Category Archives: News

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.

International Stammering Awareness Day 2014: My Shout!

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Raising public awareness is rife these days. There seem to be colourful wrist bands and ribbons for almost every health and social issue you can think of, and stammering is no exception. Today, on International Stammering Awareness Day, you can mark the occasion by sporting a unique sea-green version. It may be a small gesture, but it’s a positive step in the right direction:

We need more awareness around stammering!

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This is true for all people who stammer, but it feels especially relevant for people who have interiorised stammers, like me. I like to think of interiorised stammering as the invisible twin of overt stammering. People with interiorised stammers are able to maintain a near-perfect fluent façade by skirting around difficult sounds and words, and avoiding certain social situations altogether. But while they may appear to speak ‘normally’, this comes at a huge mental and emotional cost. Internally, they are struggling with all the thoughts and emotions that come with having a stammer. Anxiety, fear, frustration, shame, helplessness, loneliness – these are just a handful of those emotions. And they are underpinned by a flood of negative thoughts, such as ‘People won’t accept me if they find out that I stammer’, ‘I need to be fluent to do my job well’, and ‘Stammering means that I’ve failed’.

It’s difficult for people to understand that someone can have a stammer without actually stammering. I remember confiding in an old friend many years ago that I stammer. Her response was both rewarding and devastating: “But you speak perfectly fluently.” I was elated to hear that I had successfully pulled off normal speech, but at the same time it felt very lonely to know that this meant I would receive none of the support and understanding I really needed.

I believe this lack of awareness of interiorised stammering comes in part from an overly simple portrayal of stammering in the media. The King’s Speech – a film that shone a powerful light on stammering – profiles the struggles of someone with an overt stammer. And more recently, Musharaf, from the TV programme, Educating Yorkshire, captured the nation’s attention as a boy with a severe stammer fighting to be heard in a fluent world. While difficulty with speech is a hallmark of all types of stammering, interiorised stammering challenges the perception that this difficulty is immediately apparent. It shows that stammering is actually a very varied condition, and that there is so much more to having a stammer than just talking differently.

International Stammering Awareness Day is a wonderful opportunity for us to raise awareness of these, and other, aspects of stammering. Whether it’s talking about our experiences with others, wearing a wristband or a ribbon, running a marathon, or writing a blog post (!), every effort to improve the public insight into stammering will lead to a better understanding of this condition. I look forward to the day when I can tell someone that I stammer and they nod unquestioningly.

Cara

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.

 

 

Helping people with aphasia have better conversations

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Aphasia is the name given to a condition where speaking, understanding, reading and writing are damaged. If you experience aphasia, it can be devastating. Speaking is a bit like blinking – it is something you take for granted until that bit of grit lands in your eye, then you realise just how much you rely on it. In the UK around 152,000 people have a stroke each year, and one third of them will be left with aphasia.

Living well with long-term aphasia has been linked to an ability to maintain close friendships and relationships as well as a sense of control and independence over one’s life (Brown, Davidson, Worrall, & Howe, 2013; Cruice, Worrall, & Hickson, 2006). The ability to have a conversation is central to this. Just think about how many conversations you have with different people every day. Whether it’s having a good gossip with neighbours, chatting to our children about their day at school or speaking with friends and colleagues, we need to be able to speak and understand to have those conversations. Aphasia can make conversation almost impossible, devastating the quality of people’s lives, and the lives of those nearest and dearest to them.

For this reason I applied to the Stroke Association to do a PhD to further explore how we, as speech and language therapists, help people with aphasia develop skills and strategies to have more enjoyable conversations.

Left aligned logoPrior to my PhD I was part of a UCL based research group that developed the ‘Better Conversations with Aphasia’ (BCA) therapy (Beeke et al., 2013). BCA helps people with aphasia and a regular conversation partner of their choice learn about how conversations work in general, and then explore how their conversations are working. The aim being for them to then make informed decisions about how they may (or may not) want to change the ways they currently accommodate aphasia within their conversations. Watching videos of their own conversations, and the conversations of others is key to this approach. However, some clinical settings access and permission to use video with clients is not always easy. For this reason, I am keen to find out how speech and language therapists working clinically work on communication strategies with people with aphasia and their partners. My end goal is to then compare ‘typical’ clinical practices to the BCA approach, to better understand how different therapy techniques might change peoples’ communication strategy use.

If you would like to find out more, or you have aphasia and are interested in taking part in my PhD project, please visit my blog http://www.firleb.wordpress.com. You can also follow me on twitter @firleb.

There is also a free, aphasia friendly, e-learning tool for people with aphasia, their family and speech and language therapists, which can be accessed via this link: https://extendstore.ucl.ac.uk/product?catalog=UCLXBCA

All you need to do is register and then you can access it.

Firle Beckley

PhD Student University College London/Stroke Association Junior Research Fellow

Beeke, S., Sirman, N., Beckley, F., Maxim, J., Edwards, S., Swinburn, K., & Best, W. (2013). Better Conversations with Aphasia: an e-learning resource. UCLeXtend.

Brown, K., Davidson, B., Worrall, L. E., & Howe, T. (2013). “Making a good time”: the role of friendship in living successfully with aphasia. International Journal of Speech-Language Pathology, 15(2), 165–75. doi:10.3109/17549507.2012.692814

Cruice, M., Worrall, L., & Hickson, L. (2006). Perspectives of Quality of Life by People with Aphasia and Their family: Suggestions for Successful Living. Topics in Stroke Rehabilitation, 13(1), 14–24. Retrieved from http://thomasland.metapress.com/index/4jw57vg8g6x31qvj.pdf

 

Collaboration

“Coming together is a beginning, staying together is progress, and working together is success” Henry Ford

2014 marks intandem‘s 10-year anniversary. Throughout this time, collaboration has been at the heart of all our work – both with each other and with others. 2013 was a year of experiments and we worked hard to establish even more connections and links within and outside our professional groups, using a range of approaches. As a result our networks and those we have reached and influenced have increased considerably. Here are some highlights from 2013 and some aspirations for 2014…

Twitter: @_intandem
One of our new ventures in 2013 was setting up a twitter account. We have written over 100 tweets and now have over 70 followers – including clients, therapists, counsellors, researchers, organisations, charities, students, and projects. We are using twitter to let people know what we are up to as well as signposting other events and ideas. Twitter offers a different way of interacting with individuals and groups and one that we hope we are getting better at with practice. We are starting to build a community of collaborators, which we consider a positive way forward.

Blog: www.intandem.co.uk/blog
2013 also saw the start of our monthly blog. Together with a range of guest bloggers, we have been able to use this as a regular platform to share ideas, reflections and insights as well as to signpost projects. Topics have included: different group experiences, vulnerability, acceptance, community & celebration, supervision and last, but not least, the launch of Stammering Therapy from the Inside: New Perspectives on Working with Young People and Adults. We have had a very positive response to each blog post and look forward to welcoming a range of new collaborators throughout 2014. Watch this space!

Culture Club
Another new intandem project for 2013 involved setting up a group opportunity for people with experience of stroke, tumour, head injury or brain surgery who are interested in music, film, theatre, comedy and art (Read here for more information). This open group of men and women meet every two months in the comfort of a local hotel café. Feedback to date has been resoundingly positive with a shared enjoyment of events, new ideas, humour and support. We plan to continue with this group throughout 2014 – check out the dates on our website here.

Relationship Group
Working with young people with experience of brain injury, who want to develop new friendships and relationships, has brought intandem to experimenting with a new group. We are looking forward to collaborating with Flame Introductions, a personal introduction agency who specialise in supporting people with mild disabilities and who you may have seen on the TV programme The Undateables. Our first joint meeting will be in March. Do get in touch if you are interested, as we are keen to open this group up to others.

Stammering Open Space
This open group has gone from strength to strength over the course of 2013 and now has a well-established core membership. (Read here for more information). Again feedback has been highly positive with a shared appreciation of the support and challenge, lively debate and exchange of ideas that the group offers. 2014 dates can be found here.

Courses
In our continued attempt to raise the profile of supervision within the profession we ran regular RCSLT registered Supervision 1 & 2 courses in England and Wales throughout the year. 2013 also saw us collaborating with UCL to offer a bespoke supervision course for new graduates. We recognise the unique needs of those entering the profession in the current climate. Through the course, we aimed to equip the students with the knowledge and skills to reach out for good support and supervision throughout their careers. Our shared commitment to offering support and training to therapists, coaches and other healthcare professionals interested in developing their counselling skills, resulted in our running a number of training days across the year, both independently and in collaboration with the Personal Construct Psychology Association and City Lit. intandem was also involved in organising a day of talks at City Lit to mark the publication of ‘Stammering Therapy from the Inside’, as well as co-ordinating a local book launch. Our 2014 programme of courses can be found here. Do check out what is new and let us know if you are interested in taking part.

We have enjoyed a year of experimentation and collaboration. Thanks to everyone we have worked with and met along the way! Here’s to 2014 – as we reach out to new possibilities ahead.

Cathy & Sam
January 2014