Start Submission

Reading: Rethinking Debates in Narrative Methods: Narrative Orthodoxy and Research Challenges with Ch...

Download

A- A+
Alt. Display

Original Articles

Rethinking Debates in Narrative Methods: Narrative Orthodoxy and Research Challenges with Children with Intellectual Disability

Author:

Susan Flynn

IT Sligo, IE
About Susan
Dr Susan Flynn is an Assistant Lecturer at IT Sligo and has a number of publications pertaining to the economic recession, Critical Disability Studies and disabled children.
X close

Abstract

Undertaking narrative research with children with intellectual disability is a practical, ethical and methodological challenge. Rather than the traditional focus on how this challenge can be overcome, this paper takes up an alternative position by focusing on the relationship between disability and the wider narrative research environment. The focused commentary on the literature provided interjects into narrative methods debates by questioning what this challenge teaches us about the taken-for-granted tenets of the narrative approach. The commentary draws out broad themes from existing literature and is declared from the outset as operating from the theoretical field of critical disability studies. Specifically, the review takes up Fiona Kumari Campbell’s work on ableism, requiring that analysis and focus on amending problems that disability draws attention to does not remain with children with disability. Rather, a refocus towards implementing change within broader ableist practices, in this case within narrative research orthodoxy, is obligatory.
How to Cite: Flynn, S., 2019. Rethinking Debates in Narrative Methods: Narrative Orthodoxy and Research Challenges with Children with Intellectual Disability. Scandinavian Journal of Disability Research, 21(1), pp.167–176. DOI: http://doi.org/10.16993/sjdr.613
118
Views
38
Downloads
4
Twitter
  Published on 12 Jul 2019
 Accepted on 27 Jun 2019            Submitted on 18 Dec 2018

Introduction

Intellectual disability can present linguistic and cognitive problems in narration, meaning that narratives may not be taken seriously (Atkinson 2005). Children with intellectual disability may be non-verbal, may present with selective mutism or echolalia, or employ augmentative communication methods. The premise here is that the exceptional cases that these children represent can usefully challenge suppositions and narrative orthodoxy. This is because much of the disability studies literature on narrative inquiry has failed to produce critical commentary that takes account of underlying assumptions of narrative methods (Smith & Sparkes 2008). Undertaking research with children with intellectual disability is a practical, ethical and creative challenge for narrative researchers. Historically, the opinions and perspectives of children with intellectual disability have been frequently excluded from research about them. This was because initially much research on intellectual disability occurred within a dominant positivist orientation that used quantitative measurements. At the same time, children with disability were often not viewed as the experts on their own lives (Caldwell 2014; Flynn 2011; Goodley 1996; Kelly 2005, 2007; Smith-Chandler & Swart 2014; Stalker 2010). Furthermore, children with intellectual disability who could not use speech to articulate their thoughts and feelings were more likely to be omitted from research (Morris 2003; Rabiee, Sloper & Beresford 2005). This circumstance has changed with an increasing number of researchers representing the views and voices of children with intellectual disability in a multitude of ways (Alderson & Goodley 1996; Browne & Millar 2013; Davis, Watson & Cunningham-Burley 2000; Kelly 2005, 2007; Lewis 2002, 2004; Lewis and Porter 2004; Morris 2003). Yet, these progressions appear to stop short of producing a requisite analysis of narrative inquiry orthodoxy: an omission this paper aims to at least partially redress. Methodological challenges still remain for narrative researchers working with children with intellectual disability (Caldwell 2014) that would signify the need for further critical review. According to Caldwell (2014) there is presently an immense need for the development of new and enhanced methodologies in the field of intellectual disability research. In particular, techniques are needed that (1) increase the participation of people with intellectual disability, (2) address some of the difficulties in conducting intellectual disability research and (3) structuralize research to improve quality and facilitate communication. In keeping with a critical disability studies perspective (Goodley 2013), and more specifically incorporating insights from Fiona Kumari Campbell’s (2009) work around the concept of ableism, this paper begins with disability, then shifts and retains focus upon narrative inquiry as the identified area in need of remedial action. Impairment (intellectual disability) is therefore not viewed as the problem within presenting challenges in narrative intellectual disability research. Rather, disability, as a position that we are all liable to identify with, is recognised to be a useful starting point from which to speculate about the broader human condition (Goodley 2013). Within such an ambition, narrative as a function of self and identity (Bamberg 2011) is our focus as we examine the assumptions that underpin narrative inquiry.

The paper proceeds as follows: First, the theoretical position of the paper will be explained in more depth. Following this, three broad themes are drawn out from the literature: the relationship between power, protection and disability; the challenge of incoherence in narrative presented by cognitive or linguistic impairment; and notwithstanding immense progress, the challenge within the present nature of narrative inquiry as a broad field of practice due to a nature that remains very much engineered for, and by, articulate participants.

Theoretical Perspective

As a starting position, the sustaining theoretical perspective for the focused commentary on the literature that follows should be clarified. The overarching field, within which the present perspective might be situated, is commonly referred to as critical disability studies (CDS). It is a transdisciplinary theoretical approach incorporating insights from theoretical agendas, such as feminism and postcolonialism. It is concerned with the global nature of disability, with the relationship between conceptualisations of disability and able-bodiedness and with concepts of inter- and trans-sectionality (Goodley 2013). CDS critically considers both how disability and impairment feature in cultural, lingual and discursive domains, and their relationship to materialism and material reality, underpinned by a return to theorising the physicality of the body (Flynn 2017; Goodley 2013).

More specifically, the commentary on literature in this paper draws upon an implicit premise derived from the theoretical notion of ableism and, more specifically, draws on developments associated with Fiona Kumari Campbell’s (2009) work. From this vantage point, disability is seen as a useful starting point from which to understand ableism and the nature of able-bodiedness. In this context, ableism may be conceptualised as a bias that sustains and perpetuates ideals associated with able-bodiedness that serve to devalue adults and children who have impairments (2009). The implications of an implicit application of this theoretical perspective to the literature that follows is an explicit attempt to begin with, and then shift focus away from, disability to better understand flaws in wider narrative orthodoxy.

Introduction to Narrative Methods

The term narrative has been in existence for a considerable length of time and is used in many contexts, such as the arts and, more recently, therapy and social sciences (Owens 2007). ‘Narrative’, whether a term, phenomenon or method, has multiple meanings. Narrative research can take many forms and can be considered from numerous theoretical perspectives. Consistent with this, the body of literature on narrative is expansive (Squire, Andrews & Tamboukou 2013). Many approaches to narrative, from postmodern (Foucault 1972) to humanist (Bruner 1990) to deconstructionist (Derrida 1977), interface with and overarch a constellation of motivations for story-telling, such as those that are a function of self and identity (Bamberg 2011). Narrative has also developed in a disciplinary sense, for instance within the distinct spheres of psychology, education and social work (Squire et al. 2013). Furthermore, particular concerns exist regarding the conceptual lens or perspective from which narrative is viewed, for instance, how one determines what are the ‘big stories’ and what are the ‘little’ ones (Freeman 2006). Here, Mark Freeman (2006, 2011) establishes how life story narratives are not fixed entities, but rather a malleable and self-fashioned function of the context in which they are told. Furthermore, Squire et al. (2013) draw attention to poststructuralist and humanist traditions that focus upon narrative as a mode of resistance to structural societal power. Finally, philosopher Gilles Delueze’s influence on narrative research has promoted the communal aspect of narrative as a set of connections, rather than the simple inhabitant of an individual agent or person. With all of this diversity in mind, it is useful for the present paper to make clear what its position is in relation to narrative, for instance, what it means when referring to ‘narrative methods’. In doing so, Connelly and Clandinin’s work is helpful.

According to Connelly and Clandinin (1990: 2; Clandinin & Connelly 1994), narrative is both a phenomenon and a method. Their work brings clarity and distinction to the word narrative as it is used in the context of narrative inquiry or narrative research. As a starting point, one might consider human beings to be natural storytellers that live storied lives. As a result, the study of narrative becomes the study of human experience of the world. Connelly and Clandinin (1990) build upon this further to make a distinction between story (referring to a phenomenon) and method (referring to inquiry) as two distinct concerns. ‘Method’ is the patterns of inquiry whereby the researcher collects and studies the story and writes narratives of experience. ‘Story’ is the phenomenon of telling stories of people’s lives and leading storied lives (Owens 2007). In line with Connelly and Clandinin’s work (1990, 1994), this paper will refer to narrative methods as a mode of inquiry and then separately will use the term story intermittently to refer to the phenomenon that narrative methods inquire into.

Related also to the focus in this section, on establishing the meaning of narrative as it is referred to in the paper, is the circumstance of diversity within children with intellectual disability. This must be accounted for, as it has clear implications for research methods. Some children with intellectual disability cannot verbally articulate their experiences and therefore are likely to be omitted from narrative methods reliant upon generating narrative, where narrative refers narrowly to a verbal technique. In this sense, within the literature more broadly, the term narrative or personal narrative is used to refer to a particular form of talk that people produce based on events, described by Labov and Waletzsky as a ‘verbal technique for recapitulating experience’ (1967: 16). This talk aims to draw the listener into the teller’s past to convey a point or moral lesson (Reissman 2008). When referring to story within the following paper, the intention is to reference the wider phenomenon of narrative and storytelling in a more inclusive sense to incorporate those stories intellectually disabled children may have but struggle to verbally articulate. This is aligned to Barthes (1975) work that identifies narrative as taking different forms, for example, within photographs or comedy. More broadly, this wider conceptualisation of narrative might be framed within the increasing recognition outlined by Kelly (2007) that it is no longer acceptable to exclude intellectually disabled children, but rather the responsibility rests with the researchers to develop more inclusive approaches.

The field of study into personal narrative overarches all of these concerns and is both interdisciplinary (Reissman 2008) and in its entirety referred to by some as narratology (Connelly & Clandinin 1990). This is a broad field that encompasses diverse methods that might be thought of as existing on a continuum. At one pole are structured approaches to narrative inquiry. Here Labov and Waletzsky (1967), for instance, rely on social linguistics to fashion a definitive start, middle and end to stories. On the other end of the continuum is work such as that of Louis ‘Studs’ Terkel (2013), who presented stories in their own right as ‘raw’ or unprocessed narrative.

The present paper focuses upon narrative methods across the continuum. This broad focus is necessary to substantially recognise the diversity of children with intellectual disability as a heterogeneous group and to acknowledge that flexibility, creativity and diversity in narrative methods has been, and remains, a requirement in response. In calling for flexibility as an approach to research with children with intellectual disability, the intention is not to restate an argument already progressed by other authors (Kelly 2007). Rather, it is to accentuate the significance of the challenges within the use of narrative methods with children that story their lives in different and innovative ways as a result of having difficulties with verbally articulating experience. Further, more structuralized approaches, such as that of Labov and Waletsky (1967), appear to satisfy a positivist urge to quantify and to categorise stories that seems at odds with embracing the diversity within children with intellectual disability who communicate in less traditional ways. Rather, it would appear that flexibility around adopting narrative methods across the continuum of structured to unstructured designs might be a more suitable response to the diversity within children with intellectual disability.

Considering this, Owens (2007) offers a detailed engagement with the various theoretical, ethical and practical considerations of undertaking narrative methods with people who lack articulacy. She concludes that the skills and experience of the researcher and a reflexive stance to research are important, and similar to the case already made, she suggests more flexibility in moving away from traditional and rigid qualitative methods. Whilst Owens’s suggestion has merits, one might add that some children may indeed benefit from rigid formats, thus the approach taken should be based upon flexibility or indeed rigidity in methods dependent upon a strongly acquired understanding of the individuality of each child as the key criterion. With this in mind, this section has presented a discussion around the meaning of narrative to add clarity to the use of the term in the paper overall. The paper proceeds with the understanding established in this section that narrative is both a method and a phenomenon in line with Connelly and Clandinin’s (1990) work.

Starting Point with Respect to Existing Literature

This paper focuses on interjecting into current debates on narrative methods. Within this, the implication of the theoretical approach taken, based in the concept of ableism and overarching CDS, is a specific consideration of how the narrative approach may operate in favour of able-bodied people (Campbell 2009; Goodley 2013). The concept of ableism associated with the theoretical work of Campbell (2009) reflects this as it pertains to favouritism of able-bodied people and of aspiration toward able-bodied ideals. What the influence of CDS adds to the analysis is a decisive attempt not to dwell on children with intellectual disability as though they are the problem and therefore the focus of remedial action (Goodley 2013). Moving forward, throughout the following analysis, reference to this theoretical position will be revisited.

More broadly, serious concerns and challenges specifically pertain to narrative-based research with children with intellectual disability (Kelly 2007); therefore, it is a powerful case to rupture suppositions. Summative work already exists on the challenges inherent within intellectual disability research more generally. Authors such as Browne and Millar (2013), Goldsmith and Skirton (2015), Nind (2008) and Stalker (2010) all offer papers that specifically focus upon methodological, practical and ethical challenges in learning and intellectual disability research, establishing that such challenges persist. Additionally, Smith-Chandler and Swart (2014) focus upon the influence of the epistemological and ontological lens upon narrative research with people with disability. Dorothy Atkinson’s work (1993, 1999, 2000, 2004, 2005) has been key to developing the field of expertise surrounding life story and qualitative research with people with learning disability. Kelly (2007) more specifically looks at the qualitative research case with children with intellectual disability.

Yet, much of the consideration of challenges in intellectual disability research has been about disability, thus establishing the need for an analysis that considers how ableism and able-bodied ideals feature in the wider narrative approach (Campbell 2009). Beginning to view disabled people as experts on their lives and, therefore, undertaking more collaborative research has led to maturity in this area (Emerson et al. 2004). Nonetheless, a presenting challenge in intellectual disability research could be viewed as no more than a simple signifier of fault in the research method or methods at hand. The latter case realigns itself with narrative research literature from such key authors on narrative as Polkinghorne (1995), Reissman (2008) and Wengraf (2001) and takes a critical perspective on existing narrative inquiry. This critical approach is supported by the theoretical strategy of CDS, which perceives disability as a productive starting point from which to learn about the broader nature of all human existence (Goodley 2013). More specifically, the aspect to be understood here is the taken-for-granted tenets of the wider narrative approach.

Finally, as established within Nind (2008), this paper takes as its starting point an acceptance that children with intellectual disability can provide valuable and valid data within narrative-based research despite the presence of communication difficulties. In this sense, Atkinson (2004) advises this is a fact well established within existing research from such authors as Booth and Booth (1994, 1996, 2003), Bogdan and Taylor (1976), Edgerton and Bercovici (1976), Goodley (1996), Rolph (1999) and Stuart (2002). How the present nature and form of narrative inquiry still sustains, accommodates or trivialises an exclusionary relationship with participants who have communication difficulties is of particular relevance to question in progressing this work.

Narrative, protection and power

Narrative intellectual disability research can offer insights into issues of power and protection generalisable to wider narrative debates. In particular, this section makes the case that extensive effort to problematise and analyse power in narrative inquiry overall (Reissman 2008) may benefit from insights surrounding the complexities that disability presents.

The principle of doing no harm to the child participant must underpin the narrative researcher’s approach as an essential starting point (NDA 2009). Yet, how best to avoid causing harm is not always clear, albeit participants’ voices offer a critical reference source (NDA 2009; Whyte 2006). Various challenges identified in the literature, such as respecting personal space, addressing potential expectations of continued friendship, managing distress (Goldsmith & Skirkon 2015; Nind 2008; Stalker 2010) and the potential of research with children with intellectual disability to engender difficult issues of power (Stalker 2010) have been identified. These challenges unsettle taken-for-granted aspects of the narrative approach when they are complicated by participants with non-verbal and non-normative communication (Simons, Booth & Booth 1989; Stalker 2010). Existing remedial strategies developed with respect to these challenges in the area of intellectual disability appear, in practice, to have little to do with intellectual disability in isolation. This perhaps reflects an issue of broader currency to be captured with respect to wider narrative debates. In terms of remedial strategies, researchers should take the time to build communication and rapport (Davis et al. 2000; Kelly 2007) and carefully select interview methods and develop good skills and expertise to improve the final narrative product (Owens 2007). Additionally, choosing a familiar and comfortable interview location and having an advocate or support person present during the interview offer practical solutions to achieve a more inclusive narrative approach (Whyte 2006).

Acknowledging the CDS theoretical approach taken also requires insight from challenges to be extended to narrative discourse, it appears that identity as a related concept may be illustrative in this regard. Aversion to causing harm to participants with disability in the aforementioned ways is tied to notions of vulnerability assigned to their identity and can manifest in paternalism and over-protection, assigning them to a position of increased powerlessness (Shakespeare 2015). Here, practical solutions may allay concerns for vulnerability. Picture exchange communication system (PECS) cards or coloured flashcards, as well as process consent that involves gathering consent for participation several times throughout the interview, may be facilitative (Tuffrey-Wijne, Bernal & Hollins 2008). Triangulation (using more than one method or interviewing more than one person on the same subject to assure validity), as well as completing reliability checks on transcripts, may also safeguard participants against misrepresentation of their narratives and ensure quality (Whyte 2006). Notwithstanding the utility of these solutions, it is important also to problematize them. Techniques, such as triangulation, come with the risk of decentralising or minimising the child’s narrative (Caldwell 2014). Similarly, aids, such as PECS, may curtail the flow or gestalt of the child’s narrative (Wengraf 2001). Therefore, from a CDS perspective, researchers must remain critical about potential normalising and adverse effects.

Notwithstanding this, within narrative inquiry orthodoxy, the human subject makes sense of itself and its social world through the medium of narrative (Reissman 2008). This is a basic assumption of narrative inquiry (Smith and Sparkes 2008). Stories construct identity in an effort to render meaningful that which is otherwise incoherent and inchoate (Bamberg 2011; Reissman 2008). Yet, paternalistic and medicalized efforts to prescribe meaning and order to disability have already been detrimental. People with disability have been homogenised and labelled (intellectual disability), categorised (mild, moderate, profound) and assigned to social and physical spaces (communal, institutional and segregated) (Shakespeare 2015). In short, essentialist ideas of the human have been, and continue to be, detrimental for analogous bodies and minds (Feely 2016; Flynn 2017). Therefore, arguably, the narrative approach taken must avoid the perpetuation of paternalism and over-protection towards young people with disability, leading to powerlessness and reinforcing harmful existing stereotypes (such as that people with disability are helpless and need protection) (Swain & French 2000).

Considering wider narrative debates, it is recognised that the epistemological and ontological perspective through which research is conceptualized has the power either to subjugate or to emancipate the experience of individuals (Smith-Chandler & Swart 2014). Power has been comprehensively theorised within this through such pathways as Foucauldian analyses (Squire et al. 2013). The power of narrative reassigns children with intellectual disability the power to story their own identity (Smith-Chandler and Swart 2014), as is the case with any individual. This power is also important to prevent the imposition of the able-bodied ideals of others upon their identity (Campbell 2009). Nevertheless, the degree to which this is possible is perhaps heavily dependent upon the particular narrative research method selected (for example, heavily structured or unstructured qualitative interviewing designs) (Wengraf 2001). By critically reflecting on power, narrative researchers have sought to mitigate its harmful effects in their research processes (Riessman 2008). Feminists and other transformative agendas in the social sciences have pushed for less dominating and more relational interviewing modalities, which replicate and respect participant’s own ways of organizing meaning in their lives (DeVault 1999). What the case of disability affirms within these wider narrative debates is the case for a requisite strong acknowledgment of the implications of choice of research method and methodology for issues of power, protection and participant identity. Theoretically, CDS and ableism theory further adds to this the importance of questioning whether able-bodied ideals, such as value for a participant’s capacity to generate normative data, feature.

Suggestibility and coherence

Suggestibility and coherence, as interrelated concepts, are useful in progressing the present interjection into narrative debates. This progression begins with the difficulty in managing the influence of the researcher in terms of the alleged suggestibility of children with intellectual disability (Simons et al. 1989). According to Kelly (2007), traditionally there have been concerns about how researchers can manage the suggestibility of children when undertaking interviews with them. Kelly highlights that this notion of suggestibility is not uncontested, pointing to a body of research that concludes that adults may in fact be as suggestible as children. Compounding matters, intellectual disability has also been equated with suggestibility. Here, through a CDS perspective, a critical questioning of the role of disability is required (Goodley 2013). Both Goldsmith and Skirkon (2015) and Stalker (2010) point to the alleged tendency of some people with learning disability towards acquiescence, as initially discussed within Simons, Booth and Booth’s (1989) work. This acquiescence bias tested within conversational analysis has, however, led Rapley and Antaki (1998) to conclude that the phenomenon is likely to be an artefact of interview techniques, rather than an inherent disposition of some people with learning disability. Consistent with CDS and ableism theory, in this context it should not be assumed that the origin of the problem lies outside the method with the participant with disability.

Yet suggestibility, whether real or perceived, remains challenging. In this context, there are practical solutions to support inclusive approaches to narrative research. Whyte (2006) suggests the avoidance of repeating questions pertaining to the same event. The proposition is that repetition may communicate to the child that they have given the wrong answer; therefore, the child might change their response. Researcher training, reliability checks, supplementing interviews with biographical fact-checking and desk research and making explicit the potential for acquiescence bias in research write-ups are other examples of practical solutions and safeguards (Stalker 1998; Wengraf 2001; Whyte 2006). Notwithstanding this, it is also of interest to question what, if any, insight can be brought to bear from the challenge of suggestibility on current narrative debates. To inform this, some related considerations are the notions of coherence and order. Narrators create plots from disordered experience; they make sense of experience by casting it in narrative form (Reissman 1993: 4). Narrative is recognised to be so, in part based on its coherence and order (Reissman 2008). Freeman (2015: 32) challenges the issue of coherence: ‘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, theory surrounding CDS would require a critical approach to the value placed on coherence and whether, in fact, this value is sustained by ableist ideals that are exclusionary (Campbell 2008; Goodley 2013).

Intellectual disability through cognitive and other linguistic difficulties may also convey incoherence in narrative (Angus & Bowen-Obsorne 2014; Nind 2008). Incoherence may be equated to incompleteness, deficit or suggestibility, as it may be perceived to indicate cognitive limitations (Angus & Bowen-Obsorne 2014). For this reason, narratives that appear incoherent or non-sensical may be omitted from data presentation or the researcher may deviate from the method to prompt the participant to clarify or indeed scope for misinterpretation may be widened (Angus & Bowen-Osborne 2014). There are, notwithstanding this, practical remedies available pertaining to the question of how a researcher may analyse an incoherent narrative. Booth (1996) clarifies that where a narrative response is brief and reactionary to individual prompts, then it is legitimate practice to combine or run together responses to a number of questions to create and present it as one piece of text to improve coherence. A second questionable practice is for the researcher to insert words that were not spoken by the participant but that legitimately appear to reflect the affective quality of the speech or non-verbal communication of the participant (Booth 1996; Stalker 1998). Incoherent narrative might also be presented in its raw, unanalysed form, potentially supplemented by a researcher description of context, behaviour and impressions (Stalker 1998; Terkel 2013). Overall, whilst these solutions are helpful, from a CDS perspective it is necessary to be critical about their effects (Goodley 2013). For example, inserting words not spoken by the child risks misrepresenting their views or, additionally, may impose able-bodied ideals that are harmful (Campbell 2009).

Finally, CDS recognises the productive capacity of disability to teach about the wider nature of able-bodiedness; therefore, it is necessary not to dwell upon disability alone. Orientating, consequently, towards wider narrative debates, it would seem that disability can provoke reflection on the notion of coherence in narrative and the influence of the researcher. When a verbatim excerpt is extracted for the presentation of findings by the researcher, for instance, it is deemed to begin and end at certain points, to be ‘complete’ within these boundaries. When a new question is posed, the answer to the prior one is implicitly deemed complete (Wengraf 2001). The case of narrative research with intellectually disabled children perhaps brings the notion of completeness into the ‘colonisation of coherence’ that Freeman (2015) earlier asks narrative researchers to pay heed to. In this way, narrative researchers must reflect on their fundamental role in the narrative produced and presented given, overall, narrative inquiry suggests that meaning is fundamental to being human because being human involves actively construing meaning (Smith & Sparkes 2008). What the theoretical vantage point of this paper adds is the importance of remaining cautious of the influence of ableism and able-bodied ideals in construing such meaning (Campbell 2009).

Narrative inquiry: Progress and further potential

Substantial progress has been made towards incorporating inarticulate participants in qualitative research (Alderson & Goodley 1996; Browne & Millar 2013; Davis et al. 2000; Kelly 2005, 2007; Lewis 2002, 2004; Lewis and Porter 2004; Morris 2003). Notwithstanding this, one must be realistic about the present nature and form of narrative methods that are, for the most part, engineered for, and by, articulate participants. This links strongly to the concept of ableism, as ultimately, ableism is about discriminatory favouritism of able-bodiedness (Campbell 2009). Smith and Sparkes (2008) outline foundational assumptions of narrative inquiry. Within this, Richardson (2000) establishes that, epistemologically, narratives are both a way of telling about our lives, and a way of knowing (Richardson 2000). Taking this as our starting point, it is perhaps evident narrative allows us to construct a picture of who we are, an identity we can convey to ourselves and others through story (Bamberg 2011). Others may in turn try to impose their version of who we are upon us through their own storied accounts. Narrative and identity in this way come to be about power and knowledge claims. What may be added from an ableism perspective is that such processes can also disadvantage and discriminate against those who have disability (Campbell 2009).

The struggle for recognition of identity, overall, has been critical for persons with disability, artists and activists. Shakespeare (2015) examines narrative and autobiographical narrative research with people with intellectual disability. He recounts one of the defining ambitions of the disability rights movement: for people with disability to establish and deliver their own stories (Oliver, Sapey & Thomas 2012; Shakespeare 2015). Yet, how these sentiments may be reconciled with notions of co-creation and social construction of narrative within the interview process is of interest to question. The latter notions are based on the assumption that the narrative one produces within the process of an interview is always, in some way, co-created between interviewer and interviewee (Caldwell 2014). It comes into being in the convergent space between interviewer and interviewee that is interactional. Hence one’s narrative is not their own, but rather it is, to an extent, socially constructed (NDA 2009).

Returning to challenges in intellectual disability research with children, one view is that inevitability of co-creation cannot suffice as reasonable grounds to dismiss efforts to minimise interviewer imposition. Practical challenges must be acknowledged in trying to ensure the narrative produced at the end of the narrative research process suitably reflects the child’s originally intended meaning, rather than, for instance, being a direct reflection of what the researcher had originally wanted to discover (Kelly 2007). Implicit in this, however, is a sense that children with intellectual disability are more naive, more malleable in their narratives, and therefore require extra protection. The gratification of seemingly more stringent ethics committee criteria for research with children with intellectual disability would appear confirmatory. It would seem, rightly or wrongly, that the projection of a characteristic of vulnerability onto their identity is marked. CDS identifies the importance of critically considering such assumptions. More specifically, this is because, according to CDS, disablement is not just about the physical body or lack of material resources, it is also psychological, cultural and social in nature and, therefore, related to language and identity (Goodley 2013).

As established, identity is also central to narrative debates. Bamberg (2011) separates self (and sense of self) and identity in the context of narrative. Identity as communicated by one to another in an interview is as much about what one says, as what one chooses to leave out (Wengraf 2001). This echoes Paul Ricoeur’s (2012) work. Here, narrative and time (past, present, future) cannot be divorced. ‘Emplotment’ knits a story from the threads of an otherwise plurality of disparate past events through a practice that is retrospective. The present time is also narrated, as is narrative used to craft a plot from a candidacy of future potentialities, the latter practice being prospective. Through this making of meaning, we construct a story of who we are (identity).

Yet it would appear that the very architecture of the interview process with children with intellectual disability (stringent ethical approval criteria, interview qualification, third party present for child protection purposes) (Kelly 2007) are already heavily grounded in the identity of vulnerability inferred upon them. This identity is assigned prior to that which is allowed to organically assign itself in the interactive, interpretative and preformative practice of the interview (Caldwell 2014; NDA 2009) through what they choose to say and choose not to say (Bamberg 2011). Perhaps this is allied to the notion of power and being powerful, where children with intellectual disability, rightly or wrongly, are assumed to be less so. Through CDS theory, such possibilities are important to consider, as disabled children and adults are often compared, and undervalued, in relation to able-bodied others (Goodley 2013).

Owens (2007) discusses Kvale’s (1996) work on the imbalance of power between interviewer and interviewee with intellectual disability where the interviewer is privileged through an expert position. The interviewer benefits from being able to set the agenda of the interview and to manipulate its course through questioning. Nonetheless, Czarniawska (2004), according to Owens (2007), presents an opposing argument in contending that the interviewee retains power as the owner of the life story being sought out. Further considerations arise when considering power in relation to a research participant that is a child. Expanding upon Owens discussion, Davis et al. (2000) and Kelly’s (2007) work can offer some suggestion as to how researchers may address power issues specifically with children with intellectual disability. Primarily, they suggest adopting a more reflexive approach. This requires the researcher to be open to learning from the child and questioning assumptions about childhood and its cultural context. Within this, Kelly (2007) further promotes the need to take time to develop communication and rapport with each individual child.

Such suggestions around the notion of power have implications for the wider narrative approach. Reissman (1993) establishes master narratives of social institution (childhood in this case) are inevitably woven into personal stories of lived experience with that institution. Here it is of interest to question what happens when children with intellectual disability, by way either of their tender age or intellectual disability, perverse the normative master narrative to which society is accustomed. In this instance, their stories may not be chronological nor choate, and further, they may challenge traditional and modernist familiarity and produce stories that are non-conformities and counter-cultural. In this instance, albeit understandably, these children in failing to ‘make sense’ might be omitted from the narrative study at hand due to their perceived insufficiency of compos mentis. In this instance, some suspicion is warranted. As Freeman (2010: 167) remarks, ‘remaining hermeneutically suspicious about those teleological tales that flatten difference and heterogeneity, whether wittingly or unwittingly, in the name of normalisation’. Such normalisation, through an ableism lens, may derive from a normative standard grounded in able-bodied ideals.

Children with intellectual disability who cannot adhere to social maxims of cooperation and accountability in the interview process (Bamberg 2011) may be omitted from research for not abiding by social norms governing conversation. This, in turn, can generate insight into the nature of wider narrative inquiry. Such omission on an aggregated scale reflects the ‘normalisation’ of overall narrative inquiry as a practice that is not, in fact, something that reflects the way in which humans story the world around them, but the way that some humans story the world. It is this point that perhaps best encapsulates the sustaining theoretical insight of this paper: narrative orthodoxy and the conventions of the wider narrative approach are inevitably flawed where children with intellectual disability must be omitted and excluded (Campbell 2009; Goodley 2013).

In drawing to a close, Clandinin (2016) states narrative inquiry is a ‘ubiquitous’ practice as ‘human beings have lived out and told stories about that living for as long as we can talk’ (Clandinin & Rosiek 2007: 35). Yet this ubiquity must be questioned in terms of processes of ‘normalising’ narrative inquiry that includes voices with the widest currency and generally omits the stories of those who are not verbally articulate. Therefore, notwithstanding the vast proliferation of narrative methods in disability research, it remains the case that the nature of modern narrative inquiry must be recognised to be, for the most part, engineered by and for articulate participants. This final insight, generalised from the case of challenges within research with children with intellectual disability to wider narrative debates, perhaps best reflects the need for change. That is change based not just upon adaptations to accommodate disability into existing methods, but also through developing inclusive approaches to narrative inquiry that are of universal design.

Conclusion

This article focused on narrative debates and narrative orthodoxy using the case of challenges in narrative research with children with intellectual disability as a litmus test for take-for-granted aspects of narrative inquiry. In doing so, the theoretical approach taken drew from Fiona Kumari Campbell’s (2009) work on ableism. This was overarched by a CDS perspective (Goodley 2013). Overall, this theoretical perspective had specific implications for the paper. The analysis only sought to begin with disability and then purposefully shift and retain focus upon narrative inquiry as the identified locus of remedial action. Impairment (intellectual disability) is therefore viewed only as a signifier of fault that lies outside that impairment within presenting challenges in narrative intellectual disability research. In doing so, the productive and didactic nature of disability is embraced, as a starting point, from which to speculate about the broader human condition, including features of ableism and the reproduction of able-bodied ideals (Goodley 2013).

As it stands, conducting narrative research with children with intellectual disability, including children that lack verbal articulacy, remains a practical, ethical and creative challenge that faces narrative researchers (Atkinson 2004; Booth & Booth 1996; Browne 2013; Goldsmith & Skirkon 2015; Goodley 1996; Nind 2008). In concluding, some reflection upon overarching solutions to such impasses is helpful. Firstly, particularly espoused by this paper, has been the remedy of beginning with a more inclusive definition of narrative, doing so through deviating from the rigid conceptualisation of a ‘verbal technique for recapitulating experience’ (Labov & Waletzsky 1967: 16). Secondly, as a universal rule from the CDS theoretical perspective, it is recognised that children with intellectual disability are often compared to non-disabled peers as though the identity positon binary between those who have disability, and those who do not is most crucial for them (Goodley 2013). Drawing upon the CDS notion of intersectionality, other factors may be much more pertinent, such as the child’s individual disposition, their gender or their cultural orientation. Therefore, a bespoke methodological experience to account not only for the child’s disability, but also for their holistic individuality is advisable. Thirdly, a strong awareness of the individual needs and disposition of the child participant is beneficial, pertaining to, but not exclusively concerned with, disability (Kelly 2007).

To conclude, as an expression of a dominant positivist paradigm, historically the voices of children and adults with intellectual disability have been often excluded within research, although this circumstance has now changed with numerous studies completed through a multitude of methods (Alderson & Goodley 1996; Browne & Millar 2013; Davis et al. 2000; Kelly 2005, 2007; Lewis 2002, 2004; Lewis and Porter 2004; Morris 2003). This advancement should necessarily inform wider narrative inquiry rather than retaining its insights in the sequestered arena of intellectual disability research. This paper offered a focused commentary on the literature, drawing out three broad themes. First, the relationship between power, protection and disability was explored in terms of insights generalisable to broader narrative research orthodoxy. Second, the challenge of incoherence in narrative, presented by cognitive or linguistic impairment, was critically considered. Third, notwithstanding immense progress, a challenge remains within the present nature of narrative inquiry as a broad field of practice due to a nature that remains very much engineered for, and by, articulate participants.

Competing Interests

The author has no competing interests to declare.

References

  1. Alderson, Priscilla, and Christopher Goodley. 1996. “Ethics of Research with Disabled Children.” Children & Society 10(2): 106–115. DOI: https://doi.org/10.1002/(SICI)1099-0860(199606)10:2<106::AID-CHI18>3.0.CO;2-V 

  2. Angus, Jocylen, and Sally Bowen-Obsorne. 2014. “A Self-Narrative of Life-Long Disability: A Reflection on Resilience and Living with Dementia.” Dementia 13(2): 147–159. DOI: https://doi.org/10.1177/1471301212455121 

  3. Atkinson, Dorothy. 1993. “Life History Work with a Group of People with Learning Disabilities.” Groupwork 6(3): 199–210. 

  4. Atkinson, Dorothy. 2000. Good Times, Bad Times: Women with Learning Difficulties Telling Their Stories. Kidderminster: BILD Publications. 

  5. Atkinson, Dorothy. 2004. “Research and Empowerment: Involving People with Learning Difficulties in Oral and Life History Research.” Disability & Society 19(7): 961–702. DOI: https://doi.org/10.1080/0968759042000284187 

  6. Atkinson, Dorothy. 2005. “Narratives and People with Learning Difficulties.” In Learning Disability: A Life Cycle Approach to Valuing People, edited by Grant Gordon, Peter Goward, Malcolm Richardson, and Paul Ramcharan, 7–28. Buckingham: Open University Press. 

  7. Atkinson, Dorothy, and Jan Walmsley. 1999. “Using Autobiographical Approaches with People with Learning Difficulties.” Disability & Society 14(2): 203–216. DOI: https://doi.org/10.1080/09687599926271 

  8. Bamberg, Michael. 2011. “Who am I? Narration and Its Contribution to Self and Identity.” Theory and Psychology 21(1): 3–24. DOI: https://doi.org/10.1177/0959354309355852 

  9. Barthes, Roland. 1975. “Introduction to the Structural Analysis of Narratives.” New Literary History 6(2): 237–272. DOI: https://doi.org/10.2307/468419 

  10. Bogdan, Roland, and Steven Taylor. 1976. “The Judged, not the Judges: An Insider’s View of Mental Retardation.” American Psychologist 31(1): 47–52. DOI: https://doi.org/10.1037//0003-066X.31.1.47 

  11. Booth, Tim. 1996. “Sounds of Still Voices: Issues in the Use of Narrative Methods with People Who Have Learning Difficulties.” In Disability and Society: Emerging Issues and Insights, edited by Len Barton, 237–255. London: Longman. 

  12. Booth, Tim, and Wendy Booth. 1994. Parenting Under Pressure: Mothers and Fathers with Learning Difficulties. Buckingham: Open University Press. 

  13. Booth, Tim, and Wendy Booth. 1996. “Sounds of Silence: Narrative Research with Inarticulate Subjects.” Disability and Society 11(1): 55–69. DOI: https://doi.org/10.1080/09687599650023326 

  14. Booth, Tim, and Wendy Booth. 2003. “In the Frame: Photovoice and Mothers with Learning Difficulties.” Disability & Society 18(4): 443–442. DOI: https://doi.org/10.1080/0968759032000080986 

  15. Browne, Michael, and Michelle Miller. 2013. “Holding a Vision: An Investigation of a Rights-Based Social Supports Infrastructure for Children/Young People with an Intellectual Disability.” PhD diss, National University of Ireland. 

  16. Bruner, Ed W. 1990. “The Scientists vs. the Humanists.” Anthropology News 31: 28–28. DOI: https://doi.org/10.2307/355920 

  17. Caldwell, Kate. 2014. “Dyadic Interviewing: A Technique Valuing Interdependence in Interviews with Individuals with Intellectual Disabilities.” Qualitative Research 14(4): 488–507. DOI: https://doi.org/10.1177/1468794113490718 

  18. Campbell, Fiona K. 2009. Contours of Ableism: Territories, Objects, Disability and Desire. London: Palgrave Macmillan. 

  19. Clandinin, Jean D. 2016. Engaging in Narrative Inquiry. Oxon: Routledge Taylor and Francis. DOI: https://doi.org/10.4324/9781315429618 

  20. Clandinin, Jean D., and Jerry Rosiek. 2007. “Mapping a Landscape of Narrative Inquiry: Borderland Spaces and Tensions.” In Handbook of Narrative Inquiry: Mapping a Methodology, edited by Jean D. Clandinin, 35–76. Thousand Oaks, CA: Sage Publications. DOI: https://doi.org/10.4135/9781452226552.n2 

  21. Clandinin, Jean D., and Michael F. Connelly. 1994. Personal Experience Methods. In Handbook of Qualitative Research, edited by Norman K. Denzin and Yvonna S. Lincoln, 413–427. London: Sage. 

  22. Connelly, Michael F., and Jean D. Clandinin. 1990. “Stories of Experience and Narrative Inquiry.” Educational Researcher 19(5): 2–14. DOI: https://doi.org/10.2307/1176100 

  23. Czarniawska, Barbara. 2004. Narratives in Social Science Research. London: Sage. DOI: https://doi.org/10.4135/9781849209502 

  24. Davis, John M., Nick Watson, and Sarah Cunningham-Burley. 2000. “Learning the Lives of Disabled Children: Developing a Reflexive Approach.” In Research with Children: Perspectives and Practices, edited by Pia Christensen and Allison James, 201–224. London: Falmer Press. 

  25. Derrida, Jacques. 1977. Limited Inc. Illinois: Northwestern University Press. 

  26. DeVault, Marjorie L. 1999. Liberating Method: Feminism and Social Research. Philadelphia: Temple University Press. 

  27. Edgerton, Robert B., and Sylvia M. Bercovici. 1976. “The Cloak of Competence: Years later.” American Journal of Mental Deficiency 80(5): 485–97. 

  28. Emerson, Eric, Chris Hatton, Travis Thompson, and Trevor Parmenter. 2004. International Handbook of Applied Research in Intellectual Disabilities. West Sussex: John Wiley & Sons. DOI: https://doi.org/10.1002/9780470713198 

  29. Feely, Michael. 2016. “Disability Studies After the Ontological Turn: A Return to the Material World and Material Bodies without a Return to Essentialism.” Disability & Society 31(7): 863–883. DOI: https://doi.org/10.1080/09687599.2016.1208603 

  30. Flynn, Eilionoir. 2011. From Rhetoric to Action: Implementing the UN Convention on the Rights of Persons with Disabilities. Cambridge: Cambridge University Press. DOI: https://doi.org/10.1017/CBO9780511996405 

  31. Flynn, Susan. 2017. “Engaging with Materialism and Material Reality: Critical Disability Studies on Economic Recession.” Disability & Society 32(2): 143–159. DOI: https://doi.org/10.1080/09687599.2017.1284650 

  32. Foucault, Michel. 1972. The Archaeology of Knowledge. France: Travistock Publications. 

  33. Freeman, Mark. 2006. “Life ‘on Holiday?’ In Defense of Big Stories.” Narrative Inquiry 16(1): 131–138. DOI: https://doi.org/10.1075/ni.16.1.17fre 

  34. Freeman, Mark. 2010. “‘Even Amidst’: Rethinking Narrative Coherence.” In Beyond Narrative Coherence, edited by Matti Hyvannen, Lars-Christer Hyden, Marja Saarenheimo, and Maria Tamboukou, 167–187. Amsterdam: John Benjamins Publishing. DOI: https://doi.org/10.1075/sin.11.c10 

  35. Freeman, Mark. 2011. “Stories, Big and Small: Toward a Synthesis.” Theory and Psychology 21(1): 114–121. DOI: https://doi.org/10.1177/0959354309354394 

  36. Freeman, Mark. 2015. “Narrative as a Mode of Understanding: Method, Theory, Praxis.” In The Handbook of Narrative Analysis, edited by Anna De Fina and Alexandra Georgakopoulou, 21–38. West Sussex: John Wiley Sons. DOI: https://doi.org/10.1002/9781118458204.ch1 

  37. Goldsmith, Lesley, and Heather Skirton. 2015. “Research Involving People with a Learning Disability: Methodological Challenges and Ethical Considerations.” Journal of Research in Nursing 20(6): 435–446. DOI: https://doi.org/10.1177/1744987115591867 

  38. Goodley, Dan. 1996. “Tales of Hidden Lives: A Critical Examination of Life History Research with People Who Have Learning Difficulties.” Disability & Society 11(3): 333–348. DOI: https://doi.org/10.1080/09687599627642 

  39. Goodley, Dan. 2013. “Dis/entangling Critical Disability Studies.” Disability & Society 28(5): 631–644. DOI: https://doi.org/10.1080/09687599.2012.717884 

  40. Kelly, Berni. 2005. “‘Chocolate … Makes You Autism’:Impairment, Disability and Childhood Identities.” Disability and Society 20(3): 261–275. DOI: https://doi.org/10.1080/09687590500060687 

  41. Kelly, Berni. 2007. “Methodological Issues for Learning Disabled Children.” International Journal of Social Research Methodology 10(1): 21–35. DOI: https://doi.org/10.1080/13645570600655159 

  42. Kvale, Steiner. 1996. Interviews: An Introduction to Qualitative Research Interviewing. London: Sage. 

  43. Labov, William, and Joshua Waletzsky. 1967. “Narrative Analysis and Oral Versions of Personal Histories.” In Essays on the Verbal and Visual Arts: Proceedings of the 1966 Annual Spring Meeting of the American Ethnological Society, edited by June Helm, 12–45. Seattle: University of Washington Press. 

  44. Lewis, Ann. 2002. “Accessing, Through Research Interviews, The Views of Children with Difficulties in Learning.” Support for Learning 17(3): 111–116. DOI: https://doi.org/10.1111/1467-9604.00248 

  45. Lewis, Ann. 2004. “‘And When Did You Last See Your Father?’ Exploring the Views of Children with Learning Difficulties/Disabilities.” British Journal of Special Education 31(3): 3–9. DOI: https://doi.org/10.1111/j.0952-3383.2004.00319.x 

  46. Lewis, Ann, and Jill Porter. 2004. “Interviewing Children and Young People with Learning Disabilities: Guidelines for Researchers and Multi-professional Practice.” British Journal of Learning Disabilities 32(4): 191–197. DOI: https://doi.org/10.1111/j.1468-3156.2004.00313.x 

  47. Morris, Jenny. 2003. “Including all Children: Finding Out About the Experiences of Children with Communication and/or Cognitive Impairments.” Children and Society 17(5): 337–348. DOI: https://doi.org/10.1002/chi.754 

  48. National Disability Authority. 2009. Ethical Guidance for Research with People with Disabilities. Dublin: NDA. 

  49. Nind, Melanie. 2008. “Conducting Qualitative Research with People with Learning, Communication and Other Disabilities: Methodological Challenges.” Accessed [Month Day]. http://eprints.ncrm.ac.uk/491/1/MethodsReviewPaperNCRM-012.pdf. 

  50. Oliver, Mike, Bob Sapey, and Pamela Thomas. 2012. Social Work with Disabled People. 4th ed. Basingstoke: Palgrave. DOI: https://doi.org/10.1007/978-1-137-02427-5 

  51. Owens, Janine. 2007. “Liberating Voices Through Narrative Methods: The Case for an Interpretative Research Approach.” Disability and Society 22(3): 299–313. DOI: https://doi.org/10.1080/09687590701259617 

  52. Polkinghorne, Donald. 1995. “Narrative Configuration in Qualitative Analysis.” Qualitative Studies in Education 8(1): 5–23. DOI: https://doi.org/10.1080/0951839950080103 

  53. Rabiee, Parvaneh, Patricia Sloper, and Bryony Beresford. 2005. “Doing Research with Children and Young People Who Do Not Use Speech for Communication.” Children & Society 19(5): 385–396. DOI: https://doi.org/10.1002/chi.841 

  54. Rapley, Mark, and Charles Antaki. 1998. “A Conversation Analysis of the ‘Acquiescence’ of People with Learning Difficulties.” Applied Social Psychology 6(3): 207–227. DOI: https://doi.org/10.1002/(SICI)1099-1298(199608)6:3<207::AID-CASP370>3.0.CO;2-T 

  55. Reissman, Catherine K. 1993. Narrative Analysis. Newbury Park: Sage Publications. 

  56. Reissman, Catherine K. 2008. Narrative Methods for the Human Sciences. USA: Sage Publications. 

  57. Richardson, Laurel. 2000. “Writing: A Method of Inquiry.” In Handbook of Qualitative Research, edited by Norman K. Denzin and Yvonna S. Lincoln, 959–978. London: Sage. 

  58. Ricoeur, Paul. 2012. Time and Narrative. Translated by K. McLaughlin and D. Pellauer. Chicago: University of Chicago Press. 

  59. Rolph, Sheena. 1999. “The History of Community Care for People with Learning Difficulties in Norfolk, 1930–1980: The Role of Two Hostels.” Unpublished PhD thesis, Open University. 

  60. Shakespeare, Tom. 2015. Disability Research Today: International Perspectives. Oxen: Routledge. 

  61. Simons, Ken, Tim Booth, and Wendy Booth. 1989. “Speaking Out: User Studies and People with Learning Difficulties.” Research, Policy and Planning 7(1): 9–17. 

  62. Smith, Brett, and Andrew C. Sparkes. 2008. “Narrative and Its Potential Contribution to Disability Studies.” Disability & Society 23(1): 17–28. DOI: https://doi.org/10.1080/09687590701725542 

  63. Smith-Chandler, Natalie, and Estelle Swart. 2014. “In Their Own Voices: Methodological Considerations in Narrative Disability Research.” Qualitative Health Research 24(3): 420–430. DOI: https://doi.org/10.1177/1049732314523841 

  64. Squire, Corinne, Molly Andrews, and Maria Tamboukou. 2013. Doing Narrative Research. 2nd ed. England: Sage Publications. 

  65. Stalker, Kirsten. 2010. “Some Ethical and Methodological Issues in Research with People with Learning Difficulties.” Disability and Society 13(1): 5–19. DOI: https://doi.org/10.1080/09687599826885 

  66. Stuart, Mary. 2002. Not Quite Sisters: Women with Learning Difficulties Living in Convent Homes. Kidderminster: BILD Publications. 

  67. Swain, John, and Sally French. 2000. “Towards an Affirmation Model of Disability.” Disability and Society 15(4): 569–582. DOI: https://doi.org/10.1080/09687590050058189 

  68. Terkel, Studs. 2013. Hard Times an Oral History of the Great Depression. New York: The New Press. 

  69. Tuffrey-Wijne, Irene, Jane Bernal, and Sheila Hollins. 2008. “Doing Research on People with Learning Difficulties, Cancer and Dying: Ethics, Possibilities and Pitfalls.” British Journal of Learning Disabilities 36(3): 185–190. DOI: https://doi.org/10.1111/j.1468-3156.2008.00519.x 

  70. Wengraf, Tom. 2001. Qualitative Research Interviewing: Biographical Narrative and Semi-Structured Methods. London: Sage Publications. 

  71. Whyte, Jean. 2006. Consulting with Children with Disabilities as Service Users: Practical and Methodological Considerations. Dublin: The Stationary Office. 

comments powered by Disqus