U.S. President Joe Biden’s political career is seen by many as a disability success story — a triumph over the pronounced stutter he struggled with in his youth.
In a video from a 2020 campaign event, he is heard reassuring a young boy that the speech disorder can be overcome with practice: “Don’t let it define you,” advised Biden.
But there is an entirely different way to look at stuttering, which affects about one per cent of Canadian adults and four per cent of children, says Joshua St. Pierre, a Canada Research Chair in Critical Disability Studies and professor of political science.
Rather than an affliction to be cured, it can be seen as a preferred way of being in the world, one worth fully embracing.
A new movement of “stuttering pride” is on the rise, says St. Pierre, one that rejects the curative model as the only way to self-fulfillment. It proclaims without reservation that, “given a choice, I wouldn’t change this. I want to speak like this — there’s something inherently valuable in it.”
He says that dysfluency is desirable, “precisely because it is a transgressive form of communicating in a world that privileges communicative normalcy. Stuttering is so beautiful because it brings to the surface the visceral unpredictability of communication.”
Partly to challenge assumptions of normative communication, St. Pierre and a team of disabled and disability-allied scholars, clinicians, dysfluent artists and community members are launching a project called the Stuttering Commons.
With a Partnership Development Grant from the Social Sciences and Humanities Research Council, the project is rooted in dysfluency studies, an emerging field that questions the dominance of a medicalized approach to stuttering, which prioritizes diagnosis, management and cure of symptoms as the only way to respond to dysfluency, he says.
A seismic change in perspective
The Stuttering Commons agenda is partly driven by the motto of disability activism — “nothing about us without us.”
“Any research that is done about us has to be done with us guiding the conversation, establishing priorities, goals and outcomes from start to finish,” says St. Pierre.
As a child growing up in Rocky Mountain House, St. Pierre suffered his share of anger and shame when he was “actively ignored” by peers. He assumed stuttering was entirely his own burden — his problem to solve.
He enrolled in the U of A’s world-renowned Institute for Stuttering Treatment and Research (ISTAR) to achieve what he calls “curative belonging” — what he calls a harmful, ableist notion that “you can belong and have a place within the world to the degree you can be cured.”
As a graduate student in philosophy at the U of A, he discovered critical disability studies, which prompted a seismic change in perspective. It gave him the language to describe his experience in terms of structural injustice rather than pathology and deficit.
To find and fill a gap
“I had no idea there was this whole other way to think about stuttering that shifted the expectations off me to share them more equitably with the fluent people I was speaking to,” he says. “I could actually give that burden back, and that was tremendously empowering.”
After awakening to disability studies, St. Pierre decided to dive deep into the literature on stuttering, only to find there was none. A critical discourse on dysfluency simply didn’t exist, so as a master’s student he set out to create one with a community of like-minded activists.
But that sparked some friction with speech pathologists as he contested their “authority over the stuttering body.”
“Part of what we’re saying is, please get your hands off how we speak. Your help is actually harming in some ways, so can we talk about that?'”
Stuttering Commons will aim to foster dialogue between members of disability communities and clinicians. It will also train future dysfluency scholars, generate academic publications and provide accessible public education through workshops, online speaker series and the creation of a Massive Open Online Course (MOOC).
“This project will really move the needle, both for the stuttering community and the non-stuttering community,” says St. Pierre. “The kinds of conversations happening now were inconceivable 10 or 15 years ago.”