Tag Archives: Dysfluency pride

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.

 

 

 

 

 

 

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.