Disability

My contribution to The Stammering Collective was a talk reflecting on my work carried out over the last 10 years in relation to public understanding and awareness of stammering.  I questioned how stammering is perceived and defined by the public, spoke about how we might change wider understanding of stammering, and how we might be able to move beyond popular narratives of “overcoming” stammering.

Media engagement has been part of my professional roles with the Irish Stammering Association, the Irish Association of Speech and Language Therapists and the International Communication Project. A consistent theme I have promoted in print media, online publications, and in radio and television interviews is that, essentially, it is ok to stammer. Furthermore, it need not be seen as a negative quality needing to be fixed and it should certainly not limit the possibilities for an individual. These messages need to be repeated.

As the talk was intended as a conversation starter, it did not have a neat conclusion. Public engagement will continue over the coming years. I look forward to seeing where the conversation leads to in 2032 and again in 2042. I would hope that the “overcoming” narrative has changed and that I am able to listen to many more stammering voices on my hologram device. I also hope that these stammering voices are talking about lots of interesting things beyond the topic of stammering.  

6A01.1 Developmental speech fluency disorder.

International Classification of Diseases for Mortality and Morbidity Statistics.

Developmental speech fluency disorder is characterised by frequent or pervasive disruption of the normal rhythmic flow and rate of speech characterised by repetitions and prolongations in sounds, syllables, words, and phrases, as well as blocking and word avoidance or substitutions. The speech dysfluency is persistent over time. The onset of speech dysfluency occurs during the developmental period and speech fluency is markedly below what would be expected for age. Speech dysfluency results in significant impairment in social communication, personal, family, social, educational, occupational or other important areas of functioning. The speech dysfluency is not better accounted for by a Disorder of Intellectual Development, a Disease of the Nervous System, a sensory impairment, or a structural abnormality, or other speech or voice disorder.

• Facilitating cultural competence and awareness
• Understanding the dynamics of stigma, self-stigma and masking and the psychological consequences of living with a concealable stigmatised identity
  
• Exploring the lived experience and feelings associated with stammering in an ableist world that privileges fluency
  
• Understanding minority stress and ableist trauma
  
• Supporting the development of new affirming narratives around stammering
  
• Finding own unique stammering aesthetic
  
• Disclosure and self-advocacy
  
• Community

• Public information and education programmes
• Reducing barriers – creating a stammer-friendly environment and culture
• Campaigning
• Lobbying
• Representation
• Cultural change
• Celebration of stammering and difference

• Disability viewed as a human rights issue.
• Direct challenge to the medical model & institutions within which most SLTs have been trained and work.

Calls into question:

• Principles upon which therapy is based.
• Roles of therapist/client.
• Language.
• Range of therapies offered.
• Types, forms and aims of research into stammering.

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If speech language pathology is the intervention that stuttering activists seek from the government, medicine and private sphere, there is at least a conversation to be had about its medical necessity […] The stutter itself is only a negative bodily development if making people occasionally wait an extra two to ten minutes is a pathological emergency. This is all just to say, the burden should be on speech pathologists to prove their legitimacy on something more than merely auditory aesthetics.

— Richter (2019, p.73-74)

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Call for action

• Ethical responsibility.
• Locating therapy discourse within wider disability/neurodiversity discourse.
• Call for broader focus of therapy to address roles that self-identity, society and social stigma play.
• Drive to enrich and enhance professional accounts.
• Co-authoring therapy knowledge.

We want to affirm, especially for the young people out there, that it is okay to stutter. We believe that not only is it okay to stutter, but people who stutter should be empowered to speak however is most comfortable for them – even if that speaking style contains pauses, repetitions, and blocks.

— NYC Stutters (2020)

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• Educators to integrate the diversity agenda into speech and language therapy training to enable future therapists to consider the philosophical underpinnings of their role and approach.
• Forums for therapists to examine their underlying values, role and scope of practice.
• Meaningful collaboration to rethink the scope, focus and role of future stammering therapy for CYP & adults.
• Open, public debate about social and ethical implications of research in the fields of neuroscience and genetics.
• Research into what matters for people who stammer.
• Balanced investment of funding.
• Accessible research findings & conferences.

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Still it appears to us that the answer will be forthcoming if we as a field are serious about engaging in a partnership between researchers and the population of people who stutter, for people who stutter can provide the most meaningful metric for determining whether a treatment is viable.

— Yaruss & Quesal (2004)

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It is critical for professionals to realise that people with lived experience are best situated to drive the effort for changing how our society thinks about stuttering. Professionals bring resources and credibility to the table which can be very important for public attitude change, and they can play a supportive role to improve social conditions. However, people who stammer themselves are best positioned to promote the agenda of their community in terms of actions and policies that effect their lives.

— Boyle (2019)

The speech-language pathologist is the professional who engages in clinical services, prevention, advocacy, education, administration, and research in the areas of communication and swallowing across the life span from infancy through geriatrics.

— The American Speech And Hearing Association (ASHA) (2007:1)

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Identity


• Etymological root refers to sameness but often seen as what makes me unique – who I am.
• Medical model/social model.
• Narrative Practice – viewed as “public and social achievement”.
• Co-constructed in “the trafficking of stories about our own and each other’s lives” White (2007, 182).

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The process of professional identity

• Individual process but co-constructed.
• Multiple identities.
• Fluid, dynamic.
• Therapeutic exchanges.
• Stories told and interpreted.
• Cultural Influences.

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How are identities constructed?

O’Dwyer and Leahy (2015)

• Postmodernist thinking – multiple identities are available to an individual at any given time.
• Narratives play a large role in how we construct and re-construct these identities for ourselves and for others.
• Narratives are how we make sense of our experiences and this meaning-making in turn leads to a sense of identity. Bruner (1986: 143) explained that ‘narrative structures organise and give meaning to experience’.  Riessman(2008: 8) states that ‘individuals and groups construct identities through storytelling’ and that these identities are fluid.

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SLTs – multiple identities*

• An individual speech and language therapist has multiple identities available to them at any time.
• More aware of some than others and how conscious/aware they are of any identity at a given time varies.
• Intrapersonal and interpersonal factors influence how these identities are negotiated and renegotiated.
• These identities are negotiated in their interaction with the people they see for therapy and their families/carers.
• “Through clinical interaction clients and clinicians negotiate who they are and the roles they play in the therapy story.” Simmons-Mackie and Damico (2011:44)
• If a particular identity gets validated through these interactions, it takes hold and is performed regularly, If not validated, gets renegotiated.

*O’Dwyer, M.  and Leahy, M.M. (2016). There is no cure for this:  An exploration of the professional identities of speech and language therapists’, Journal of Interactional Research in Communication Disorders, 2, 149-167.

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Who are speech and language therapists working with children and adults who stutter and their families?
 Possible identities:

My dilemma as an SLT

How best to support speech and language therapists who are working with children and adults who stutter so that they work as allies in the context of evidence which shows that stuttering therapy has an overall positive effect.  No one treatment approach for stuttering demonstrates significantly greater effects over another treatment approach. Herder, Howard, Nye, & Vanryckeghem (2006).

• Need to validate professional identities that support.
• Learning from people who stutter.
• Therapy which focuses on positive outcomes in terms of children and adults living the lives they want  to live and the development of therapy that focuses on education and resistance to normalising discourses.
• Resists focus on fluency and cure in therapy.
• Focus on confidence, fun and delight in finding and validating identities which fit with our dreams, hopes and ambitions.

Stuttering consists of involuntary disruptions to the rhythmic flow of speech, the speaker’s cognitive and emotional reactions to them, and the speaker’s perceptions of listener reactions.

In persistent stuttering, the speaker develops a sense of self-who-stutters resulting from attributing meaning to personal experiences through self-narrative. The construction of self-who-stutters is influenced by the speaker’s relationships with others. Current research indicates a neurodevelopmental basis for stuttering, with epigenetic influences. The narratives of people who stutter are key environmental factors contributing to the epigenetic process.

— O'Dwyer (2016)

Albert Gutzmann (1837–1910)

• Published article on stuttering, Treatment of stuttering by organized and practically proven method (1879).

Hermann Gutzmann (1865–1922)

• Son of Albert Gutzmann.
• Medical doctor.
• Considered ‘The father of logopedics’.

Emil Froeschels (1884–1972)  

• Founded the International Association of Logopedics and Phoniatrics in 1924 (IALP).
• Stammering as psychological origin.
• Chewing method.
• Incorporated different theories.

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1931 – University of Iowa researchers, psychiatrist Samuel Orton (1897–1948) and psychologist Lee Edward Travis (1896–1987)

• Cerebral Dominance Theory of Stuttering.

1940s – Wendell Johnson (1906–1965)

• Diagnosogenic theory.
• ‘Anticipatory hypertonic avoidance reaction’.

1972 – Charles Van Riper (1905–1994)

• The Nature of Stuttering (1972).
• Stuttering stigma.
• Learning theories.
• Attitudes.
• Psychogenic desensitization.
• Neurogenic: acquired ‘Hesitation Phenomena’.

1959 – Howard Maclay and Charles E. Osgood

• Filled and unfilled pauses, repeats, false starts

1969 – Howell & Vetter

• '… cognitive complexity of the utterance…’

1961; 1968 – Goldman-Eisler

• Pausing.
• Interjections.
• Repetitions.
• Tempo changes.
• ‘Normal’ non-fluencies: filled and unfilled pauses 30% of the time.

To invent the sailing ship or steamer is to invent the shipwreck.
To invent the train is to invent the rail accident of derailment.
To invent the family automobile is to produce the pile-up on the highway.

— Virilio (2007)

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Transmission and Social Acceleration

The most obvious, and most measurable form of acceleration is the speeding up of intentional, goal-directed processes of transport, communication, and production (2003, 6).

— Rosa (2003, p. 6)

The center of this idea of communication is the transmission of signals or messages for the purpose of control. It is a view of communication from one of the most ancient of human dreams: the desire to increase the speed and effect of messages as they travel in space.

— Carey (2009, p. 12)

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Functional Accidents and Distributed Agency

[an accident is] a failure in a subsystem, or the system as a whole, that damages more than one unit and in doing so disrupts the ongoing or future output of the system.

— Perrow (1999, p. 66)

[O]n June 16, 1887, a Philadelphia wool dealer named Frank Primrose telegraphed his agent in Kansas to say that he had bought—abbreviated in their agreed code as BAY—500,000 pounds of wool. When the message arrived, the key word had become BUY. The agent began buying wool, and before long the error cost Primrose $20,000, according to the lawsuit he filed against the Western Union Telegraph Company.

— Gleik (2012, p. 166)

Who or what is responsible?

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Untidy Systems

Philosophers have always aimed at cleaning up the litter with which the world apparently is filled.

— James, (1996, p. 45)

[James takes seriously] a place for something like an element of chanciness or volatility within [the world’s] loose regularities and historical flows.

— Connolly (2005, p. 73)

In an untidy world, the actant is “a being or entity that makes a difference in the world without quite knowing what it is doing [emphasis added]” (Connolly, 2005, p. 72).

Communication as Ritual

• Communication, commonness, communion.
• James Carey: the model directs our attention “not toward the extension of messages in space but toward the maintenance of society in time; not the act of imparting information but the representation of shared beliefs".
• Akin to religious mass.
• Akin to reading a paper “[n]ews reading, and writing, is a ritual act and moreover a dramatic one. What is arrayed before the reader is not pure information but a portrayal of the contending forces in the world [emphasis added]” (p. 16).

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Dysfluent Accidents as Ritual

• Carol Padden: Ritual emphasizes “performance, activity, and the materiality of communication itself. In this framework, meaning is not so much the definition of a word or sentence but instead is constructed in situ, in social and cultural activity” (p. 44).
• Unlike sending a message, meaning gets enacted in the very midst of unruly bodies that excrete “all levels of expression, from the minute details of discourse—from pitch, emphasis, gesture, head tilts, and eye gaze” (p. 44).
• Moreover, since communication happens “on site,” time cannot be transcended or otherwise avoided with speed but must be lived through.

• Crossed Wires: perhaps it's not that my grumpy co-worker “misheard” my stuttered speech, but that he didn’t want to listen and did not want to belong in time to a common world with this disabled person.
• The Stall: “Part of it feels like my body goes into a kind of supplication or prayer almost. I have a friend who once referred to it as ‘watching me ask for the word’” (Ellis, 2020, n.p.).
• The misfire: “The unexpectedness of stuttering forces both listener and speaker into a space of trust and vulnerability. They must both give up control of the situation. The person speaking does not know when and for how long they will stutter. Likewise, the person listening does not know when to expect a stutter. In order for both people to communicate, they must trust one another. (Constantino 2016, para. 5)
• Ritual? Anti-ritual?

Mind your Ps and Qs is an English language expression meaning "mind your manners", "mind your language", "be on your best behaviour", "watch what you're doing".

• To our self.
• To others.
• How we talk about children who stutter.
• How children who stutter hear us talk about stuttering generally.

Action: helpful self talk to counter stereotypes.

• Gather evidence in real-life situations will lead to generating more balanced thoughts on the basis of their findings.
• People can identify helpful self-talk that will positively influence their emotional reaction and behaviour in a situation.
• Helpful self-talk can also be generated by reflecting on previous experiences that have gone well and what the person was saying to himself or herself at the time.

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For the Speech and Language Therapist

• Be aware of own thoughts, feelings and expectations around stuttering and our role as an SLT.
• Communication trumps fluency.

Action: helpful self talk.

• Handouts for teachers.
• Powerpoint for school presentation.
• Advice leaflet for parents (Generate discussion about what works in therapy  and helpful versus unhelpful advice).

Committee for the Big Stutter Party

Self disclosure/stereotype threat:

• Children can develop a “growth mindset” through learning that success takes effort.
• mistakes are opportunities to learn and grow from.
• This mindset encourages children to seek out new challenges and fulfil their potential.

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Therapeutic practices must adapt to shifts in the conditions of people’s lives.

— Winslade (2013)

It is no longer enough to give people a relationship in which they are free from being judged. What they need is an opportunity to actively deconstruct the normalising judgements operating on them and to push back against the effects of these judgements.

— Winslade, p.8 (2013)

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Rethinking covert stuttering (Constantino, Manning, Nordstrom, 2017)

• How do people who pass as fluent constitute themselves?
• Expected a straightforward study of ableism and repression.
• Got stories of resistance and agency.
• Participants did not see why stuttering was any more authentic than fluency.
• Passing is not repressed stuttering but a unique form of stuttering constituted by specific practices of self.
• Passing resists both how biology suggests a stutterer must talk and what privileges society says stutterers should have access to.

In our zeal to resist medical conceptions of stuttering do we just substitute one normalizing litmus test for another?

By rejecting fluency in and of itself or by asking whether forms of knowledge are consistent with our favorite model of disability, what ways of being do we disqualify?

I’m not comfortable telling another stutterer how to think/feel about their stuttering.

Stutterers are always already resisting how they are constituted.

How are they currently resisting societal demands for fluency?

How are they currently resisting their body’s demands for effortful speech?

Rather than see therapy as a means to liberate the self (be it fluent or stuttered) I suggest we see it as an exploration of the stutterer’s resistance and agency.

We explore how the stutterer has been constituted not to determine who they must be but to determine who they do not have to be.

We explore how they got here but leave where they’re going up to them.

In my clinical experience, most stutterers value both an increase in their ability to resist societal pressures to speak fluently and an increase in fluency, or at least easier stuttering.

• Fluent ↔︎ Stuttered
• Medical models ↔︎ Social models
• Speech restructuring therapies ↔︎ Neurodiversity

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Authentic self as fluent

Authentic self is repressed by bodily power (pathology). We can liberate the self by restoring normal functioning.

• Behavioral therapy.
• Medication.
• Surgery.

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Authentic self as stuttered

Authentic self is repressed by social power (ableism). We can liberate the self by rejecting fluency.

• Stuttering pride.
• Activism.
• Creative expression.
• Identity is always relative.

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Identity is always relative

There is no true self to be emancipated, there is only different selves constituted through power relations.

I am constantly being encouraged to pluck out some one aspect of myself and present this as the meaningful whole, eclipsing or denying the other parts of self.

— Lorde (1984)

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A rejection of authenticity does not necessarily lead to determinism.

We are free in so far as we continuously rebelling against the ways in which we are already defined, categorized, and classified.