I have worked as a speech and language therapist with children, young people, and adults who stammer for many years and I have loved it. Being invited to explore ideas with people considering potential change in their life is a huge privilege, and as the one person in the room without lived experience of either stammering or parenting someone who stammers, I’ve learned that my first responsibility is to listen. Listen carefully, wait as long as needed, and try to hear each individual voice and understand each person’s unique views. I have training and experience, and I read research, but I know that any knowledge that I bring to the table is only a small part of the picture.
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Meeting children, young people, and their parents, I have had to learn ways to recognise and respect different views and priorities within the same situation. Meeting adults, I am struck by similarities and differences in their goals and reasons for seeking support. At every age, people who stammer are the experts on the various elements of their own situation. Each person or family coming through the door deepens, broadens, refines, and challenges what I think I know. I am constantly learning from the expertise of people who live their lives with the complex and fascinating phenomenon called stammering and who generously share that knowledge.
So perhaps it’s no surprise that when I began studying for a PhD, I wanted to continue listening and learning. I was drawn to researching views about the value (or otherwise) of adult-focused “stammering interventions”, whatever they were targeting and whoever was providing them. I noticed that within this research area, people who stammer are usually asked for their views only after the research topic or question has been chosen. Researchers often decide what should be researched about stammering, what questions should be asked, and what interventions should be studied. Ordinary people who stammer have not been asked to steer research in directions relevant to their own lives. This is changing – Action for Stammering Children have recently completed a project identifying research priorities for children and young people who stammer – but adults who stammer are a different group with different perspectives. So early in my studies I asked people who stammer whether they should be asked to identify stammering intervention research relevant to their own lives (spoiler alert – they did!), and I began recruiting a team of advisors with expertise in living with stammering to keep me “on track” during the work that was to follow.
Now, with support and input from those lived experience advisors, our first study has reached a crucial stage. We have asked people who stammer which topics and questions about adult stammering intervention they think we should research. Twenty-five participants have given us a long list of ideas and we are now seeking many more people who stammer to give their views on the importance of those ideas and tell us if anything is missing. We are looking for as many different views as possible, using mainly an online survey. This is both exciting and terrifying, as I have stubbornly resisted the temptation to plan the next stages of my PhD until this first study is completed. If I am going to listen to and learn from the voices of people who stammer in this new stage of my journey alongside them, I am determined to do it properly and ensure that I only research questions that they see as valuable!
Please do consider taking part in the current survey. It is open to anyone based in the UK with experience of stammering as an adult, regardless of their opinions about stammering or their experience of intervention. All responses will be anonymous, and we want a large number of opinions and views of stammering.
To add your views, please email me at barbara.moseleyharris@mail.bcu.ac.uk for the secure study link.
For more information about the wider project, see the project web page at Stuttering Intervention: Perspectives of Adults Who Stutter – Social Sciences | Birmingham City University
For occasional “tweets” on X, you can follow me at @harris_moseley.
Thank you for reading this, and I hope to hear from you!
By Barbara Moseley Harris
