Start Submission

Reading: Exploring Narrative Competence of Persons with Severe Intellectual Disabilities: Insights fr...

Download

A- A+
Alt. Display

Research

Exploring Narrative Competence of Persons with Severe Intellectual Disabilities: Insights from Complementary Inclusive Analytic Frameworks

Author:

Nicola Grove

University of Kent, GB
X close

Abstract

Narrating personal experiences can be challenging for persons with intellectual disabilities. However, they can, and do, participate as narrators in co-constructed stories. Our choice of narrative frameworks will influence how their skills are perceived and developed. When narrators have severe intellectual disabilities, a preoccupation with linear structure is likely to disadvantage them, and approaches designed for monologues, that focus on verbal linguistic elements, emphasise impairments rather than competence. Personal narratives told in everyday interactions have received little attention in this context. Two complementary perspectives, event structure and ethnopoetics, were used to analyse a small story shared between tenants and staff, highlighting different aspects of both narrative competence and conversational scaffolding. This analysis demonstrates that individuals with severe intellectual disabilities can make effective narrative contributions, using a range of patterned and evaluative strategies when stories are co-constructed within appropriately scaffolded interactions.

How to Cite: Grove, N., 2022. Exploring Narrative Competence of Persons with Severe Intellectual Disabilities: Insights from Complementary Inclusive Analytic Frameworks. Scandinavian Journal of Disability Research, 24(1), pp.224–238. DOI: http://doi.org/10.16993/sjdr.908
190
Views
34
Downloads
7
Twitter
  Published on 04 Oct 2022
 Accepted on 03 Aug 2022            Submitted on 13 Feb 2022

Introduction

The ability to narrate is a key contributor to a sense of positive identity, empathetic friendship, community and belonging (Ochs & Capps 2001). Hence it is an important dimension of interaction for persons with disabilities. The aim of this paper is to explore how individuals with severe intellectual disabilities can be shown to demonstrate competence as narrators and listeners in scaffolded dialogues when appropriate methodologies and analytic tools are employed.

People tell stories about both fictional and real life events. Personal experience narratives include “big stories” and “small stories” (Bamberg & Georgapoulou 2008). Big stories focus on significant life events and are usually generated through interviews or biographical presentations. Small stories are defined as anecdotes told in passing, embedded in conversation and often co-narrated. These stories serve multiple functions including entertainment, empathising, sense making, identity negotiation, and problem solving, and they are extremely common in everyday talk by both children and adults (Ochs & Capps 2001; Van De Mieroop, 2021; Westby & Culatta 2016). This paper features one such small story, told between persons with intellectual disabilities and the staff who care for them.

Narrative Research in the Field of Intellectual Disability

Two main lines of enquiry have predominated: life stories and narrative skill development. Life stories celebrate achievements, document historical realities, provide challenges to stereotypic views of people with disabilities, and reveal new perspectives from lived experience (Atkinson, Jackson & Walmsley 1997; Stefánsdóttir & Traustadóttir 2015). Life story work is clearly “big story” research, centred on the product/story as outcome, although the process of development is often described in some detail.

The assessment and development of narrative skills is often undertaken in the context of planned interventions to develop language or social skills. Narrative is overwhelmingly defined as a monologue—a stretch of extended discourse with one teller—with the analytic focus on structure and sequence, whether for children, youth, or adults (Hessling & Brimo 2019; Martzoukou, Nousia & Marinis 2020; Segal & Pesco 2015). It is common to apply the framework of “story grammar”, originally devised to examine written stories, and derived from the study of European folk tales (Stein & Albro 1997). Within this paradigm, data are elicited in experimental conditions or interview, frequently in response to fictional picture sequences, either generated or retold from memory. These are analysed for story elements (macro-structure) and linguistic devices (micro-structure). The ability, or rather inability, of participants to structure narratives is often compared to typically developing peers. Investigations of personal narrative in children with intellectual disabilities are less common but adopt a similar structural focus (Brown et al. 2018; Finestack et al. 2017; van Bysterveldt et al. 2012). Although relative strengths may be highlighted, the underlying perspective is impairment-centred, and when skills are found to be deficient, further research is called for, in a spiral that appears self-perpetuating.

As to intervention, the emphasis is firmly on individual skills teaching to remediate narrative impairments (Segal & Pesco 2015); these have often resulted in positive gains, but it is apparent that recipients need adequate verbal language skills to participate. The ability to produce coherent narratives with key elements in place emerges in the preschool years (approximately 30–36 months), develops throughout early and middle childhood, and is securely established only in adolescence (Westby & Culatta 2016). Such demands obviously mean those who function at an earlier level of communication, or who communicate nonverbally, will either be excluded or fail at the task. The implication is that these individuals cannot effectively tell stories, whether personal or imagined.

Flynn (2019) discusses in-depth the exclusion and marginalisation of individuals who communicate non-conventionally or pre-verbally, recommending that narrative inquiry be framed more inclusively and that attention be paid to power relations between those eliciting the narrative and the informant. She hypothesises that some of the features traditionally said to characterise participants with intellectual disabilities (suggestibility and acquiescence) may be an artefact of discourse styles. This suggests that the conversational strategies of interactive partners are critical to ensuring active participation in a narrative dialogue, as evidenced through studies of caregiver interactions (Forster & Iacono 2014; Goodwin 1995; Griffiths & Smith 2016) and of co-constructed narratives (Bunning, Gooch & Johnston 2017; Hydén & Örulv 2010).

As Flynn (2019) points out, we need to challenge normative and ableist assumptions in the field of narrative inquiry, which is enriched when we broaden our criteria of who may or may not be considered storytellers. The choice of frameworks and tools is critical. With a cognitive, structuralist focus, a “good” story is viewed as complete, orderly, monologic, and coherent, marginalising the provisional, messy, meandering collaborative telling that is characteristic of oral anecdotal conversation. In this respect, small stories can offer creative opportunities because they are often co-constructed, are non-linear in form, and allow for multiple roles in telling (Ochs & Capps 2001; Norrick 2000). By focusing on small, everyday events, we may gain insights into how people with limited conventional communication skills become involved in telling stories, and what these can reveal about their lives.

Analytic Approaches to Small Stories

With the interest in small stories comes questions of analytic methods, which are diverse. For example, a dimensional approach (Ochs & Capps 2001; Van De Mieroop 2021) explores aspects of narration such as the right to tell, interest level, structural demands, and context embedding, whereas Georgopoulou (2015) focuses on the revelation of identity. Labov and Waletzky’s (1997) widely used event structure framework (Johnstone 2016) was specifically designed to analyse personal event narratives, and it has the advantage of including nonverbal and affective aspects (evaluations). However, its emphasis on sequentiality and coherence of storyline means that elements of patterning and repetition that commonly feature in anecdotal stories are sidelined (Norrick 2000; Ochs & Capps 2001).

These aspects are foregrounded in the ethnopoetic approach originally developed to analyse stylistic verbal arts of poetic delivery (Hymes 1994). Gee (2014) adopted this as one of several discourse analytic tools and introduced a method of stanza analysis to examine patterned structure and coherence in talk, including prosodic units, descriptive cataloguing, and cumulative repetition. Stanza analysis has been criticised for circularity and for a lack of convergence between the units of analysis used by Gee and by Hymes (De Fina & Georgapoulou 2012). However, Gee (2014, 86) emphasises that it is not a fixed, right/wrong approach but is interpretive, allowing us to explore and interrogate patterns of meaning that can be applied to dialogues and to multi-party conversations. Blommaert (2006) suggests that ethnopoetic analysis may be particularly relevant to marginalised communities with limited linguistic resources, operating in contexts where the balance of power is unequal—precisely the situation that often characterises conversations between people with intellectual disabilities and care providers. Ethnopoetics has apparently not been applied previously in this context and offered a novel perspective on narrative competence.

Smith and Sparkes (2008) suggest that a multi-pronged strategy can be useful in exploring narratives. This paper uses both event structure and ethnopoetics to explore a co-narrated anecdote, with a view to broadening our understanding of who can be considered a narrator and of the affordances of an inclusive, co-constructed style of telling.

The questions motivating the analysis were as follows.

  • What contributions are made by staff and tenants to the narrative?
  • What can these two narrative approaches tell us about the skills of the narrators?

A further question was generated in discussion with the staff involved.

  • What does the story mean to the participants?

Methods

This is a small, exploratory observational study using secondary data: a film collected during a three-year project in Somerset, England, from 2008–2011 to embed the sharing of small stories of everyday life in residential homes for people with intellectual disabilities (Harwood 2011). The project developed as a result of observation indicating that staff often told stories about the people they cared for but rarely engaged them in these conversations (Grove 2014). Each home received 10 weekly visits of up to two hours, with a follow-up visit some weeks later. The emphasis was on helping the tenants and staff listen to and support each other, and training consisted of modelling good practice and then discussing together what had been observed and what should be tried out during the following week. The strategies included a focus on reportable events of interest to the tenants and staff; use of prompts; modelling; decreased use of questions; and encouragement of active listening through simple feedback such as “oh no”, “wow”, “really”, and “great”. Full details can be found at https://storysharing.org.uk.

Bad Leg Cat is one of a series of conversations where tenants and staff collaborated to recall and narrate a prior event to a naïve listener (the author, who was also filming). The film was selected because it exemplified the type of co-constructed story that the project sought to achieve. Staff who viewed it said that they found the interaction particularly engaging and instructive, leading them to think deeply about its meaning to the tenants. The event also demonstrated tenants interacting with each other—a relatively rare occurrence in research reports.

Ethical Procedures

The project was funded, ethically approved, and overseen by the local Learning Disability Development Partnership Board. Consent was obtained from all participants, including staff, using a two-step approach. For filming and participation in the project, we used a procedure known as rolling consent (Dewing 2007) adapted for persons with severe and profound disabilities (Tilley, Ledger & De Haas 2020). At each visit, project leaders checked that individuals were comfortable with participation and with filming, and they monitored this throughout the session. For subsequent use of the film and its transcript for research and training, staff gave their consent. For tenants, consent was obtained through consultation with appointed representatives advising on wishes and feelings, staff members in the case of two individuals, and next of kin for one (Department of Constitutional Affairs 2007).

Participants

All the tenants in the home had severe or profound intellectual disabilities (Department of Constitutional Affairs 2007). They needed 24-hour support and had limited communication skills. Three tenants and three staff members took part in the film. All names are pseudonyms.

Victoria was in her late fifties. She had a short auditory memory span, communicated in phrases of one to two words, and frequently echoed what was said.

Barney, in his forties, enjoyed joking and telling stories. He used mostly single words.

Michael, also in his forties, tended to sit on the periphery and watch rather than get directly involved in sessions. He used one to two words at a time.

Connor, Alice, and Hannah were experienced staff members who had worked in the home for more than three years, and they knew the tenants well.

The manager of the home, Simon, was present but did not contribute. N (author) was present as visitor and film-maker.

Data Collection

Data were gathered opportunistically during the project. Trainers had a Casio Exilim EX-ZS50 digital camera in hand, and they filmed in short bursts whenever it looked as though a promising story was about to develop. Triggers included explicit introduction (“Tell us what happened”, “We’ve got a story”), remarks by tenants or staff that clearly referenced a prior event (“Remember the sausages?”), and expectant behaviour such as leaning forwards, pausing, and looking to a key teller. In the case of Bad Leg Cat, filmed on the seventh visit, the camera was switched on as soon as a staff member introduced the topic of the cat’s visit to the vet, following an inquiry about what had happened that week. Apart from Alice’s opener, “Where did Fluffy go?” (retrieved from field notes), the whole conversation, lasting 59 seconds, was filmed. The narrative was transcribed verbatim and then reviewed independently for accuracy of content by two members of staff (Connor and Simon) who had been present during the filming. They also discussed the impact and interpretation of the story, and their comments were recorded verbatim as they spoke.

Analysis

Content having been agreed with the participating staff, the film was transcribed by the author using accepted conventions (see Appendix 1) and analysed according to two narrative perspectives: event structure, to explore story structure and evaluation, and ethnopoetics, to explore organisation through patterning. The resulting transcripts (1 and 2) are provided in the “Results and Discussion” section of the paper.

Event Structure

Structural analyses are common in investigations of narrative skills for persons with intellectual disabilities, that it is useful to consider their application with participants who present us with methodological challenges (Flynn 2019). A structural approach can illuminate which aspects of a story are accessible to which participants, as well as how the story is put together. Labov and Waletzky (1997) developed a seven-part framework based on clause identification (see Table 1).

Table 1

Event Structure Categories (Labov & Waletzky 1997).


CATEGORY DESCRIPTION

Abstract A summary, usually as an opener to gain attention and cue the audience in.

Orientation Background information: who, where, when, how the story happened

Complicating actions The main events, typically following a linear sequence

Climax/high point The most significant event, to which the story builds

Resolution How the story ends

Coda The narrator’s signing off, signalling that the floor is open to others.

A parallel dimension to structure is evaluation—what tellers feel and judge about the significance of events, conveyed through affective expressions, whether verbal (qualifiers, intensifiers, reported speech, exclamations, repetitions) or nonverbal (vocal changes in pitch, stress, volume, use of gesture and facial expression). Evaluations cluster around high points/climaxes but are distributed throughout the story, and utterances can be double coded. Evaluations can be explicit, where the narrator informs the listener about the message or point of the story, or implicit, where devices such as repetition and nonverbal, paralinguistic elements convey how the narrator felt.

Event structure was originally applied to monologic accounts. However, Norrick (2000) applied it successfully to polyphonic conversational narrative, coding each person’s utterance that contributed to the story, and this approach was adopted here. Each utterance was coded for both structure and evaluation, where this was evident. For ease of reference, a simplified transcript focuses on utterances and event structure coding (Transcript 1 pages 12–14).

Ethnopoetics

There are three stages to ethnopoetic analysis (Gee 2014). The first is the stanza analysis, which looks for patterning in the organisation of ideas. The second stage involves patterns of repetition, and the third involves patterns in prosody.

The initial process involves identifying lines—bursts of speech, defined by intonation contours, with one salient piece of information (idea unit) and often followed by a break in tempo. Lines are grouped into sets of idea units with one coherent focus, stanzas. When time, event, place, character, or perspective changes, a new stanza results. In a narrative, stanzas are organised within the larger structural hierarchy. Paying attention to lines and stanzas reveals patterns of how the narrator is constructing and organising meaning in the act of speaking. Transcript 2 (pages 15–18), annotated with prosodic details, shows the stanza analysis of Bad Leg Cat. Following Gee’s (2014) guidelines, lines were identified and grouped into stanzas. Utterances that did not seem part of the main storyline, such as bids for attention, were included but offset in the transcription. As will become apparent, the analysis identified that they were by no means tangential.

The second stage considered repetition. What is repeated, how are repetitions distributed, and what functions do they serve? Norrick (2000) suggests repetitions can signal re-thinking (as in a false start), parallel patterning to emphasise a significant event, dramatic effect, or the highlighting of evaluation. Repetitions were identified and categorised according to which individual had repeated whose preceding utterance.

The third stage involved analysing prosody, identifying stress patterns of two prominent phrases, and considering how these were echoed or varied during the storytelling.

Results and Discussion

Results are described and discussed in relation to the contribution of the two analytic perspectives to the research questions, first looking at event structure and then at ethnopoetics. Finally, an interpretation of the meaning of the story is suggested.

Event Structure Analysis

In this distributed narrative, the story emerges partly through staff questions and prompts; their input was coded both for narrative structural elements and for evaluations (shown in italics in brackets). The principal narrators are Victoria and Alice, with Barney, Hannah, Connor, and N (author) in support. Michael took a listening role.

Transcript 1. Event Structure Analysis, Bad Leg Cat

  • 1. A: where did Fluffy go? (orientation)
  • 2. V: vet (orientation)
  • 3. A: that’s right (evaluation)
  • 4. A: And what did Fluffy have done? (action)
  • 5. V: an injection (action)
  • 6. A: and a?
  • 7. V: tablet (action) (evaluation: loud voice, smile)
  • 8. N: O-oh (evaluation)
  • 9. B: Ali, Ali?
  • 10. A: because Fluffy’s got bad ((slaps leg) leg (resolution) (evaluation))
  • 11. B: Connor (.1) (xxx)
  • 12. V: (taps leg) leg (evaluation)
  • 13. N: Oh dear (evaluation)
  • 14. V: Hannah ((turns right and looks at H))
  • 15.      bad leg (abstract) (evaluation)
  • 16. H: got a bad leg (abstract) (evaluation)
  • 17. N: Fluffy’s got a bad leg (abstract) (evaluation)
  • 18. V: Connor
  • 19. C: yes
  • 20. V: bad leg (abstract) (evaluation)
  • 21. C: bad leg cat (abstract) (evaluation)
  • 22. N: bad leg (abstract) (evaluation)
  • 23. V: Alice
  • 24. bad leg (abstract) (evaluation)
  • 25. A: Oh no. (evaluation)

                                         (2-second pause)

  • 26. V: injection (action) (evaluation)
  • 27. A: injection injection going to make it better? (action) (evaluation)
  • 28. V: yeah (evaluation)
  • 29. B: oh no (evaluation)
  • 30. N: oh no, Barney (evaluation)
  • 31. H: gotta look after gotta look after Fluffy, don’t we? (coda) (evaluation)
  • 32. V: Michael bad leg Michael (abstract) (evaluation)
  • 33. N: yeah (evaluation)
  • 34. B: oh no (evaluation)
  • 35. A: oh no poorly cat (evaluation)
  • 36. V: bad leg (abstract) (evaluation)

(M leans in to hear her, they look at each other.)

  • 37. A: bad leg (abstract) (evaluation)
  • 38. H: who’s got a bad leg? tell him who’s got a bad leg, Victoria (orientation)
  • 39. V: hospital (orientation? high point?) (evaluation)
  • 40. A: injection you’ve had an injection, haven’t you? (action)
  • 41. V: hospital (orientation? High point?) (evaluation)
  • 42. B: oh no (evaluation)
  • 43. V: yeah (coda) (evaluation)

                                         (2 seconds)

  • 44. A: gotta look after the cat, haven’t we? (resolution/coda) (evaluation)

Stripped down to its structural components, the story is effectively completed within the first 13 utterances (15 seconds). The narrative is brief, and the purpose appears to be to convey facts to the naïve listener. Victoria, the main narrator, is dependent on staff to elicit information. Prioritising structure and coherence marginalises the greater part of the conversation, which provides little new information. From 14 to 44, the dialogue consists largely of Victoria repeatedly providing an abstract (bad leg) and evaluative responses by others, with the final coda (Gotta look after the cat, haven’t we) contributed by Alice. Victoria spontaneously adds one element later when she tells Michael that the cat has gone to hospital. This may be orientation (i.e. where the cat went) or alternatively a high point (climax), as argued later.

Event structure complements structural analysis with evaluations, which are much in evidence. Staff are the ones to provide linguistic evaluation through use of qualifiers (“bad”, “poorly”) and intensifiers (“gotta look after”). However, all participants use explicit exclamations and confirmations (“oh no”, “oh dear”, “yeah”), as well as implicit devices such as repetitions and prosody (see Transcript 2). Evaluation allows everyone to contribute and convey to the naïve listener (N) how she should judge the significance and meaning of the event. The staff appear very sensitive to the affective atmosphere of the story and to tenants’ feelings.

If we are interested in Victoria as a narrator, we do need to consider how she takes responsibility for leading the conversation after the opening frame. It’s apparent from the transcript that she may need support at the outset, but there are certain aspects that she can then develop effectively in her own right, soliciting contributions from others and recalling key events. She is the one who sets the affective tone of concern about the cat. Questions remain, however, as to the nature of these elements and whether they can be viewed as anything to do with narrating—that complex skill that takes years to develop and requires mastery of cognitive, linguistic, pragmatic, and cultural dimensions. Such questions may be addressed through the ethnopoetic analysis that takes account of narrative patterning.

Ethnopoetic Analysis

The results are presented and discussed first in relation to the overall organisation of the stanzas to show how different themes and ideas are picked up and developed; then exploring repetition patterns and prosodic features.

Transcript 2 shows the narrative grouped into stanzas, with prosodic features and contextual comments added. Certain aspects emerge which were obscured in the previous analysis.

Transcript 2: Stanza Analysis, Bad Leg Cat

Stanza 1.

  • 1. A: where did Fluffy go↑
  • 2. V: vet               ((looks at A))
  • 3. A: that’s right
  • 4. A: And what did Fluffy have done
  • 5. V: an injection
  • 6. A: and a=
  • 7. V =tablet ((loud voice, smiling, looks at camera))
  • 8. N: ↑ooh
  • 9. B: [Ali↑Ali↑]
  • 10. A: [because Fluffy’s got ↑bad ((slaps leg))] leg
  • 11. B. ↑Connor (1) xxx
  • 12. V: ((taps leg)) leg ((looking at A, serious face))
  • 13. N: [↑o:↓oh] [↑de:ar]

Stanza 2

  • 14. V: [ Han↑nah ] ((turns right and looks at H))
  • 15. bad leg
  • 16. H: got a bad ↑leg
  • 17. N: Fluffy’s got a bad ↓leg

Stanza 3

  • 18. V: ↑Connor ((turns and looks left at C))
  • 19. C: yes
  • 20. V: bad leg
  • 21. C: bad leg cat
  • 22. N: bad leg

Stanza 4

  • 23. V: Al:↑ice ((looks ahead to A, serious))
  • 24.      bad leg
  • 25. A: oh ↑no

                         (2 seconds)

Stanza 5

  • 26. V: injection
  • 27. A: injection injection going to make it ↑better?
  • 28. V: yea:h
  • 29. B: ↑o:↓oh ↑no:↓o
  • 30. N: [oh↑no, Barney]
  • 31. H: [gotta look after gotta look after Fluffy, don’t we↓]

Stanza 6

  • 32. V: [ Mich↑ael bad le:g Michael] ((V looks left at M serious face))
  • 33. N: ye:ah
  • 34. B: ↑o:↓oh ↑no:↓o
  • 35. A: oh ↑no poorly cat
  • 36. V: bad le:g

(M leans in to hear her. They look at each other, then V leans back and looks at the camera and pauses for 3 seconds before speaking again:)

  • 37. A: bad leg
  • 38. H: [who’s got a bad leg? ] tell him who’s got a bad leg, Victoria

Stanza 7

  • 39. V: [°hospital°] ((to M, serious face; he is still leaning in))
  • 40. A: [injection] you’ve had an injection, haven’t you↓ ((to B))
  • 41. V: °hospital° ((to M, serious face, M leans back, nods))
  • 42. B: ↑o:↓oh ↑no:↓o
  • 43. V: yeah ((to B and M, then looks towards A and N)

                                                  (2 seconds)

Stanza 8

  • 44: A. gotta look after the cat haven’t ↓we

Organisation and coherence: Stanza analysis suggests an overall patterned coherence in the narrative, with the initial facts about the event followed by refrains that pick up and highlight elements of the story. The analysis also shows how call and response sequences function as a platform for Victoria to tell the story independently. When we look at event structure elements within the stanza analysis, her ability as a narrator is revealed, distributed across stanzas, each one progressing the narrative through the specification of one key structural element:

  • Attention getter—name of individual
  • Abstract—bad leg
  • Action—injection
  • High point—hospital
  • Coda—yeah

Of course, there are numerous ways of analysing such minimal narratives, and it may be argued that hospital is purely an orientation answering the original question, Where did Fluffy go? equivalent to the vet with which the story began. However, the accompanying nonverbal behaviour, and the serious emphatic delivery, give the sense of a climax to hospital not only because it provides the fulcrum of the conversation but also because of the personal and social context of the story, discussed later.

Repetition patterns: No fewer than 57% (25) of the 44 utterances include pronounced repetitions; the most frequently repeated words being bad leg (13), followed by oh no (5), injection (5), yeah (2), the names (Alice, Michael, Connor, and Fluffy, 6 in total), gotta look after (2), and hospital (1). Two repeats of injection are in the aside by Alice to Barney, which stands outside the main dialogue, because no one else picks it up. By contrast, Hannah’s aside, “gotta look after Fluffy/the cat”, is used by Alice as the final resolution and coda combined.

The patterns of repetition are mutual and intertwined. There are seven instances of staff and visitor (N) echoing tenants, eight of tenants echoing staff, seven of staff echoing each other, one of tenant echoing tenant, and 12 self-repetitions. The choice of repetition is largely governed by Victoria, who selects the topics (bad leg and injection). It’s of interest to consider her options. All repeated items are present in the first stanza, from which she could select: vet, injection, tablet, fluffy, bad leg. That she chooses to repeat bad leg is no accident—this is a stressed phrase that functions effectively both to sum up the event and to evaluate it. Victoria, therefore, is highly sensitive to what is most significant in the story. Injection, her second choice of theme, is perhaps more salient than the alternative, tablet—everyone here takes tablets, but injections are “reportable” (Labov & Waletzky, 1997) (line 40)—she is emphasising a central event. Names, yeah, and oh no are all significant as antiphonal elements. Note that yeah is totally different to Connor’s yesyes is no more than an acknowledgement, whereas ye:ah, drawn out and emphasised, reinforces the shared importance of the telling and is deployed by Victoria to sign off the story as a coda: It is worth noting that the staff had a choice how to respond to Victoria—they could have seen her repetitions as evidence of impairment (short-term memory loss or inappropriate demand) and attempted to close her down.

Prosodic patterning: Prosody is used to segment the dialogue into its component parts and to look for echoes and regularities, identifying what is happening at a poetic, musical level. Victoria and Alice, as we might predict, are echoed most frequently. However, what looks from the transcript like a lead from one person can turn out to be deceptive. It is evident that although Barney (29) is indeed repeating Alice’s initial oh no (25), he is deploying his own cadence. Likewise, it’s clear that Victoria’s prosody for bad leg dominates throughout, with stress on the second syllable, echoed by staff. Although lexically the repetitions alternate between staff and tenants, musically it is Victoria who leads on bad leg, whereas Barney takes the lead on the oh no response.

Looking at prosody also provides a different slant on Barney’s interjection in stanza 1 (identified by staff as an extraneous comment). Structurally, it is irrelevant to the narrative, but it may provide a contribution to the poetic pattern because it is possibly his call to Alice that prompts Victoria’s call and response sequences that follow.

Metrically, the rhythms are dictated by the stress patterns of the vocabulary, and because the phrases are very short, there is not much opportunity for extended patterning. However, there is a musicality to the interchange, which is conveyed through the alternation of two patterns; Victoria consistently stresses the second syllable in both her name calling and bad leg. Barney’s o-oh no-o is produced as a sequence of four syllables, in the pattern stressed/unstressed. The two tenants, who are dominant in the interchange, act in counterpoint, and the repetitions and prosody work together to form the texture of the narrative.

In fact, Victoria can vary her prosody. At (32), Victoria turns her attention to Michael, who has till now been a passive observer, and draws him insistently into a private conversation. The prosody of bad leg changes from the low fall of call and response to a rise fall cadence, with vowel extension on the second articulation of “le:eg”. She is conveying information to him rather than purely inviting acknowledgement, as she does in the call response cadence.

Comparing Event Structure and Ethnopoetic Analysis

Event structure analysis illustrates how roles are distributed between staff and tenants, and it functions as a starting point for identifying the key events and how they are evaluated. Staff act both to set up the narrative by scaffolding the content through questions and prompting, as well as by conveying an affective stance, to which the tenants respond strongly. Staff also provide explicit resolutions. What an ethnopoetic analysis adds is awareness of patterning, without which it may be argued that the picture of Victoria as a narrator is incomplete.

Looking only at the structural components, we have a picture of someone who can provide information about an experience but who needs extensive support to do so, although she can certainly convey a powerful evaluative attitude that impacts on those around her. Even with a purely structural approach, we are faced with a choice between parsimonious and richer interpretations (bad leg as affectively evaluative repetition alone, or also as abstract; hospital as orientation or high point) and the decisions we make impact on our view of her competence. By combining structural and ethnopoetic approaches, it is possible to see how Victoria develops as a narrator in the course of the conversation.

Ethnopoetic analysis, therefore, provides some novel insights that complement and extend the findings from a structural perspective. Tenants are seen to take a real lead in the interaction, there is an equality in the balance of relationships, and Victoria’s ability as a narrator is revealed, showing how the process of initial scaffolding empowers her to structure the story with more autonomy. The story is shown to be co-constructed, not only by staff prompting but also by mutual repetition of key elements and the participation of an empathetic and responsive audience. The interchange between tenants documented here is a rare example (Kamstra et al. 2019) and is moving in its intensity. It is possibly because Victoria feels confident in her role as “caller” that she can take this initiative, and it is possibly because of the affective intensity that Barney and Michael are drawn in, with Barney actively responding, using a quiet voice, which was unusual for him.

The patterned and dynamic nature of the conversation was picked up by Simon in the subsequent discussion:

S. It’s flowing as a conversation … It’s very relevant, there’s no side tracking, as opposed to several conversations about different subjects.… Also in this little gathering, there’s a real sense of excitability, upbeat feel to it.

The sense of excitement is what Hymes (1994, 331) has called the “arc of expectation” generated through the patterning of the story as well as its structural organisation around a climax, and it has been identified by Røgeskov (2019) as a key factor in active engagement and participation between tenants and staff—produced through mutual focus, gaze, speech, and synchronic communication.

The Meaning of the Story

So what does the story mean to those involved? The first stanza tells us the facts of the trip to the vet, but both the evaluative aspect of the event structure analysis and the ethnopoetic approach emphasise that transmission of facts is only the beginning of true storytelling. Victoria and her audience are engaged in the construction of meaning through the stanza sequences, which recapitulate the events of the story. How do you show that you care? What Victoria is after, and what she gets, is emotional resonance, conveyed not just through what is said but how it’s said. Illness, hospitalisation, death, and bereavement are constants in the lives of people with severe disabilities (Heslop, Lauer & Hoghton 2015). In fact, Victoria herself became very ill not long after this film was made. Hospital is a serious and significant place to all of them. Victoria knows that going to the vet is equivalent to going to hospital. Cats don’t go to hospital (Alice did not use the term in the introductory stanza)—people do. This is a personal and rich interpretation of the data, but it was spontaneously reinforced by Connor in the follow-up discussion:

C. I’m wondering if she’s transferred from the cat to herself—because she’s got a bad leg. Because she was ill herself, before this film was taken, and after as well. And she does tap her leg; she’s relating it to herself. She had experiences of going to hospital, especially at the end.

Cats need to be cared for, but so do people, and this seems to be the message of Victoria’s story, taken up and reinforced by Alice’s final comment. We are a caring community where everyone looks out for everyone else.

General Discussion

Several years ago, Owens (2007) and Kovarsky (2008) called for changes to research methodologies, foregrounding personal narrative within a competence based perspective as the best way of enabling marginalised people to make their voices heard. One key issue is how we choose analytic frameworks and tools appropriate to the genre and social functions of a particular communication enterprise. The approach we take to narrative analysis clearly has profound consequences for the way narrators are viewed. It seems obvious that the adoption of frameworks that privilege the very skills in which people are deemed deficient will highlight their relative incompetence—thus, persons with severe intellectual disabilities are not generally considered as narrators. Personal narratives, as should be evident, are told not only to convey information logically and sequentially but also as contributions to complex networks of social relationships, and the essence of the story is its meaning to the participants. Structural and linguistic skills are of course vitally important, but so too are collaborative, poetic, affective, and embodied narrative strategies. In particular, when we are looking at children and adults with severe intellectual and communication impairments, the use of assessments that emphasise cognitive organisational skills and the referential function of narratives disadvantage such individuals as potential tellers (Flynn 2019; Grove & Harwood 2022).

For example, both analyses suggests that repetition in conversation can be viewed not as problematic but as a cohesive aesthetic (Norrick 2000). Similarly, a landmark paper by Prizant and Duchan (1981) found that echolalia served important communicative functions in the conversations of autistic children, and they recommended caution before intervening to extinguish it. Individuals with severe and profound intellectual disabilities can take part in “emotional narratives”, using their vocal and imitative skills to do so (Burford & Trevarthen 1997; Forster & Iacono 2014).

In this case, our interest is not whether Victoria, Barney, and Michael can independently narrate events from their lives but how they can participate in the sharing of meaningful stories that help to build and sustain relationships and a sense of community. The social model of disability typically uses metaphors of barriers and ramps to identify routes to participation so that when looking at interactive partners, we tend to think of skill sets and support strategies. It is clear that these staff are skilled at supportive scaffolding, but perhaps this is to undervalue these small interchanges. Their focus is not just the tenants—it is the interest level of the story, arguably a fundamentally democratising process. Staff are genuinely co-telling and treating the tenants as fellow narrators, valuing their input and their experiences in a common communicative project (Linell 2009) and orienting effectively to affect (Walton, Antaki & Finlay 2020). The successful scaffolding emerges through a form of joint storytelling that allows them to transcend demands that can set up barriers to relating. Svanelöv (2020) comments that staff see “being professional” and providing structured “correct” support as antithetical to “friendship”. Here, the extent to which staff repeat what tenants say is not only a device for maintaining their attention; it also arises out of the patterned nature of oral anecdotal telling, in which they are fully engaged. The meaning of the story emerges through the way it is collaboratively communicated, revealed by employing complementary inclusive analytic frameworks. Remembering together builds bonds and cements relationships, enhancing memories (Norrick 2000). This perspective suggests a way forward for intervention, focusing not on deficits but on a joint enterprise of anecdotal recall in which the task is to authentically share and participate in a relived experience, which creates and emphasises a sense of friendship and belonging.

Limitations of the Study

This was a small, opportunistic sample drawn from secondary data for in-depth analysis. A longer stretch of film would have illuminated how the conversation emerged from the preceding dialogue, and comparison with other corpora (unavailable) would have strengthened the analysis. It is also recognised that people with intellectual disabilities engage in a wide variety of narratives, for which other methodologies will be entirely appropriate. There are some difficulties in applying analytic frameworks originally designed for longer stretches of discourse to a short collaborative narrative. However, the study is viewed as exploratory and descriptive, and it is designed to raise issues that can inform future research.

Conclusion

It is vital to keep real-world observation to the fore when researching the lives of people with disabilities. Too much emphasis on the skills needed to independently construct and narrate a story will marginalise and exclude individuals who are unable to reach this level but who have valuable experiences to share. By using appropriate analytic tools, we can demonstrate that people with severe intellectual disabilities can take roles as active narrators and listeners when a story is valued and appropriate scaffolding is in place. Close analysis uncovers the mechanisms whereby empathy is conveyed and meanings are constructed. Moreover, engaging in the practice of small story reminiscence seemed to provide a means of redressing power imbalances between professional carers and users of the service. Future research could consider more in-depth analysis of narrative conversations with persons with severe intellectual disabilities, exploring how narrative roles are developed, sustained, and perceived.

Appendix 1: Key to Transcription Symbols

[ ] large brackets denote the beginning and end of overlapping utterances, indented

(.) a full stop in single brackets indicates a brief pause in the stream of talk

(2 seconds) a number in single brackets indicates the length of a longer pause

o:oh: colon indicates an extension of the sound or syllable

? indicates a rising inflection denoting a question

° ° quiet voice

= latching between utterances

↑↓ marked rising and falling shifts in intonation are indicated by upward and downward pointing arrows immediately prior to the rise or fall.

stress underlining indicates emphasis.

((nods)) italicised text in double brackets represents a gloss or description of some non-verbal aspect of the talk

(xx) unclear speech, with each x representing a syllable

Funding Information and Acknowledgements

The project was funded by the Somerset Learning Disabilities Partnership Board, whose sup-port is gratefully acknowledged. Particular thanks are due to the tenants and staff who participated. The author would also like to thank Yannis Gabriel, Lars Christian Hydén and two anonymous reviewers for their helpful comments, and Professor James Gee, who advised on stanza analysis.

Competing Interests

The author is the developer and director of the Storysharing® training programme.

References

  1. Atkinson, Dorothy, Mark Jackson, and Jan Walmsley. 1997. Forgotten Lives: Exploring the History of Learning Disability. Kidderminster: BILD. 

  2. Bamberg, Michael, and Alexandra Georgakopoulou. 2008. “Small Stories as a New Perspective in Narrative and Identity Analysis.” Text & Talk—An Interdisciplinary Journal of Language, Discourse Communication Studies 28(3): 377–96. DOI: https://doi.org/10.1515/TEXT.2008.018 

  3. Blommaert, Jan. 2006. “Applied Ethnopoetics.” Narrative Inquiry 16(1): 181–90. DOI: https://doi.org/10.1075/ni.16.1.23blo 

  4. Brown, Deirdre A., Emma-Jayne Brown, Charlie N. Lewis, and Michael E. Lamb. 2018. “Narrative Skill and Testimonial Accuracy in Typically Developing Children and Those with Intellectual Disabilities.” Applied Cognitive Psychology 32(5): 550–60. DOI: https://doi.org/10.1002/acp.3427 

  5. Bunning, Karen, Lynsey Gooch, and Miranda Johnson. 2017. “Developing the Personal Narratives of Children with Complex Communication Needs Associated with Intellectual Disabilities: What Is the Potential of Storysharing?” Journal of Applied Research in Intellectual Disabilities 30(4): 743–56. DOI: https://doi.org/10.1111/jar.12268 

  6. Burford, Bronwen, and Colwyn Trevarthen. 1997. “Evoking Communication in Rett Syndrome: Comparisons with Conversations and Games in Mother-Infant Interaction”. European Child and Adolescent Psychiatry 6(1): 26–30. 

  7. De Fina, Anna, and Alexandra Georgakopoulou. 2012. Analyzing Narrative: Discourse and Sociolinguistic Perspectives. Cambridge: Cambridge University Press. DOI: https://doi.org/10.1017/CBO9781139051255 

  8. Department of Constitutional Affairs. 2007. “Mental Capacity Act 2005 Code of Practice.” London: TSO. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/921428/Mental-capacity-act-code-of-practice.pdf 

  9. Dewing, Jan. 2007. “Participatory Research: A Method for Process Consent with Persons Who Have Dementia.” Dementia 6(1): 11–25. DOI: https://doi.org/10.1177/1471301207075625 

  10. Finestack, Lizbeth, Katy O’Brien, Jolene Hyppa-Martin, and Kristen A. Lyrek. 2017. “The Evaluation of a Personal Narrative Language Intervention for School-Age Children with Down Syndrome.” American Journal on Intellectual and Developmental Disabilities 122(4): 310–32. DOI: https://doi.org/10.1352/1944-7558-122.4.310 

  11. Flynn, Susan. 2019. “Rethinking Debates in Narrative Methods: Narrative Orthodoxy and Research Challenges with Children with Intellectual Disability.” Scandinavian Journal of Disability Research 21(1): 167–177. DOI: https://doi.org/10.16993/sjdr.613 

  12. Forster, Sheridan, and Teresa Iacono. 2014. “The Nature of Affect Attunement Used by Disability Support Workers Interacting with Adults with Profound Intellectual and Multiple Disabilities.” Journal of Intellectual Disability Research 58(12): 1105–20. DOI: https://doi.org/10.1111/jir.12103 

  13. Gee, James. 2014. How to Do Discourse Analysis: Theory and Method. London: Routledge. DOI: https://doi.org/10.4324/9781315819662 

  14. Georgopoulou, Alexandra. 2015. “Small Stories Research: Methods—Analysis—Outreach.” In The Handbook of Narrative Analysis, edited by Anna de Fina and Alexandra Georgopoulou, 255–72. Chichester: John Wiley and Sons. DOI: https://doi.org/10.1002/9781118458204.ch13 

  15. Goodwin, Charles. 1995. “Co-constructing Meaning in Conversations with an Aphasie Man.” Research on Language and Social Interaction 28(3): 233–60. DOI: https://doi.org/10.1207/s15327973rlsi2803_4 

  16. Griffiths, Colin, and Martine Smith. 2016. “Attuning: A Communication Process between People with Severe and Profound Intellectual Disability and Their Interaction Partners.” Journal of Applied Research in Intellectual Disabilities 29(2): 124–38. DOI: https://doi.org/10.1111/jar.12162 

  17. Grove, Nicola. 2014. The Big Book of Storysharing. London: Speechmark. 

  18. Grove, Nicola, and Jane Harwood. 2022. Storysharing®: Personal Stories for Identity and Community. In Storytelling, Special Needs and Disabilities: Practical Strategies for Children and Adults, edited by Nicola Grove, 159–167. London, Routledge. 

  19. Harwood Jane. 2011. Storysharing in Somerset 2008–2011 Final Report to Somerset LDDF board. https://storysharing.org.uk/wp-content/uploads/2021/05/storysharing-in-somerset-2008-2011-final-report.pdf 

  20. Heslop, Pauline, Emily Lauer, and Matt Hoghton. 2015. “Mortality in People with Intellectual Disabilities.” Journal of Applied Research in Intellectual Disabilities 28(5): 367–72. DOI: https://doi.org/10.1111/jar.12196 

  21. Hessling, Alison, and Danielle M. Brimo. 2019. “Spoken Fictional Narrative and Literacy Skills of Children with Down Syndrome.” Journal of Communication Disorders 79(1): 76–89. DOI: https://doi.org/10.1016/j.jcomdis.2019.03.005 

  22. Hydén, Lars Christer, and Linda Örulv. 2010. “Interaction and Narrative Structure in Dementia.” In Telling Stories: Language, Narrative, and Social Life, edited by Deborah Schiffrin, Anna de Fina, and Anastasia Nylund, 149–60. Washington, DC: Georgetown University Press. 

  23. Hymes, Dell. 1994. “Ethnopoetics, Oral Formulaic Theory and Editing Texts.” Oral Tradition 9(2): 330–70. https://hdl.handle.net/10355/64555 

  24. Johnstone, Barbara. 2016. “‘Oral Versions of Personal Experience’: Labovian Narrative Analysis and Its Uptake.” Journal of Sociolinguistics 20(4): 542–60. DOI: https://doi.org/10.1111/josl.12192 

  25. Kamstra, Afke, Annette van der Putten, Bea Maes, and Carla Vlaskamp. 2019. “Exploring Spontaneous Interactions between People with Profound Intellectual and Multiple Disabilities and Their Peers.” Journal of Intellectual and Developmental Disability 44(3): 282–91. DOI: https://doi.org/10.3109/13668250.2017.1415428 

  26. Kovarsky, Dana. 2008. “Representing Voices from the Life-World in Evidence-Based Practice.” International Journal of Language and Communication Disorders 43(suppl. 1): 47–57. DOI: https://doi.org/10.1080/13682820701698036 

  27. Labov, William, and Joshua Waletzky. 1997. “Narrative Analysis: Oral Versions of Personal Experience.” Journal of Narrative and Life History 7(1–4): 3–38. DOI: https://doi.org/10.1075/jnlh.7.02nar 

  28. Linell, Per. 2009. Rethinking Language, Mind and World Dialogically: Interactional and Contextual Theories of Human Sense Making. Charlotte, NC: International Age. 

  29. Martzoukou, Maria, Anastasia Nousia, and Theodoros Marinis. 2020. “Narrative Abilities of Adults with Down Syndrome as a Window to Their Morphosyntactic, Socio-Cognitive, and Prosodic Abilities.” Frontiers in Psychology 2060. DOI: https://doi.org/10.3389/fpsyg.2020.02060 

  30. Norrick, Neal. 2000. Conversational Narrative: Storytelling in Everyday Life. Philadelphia: John Benjamin. DOI: https://doi.org/10.1075/cilt.203 

  31. Ochs, Elinor, and Lisa Capps. 2001. Living Narrative: Creating Lives in Everyday Storytelling. Cambridge, MA: Harvard University Press. DOI: https://doi.org/10.4159/9780674041592 

  32. Owens, Janine. 2007. “Liberating Voices through Narrative Methods: The Case for an Interpretive Research Approach.” Disability and Society 22(3): 299–13. DOI: https://doi.org/10.1080/09687590701259617 

  33. Prizant, Barry, and Judith Duchan. 1981. “The Functions of Immediate Echolalia in Autistic Children.” Journal of Speech and Hearing Disorders 46(3): 241–49. DOI: https://doi.org/10.1044/jshd.4603.241 

  34. Røgeskov, Maria. 2019. “Exploring Shared Excitement: A Case Study of Participation in Interaction between Staff and Residents with Intellectual Disabilities.” Scandinavian Journal of Disability Research 21(1): 111–20. DOI: https://doi.org/10.3389/fpsyg.2020.02060 

  35. Segal, Aviva, and Diane Pesco. 2015. “Narrative Skills of Youth with Down Syndrome: A Comprehensive Literature Review.” Journal of Developmental and Physical Disabilities 27(5): 721–43. DOI: https://doi.org/10.1007/s10882-015-9441-5 

  36. Smith, Brett, and Andrew Sparkes. 2008. “Contrasting Perspectives on Narrating Selves and Identities: An Invitation to Dialogue.” Qualitative Research 8(1): 5–35. DOI: https://doi.org/10.1177/1468794107085221 

  37. Stefánsdóttir, Guðrún, and Rannveig Traustadóttir. 2015. “Life Histories as Counter-Narratives against Dominant and Negative Stereotypes about People with Intellectual Disabilities.” Disability and Society 30(3): 368–80. DOI: https://doi.org/10.1080/09687599.2015.1024827 

  38. Stein, Nancy, and Elizabeth Albro. 1997. “Of Goal-Structured Knowledge in Telling Stories.” In Narrative Development: Six Approaches, edited by Michael Bamberg, 5–44. Mahwah, NJ: LEA. 

  39. Svanelöv, Eric. 2020. “An Observation Study of Power Practices and Participation in Group Homes for People with Intellectual Disability.” Disability and Society 35(9): 1419–40. DOI: https://doi.org/10.1080/09687599.2019.1691978 

  40. Tilley, Elizabeth, Sue Ledger, and Catherine de Haas. 2020. “Enabling People with Profound and Multiple Learning Disabilities to Belong in Public and Community Archive Collections.” In Belonging for Individuals with Profound and Multiple Learning Difficulties, edited by Melanie Nind and Iva Strnadova, 176–195. London: Routledge. 

  41. van Bysterveldt, Anne Katherine, Marleen Frederike Westerveld, Gail Gillon, and Susan Foster-Cohen. 2012. “Personal Narrative Skills of School-Aged Children with Down Syndrome.” International Journal of Language and Communication Disorders 47(1): 95–105. DOI: https://doi.org/10.1111/j.1460-6984.2011.00085.x 

  42. Van De Mieroop, Dorien. 2021. “The Narrative Dimensions Model and an Exploration of Various Narrative Genres.” Narrative Inquiry 31(1): 4–27. DOI: https://doi.org/10.1075/ni.19069.van 

  43. Walton, Chris, Charles Antaki, and W. M. L. Finlay. 2020. “Orienting to Affect in Services for People with Severe or Profound Intellectual Disabilities: A UK-Based Investigation.” Journal of Applied Research in Intellectual Disabilities 33(5): 876–86. DOI: https://doi.org/10.1111/jar.12707 

  44. Westby, Carol, and Barbara Culatta. 2016. “Telling Tales: Personal Event Narratives and Life Stories.” Language, Speech, and Hearing Services in Schools 47(4): 260–82. DOI: https://doi.org/10.1044/2016_LSHSS-15-0073 

comments powered by Disqus