University News Last updated 22 October
"People with a stammer face stigma. People think you’re not capable - and that reduces your confidence. But it shouldn’t define who you are or what you can do. People who stammer aren’t less able. They have their own strengths. They might just be different – and that’s OK.”
These are the words of Farzana Kausir.
Farzana is assisting Barbara Moseley Harris, a doctoral researcher and speech and language therapist, with a new research project at Birmingham City University (BCU).
The subject, as you might have guessed, is stammering.
What’s different about this project is that Barbara has chosen to give a voice to people who stammer right from the outset, in order for them to play a leading role in shaping the research.
“There are plenty of points in the research cycle where people who stammer could be involved, but often aren’t,” said Barbara. “I’m changing this by asking for input at every stage possible.”
According to research conducted in 2022 by the national charity Stamma, 2% of the adult population identify as having a stammer. This equates to over 100 million adults worldwide.
Stammering, also known as stuttering, is a speech difference. It can include repeated or prolonged sounds or words, and/or silent blocks. People do not stammer because they are nervous, or not breathing properly, or doing anything wrong – it’s neurological.
“People who stammer can experience challenges in being heard,” explained Barbara.
“While some speakers report developing strength and resilience, others describe long-term negative impacts on their self-identity, education, employment, or relationships.
“Some even learn to avoid speaking or saying what they mean so that they do not stammer.”
Joanne Lloyd, who, like Farzana, is helping Barbara with her research, said: “This is an opportunity to create something positive that benefits people who stammer in society.
“I hope it will change people’s outlook to reduce stigma.”
Joanne also has a stammer.
“I didn’t expect to be at the forefront, driving the research,” she said. “By overcoming my own challenges and putting myself out there, I hope to be a role model and empower others.”
Data gathered from an initial questionnaire, issued to a hand-selected group of around 25 people who stammer, is being used to launch a national survey – and help Barbara identify research priorities for her PhD.
It’s an unusual approach, but Barbara believes it will help create research that is clinically relevant and applicable to practice.
“In my professional life, I always asked people who stammer where they are first and work from there,” she said. “I don’t tell people what they ought to do.
“My research won’t be any different. It’s easy to fall into the trap of thinking stammering is something to be ‘fixed’. This simply isn’t the case.
“I’m not the expert. I have knowledge. People who stammer are the experts. I want to understand their priorities to shape the direction and focus for my PhD.”
Both Joanne and Farzana have bought in to Barbara’s methods.
“I haven’t done anything like this before,” said Joanne. “It’s a difficult subject for me. I wasn’t sure I was ready to go inwards and revisit the feelings I had as a child with a stutter.
“But I needn’t have worried. Barbara’s support has been incredible. She’s made us feel safe to share our experiences and research ideas. There’s a real team spirit among the advisors.”
Farzana added: “I’d like the research to produce strategies to help people who stammer cope with challenges, reflect on their journey, and achieve their goals by believing in themselves. I’m sharing my experience to ensure it improves people’s lives and gives them hope.”
Discover more about the stammering research and how to get involved.
The Dominic Barker Trust have provided a grant to fund vouchers for survey participants.