Tag Archives: Stereotypes

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

 

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

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

It’s time to take back our speech: Did I stutter?

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Cathy and Sam invited me to discuss the Did I Stutter Project, a recently launched disability activist project for stutterers by stutterers, created by myself, Zach Richter, and Erin Schick this summer. Put most simply, we are a group of stutterers who want to be heard on our own terms, with two main goals: 1) resisting speech assimilation and 2) advocating for dysfluency pride. We are not a self-help group per se. Rather, we consider ourselves as part of the disability rights movement.

Gaining their momentum in the 70s, disability rights activists and theorists have insisted that what we understand as “disability” is not primarily a medical but a political issue of inclusion and exclusion. Human traits are tremendously varied – eye and hair color, bone structure, height, physical and mental capabilities. So why, disability politics asks, are only particular forms of variation marked as “abnormal”?

The short answer to this question is that the very process of categorizing bodies and human traits in terms of normal/abnormal or abled/disabled is deeply informed by cultural, economic, social, and political values. For example, despite progressive legislation we still erect inaccessible buildings and transportation systems that “disable” wheelchair users and deaf or blind people. Architecture that excludes certain types of people is a reflection of what and who we value as a society. Disability activists and theorists thus argue that (to varying degrees depending on who you ask) disability is not an individual and biological condition, but is a complex interaction between bodies, cultural values, and social/economic structures. “Abnormal/normal” and “disabled/abled” are, therefore, first and foremost political categories used to construct our world in oppressive ways. Because of this, disability rights movements refuse to believe that disability is fundamentally a medical issue, and instead see it as a matter of civil rights and justice. We demand to be included in society as equal participants just as we are.

Yet up until late, there has been very little attention to stuttering and communication disabilities within disability studies and activism. Did I Stutter wants to change this. We are of course not the only people interested in thinking about stuttering from the perspective of disability studies: stuttering pride is being blogged; vloged; poetry slammed; and discussed. Did I Stutter is part of a movement that is already happening.

As part of the disability activism movement, we understand stuttering to be just one variation of human speech patterns. The “abnormality” of stuttering is not a thing that can be diagnosed and treated clinically. As we argue on our site, “stuttering is only a problem – in fact is only abnormal – because our culture places so much value on efficiency and self-mastery. Stuttering breaks communication only because ableist notions have already decided how fast and smooth a person must speak to be heard and taken seriously.”

With this history and outline in mind, I return to the two main goals of Did I Stutter: 1) resisting speech assimilation and 2) advocating for dysfluency pride.

The first is admittedly more controversial. Resisting speech assimilation means that we want to speak on our own terms. We should not need to speak more fluently in order to be heard and taken seriously. One of the first and most important steps in disability justice has always been to reclaim authority over our bodies, and this is no different for stuttering. Currently the language or “discourse” of speech-language pathology continues to dominate discussions of stuttering, but we believe that the very logic of pathologization needs to go. If we really want to “treat” stuttering, instead of focusing on fluency perhaps we need to fix the society that discriminates against us and understands our speech as a problem. Did I Stutter wants to help create a world where speech doesn’t have to be made “normal” to be taken seriously, and where the very idea of normal is undone.

[Note: we recognize the issue of SLP is complex, especially insofar as SLP enables some people to access education and other socio-economic opportunities that they would otherwise be denied. We nevertheless believe it is not only necessary but crucial to critique SLP while recognizing that it is useful for some people in some instances. We have blogged about SLP here and here, and there is a good discussion of SLP on our forum.]

Secondly, we believe that dysfluent voices are important forms of communication and should be encouraged to flourish. We want people to stutter more. As I say here, “I stutter more because I do not want to live in (nor help create) a world that normalizes bodies and discriminates against those who do not fit in. . . . Stuttering more and stuttering proudly turns the tables on all those people who (wrongly) assume that, given a choice, I would rather talk just like them.” Reclaiming our dysfluent voices requires that we think of them in new and positive ways. Zach has written an exceptional blog post describing how his stutter is an essential part of his voice.

We are well aware that changing society rather than our bodies is a far more difficult and drawn-out task. Getting non-stutterers to understand and become responsible for their role in disabling our voices is going to take a long time. So is transforming conversational space to allow for our voices to be heard. And for those of us who stutter, undoing lifetimes of internalized ableism that has led to self-loathing and hate is perhaps just as difficult. Yet this is important work that we are excited to be a part of. These are our voices and it is time we take back our speech.

Joshua St. Pierre is a PhD student in philosophy at the University of Alberta and has published on stuttering and communication both academically and non-academically. Using his experience of stuttering, his work explores the normalization and exclusion of particular communicative bodies, practices, and subjects within political economies.

Reflections on my first BSA Conference: inspiration, connection, courage and community

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A week later and I am still feeling buoyed up by the positivity of the British Stammering Association’s National 2014 Conference, held in association with the Scottish Stammering Network in Glasgow. I was not sure what to expect as I made the long train journey north on Friday 22nd August, arriving just in time to attend the City Hall drinks – a grand and fitting social event to mark the beginning of the conference.

Conversations flowed as readily as the wine – with old friendships quickly renewed and new friendships founded. I was struck by the warmth, energy and harmonious chatter as the evening progressed – and which set the tone for the rest of the weekend. People mixed and mingled freely at mealtimes, between presentations and late into the night. It soon became apparent that the social aspect was an integral part of the conference’s success for many of the delegates – as the early morning photos at George’s Square clearly testify!

Significant highlights for me included:

  • Iain Wilkie’s keynote on ‘Transforming Employability’. Drawing on research highlighting employers’ ignorance and misunderstanding of stammering, Iain outlined the evolution of Ernst and Young’s ‘Stammering Network’ since its inception in 2011, which led to the launch of the ‘Employers Stammering Network’ (ESN), a BSA supported initiative, in 2013. Combining personal and corporate narratives interspersed with thought-provoking quotations, Iain advocated a cultural shift towards diversity and inclusiveness underpinned by flexible support processes involving the shared commitment of both employers and employees. To this end he invited all present to open up dialogues about stammering at work in the understanding that ‘there is no courageous conversation without vulnerability’. More information can be found on the BSA website: www.stammering.org/help-information/professionals-and-business/businesses/unlocking-talent-employers-stammering-network
  • Co-presenting with Katy Bailey (www.free-speech.org.uk) on the relevance of the social model of disability for stammering and employment. Relocating the problem of stammering in society and offering participants a chance to identify the physical and attitudinal barriers experienced in the workplace enabled us to explore how prevailing norms, language and stereotypes can go unchallenged and become insidiously internalised. Practical ways of managing these oppressive external and internal barriers were then discussed. Here is our handout if you are interested in finding out more.
  • Dr Allan McGroarty’s reflections on ‘Dr Quack and his stammer cure: quick fixes, bogus treatments and charlatans’. An amusing and informative review on how to spot a ‘Quack’ following the growth of the Internet and social media. Allan concluded by reflecting on the important role that the stammering and professional communities need to play in questioning and challenging false claims about stammering therapy in the public domain.
  • RSM Jimmy Lang’s motivational speech on ‘Reaching the Top’. The sheer grit, determination and resilience that Jimmy has applied to progressing his career in the army are truly impressive. Furthermore, his willingness and commitment to using his experience and influence to benefit others has resulted in the Defence College of Health Education & Training (DCHET) joining the ESN and developing clearer systems and support processes for other military personnel who stammer. Jimmy’s personal story offered a direct and powerful challenge to the ‘why try?’ effect often reported in the research (Corrigan et al., 2009; Boyle, 2013) due to the internalisation of public stigma. Exposure to Jimmy’s encouraging and constructive ‘can do’ attitude was particularly timely for the student I sat next to, who was contemplating a career in speech and language therapy and questioning the implications having a stammer would have.
  • Convincing reports on the BSA impact at the AGM, with a persuasive video testimonial on the successful Facebook page, underscored the need for greater involvement in fundraising in order to safeguard the future of the BSA: “Ask not what the BSA can do for you, ask what you can do for the BSA!”
  • The Gala dinner at the spectacular Science Centre followed by a highly entertaining impromptu exploration of Glasgow’s nightlife.
  • Bob Adam’s and Trev Bradley’s dynamic, engaging and practical workshop on ‘staying safe on the streets’ – a salient reminder given the unfortunate mugging of one of the conference delegates in the early hours of Sunday morning.
  • The infamous ‘Open Mike’ session where delegates queued for the entire 90-minute session to speak out in front of the bigger group – many for the first time, some to share their conference reflections, others to signpost a helpful resource (e.g. the Opening Doors employment course run jointly by City Lit and the BSA) and one person to get some practice in before his daughter’s wedding later this year!

A heartfelt thank you to everyone who made the 2014 conference possible, especially David Lilburn and John Mann, and to everyone who came and contributed to such a lively and memorable weekend.

In the online feedback, I was set the task of capturing the essence of the conference in four words. They would have to be: inspiration, connection, courage and community.

The next BSA conference is scheduled for 2016 – I’d highly recommend making a note in your diary now!

Sam

Boyle, M. (2013) Assessment of stigma associated with stuttering: Development and evaluation of the Self-Stigma of Stuttering Scale (4S). Journal of Speech, Language, and Hearing Research, 56, 1517-1529.

Corrigan P., Larson J. & Rusch N. (2009) Self-stigma and the “why-try” effect: impact on life goals and evidence-based practices. World Psychiatry, 8, 75-81.

 

 

Stammering and the social model of disability: challenge and opportunity

Where does the real problem of stammering lie?

How does society communicate its values and norms about fluency and how does this affect people who stammer?

How does the SLT tread the delicate path between helping their client manage their stammering more effectively (and increase ease of communication) without reinforcing unhelpful ideas about stammering (and fluency)?

These are just some of the questions Katy Bailey, Sam Simpson and I posed in a joint presentation to the Oxford Dysfluency Conference on 19 July 2014.

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At the presentation’s heart was a conviction we all share that the social model of disability has much to tell us – people who stammer, speech and language therapists, and wider society – about stammering, and how by working together we can challenge and overcome some of the stigma out there and self-oppression in here which can make life so difficult for those of us who stammer.

Katy began by tracing the origins and development of the social model in the disabled people’s movement which disputed the traditional medical conception of disability as the individual’s problem requiring impairment expertise, cure, therapy and care. Instead, the social model locates the ‘problem’ of disability in society: in the physical barriers, but also in the negative stereotypes and prejudices which can push disabled people to the margins of society, whilst upholding powerful notions of ‘normality’. The physical barrier of a voicemail which does not let me finish saying my name may be familiar to people who stammer, but far more insidious and interesting for me is the stigma around stammering which operates along psychological and emotional pathways, and is there, Katy argues, in the struggle of stammering itself.

Sam then recounted her own development as a speech and language therapist and the disturbing realisation that she was training within a tradition firmly underpinned by the medical model in which she, the ‘impairment expert’ was expected to ‘fix’ and restore the client to normality (fluency), without any awareness of the social norms and stigma the therapy was reinforcing. Times have moved on since then – Sam’s book which she co-edited with Carolyn Cheasman and Rachel Everard, Stammering Therapy from the Inside is evidence enough – but there is still plenty of stammering therapy for which fluency is the overriding preoccupation, and which fails to take the client’s voice into account, and to grasp the broader factors of self-identity, society and social stigma.

Finally, I assessed some of the cultural pressures we face: the performance-driven and perfectionist zeitgeist in which we live and the haunting and destructive appeal of the ‘fluency god’ which I am happy to say more and more people who stammer are starting to renounce. That certainly seems to be the impression I get from a range of blogs, podcasts and websites: StutterTalk, Stuttering is Cool, British Stammering Association, Free Speech, Diary of a Stutterer and the latest, Did I Stutter? project. If you haven’t done so already, check them out! The internet and social media has been a wonderful way of bringing people who stammer together, to share our stories, insights and experiences, and to provide some collective resistance to the powerful social norms which tell us either to keep quiet and get it fixed, or at least to keep up the façade of fluency. This is the good news. And the other piece of good news is that speech and language therapists also have an important part to play in helping people who stammer overcome these barriers. Approaches such as mindfulness and cognitive behaviour therapy enable us to look at our thoughts around stammering differently, and foster healthier and more self-accepting thoughts and behaviours. There is much good work to build on, and more opportunity to continue this conversation between therapists, clients and self-help groups on how we can all work together to help people who stammer on our ongoing journey from oppression to liberation.

St John Harris
website: www.free-speech.org.uk

email: stjohn.harris@free-speech.org.uk
twitter: @StJohnHarris

Embracing vulnerability

Having recently been signposted to the photos and videos Steven Halliday has put together on the British Stammering Association Twitter page, I came across a fascinating speech by the actress, Emily Blunt at an American Institute for Stuttering Gala Dinner in 2009. (Listen here)

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My initial response was one of surprise that this event had completely passed me by. Blunt’s speech is engaging and her openness and honesty about her personal experience of stammering is deeply moving. It is also encouraging to see such a glamorous celebrity coming out about stammering in this way and subverting traditional stereotypes of communication disability.

What has stayed with me, however, was Blunt’s willingness to be so transparently vulnerable in such a public forum. Her capacity to speak from this place of authenticity was like a tuning fork that touched in and resonated with something deeply human. Beyond words. An act of true courage.

Perhaps it also resonated because the struggle to be with vulnerability is a recurrent theme in my client work just now. It is intriguing how often we are untrusting of our feelings of vulnerability, how we automatically strive to keep them under wraps; by either trying to tidy the mess into a more acceptable form or to hide it shamefully from view. How very tragic then to learn how costly this natural tendency towards control and concealment actually is.

Brene Brown

 

 

 

 

In her inspiring TEDX talk, entitled “The power of vulnerability” (listen here), Brene Brown claims that embracing vulnerability is not only key to true connection with both ourselves and others, but is a necessity. As uncomfortable and unsettling as it might be, she describes the essential human experience of vulnerability as being the birthplace of joy, gratitude, personal growth and authenticity.

This led me to reflect on the many paradoxes involved in being human, on just how much each of us needs to let go of in order to truly be ourselves… in all of our beautiful inconsistency and imperfection.

Sam