Restructuring the Conversation: Advocating For Change in How We Listen and Respond to Stuttering

Topical Commentary

By Fiona Höbler

You start to speak, and the first sound or part of a word gets repeated several times, or is slowly drawn out. Maybe there is no sound, but a silent pause—a block that lasts seconds before you can produce a word. These involuntary disruptions to the fluency of our speech characterize what has been clinically referred to as “childhood-onset fluency disorder” (1), or better known as stuttering or stammering. Globally, almost 400 million of us experience speech dysfluencies in our childhood, with an estimated one in five individuals continuing to live with developmental stuttering as adults (2,3).

Yet, how many of us have experienced stuttering as a listener? How did we react? What did we say? Other people’s perceptions of and reactions to stuttering, as well as to the person who stutters, is the focus of Find the Right Words (4). The 2020 campaign is a collaborative effort of support organizations for people who stutter across several countries, including the Canadian Stuttering Association (CSA), in recognition of the impact that we can all have on the self-esteem, self-perception and self-efficacy of others. Lead by the British Stammering Association, the campaign challenges us to rethink and reshape the language we use to describe and respond to stuttering, and includes editorial guidelines that highlight the unhelpful and, sometimes, harmful words and assumptions about stuttering. It ultimately strives for stuttering to be widely accepted by society as simply a way of speaking.

With an increasing understanding of the flexibility, sensitivity and diversity of our human makeup and experiences, stuttering can be defined as “a neurodevelopmental variation that leads to an unpredictable and unique forward execution of speech sounds produced in the context of language and social interaction” (5).

Developmental stuttering has a strong hereditary and neurobiological basis (6,7,8), with a life trajectory that is shaped by neurodevelopmental changes as well as by complex, multifactorial, and individualized experiences of those living with the condition (9,10,11). Observed as a loss of control over volitional speech production (12), personal factors such as behavioural, emotional, and cognitive reactions to this experience, as well as to other people’s perception of and reaction to stuttering, can influence an individual’s participation in various life situations that involve speaking and personal interaction (11,13,14). In turn, this can further influence an individual’s experience of developing relationships with others, as well as their work and educational life (11). Misconceptions and common stereotyping have the potential to contribute to the fear, shame, and embarrassment that may be felt by people who stutter, and to lead to discrimination (15,16,17).

As an oceanographer at the British Antarctic Survey (BAS), Dr. Kaitlin Naughten investigates the effects of climate change on sea levels and the melting of the Antarctic Ice Sheet. As well as working on the scientific evidence used to inform the Intergovernmental Panel on Climate Change, Dr. Naughten also seeks to bridge the gap between scientific and public knowledge on climate change with her blog, ClimateSight.

Starting her journey in Winnipeg, Manitoba, Naughten grew up with a stutter and attended speech therapy several times throughout her life. When asked about her experience, Naughten reports, “the most successful speech therapy I received was focused on making things easier for me, not necessarily for my listener.” By use of a stuttering modification approach, Naughten finds speaking to be much easier: “I still stammer, often quite a lot, but with very few proper blocks. I was taught this approach with the mindset of “letting myself stammer” rather than holding back and trying to control my voice, which I found very positive.”

Having previously internalized the stigma of stuttering, Naughten worried that her way of speaking would influence her employment opportunities as a scientist. However, with the support of her employer and colleagues, Naughten has since gone on to advocate for the support of individuals who stutter in the workplace.

“Self-advocacy is very new to me. It’s been less than three years since I started requesting special accommodations for my stammering, such as extra time when I’m giving a presentation as part of my work. It’s only been in the last year that I’ve begun to ask people to stop interrupting me when I stammer. Self-advocacy has become very important to me since I was introduced to the “stammering pride” movement, most notably through the book Stammering Pride and Prejudice.

“Self-advocacy means that I am defending my right to stammer and to be treated with respect. This is in opposition to the prevailing narrative that people who stammer must become fluent speakers in order to fully participate in society.”

With Stammering Pride and Prejudice: Difference not Defect, Campbell, Constantino, and Simpson (18) bring together the personal stories and artistic expressions of people who live with stuttering. Their literary compilation comes in direct response to their frustrations with the “thin and negative” understandings of stuttering that were available to those living with this condition. It introduces the voices of the Stammering Pride movement, which shift our focus away from the medical model that has historically been used to interpret the experience of stuttering as a pathology and impairment within the individual, to disability theory and the social model.

By using the lens of a social model, we can better identify the values and constructed norms of society which form structural, environmental and attitudinal barriers that can be more disabling to the individual than a physical condition in isolation. These socially derived constructs may contribute to the experience of mental health challenges, such as the anxieties that can develop around speaking situations, and reactive behaviours, such as situation avoidance in people who stutter. In turn, avoidance and anxiety can negatively impact treatment outcomes and the maintenance of treatment benefits in adults who stutter (19).

Photo by Jason Rosewell on Unsplash

Image source: Jason Rosewell ( Unsplash)

With accumulative evidence, there is a growing need for speech-language pathologists to address socially developed anxieties and self-stigma in their approach to the treatment of dysfluency (20). In therapy, children and adults are often encouraged to increase their openness about their stuttering, in order to improve their own comfort in speaking situations, reduce avoidance, and to support the listener’s understanding of stuttering. Marni Kinder is a Speech-Language Pathologist and Clinical Educator at the Speech and Stuttering Institute in Toronto, Ontario, and advocates for the need to consider where the client is in terms of their openness and acceptance of stuttering:

“Some clients are not yet ready to begin the process of self-advocacy as they are just beginning to come to terms with accepting the stuttering themselves. For many clients, it can take years to come to the point where a person is ready to start talking more openly about stuttering and what listeners can do to help.”

For those who are ready, speech-language pathologists can help individuals develop self-advocacy skills, which can enable them to better assert and define which supports they require to meet their own communication needs as well as to help dispel myths about stuttering and prevent misjudgement.

Lauren Linkie, a graduate of the European Clinical Specialization in Fluency Disorders program and board member at the CSA, works as Speech-Language Pathologist with young people who stutter in Vancouver, British Columbia. Linkie advocates for value-driven therapy, and developing confidence and resilience in individuals from a young age. A key component involves discussions around the differences between people, acceptance of these differences, and connecting children with other peers who stutter, which further provides opportunity for the normalization of different ways of speaking.

“It’s so important to start young, because that’s when you start to lay the foundation for later communication, communicative attitudes, and self-perception.”

An important first step to therapy is to provide education to individuals who stutter, their parents, partners and/or other family members. Stereotyping and stigma that have long been perpetuated in the media can lead to misconceptions around stuttering. As a result, parents can also have fears and anxieties about their child’s speech and the potential psychosocial impacts of experiencing communication difficulties. Young children can be susceptible to such negative attitudes and emotions, including the implications of focusing on fluent speech as the primary treatment goal. It is therefore important for speech-language pathologists to help their clients and families better understand the complex nature and experience of stuttering, so that they too are equipped to challenge the negative and false perceptions of others.

Linkie outlines how both psychosocial and communication support strategies can be incorporated into treatment:

“I think that our role is to, at least, provide opportunities for training and practice. So that should a person want to self-advocate, they feel confident that they’ve had the experience and they have the tools and the strategies in place to do that. Or should they want to use a speech strategy, they feel confident to use it in the moment, because they’ve practiced it. It’s very much about, do what you want with your speech, as long as it’s something that feels comfortable and helpful to you.”

Disclosure and self-advocacy do not fit in with every individual’s experience of stuttering. While some individuals seek therapy to help them work through their own fears and to become more accepting of their speech, others may still be averse to talking about their stutter and instead prefer to find effective strategies to manage their dysfluencies.

Reflecting the individualized needs of clients, behavioural approaches to the treatment of stuttering can also be adapted to target the aspects of the stuttering experience which the individual feels require most support and attention. These distinctions can be seen in the varying clinical interventions that are currently available, such as fluency shaping, which aims to support individuals to achieve fluency in their speech by using new behaviours or techniques that are fluency facilitating, and approaches that incorporate cognitive behavioural strategies, such as stuttering modification, which aims to desensitize the speaker to their stutter and increase their acceptance of stuttering, while reducing the tension and anxieties that develop around speaking (21).

Yet, fears of being misjudged and stigmatized persist. US President-elect, Joe Biden (22), shared his own experience with such fears, stating, “I was afraid if people knew I stuttered, they would have thought something was wrong with me.” Despite having long been an advocate for individuals within the stuttering community, Biden shies away from discussing his own dysfluency in adulthood (23).

Kinder explains that some individuals are, “more willing to disclose stuttering to help others in the stuttering community not have to go through some of the difficulties they have experienced.” This highlights the importance of self-advocacy not only as a skill for individuals who stutter, “but also to help raise public awareness as to the nature of stuttering and what listeners can do to help.”

Much work lies ahead for us to ensure a greater awareness and a better understanding of stuttering in the wider public, with calls for further action, education, and advocacy coming from within clinical and scientific communities, and the need for increased allyship from speech-language pathologists as part of this process (5,15,24).

As an advocate for herself and others in this community, Naughten reflects on its progress: “public understanding of stammering has come a long way over the last decade, and cultural events such as The King’s Speech and Joe Biden’s election have done a great deal for the cause. However, I still find that very few members of the public understand that stammering is a disability, and a neurological condition that is often genetic.

Too often I encounter the misunderstanding that stammering is a nervous habit or a sign of anxiety. Special accommodations, therefore, are often framed as an act of goodwill aimed at making me feel more “comfortable”—rather than a legal obligation to counteract the disadvantage of my disability.”

With an estimate of more than 70 million people worldwide currently living with a stutter (3), the odds are in our favour that we will encounter someone whose communicative experience we can positively influence by being understanding, more patient, and by simply listening.

“People who stammer may not need ramp access; however, we do need a society willing to listen to and respect our stammered voices. We consider this a basic human right.” (18)

Acknowledgements

We thank Kaitlin Naughten PhD, Marni Kinder MHSc S-LP (C), and Lauren Linkie MHSc S-LP (C) for their valued insights.

Featured illustration by Viktoriya Khymych for rehabINK.

To refer to this article, it can be cited as:

Höbler F. Restructuring the Conversation: Advocating For Change in How We Listen and Respond to Stuttering. rehabINK. 2021:10. Available from: https://rehabinkmag.com

References

  1. American Psychiatric Association. Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Pub; 2013.
  2. Craig A, Hancock K, Tran Y, Craig M, Peters K. Epidemiology of stuttering in the community across the entire life span. Journal of Speech, Language, and Hearing Research. 2002.
  3. Yairi E, Ambrose N. Epidemiology of stuttering: 21st century advances. Journal of fluency disorders. 2013;38(2):66-87.
  4. Find the Right Words. London: Stamma; 2020 Oct 13. Available from: https://stamma.org/findtherightwords
  5. Simpson S, Constantino C, Campbell P. Stammering: difference not defect. 12th Oxford Dysfluency 2021; Oxford, United Kingdom.
  6. Benito-Aragón C, Gonzalez-Sarmiento R, Liddell T, Diez I, Uquillas FD, Ortiz-Terán L, Bueichekú E, Chow HM, Chang SE, Sepulcre J. Neurofilament-lysosomal genetic intersections in the cortical network of stuttering. Progress in Neurobiology. 2020;184:101718.
  7. Chow HM, Garnett EO, Li H, Etchell A, Sepulcre J, Drayna D, Chugani D, Chang SE. Linking lysosomal enzyme targeting genes and energy metabolism with altered gray matter volume in children with persistent stuttering. Neurobiology of Language. 2020;1(3):365-80.
  8. Fisher SE. Genetic susceptibility to stuttering. New England Journal of Medicine. 2010;362(8):750.
  9. Smith A, Weber C. How stuttering develops: The multifactorial dynamic pathways theory. Journal of Speech, Language, and Hearing Research. 2017;60(9):2483-505.
  10. Tichenor SE, Yaruss JS. Group experiences and individual differences in stuttering. Journal of Speech, Language, and Hearing Research. 2019;62(12):4335-50.
  11. Tichenor SE, Yaruss JS. Stuttering as defined by adults who stutter. Journal of Speech, Language, and Hearing Research. 2019;62(12):4356-69.
  12. Boyle MP. The importance of self-efficacy for individuals who stutter. More than fluency: The social, emotional, and cognitive dimensions of stuttering. 2018:19-44.
  13. Boyle MP, Beita-Ell C, Milewski KM, Fearon AN. Self-esteem, self-efficacy, and social support as predictors of communicative participation in adults who stutter. Journal of Speech, Language, and Hearing Research. 2018;61(8):1893-906.
  14. World Health Organization. International Classification of Functioning, Disability, and Health: Children & Youth Version: ICF-CY. World Health Organization; 2007.
  15. Boyle MP. Personal perceptions and perceived public opinion about stuttering in the United States: Implications for anti-stigma campaigns. American Journal of Speech-Language Pathology. 2017;26(3):921-38.
  16. Boyle MP. Enacted stigma and felt stigma experienced by adults who stutter. Journal of Communication Disorders. 2018;73:50-61.
  17. St Louis KO, Tellis G. Stuttering Meets Sterotype, Stigma, and Discrimination: An Overview of Attitude Research. West Virginia University Press; 2015.
  18. Campbell P, Constantino C, Simpson S. Stammering Pride and Prejudice: Difference Not Defect. Havant, UK: J&R Press; 2019.
  19. Iverach L, Jones M, O’Brian S, Block S, Lincoln M, Harrison E, Hewat S, Cream A, Menzies RG, Packman A, Onslow M. The relationship between mental health disorders and treatment outcomes among adults who stutter. Journal of fluency disorders. 2009;34(1):29-43.
  20. Boyle MP. Assessment of stigma associated with stuttering: Development and evaluation of the self-stigma of stuttering scale (4S). Journal of Speech, Language, and Hearing Research. 2013.
  21. Guitar B. Stuttering: An integrated approach to its nature and treatment. Lippincott Williams & Wilkins; 2013.
  22. American Institute for Stuttering. VP Joe Biden delivers heartfelt speech on stuttering at AIS Gala . 2016 Jun 6 [cited 2016 Jun 17]. Available from: https://www.youtube.com/watch?v=mpYWwsjLABo.
  23. Hendrickson J. What Joe Biden Can’t Bring Himself to Say. The Atlantic: Politics. 2020 Jan/Feb: https://www.theatlantic.com/magazine/archive/2020/01/joe-biden-stutter-profile/602401/