Category Archives: Power

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

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