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!