A Silent Society
by Hope Jones

Being called a 'chatterbox' myself, words were always something that flowed easily. But try to imagine this:-

'The fear, the dry, panicked swallow, the unendurable tension, the feeling that your jaw and throat is just about to seize up . . . welcome to the world of the stutterer'1.

Because I did not experience this problem, it simply didn't exist in my world. But for millions it is a daily battle they must face.

Stuttering is something that throughout history has been largely ignored by society. And yet its incidence in the United Kingdom is startlingly high with the British Stuttering Association (BSA) suggesting that 1% of the adult population stutter, affecting men three to four times more than women. The problem in children is even higher with as many as 5% of under fives living with the problem2. The word 'Stutter' comes from the Latin 'Balbus' which gives rise to the word to 'babble'. In the past it was associated with lack of intelligence, today we know this is far from the case. However it is only very recently that society has been fully exposed to this 'hidden disability3' and with more awareness comes more understanding and less judgement passed and stigma felt. Society plays a crucial role in depicting how we view a disability, disease or an illness.

Imagine a society where there is no communication. I cannot. Dogs bark, birds tweet, whales sing, honey bees dance and humans talk. It allows us to express ourselves. We all need some form of communication to feel a part of a system that makes up a vital component of society.

The power of speech is fiercely underestimated, a mother's voice to her baby, a cry for help, one of inspiration leading his country into battle, simply talking to friends. It can evoke emotions of fear, happiness and laughter. Speech has the power to change history; what would society be like today if Martin Luther King could not communicate his dream to the rest of America? Communication is a vital component in life ' without it we are just inanimate objects. Communication knits society together- it links all the different networks together allowing cohesion of the people creating a distributed network within the system of society. Communication is like the fluid that bathes our cells, with this fluid our body thrives, without it, we would die; without communication so would society. It allows a fairer society as everybody is able to express themselves; without it we would all be discrete parts floating in a system with no interaction.

There are many theories as to how language developed in humans, one thing for certain is that language needs a stimulus from around us - from studies it has been proven that if a child is isolated from other humans and hasn't learnt how to construct sentences by the age of nine, it is unlikely they ever will. This shows that language is all about community - no-one could have invented it in isolation.4

Stutterers display resilience everyday as their mind and body has to defeat and overcome the struggles of a not being able to communicate freely ' without drawing upon resilience during periods of intense fear and embarrassment stuttering could take over the whole body.

Until very recently stutters may have felt excluded from this society making them feel very vulnerable. There was very little awareness and understanding of their problem often leaving them with a monoculture of medical help speech therapy was used with methods that were demoralising and embarrassing for the sufferer for example being forced to speak with marbles in their mouths. Society was unable to appreciate what this group were going through. Shell shock is a prime example illustrating how lack of knowledge from society can cause the sufferers to feel immense stigma and shame as people did not understand it and so labelled it cowardice and lack of moral fibre. The stigma of being classified into a group within society automatically puts up a barrier between you and the rest of society; you become 'different'. Today, as understanding is greater, medicine is able to treat the sufferer as a human being rather than their disability and offers holistic treatment -looking at aspects that are often hidden- such as their emotional state, friends and family. Knowing this, we are able to treat people more effectively and most importantly, society is able to offer greater support and allowing individuals to be fully integrated.

We should never underestimate the important role communication has in society. Literature and film has greatly increased peoples' awareness of this and allows us to value medicine as an art and a science helping us to understand how intrinsically linked the mind and body are. For example Robert McCrum illustrates in his book 'My Year Off' about life after a stroke. He portrays the frustrations, anger and depression he feels through the debilitating effect of not being able to communicate. Our voice is part of our essence, it gives us an identity.

By blinking when the correct letter of the alphabet was reached Jean-Dominique Bauby produced the book 'The Diving-Bell and the Butterfly' after suffering a stroke leaving him completely paralysed and proved the vast lengths people will go to be able to communicate in order to be included in society.

The poem 'Stutter' written by Louise Heite illustrates the feeling stutterers suffer beautifully. Mentioning how words are 'crushing through a door too small'5, how 'the pieces of words lie scattered6' this last verse I feel is what must be going through the minds of every stutterer- as they desperately want to be seen as their own person rather than their disability.

'Your eyes linger on mine\ a fraction of a flash too long,\ a fragment of a bit too wide,\ and we both know\ that I have been classified7.'

This poem makes us question 'normality' it is defined by culture and society, and people not within these socially defined boundaries may experience stigma. She uses the word 'classified' for stutters this can feel like such an irreversible process- once they have been labelled as 'a stutterer' they feel like they will always be excluded from society- an immense feeling of 'felt stigma'.

The recent film 'The King's Speech' has highlighted the crucial importance speech has on the integration of society. The BSA Chief Executive Norbert Lieckfeldt calls the film ' a once in a generation moment to create change and to increase awareness' and due to this is now organising a national campaign related to these issues. Lieckfeldt describes stuttering as 'the hidden disability'8 as society is not made aware of the tremendous impact it has on the person's life and their surrounding family.

Stuttering is the most common form of speech impediment and yet why are so many people unaware of it? No films have addressed the issue of stuttering except to make a mockery of it and use it for comedy9. Michael Palin based his character in the film 'A Fish Called Wonda' as his father had a stutter, this portraying stuttering as something amusing to society. However perhaps he was attempting to make light of the hard times he and his father had been through and he later set up the Michael Palin Centre for Stuttering which provides support and help for children.

The film 'The King's Speech' however, decides to show the naked truth of what it is like to have stutter. It gives the public the chance to see the hardship, suffering, and fear that a stutterer goes through, facing a daily battle with their disability, both physically and emotionally. We see a King who forced to face not only his only problems of a debilitating stutter but also the weight of the crisis in the monarchy, leading his country into a forthcoming war and the emergence of radio broadcasting as the prime medium. Playing King George the Sixth Collin Firth in many ways had to endure the emotional and physical strain of dealing with a stutter experiencing everything from semi- paralysis and headaches. This demonstrates how intrinsically linked the health of the mind is with the health of the body.

Intrigued to know more (and having gained consent) I carried out an interview with David*, twenty two years old who has suffered from a stutter since the age of three after his mother had gone into hospital for a week - a traumatic time for him. He attended speech therapy lessons at the age of 5 for 3 months, which proved unhelpful, curing his stutter during therapy, but not in everyday life.Today his stutter is hardly noticeable, he still has trouble with the letter 'H'. Learning to control his stutter well, he gets around tricky words by using different ones. It is very uplifting listening to David talk about how little impact stuttering had on his life, due to the support from family and friends who have been patient and understanding. However, others are not so fortunate, being shouted at to 'spit it out and stop stuttering'. David's mother has noticed he goes through 'bad patches' when he is under a lot of pressure and stress. When frustrated at his inability to get the words out he would shout 'oh b*****s to it - I can't be bothered to say it now' (without stuttering). Talking to David and his mother gave me a great insight into not only the life of a stutterer but the impact on the family. Some family members experience 'courtesy stigma' where the spread of stigma reflects onto the family leaving them feeling ashamed or embarrassed. David and his mother were both so positive about it and made sure the disability did not become their master status - David made sure he was his own person and wasn't marked out or 'labelled' by his disability therefore he was fully accepted as a member of society.

Listening to David has made me see the importance of narrative based medicine. Some individuals have such a psychologically damaging experience of stuttering from a young age that they stay quiet and don't speak - letting their disability win - maybe there is more behind their story - a deeper underlying problem requiring a Doctor to carry out a good Holistic Assessment Tool Assessment (HAT) viewing the patient as a whole. Others are not taken to speech therapy as they told quite dismissively 'it's quite common at that age they will grow out of it' ' this advice is often misleading and causes problems further down the line.

Creative Piece

After watching the film 'The King's Speech' and interviewing David, I wanted to create a model to capture what it must feel like living with a stutter. It shows the constant battle the person faces with words, the physical and emotional struggle. I wanted to illustrate mind-body medicine and the links between emotions and health. Stutterers face a psychological struggle with words which manifests itself in a physical result. This constant day to day struggle with words can be exhausting and I hope the model highlights this. One stutterer said that for most people whom language is a sea in which they swim like fish, for me it is an imposing cliff that I had to climb an inch at a time.' 10.Stuttering undermines your confidence and self esteem, my model's figure is bent forward with the weight of the words, his head slumped forward - displaying felt stigma, an internalised sense of shame of this struggle.

Being a doctor you should be able to step in your patients shoes and with this in mind I made the model - trying to imagine what my life would be like if I had a stutter. I picture darkness and loneliness and a sudden sense of suffocation as my world is enclosing around me. The person is in a spot light surrounded by darkness- the brightness represents how exposed and vulnerable they feel struggling with the words, and the enveloping darkness represents the boundaries of 'normal' defined by society encroaching on their world making it smaller and a feeling of isolation as they get cut off from the rest of society.

Throughout this research I hope I have portrayed how important it is for the human body, both physically and mentally, to feel a part of society. How society views stuttering is changing rapidly; with increasing exposure comes increasing understanding and more acceptance in society. Being 'labelled' often leads to exclusion from society; hopefully this is a thing of the past. Stutterers should now have more confidence to integrate with the rest of society as they are now viewed more holistically. They say a journey of a thousand miles begins with a single step; this first step has now been made, inviting us into the world of the stutterer; a step of understanding, awareness and patience. The future of stuttering looks promising. Stuttering was called a hidden disability- it is no longer hiding now.

(extract from a Bristol Medical School WPC assignment)

References:

  1. www.guardian.co.uk 'Stammering; lost for words' article. Keith Austin Sunday 9th January 2011 20.29 GMT

  2. www.studentbmj.com 'When words don't come easy' article. Andrew Iles Clegg scholar,BMJ

  3. www.guardian.co.uk 'Stammering; lost for words' article. Keith Austin Sunday 9 January 2011 20.29 GMT

  4. www.timesonline.co.uk 'Ask your father: who invented language?' Emma Cook. February 9th 2008

5http://www.mnsu.edu/comdis/kuster/Creativeexpression/heite.html A Poem called Stutter. Louise Heite.

  1. http://www.mnsu.edu/comdis/kuster/Creativeexpression/heite.html A Poem called Stutter. Louise Heite.

  2. http://www.mnsu.edu/comdis/kuster/Creativeexpression/heite.html A Poem called Stutter. Louise Heite.

  3. www.guardian.co.uk 'Stammering; lost for words' article. Keith Austin Sunday 9 January 2011 20.29 GMT

  4. www.guardian.co.uk. Colin Firth writes an article about the challenges that he faced portraying King George VI in The King's Speech. Sunday 9 January 2011 20.30 GMT

  5. www.guardian.co.uk 'Stammering; lost for words' article written by Keith Austin Sunday 9 January 2011 20.29 GMT comments left after the article by stutterers.

Bibliography:

Hope Jones

Whole Person Care, Year One, 2011

Comments

Joanna Miles

19 March 2012 - 11:25:01
"I loved this piece, not only was it highly thought provoking but I couldn't take my eyes off it. I was intrigued by the letters in the box, I felt myself asking what was going to come out of it, how were the words going to be strung together? I particularly noticed the idea that the figure was set against a white, very plain background. This created 2 thought processes: a) how the person with the stutter felt all alone, without anyone to help them with their burden (the box) or people to confide and turn to b) caused all the focus to be on the person with the stutter. The lack of distractions in the picture caused the eye to focus solely on the figure - a similar feeling to that experienced with those with a stutter."

Anna Taylor

19 March 2012 - 11:25:01
"This was such a beautiful and thought provoking piece of art - I would have never thought to represent the stutterer in that way and it was incredibly creative of you. I will be thinking about this piece for a long time."

Godfrey Wechie

19 March 2012 - 11:25:01
"Looking at this beautiful and remarkable piece of art, I am reminded of how lucky I am to be able to articulate effectively and efficiently when it come to speaking. It strikes me to see how the 'Ginger bread man' in the piece was dragging along his burden and the sadness he felt with every step. This goes on to reflect how important it is for us to say what we want to say when and how we want it said and if we lose the ability to express ourselves in words then the consequences can be catastrophic in a society as ours which depends on effective communication... Lastly, viewing this from the perspective of the Doctor-Patient relationship then it is worth noting that a consultation involving a patient or doctor that is a stammerer is not going to be an easy one as it is going to last longer than an average consultation time and cost the NHS more and I intend to keep this at the back of my mind should I encounter such a patient. This may mean that I may lead the patient into writing down some of her problems or helping them maintain calm as stammerers tend to do better when they are relaxed."

Maria Shevlane

19 March 2012 - 11:25:01
"This is a brilliant and very powerful representation of how a person with a stutter must feel and the burden they carry with them. It was a stark reminder of how important speech is in expression and how much we rely on this ability in everyday life, yet it is regularly taken for granted. The figure being modelled in black and leaning forward illustrates clearly his constant struggle with his stutter and the fact that he lives his life in the shadows suffering alone. Moreover, I felt the box not containing any words just letters showed how a person with a stutter must feel when they know what they want to say but just canít form the words."

Anjie Mosuro

19 March 2012 - 11:25:01
"This piece is incredibly thought provoking. It is something that many people fail to contemplate and it has been effectively and creatively illustrated in this piece. The burden of letters that this figure has to carry is incredibly moving and represents so many aspects of the life of someone who stutters. The use of the magnatic letters in the box is also very significant as it shows that a person who stutters will have the letters 'jumbled up' in their mind. The posture that the figure take shows that it is weary and that the load is heavy and it is something that those who stammer must contend with everyday. The use of shadows and the black of the figure against the white background shows highlights the sharp contrast and emphasises that this person is alone in their struggle. This piece is very poignant and will remain with me for a long time. "

Samuel Hart

19 December 2012 - 18:30:23
"Having also always had words flow naturaly and easily I found this piece really thought provoking. I love that the anonymous figure is having to physically pull the letters behind them both in the difficulty of the act, reflecting the struggle with words, but also in that words forever trail behind where the figure is going. This piece for me reflects the struggle of the disability in an original and insightive way."

Georgia Hall

24 October 2017 - 21:17:20
"I really like the message and representation behind this sculpture as I personally suffered with a severe stutter as a young child but gradually grew out of it as I aged. Therefore I can appreciate the stigma and hypocrisy surrounding the disability as I experienced this first hand. However with certain words even today, I have difficulty saying and do occasionally stutter so I can really relate to this piece and often feel as though my words are trapped in a box just like in this piece. I am however a very chatty and talkative person and have never let it prevent me doing things even if I felt embarrassed sometimes incase I stuttered. "

Will Manifold

29 October 2017 - 17:49:34
"I found this piece to be very powerful and felt it did well to highlight the silent and lonely struggle that individuals with a stutter must go through everyday. Language is so crucial in all aspects of society and is so often taken for-granted by those not affected with a speech impediment. Despite being relatively common in society, the emotional and psychological implications of having a stutter are not often dwelt on by those not affected. I found the slumped posture and dejected appearance of the isolated individual underlined just how painful and lonely the struggle must be in a society that clearly is yet to fully understand the burden of having this disability. Thank you for this piece, it was incredibly thought-provoking."

Stephanie Thebault

01 November 2018 - 21:06:31
"This piece portrays a very simple yet powerful message. It really captures the struggle that those with a stutter can experience. The use of colour and contrast really emphasises this bold message and the jumble of coloured letters highlights the difficulties experienced by people with stutters in expressing their words. I feel that the burden of a stutter on the individual is well captured by the symbolic figure of the model and captures the possible feelings of isolation of an individual with a stutter."

Millie Richardson

04 November 2018 - 22:12:39
"I would never have thought to visualise a stutter in this way. I love the simplicity of the piece and how much emotion can be shown through something so simple. You can really tell how burdened someone with a stutter must feel, which I hadn't thought about before. "

ben ledsom

05 November 2018 - 07:19:02
"Having somewhat of a person impact on me, I can relate to the imagery and the back story. It can be very frustrating to have people not listen to you because of a stutter. "

Matthew Summers

06 November 2018 - 09:26:39
"Having known someone with a serious stutter in the past I had always thought that I knew what they were going through and that I could empathise with them. However, this piece of art really demonstrates how little I had known about the struggle that they must have faced doing such simple tasks. It has opened my eyes to the burden that speech impairment has on people. So simple but very powerful."