Abstract

This paper considers methodological and ethical implications of qualitative interview data deemed unusable for research analytic purposes because the interviewee had an intellectual disability. Critical disability studies theory is used to reimagine the utility of one case of so-called unusable qualitative data. Excerpts from this qualitative data that came from a pilot study interview of a PhD project are full of possibility for learning. Yet, among conclusions drawn, rhetoric about disability inclusion appears undermined by ableist normativity. Specifically, the problems associated with valuing abled ways of speaking within wider narrative research and scholarship will be the focus of this article.


Introduction

Commitment in disability activism and in the academy has led to improved lives for disabled people, who have traditionally been disproportionately oppressed and disadvantaged above their non-disabled peers (Goodley, Hughes, & Lennard, 2012; Goodley, 2016; Oliver & Barnes, 2012; Shakespeare, 2014). Among gains made, disability advocates and theorists have pursued better social inclusion of disabled people (Goodley et al., 2012; Oliver & Barnes, 2012; Shakespeare, 2014). Yet, there is arguably a long way to go before the reality and rhetoric of disability social inclusion are in concert.

This article considers social inclusion of disabled narrative research participants. Specifically, focus is on lack of inclusivity in the narrative research context for those with cognitive and linguistic impairment (Flynn, 2019b). This paper presents a qualitative interview research base combined with theorisation. A series of verbatim excerpts from a PhD pilot study using a biographic narrative interviewing technique, with an adolescent participant with intellectual disability, constitutes the paper's research base. 1 Ultimately, I as the researcher, along with the research supervisor, deemed the qualitative data unusable for PhD research purposes. This was due to perceived incoherence and lack of longevity in the participant's verbal accounts, contrary to requirements for methodological analysis in the study (Flynn & McGregor, 2018). I propose, however, that complex ethical dilemmas and exciting learning possibilities come into the fray, within such an omission. Moreover, theory can help to unlock some of the embedded learning which is arguably dormant within such 'anomalous' research cases.

The theoretical approach taken in this paper operates within critical disability studies. Therein, two concepts are of particular interest, and these will be introduced and explained. These are referred to as 'ableism' and 'normativity' which are prevalent within, but not exclusive to, critical disability studies (Goodley, 2013). In this context, there is the possibility that ideas about 'coherence' and 'making sense' may be overlooked and left unconsidered, rather than explicitly addressed as social and cultural constructs (Flynn, 2019b; Freeman, 2015). As such, I bring attention to how enculturated ideals of what it means to 'make sense' can be present in narrative research in sometimes subtle and unquestioned ways. From here, possibilities for a reimagined narrative approach, in which impairment is suitably accommodated, unfold.

I take several steps toward making this case. Firstly, the theoretical approach adopted will be explained and introduced. Secondly, details of the research study and the particular interview under consideration, including methodology, participant recruitment, and sampling, will be clarified. Thirdly, after some consideration of narrative disability research, illustrative quotations will be presented along with critical theorisation of their content. Fourth and finally, varied implications for wider narrative research orthodoxy are addressed in the conclusion. From the outset, I adopt a stance of egalitarianism which means that, in line with Kelly's (2007) work, it is unacceptable to exclude disabled participants. Rather, researchers must support more inclusive practices (Flynn, 2019b; Kelly, 2007). Yet, putting these aspirations aside, difficult methodological realities must still be traversed in qualitative intellectual disability research. This often involves complex ethical and practical challenges (Booth, 1996; Booth & Booth, 1996; Caldwell, 2014; Flynn, 2019b; Goldsmith & Skirton, 2015; Kelly, 2007; Lewis, 2002; Lewis & Porter, 2004; Morris, 2003; Nind, 2008; Smith-Chandler & Swart, 2014; Stalker, 2010). The task at hand is therefore a formidable one. Here, insights of this analysis will be used to reconsider how narrative research, more broadly, ought to be undertaken.

Theoretical approach

As a starting point, it is helpful to explain the meaning of normativity as a key concept in this paper. Normativity is a social phenomenon as well as site of scholarship that extends well beyond disability, but nonetheless is highly relevant to disability (Gibbard, 2012). It is often wrongly considered to be the same as normality (Vehmas & Watson, 2016). It is about 'norms' that constitute statements or decisions about what ought to be. These 'norms' create a sense of what normality is (Horne, 2001). Norms may be behaviourally and socially created and can be projected onto the body (Goodley, 2014). Here certain behaviours, mentalities and bodies are cast as 'abnormal.' At the same time, normality is presented as something different that is to be cherished and desired (Campbell, 2009; Davis, 2006; Garland-Thompson, 2017; Goodley, 2014). So much is this the case that Rosemarie Garland Thompson has produced seminal work (2017) about a notion known as 'the normate.' This notion describes an identify subject position, not yet tarred by stigma associated with disability.

In addition to understanding the concept of normativity, a second key focus of this paper is ableism. Disability studies literature that addresses debates surrounding normativity and normalising aspects of embodiment and disability, often also incorporates the concept of ableism (Campbell, 2009, 2012; Goodley, 2014). For disabled people, there can be a sense of outsiderness and otherness that is deepened by normativity in society (Campbell, 2012). To unpack this further, the notion of ableism is helpful. According to Nario-Redmond (2019), some thirty-five years ago 'ableism' was first mentioned in a news journal for women called 'Off Our Backs' (House, 1981). Since this, it has been used to challenge more classic ideas about disability (Goodley, 2014).

Ableism refers to a privileging and favouritism of abledness, that worsens disabled peoples' lives (Campbell, 2008, 2009, 2012, 2018; Goodley, 2014; Nario-Redmond, 2019). This involves a sense of entitlement associated with being abled, as well as glorification of able-bodiedness, that need not ever explicitly involve disability, in order to be harmful to disabled people (Campbell, 2009; Goodley, 2014). In this sense, ableism does not always entail intentional harm. In Maria R. Palacios' (2017) 'Naming Ableism,' ableism is equated with "the way media portrays us as either objects of pity or inspiration." It is for Palacios (2017, no page), "when you say I don't act disabled and expect me to take this as a complement." Ableism includes systems of reasoning and views that disadvantage disabled people (Campbell, 2009, 2018; Nario-Redmond, 2019). Ableist normativity, therefore, according to Campbell (2009, p.7) is a phenomenon that can present as, "the "species-typical body" (in science), the "normative citizen" (in political theory), the "reasonable man" (in law)." This means that ableist normativity involves putting forward an image of what is 'normal' that reflects able-bodiedness and is exclusionary to disabled people. Norms found within ableism are founded on ideals of bodily beauty and perfection, such as the notion that ideal minds are those of mental, emotional and sensory faultlessness. Ableism is about standards of perfection that are crass and unrealistic for most human bodies and minds (Campbell, 2009; Flynn, 2020; Goodley, 2014).

Finally, the overarching theoretical space within which both ableism and normativity are located, is called critical disability studies (Ellis, Garland-Thomson, Kent, & Robertson, 2019; Goodley, 2013, 2016; Goodley, Lawthom, Liddiard & Runswick-Cole, 2019). Conventions, themes, methodology and intellectual traditions of critical disability studies are useful to consider to arrive at some understanding of what the theoretical area is about (Goodley, 2013; Schalk, 2017; Vehmas & Watson, 2014). Firstly, it is evident that critical disability studies produces theory that also has influences from wider schools of thought such as related to post-structuralist, postmodernist and post-conventionalist thinking. It also requires us to think about disability in more transformative ways, such as going beyond purely medical, biological or social ways of viewing disablement (Goodley, 2016; Meekosha & Shuttleworth, 2009; Shildrick, 2012). It focusses on the interactions between abledness and disability, rather than focussing on disability and impairment alone.

Critical disability studies also wears a global lens, thinking about the meaning and consequence of disability across diverse geological and political territories across the world (Ellis et al, 2019; Goodley, 2013, 2016). It does not shy away from issues related to physical bodies and material worlds, whilst also maintaining focus on non-physical issues such as discrimination in society and cultures that exclude disabled people. In this way, critical disability studies accounts for the cultural, lingual, discursive, social and psychological basis of the negative issues faced by disabled people. It also lends itself to examining existing theoretical approaches to disability such as the social model or medical model of disability. The intention here is not to tear down these agendas, but rather to learn from them and forge something new (Ellis et al, 2019; Goodley, 2013, 2016; Goodley et al., 2019; Shildrick, 2012; Meekosha & Shuttleworth, 2009). Finally, critical disability studies often forms strategic alliances with other theoretical fields such as feminism, queer theory and postcolonialism (Goodley, 2013; Sherry, 2004).

Methodology

This paper uses theoretical concepts associated with critical disability studies and ableist normativity to theorise disability inclusion in narrative research. To carry out this work, theory will be interlinked with quotations derived from a body of so-called unusable qualitative interview data. The interview was undertaken as a part of a wider mixed method PhD research project with the central research question: "How have intellectually disabled young people, and their families, who avail of services from the disability sector, experienced the economic downturn?" (Flynn & McGregor, 2018, p.14). The study was supported by an advisory committee of people with intellectual disability and parents of young people with intellectual disability. The interview participant was a seventeen-year-old boy labelled with 'moderate intellectual disability,' who is hereafter referred to by the pseudonym 'Padraig.' The interview was conducted as a pilot study for the PhD research. I anticipated that the interview transcript would be fully included in the study. As such, full permissions and ethical approval was obtained for this (Flynn & McGregor, 2018). The method of interviewing for the study followed a pure application of the Biographical Narrative Interpretative Method (BNIM) (Flynn, 2019a; Flynn & McGregor, 2018). This is a phenomenologically orientated, biographical narrative, and psycho-societal approach that entails an interviewing method, and a multi-part analysis strategy, that may be used separately (Wengraf, 2001, 2020).

The interviewing approach was influenced by gestalt principles and required formulation of the SQUIN, a single narrative inducing question which I posed at the outset of interview sub session one. Thereafter, I did not interject any further in sub-session one (Wengraf, 2001). The SQUIN in this study, for the interview under consideration, was as follows:

As you know I am interested in how your life has been since the recession happened…please tell me the story of how your life has changed in the last 10 years or so. All the experiences and the events which were important for you, personally. Start whenever you like. Please take all the time you need. We've got about an hour. I'll listen first, I won't interrupt. I'll just take some notes in case I have any further questions for after you've finished telling me all about it (Flynn & McGregor, 2018, p. 68).

Despite the complex nature of the question, other adolescent participants with intellectual disability in the study responded to this question with an extended, uninterrupted flow of narrative (Flynn & McGregor, 2018). In the case at hand however, only very short phrases and utterances were provided. Narrative provoking questions were then formulated during an interlude break. This was done using prescriptive principles, that used the participant's own cue words and that followed the gestalt sequencing of sub-session one narrative (Wengraf, 2001, 2020). An optional sub-session three within a second interview (Wengraf, 2020), was forgone given the methodology issues that presented after transcription of the first interview. I took free-associative debriefing notes after the interview, in line with BNIM conventions, and again following transcription (Flynn & McGregor, 2018; Wengraf, 2001, 2020).

Following transcription of the interview, and in consultation with the research supervisor, I determined that the participant's overall interview had to be excluded from analysis. Individual verbal responses in the interview were too short and too closely tied to my prompts to progress to BNIM analysis. Therefore, transcripts were omitted from the study. The outcome of the pilot study was that the study's recruitment strategy changed (Flynn & McGregor, 2018). In this context, adolescent participants could only be initially recruited with parental consent and by a gatekeeper employed by a disability service organisation (Flynn & McGregor, 2018; Kelly, 2007). Inclusion criteria also specified that young people had to be labelled with 'mild to moderate' intellectual disability (Flynn & McGregor, 2018). This is because, according to the Irish National Disability Authority, the validity and quality of the research cannot be jeopardised by inclusive practices (albeit recognising that quality and inclusivity are not mutually exclusive) (2002, 2009). After the pilot study, however, another inclusion criterion was added by the research team for the gatekeeper to use when recruiting participants. This stated that participants must only be included in the study if they have a good level of verbal articulacy as well as good expressive and receptive language skills. This reduced the emphasis originally on the labels of 'mild' and 'moderate' intellectual disability as a criterion for inclusion in the study (Flynn & McGregor, 2018).

Narrative disability rhetoric and reality

Narrative researchers believe that people make sense of their lives by retrospectively knitting a coherent plot through what is otherwise senseless, unconnected experience (Riessman, 1993, 2008; Smith & Sparkes, 2008). Only by creating stories about our lives are past experiences no longer seen as random but connected to some wider meaning. Here, disordered experience is plotted together through narrative. A person might tell others, for instance, that a series of struggles in their lives has made them stronger as a person. In this way, they link these otherwise potentially unconnected experiences to a story of personal strength.

Moreover, by putting forth these narratives to others, one can co-construct their identity with others through shared sense-making of experience. It is also possible to convey meaning to others that we have already assigned to experiences in our lives (Polkinghorne, 1995; Riessman, 1993, 2008). In narratology, stories demand no less than utmost regard, as through narrative, meaning can be both retrieved and conveyed (Atkinson & Delamont, 2006; Riessman, 1993, 2008). Overall, the underlying premise is that human beings are social animals inclined toward story telling (MacIntyre, 1981). In this context, narrative is both a way of knowing and understanding the world and one's experience of it (Reissman, 1993; Richardson, 2000). It is also ontological as a very condition that accompanies life (Somers, 1994). Likewise, critical disability studies is interested in narrative as a part of the social world. It considers, for instance, how disability discrimination can be a by-product of relational encounters between people (Ellis et al., 2019; Goodley, 2013). Here more nuanced, subtle and embedded pathways for discrimination toward disabled people come into focus (Goodley, 2013).

In sum, there is much convergent space between narrative inquiry and critical disability studies in terms of interest in the narrative construction of identity. Specifically, the relational construction of meaning through narrative is of interest to narratologists and critical disability studies scholars alike (Ellis et al., 2019; Reissman, 1993, 2008). In this context, before moving to consider Padraig's interview excerpts, it is necessary to first revisit the claim made at the outset of this paper. Specifically, I suggested that disability inclusion rhetoric, and narrative research reality, are dissimilar in practice. The Irish National Disability Authority (NDA) (2002, p.6) states that inclusion of disabled people is an "essential element" of accurate research on matters affecting disabled people's lives. In a later publication, the NDA asserts that "involving people with disabilities in an appropriate way in informing or shaping the research process respects them as active participants in the research and not as passive objects of research" (2009, p.7).

Suffice to say, inclusion is a basis for quality in disability research endeavours. Yet, the diverse spectrum of needs and capacities, housed under the disability banner, can make meaningful inclusion difficult. Lack of verbal articulacy in young people with intellectual disability, for instance, increases likelihood of omission from research (Morris 2003; Rabiee, Sloper & Beresford, 2005). Similarly, leaving narratives from young people with significant cognitive and linguistic impairments unamended in research remains a formidable challenge (Caldwell, 2014; Flynn, 2019b). As such, new modalities of methodological inclusion in intellectual disability research continue to be necessary (Caldwell, 2014). Significant advances in capturing, centralising and disseminating the narratives of young people with intellectual disability have been made (see Alderson & Goodley, 1996; Browne & Millar, 2013; Davis, Watson & Cunningham-Burley, 2000; Flynn, 2019a; Flynn & McGregor, 2018; Kelly, 2005, 2007; Lewis, 2002, 2004; Lewis & Porter, 2004; Morris, 2003). Ultimately, however, there is a long way to go before disability inclusion rhetoric reflects research reality.

Ableist normativity and narrative

Ableist normativity is a complex concept. It is about ideals associated with perfect bodies and minds (which are never represented as disabled) that are upheld in societies in a way that disadvantages and excludes disabled people. Here ableism is a value system that celebrates and prefers ways of speaking and understanding that are not disabled (Campbell, 2009; Goodley, 2014). This includes abled verbal articulation and abled receptive and expressive language skills. Disability has the power to ruffle feathers and uncomfortably disrupt ideas that are otherwise unquestioned within ableist ways of thinking.

Within the research study at hand, this was invariably the case. As per BNIM specifications, I posed the SQUIN (singular narrative inducing question) at the outset of sub-session one. Prior to this, there was minimal but purposeful interpersonal contact between the participant and me, as required by BNIM (Wengraf, 2020). Once presented with the SQUIN, however, the participant did not respond verbally. A long pause unfolded and the participant looked to me for further guidance. Methodologically speaking, BNIM resists premature interjection by the researcher into participant pauses and silences (Wengraf, 2020). Eventually, however, I felt the need to say something. The participant then began to speak more, but only due to being promptly heavily by me. This is illustrated as follows, with pseudonymisation for place and service names, and my role as interviewer highlighted:

  1. Interviewer: "St Agatha's School and that's in Drumrath?"
  2. Participant: "County Louth"
  3. Interviewer: "Thank you, thank you for telling me that"
  4. Participant: "Yes"

As another silence began to rupture the intellectual atmosphere, I tried to stay within the approach of BNIM, which is known as active listening facilitative support (Wengraf, 2001, 2020). By virtue of me speaking at all, this approach had already been breached however. In this context Caldwell (2014) presents dyadic interviewing as a strategy where a triad configuration of intellectually disabled participant and a support person/co-interviewee respond together to an interviewer.

Caldwell's (2014) work builds on the sentiments of earlier scholarship that claimed that there is an ideological valuing of independence in research. Specifically, this is where unhelpful ideals associated with independence suggest that it is wrong for an interviewee to be dependent on others to help them to speak (Barton, 1989; Kittay, 2011; Reindal, 1999; Swain, Finkelstein, & French, 2004). Moreover, BNIM's philosophical and methodological basis views narrative as something that emerges from interactions and interdependence between people, such as arising from interviewer and interviewee dynamics (Wengraf, 2001, 2020). Overall, the implication is that narrative is a social enterprise, even when elicited under strict and rigorous scientific conditions. In the instance of Padraig's interview, the room where the interview took place had three people. Specifically, the participant and I were accompanied by a support adult who remained in the room as a disability sensitivity aid. This was a familiar and supportive family member who was there to observe, but not to interpret or interject into the interview. Now, driven perhaps by embarrassment or concern, the support person began to interject in the interview to prompt more speech from Padraig, despite having agreed not to do so:

  1. Support person: "County Louth…on Mondays what do you do?"
  2. Interviewee: "Swimming"
  3. Interviewer: "Great"
  4. Interviewee: "Tuesday- home economics, Wednesday, Wednesday- Centra, and Thursday, and Thursday- mass, go to mass, and Friday, Coffee Shop."
  5. Support person: "What do you do at home with me on Saturday?"
  6. Interviewee: "Go on the PC"
  7. Support person: "Sits in his room and does his PC- it's the only chance we have to play the PC"
  8. Interviewer: "Saturday wow, and Sunday"
  9. Interviewee: "Hhhmm let me think, chicken. Chicken for dinner"
  10. Support person: "And we go to St Agatha's School during the day"
  11. Interviewee: "Yeah, yeah"
  12. Interviewer: "Did you always go to St Agatha's School or another school before St Agathas?"
  13. Interviewee: "St Agathas, hmm, Drumrath?"

A familiar rhythm took form. Padraig spoke in short factual and descriptive utterances in response to frequent prompts from the support person and me. Meanwhile, I had wanted a rich, free-associative, uninterrupted narrative account that tapped into the lived reality of the participant (Wengraf, 2001, 2020). Ableism has a colonising effect, however, (Campbell, 2009; Goodley, 2014) whereby ways of speaking not deemed normal are forced to become more normal. As Freeman (2015, p.32) observes, 'we can become fetishists of coherence, so doggedly insistent on our own unity and integrity that we gloss over the patent incoherence that characterizes much of our lives.' In this context, Padraig's words were already being hijacked and rerouted to become more 'normal.' Whether productive or not, a population of awkward silences with support person and researcher interjections, was well underway:

  1. Support person: "No no, you weren't always in Drumrath where is the one you used to go, behind the hospital in Drumrelish what was it called?"
  2. Interviewee: "Marys"
  3. Support person: "No no no not St Mary's, before…"
  4. Interviewee: "St Agnes'"
  5. Support person: "Went to St Agnes' when he was small special school as well, (long pause) see he never volunteers information, you have to drag it out of him…"
  6. Interviewer: "Did you like St Agnes'?"
  7. Interviewee: "I was smaller"
  8. Interviewer: "Smaller, any teacher?"
  9. Interviewee: "Ciara"
  10. Support person: "Ciara was a teacher is St Agnes'"
  11. Interviewee: "Yeah and"
  12. Support person: "I don't remember her"
  13. Interviewer: "Aoife"
  14. Interviewee: "Yeah"
  15. Interviewer: "Sport did we do any sport, sport or ever do games or anything?"
  16. Interviewee: "Hhhmmmm, games, hmmm …play room"
  17. Interviewer: "You play on the PC at home anything else fun that you do at home?"
  18. Interviewee: "Henry Huggle monster"
  19. Interviewer: "Great, and like roast chicken, anything other things?"
  20. Interviewee: "Sunday"
  21. Support person: "What else would we have what else, you like ham and cabbage?"
  22. Interviewee: "Turnip"
  23. Support person: "Carrots?"
  24. Interviewee: "Nooo"
  25. Support person: "Why?"
  26. Interviewee: "Hhhm because they are soft"

The BNIM analysis process requires a quasi-quantitative and thematic type analysis of participant transcripts. This involves stripping of subjective interpretations from objective facts to form a naked biographical data chronology (Corbally & O'Neill, 2014; Wengraf, 2001, 2020). It also requires in-depth panel analysis of text segments. Whilst panels called 'micro-analysis panels' could be conducted on this sort of qualitative data, it would be difficult if not impossible to analyse within the other panel configurations used by BNIM (Wengraf, 2001, 2020). In sum, I had deemed the interview material not appropriate for inclusion in the study.

This raises complex ethical implications. In 2017, for example, Peta, Wengraf and McKenzie detailed the potential of BNIM for the development of disability studies, and in particular provided primary data indicating that the BNIM interviewing methods are conducive to facilitating otherwise marginalised disabled voices. For the PhD study at hand, the inclusive nature of the BNIM interviewing and analysis method was a reason for selecting it (Flynn & McGregor, 2018; Peta et al., 2017). Notwithstanding this, a bespoke or at least a greatly adapted BNIM analysis would be necessary (such as Hesketh, 2014) if the study was to accommodate Padraig's interview. This could entail a prolonged reapplication for ethical approval.

Moreover, Padraig's speech did not adhere to abled ideals of fluency and longevity, precluding him from the unique brand of disability inclusivity that BNIM proffers (Peta et al., 2017). In this way, interviewer and support person assistance that helped Padraig to have his voice included, was at odds with even the most inclusive approaches such as BNIM. Narrative is an established social creation (Bruner, 2002), which comes from interactions between people (Reissman, 1993). It should therefore pose no challenge that Padraig's story had become a triadic interplay of voices and social interdependencies. The hearing of Padraig's story also demands no less than diligence, as to deny his narrative is to deny him of narrative commodity, or a "psycho-socio-cultural shared resource that gives substance, artfulness and texture to people's lives" (Smith & Sparkes, 2008, p.18). Even if his narrative was analysable, it's non-normative, abbreviated and mundane nature might push publication out of bounds. Therefore ableist ideals within disability narratology prevents others from hearing his voice. As it were, Padraig did not speak for much longer, and that which he did say continued to be largely factually orientated, prompted and descriptive:

  1. Support person: "And it hasn't got to do with colour, because I offered him carrot cake and he wolfed it and…"
  2. Interviewee: "Peanuts"
  3. Support person: "No you don't eat peanuts, you told me you don't like peanuts"
  4. Interviewee: "No"
  5. Interviewer: "And what about family, have we any other family eh?"
  6. Interviewee: "Seamus and Maeve"
  7. Support person:"They are your Niece and Nephew they are not your brother and sister"
  8. Interviewer: "Do they come and visit?"
  9. Interviewee: "Yeah"

In looking to the future, Padraig's case perhaps raises issues about ableist normativity in methodology and dissemination which contain important lessons for beyond the parent study. 'Self and other' refers to a conceptual binary used in critical disability studies to reflect how disabled people are often understood with reference to an abled 'other' (Campbell, 2009; Goodley, 2013). This other is often bestowed with standards of abled perfection (Campbell, 2009, 2012; Goodley, 2013). The problem is that these standards of perfection exceed human capacities for any human, be they identifying as abled or otherwise (Goodley, 2013, 2014). In BNIM sub session one interview, the SQUIN demands no less that an uninterrupted, unsupported free associative flow of narrative, and this is a tall order for anyone.

Moreover, perhaps owing to its postmodernist ingredients, critical disability studies unsettles some bedrock assumptions about disability and ability. Of interest here is the assumption of ethics reviewers for the PhD (Flynn & McGregor, 2018) that disability would prevent participants from being able to provide free associative narrative in an unstructured interview. There was no consideration for the potential of impairment to actually help a participant exceed average human capability. In fact, in some cases the unstructured BNIM mode of interviewing was more helpful to participants whose impairments had social and sensory dimensions. In sum, there are many barriers to disability inclusivity in narrative research. These include making assumptions about disability and lack of recognition of heterogeneity in impairment type. Inability to adapt methods to account for the social interdependency that is part of human life is also a key barrier. Moving forward, the onus continues to fall on researchers to consider critically the narrative exclusion of disabled participants (Flynn, 2019b; Kelly, 2007).

Conclusion

The mission of this analysis was to theorise disability within narrative research. Given its propensity to help reveal otherwise embedded assumptions and to recognise the social and relational aspects of the exclusion of disabled people, conventions of critical disability studies were applied selectively in this paper (Goodley, 2013, 2016). To support this application of theory, verbatim excerpts from a narrative interview with a young person with intellectual disability were presented. In terms of learning for the future, the productive contribution of disability in terms of transformative teaching about all human life (Goodley, 2013) is still underappreciated. Moreover, as conveyed by disability activists, academics, artists and allies, the voices and experiences of disabled people should be central in this process, as there should be "nothing about us without us" (Crowther, 2007). For this to be optimised, how rhetoric about disability inclusion is undermined by ableist normativity is a question that continues to demand attention.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Disclosure statement

There are no conflicts of interest to disclose.

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Endnotes

  1. Full ethical approval and consent, for study and any future publication of the qualitative data, was obtained.
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