Narrative

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.  

• 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.

• A hypothetical scenario involving a child, Conor and his parents who go to see SLT, Róisín.
• While hypothetical, it is based on a range of real-life experiences of the author.
• It highlights the parents’ desire that part of SLT professional identity be “able to cure”.
• SLT resistance of that identity and choice to be an ally to Conor.
• The process of considering available evidence and seeking support from those with more experience in order to negotiate an identity regarding the type of alliance she will offer.
• Resistance of normalising discourse regarding fluency.

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Brian and Sandra – parents of Conor aged 3.4

• Conor – advanced language development, no concerns re speech errors.
• One day, out of the blue, Conor begins to repeat words and part-words.
• Sandra is surprised, then worried and… she reacts.
• Brian remembers his mother saying that one of his brothers had difficulty with speech but grew out of it.
• Conor continues to repeat, begins to prolong sounds and sometimes no sound comes out when he tries to say a word. 
• Sandra and Brian decide it's time to go to a speech and language therapist and they meet Róisín.
• Their story about Conor – about their role - about Róisín and her role – their expectations.

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Róisín

• Róisín is 25 – has been working in same job since 21 – first class honours – manager affirms her excellence  - more complex cases – wider range. 
• Anne, specialist in stuttering/fluency disorders is on maternity leave so case is assigned to Róisín.
• Róisín consults the evidence – Fluency shaping approach with lots of evidence. 
• Has notes from in-service Anne gave – decides to go with indirect approach and start with education – but assessment first including taking case history.
• And the plot thickens – Sandra ..(and Brian) want stuttering gone asap  - yes parent sessions are fine – but when is she going to see Conor and fix his speech?

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Conor

• Conor loves fun – he likes lots of things, running, painting, lego, and he has lots to say.
• He has noticed that some words seem to have a mind of their own recently and it’s like they get stuck.
• Mom and Dad have said nothing -  he has noticed they go very quiet and just look at him.
• One day last week, Granny Annie was minding him in the car and he was talking to her when a word was getting him stuck.
• She told him to “slow down, take a deep breath and start again”. 
• He could not see her face, but she sounded a bit something different.
• Note to self – try to not let words get stuck! 
  

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Assessment day for Conor

• Went   lovely place with loads of toys and met Róisín who played with me and talked to Mom and Dad.
• She made a video of me.
• Mom does that sometimes too.
• I wonder why? 
• Róisín seems to get stuck on some words too – not sure why I am here but Róisín has the best Lego and I am making an amazing bridge.
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Roisin's dilemma

• Wants to help – who? Conor? But parents want fluency.
• Her CPD, while limited, has her thinking that focusing on fluency might not be best choice. 
• She takes her dilemma to supervision.
• She Googles and finds StutterTalk. 
• She contacts the SIG/CEN.
• She decides that she needs to talk with parents about some of the difficulties she sees with focusing on fluency. 
  

• How the meaning/cultural currency of feelings/emotions change over time.
• Emotions as shaped by cultural/political forces‍
• Representation of emotions in literature/film as revealing of the power structures at work.
• ‘Affect’ is used in different ways in different fields (neuroscience, psychology and literary/cultural studies).
• Sara Ahmed, Lauren Berlant and Sianne Ngai – critics for whom affects are crucially connected to structures of power (social/cultural/political); also interested in how affective states stretch our capacity to name them but haven’t cut loose from language and cognition.
• Sianne Ngai (Ugly Feelings), she’s interested in those feelings that are seen as unproductive/marginalised.

• One of the hall-marks of affect is ‘In-between-ness’.

… the most fundamental insight of affect theory: that no embodied being is independent but rather is affected by and affects others bodies, profoundly and perpetually as a condition of being in the world.

— Ahern, A Feel for the Text. (2018)

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The challenge for researchers is that affect is not something, but rather is “in many ways synonymous with force or forces of encounter”; rather than housed in or controlled by the individual, it “arises in the midst of in-between-ness: in the capacities to act and be acted upon.

— Ahern, The Affect Reader. (2010)

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• ‘Affect’ as dynamic – emotions not static but in process – changing as they move between bodies.
• Robert Solomon recommended ‘thinking of emotions as acts’, as ‘something we do, not just have’.
• 'Affect’ captures maybe better than emotion that embodied aspect of experience (something felt before it’s understood).

We do not, as scholars from different disciplines, bring together our objects and practices to one another through a kind of free-trade agreement; rather we re-enter a long history of binding, tangling and cutting [across disciplines/practice] within which the current moves towards integration are much more weighted than they might first seem.

– Fitzgerald and Callard (2016)

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A ‘dynamic of entanglement’ rather than a push towards integration.

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We have tried to conjure a different palette of affective dispositions through which we might […] live in interdisciplinary spaces. Those dispositions (eddying around ambivalence, awkwardness, frustration, failure and so on) depart from the most common affective registers (critique, adulation, disinterested rigour) through which [many] have tended to approach the terrain of the medical, clinical or biomedical. We want resolutely to claim the stance of interestedness. But we also see interest as a stance that can be (indeed usually is) taken up without someone quite knowing the place at which they stand, or the entwinements through which they are always-already bound with/in others […]. So it is, to be entangled.

– Fitzgerald and Callard (2016)

Hercule Poirot: I pity you, Norton… how very sad to find that this great and beautiful world is so foul and disappointing. And your mother, I pity even more.

‍Stephen Norton: M-my m-m-mother? You pity my mother?

Hercule Poirot: To endure the agony of bringing you forth only to discover that she had nurtured in her loins such wickedness – is that not worthy of pity?

Stephen Norton: It is you who is n-not worthy! She m-m-meant the world to m-me!

Hercule Poirot: And you to her?

Stephen Norton: She l-loved me… l-loved me m-m-more than… m-more than…

Hercule Poirot: Did she ever hold you, Norton, as mothers do? Stroke your hair… kiss your cheek?

Stephen Norton: She… she… she…

Hercule Poirot: Scared you, did she not? She pushed you away!

— Christie (1975) ITV adaption (2013)

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)

The Questions we need to ask

Who needs to change? What do they/we need to change?

Acknowledging the natural variation, the unique skills, experiences and traits of neurodivergent children.

— Constantino (2018)

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Client who stutters

What do they understand about stuttering? And their stuttering in particular?

Cons for the Client

• Exposure: "I stutter".
• Risk of failure.
• Lack of acceptance by self and others .

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The Speech and Language Therapist

What do we understand about stuttering? Turn the tables on the process of normalising judgement As therapists we need to enquire into what a person thinks of the judgement they have been assigned. What if stuttering was the norm? If stuttering was cool…

Cons for the Therapist

• Exposing beliefs contrary to the medical model.
• Perceived risk of ‘failure’.
• Lack of acceptance by peers, clients and client's families.

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Who needs to change?

How do we do this? Is this our responsibility alone?

• Ourselves as SLTs
• Families.
• Parents.
• Teachers.
• Employers.
• School systems.
• Health services.
• Shop keepers.

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.