lived experiences. All the speakers were very generous with their stories, sharing the painful, puzzling and even playful moments of coming to terms with their respective communication disabilities, both acquired and lifelong, and moving forward with their lives. Many accounts were the result of a number of years of experience and reflection, and it was partly this that made the session so unique for us.

As an SLT, you are generally involved for a very small snapshot of a client’s journey – a few months, maybe a year if you’re lucky. To borrow an analogy, you are ‘a stripe in the scarf of their story’ [1]. But this experience enabled us to more fully appreciate the stripes that come later on, when our input may have finished and our clients have had to renegotiate what it means to live in the world. Furthermore, the speakers were able to give us access to what some of our clients might be feeling now, as we’re meeting them in the early stages after a stroke or brain injury. For example, it may be easy for us to categorise our clients in the light of what they can outwardly communicate. However, the Comprehensive Aphasia Test does not allow us to measure the presence or otherwise of someone’s inner voice – you know, the one that narrates your thoughts and feelings – I had never before considered that loss of spoken language might also lead to inner silence, as so articulately described by one of our speakers.

It was a thought-provoking and at times, moving morning, and overwhelming feedback from the students was that we felt our practice would be changed as a result. The session reminded us to always dig deeper than what we might be presented with on the surface, step outside of our therapeutic comfort zones to provide flexible and individualised support to our clients, and of course, to listen.

Kat UCL Student - 1

 

Katherine Newton
Student Speech and Language Therapist, UCL

[1] McIntosh J., Charles N., Lyon B. & James K. (2011). The Strands of Speech and Language Therapy: Weaving a Therapy Plan for Neurorehabilitation. Milton Keynes: Speechmark