T-this Is How I TALK
Stammering is a multidimensional disorder characterized by involuntary prolongations, repetitions, pauses and blocks which interrupt the flow of speech and effect the person’s quality of life in a negative way
There are many definitions for stammering encompassing the different aspects of the disorder. Nevertheless, one thing that is common between almost all of them, is that they are based on research done through the perspective and observation of therapists/conversational partners/listeners and clinicians only.
Those observations and consequent definitions lack validation from people who stutter themselves...
This project aims to illustrate the experience of stammering; starting from what stammerers describe as the moment of anticipation to the various emotional, physical and behavioral reactions it evokes.
Based on testimonials and conversations with stammerers and extensive research of the numbered studies interested in the stammerers' perspective, the project poses the question:
What is it to stammer?
The following short feature offers a small glimpse of the answer and the different experiences stammerers face in their daily lives.
Patrick Campbell
Patrick is a pediatric doctor residing in Cambridge. He started stammering at a very young age (3 or 4 years old). During his teens, he was quite ashamed of his stammer and would choose not to speak sometimes; a common covert behavior amongst stammerers. Later on during medical school, it was harder to swap words or stay silent, so Patrick started speech therapy and worked hard on becoming more accepting of his stammer and more open about being a person who stammers in the society.
With that new approach, he became an avid supporter of the Dysfluency Pride Movement, which encourages stammerers to accept and be proud of their stammer. It argues against changing their speech or the use of coping mechanisms such as: word swapping or silence, while slowly shifting the societal stigma of stuttering so that it is no longer seen as the negative opposite of fluency.
He co-edited the book Stammering Pride and Prejudice. It is the first published book exploring stammering from a social model perspective written by people who stammer themselves. Among many things, it introduces common stammering narratives that often go undiscussed, offers different perspectives on stammering and emphasizes the societal barriers stammerers often face unknowingly to the general public.
Nina G
Nina started stammering when she was 8 years old, about the same time she was diagnosed with dyslexia as well. During her teen years, she would try to channel Marilyn Monroe -a stammerer herself- and come up with a funny character to mask her stammer.
However, being a funny person was to some extent true to who she was, even if it was amped up during high school. This would later be reflected in her career choice as a successful stand up comedian.
First though, she went on to study psychology and work as a councilor. During those years, she regarded her stutter as a minor inconvenience but not anything that would hinder her work, which coming from an Italian American family, was the indication of a hard working person.
It was only after attending a conference at the National Stuttering Association, that she started to perceive her stammer in a different light. The fact that stammering affects more men than women with a ratio of 4:1 across all ages , means that women who stammer usually feel a sense of isolation in society even more so than their male counterpart. So it was a pleasant -albeit unexpected- surprise for Nina to meet many women amongst the 500 people who attended that conference in 2009.
Seeing herself reflected in other women, Nina realized how much she was holding back in conversations. She started to question her feelings that resides under what she calls "the tip of the iceberg" referring to her stammer, such as: shame, isolation, guilt and hopelessness.
Returning home, she made the conscious decision to experience her stammer in a different way, to not hold herself back in conversations with colleagues, partners or family anymore, but to bring her self fully and honestly to any conversation. It was through this new honest and free space that she started to pursue stand-up comedy, becoming the first stammering female stand-up comic in the Bay area, San Francisco.
10 years later, she tells her story in Stutterer Interrupted: The Comedian Who Almost Didn't Happen, a book reflecting her experiences in a male dominated profession such as stand-up comedy and how her stammering disability is perceived in a society that is almost always not inclusive or accessible.
Jane Powell
As the CEO of STAMMA (The British Stammering Association), Jane cares deeply about all aspects of the stammering community. One of the main things, is how that community is almost always portrayed in the media as a figure of fun; a source of laughter and ridicule, reducing the person to only their stammer and nothing else.
She refers to layers and layers of negative depictions that ultimately leads to stammerers living in societies that question their intelligence, integrity and capabilities.
Although Jane is optimistic about the change in the climate around disabilities, she feels that stammering was glossed over and left behind during that discussion. So despite the fact that stammering is classified as a disability (Equality Act 2010), it is still seen as a moment of weakness or nervousness.
In 2019, STAMMA ran a survey that brought back stories reflecting the difficult reality stammerers live in. The results showed that 51% of those asked felt some degree of shame regarding their stammer. That translated in their lives in the way that they felt they couldn't apply for certain jobs if the job nature required interacting with the public on regular basis.
This impacts particularly young people; teens and people in their twenties. That means that by the time they hit their thirties and forties, they're quite used to a certain way of life. One that is in tune with giving up their initial career choice for instance due to societal pressures.
Copyrights belong to @ Erik Witsoe
Copyrights belong to @ Erik Witsoe
Jobs that include talking/answering calls regularly can be perceived as challenging for people who stammer. Copyrights belong to @ Petr Macháček
Jobs that include talking/answering calls regularly can be perceived as challenging for people who stammer. Copyrights belong to @ Petr Macháček
Stammerers view stammering itself as a multifaceted experience encompassing many different reactions (e.g. feelings, thoughts, and behaviors), limitations, and negative consequences.
The moment of stammer is simply when those experiences occur.
A new definition of stammering by people who stammer themselves consists of six themes: loss of control/sensation of being stuck, emotional reactions, behavioral reactions, cognitive reactions, limitations and impact, and perceived influence of listeners.
Understanding each theme is imperative to understanding how stammering affects the individual, their mental health and social life.
Although introducing such definitions is a step in the right direction, such themes can be abstract for people who do not stammer.
One study asked stammerers to describe their moment of stutter...
"Getting stuck like a needle on a record" P(334)
"The feeling when a stutter is coming on..." P(5)
" Getting tired of fighting trying to get a whole sentence out " P(216)
" The most common thing is people trying to finish the sentence for me, almost as if I can't say that sentence. If you give me time I could " Patrick says in answer to what reactions to stammering bothers him the most.
Although he later clarifies that this is done good heartedly and without malice, what truly annoys him personally is when the stammering person automatically becomes this stereotypical figure. One that is weak or nervous.
" Perhaps telling people not to finish your sentences is a more practical, easy, straightforward suggestion than asking them to completely reconfigure how they think about minority groups who are different from them " Patrick concedes at the end.
Perhaps he has a point. Perhaps we can start with Jane's proposition; to give them time to talk but most importantly to LISTEN.
