Howard Sklar, PhD
Department of Modern Languages (English Philology)
University of Helsinki
Docent in Literary Studies, with a Special Emphasis in Narrative Theory (University of Tampere)
Howard Sklar, PhD
Stories of the “Intellectually Disabled”:
An Investigation of Narratives Representing People with Intellectual Disabilities and Their Effects on Non-Disabled Adolescent Readers
(Earlier funded by the Academy of Finland and the University of Helsinki/Department of Modern Languages)
Within the humanities, considerable scholarly attention has been given in recent years to the content of, motives behind, and social effects of the ways in which disabled individuals are represented in literature, film, visual arts and other artistic forms. The groundbreaking work by Mitchell and Snyder (2000: 49) demonstrated “that disability has been used throughout history as a crutch upon which literary narratives lean for their representational power, disruptive potential, and analytical insight.” This often has resulted in narratives that can have the effect of “sedimenting stigmatizing beliefs about people with disabilities” (24). At the same time, others (Shapiro 1993, L. Davis 2006) have argued that expressions of pity or sympathy for the disabled, including those represented in fiction, can reinforce, as Shapiro (1993: 24) puts it, the “tend[ency] to divide the world between the lucky and unlucky, between us and them.” Related to these concerns, autobiographical accounts of the disabled have been criticized, according to Couser (2002: 110-11), for “sentimentalizing” the plight of the disabled and for reinforcing the perceived undesirability of their condition.
Given these three concerns—the hypothetical misrepresentation of disabled characters in fiction, the allegedly debilitating effects of pity or sympathy for the disabled, and the purported sentimentalization of the disabled through both fictional and autobiographical narratives—this research project aims to examine three pressing, indeed fundamental, issues: the ways that fictional and autobiographical narratives represent individuals who are intellectually disabled (or “mentally retarded”), how those narratives contribute to the impressions and feelings of the non-disabled towards this disabled population, and how the intellectually disabled can be empowered to represent their own lives in ways that do not sentimentalize or trivialize them.
The decision to emphasize intellectual disability is based, first, on the fact that the investigation of the narrative representation of intellectual disability from the perspective of disability studies remains very limited, despite some exceptions (for example, M. Halliwell 2004; Marchbanks 2006; Sklar 2011). Similarly, cross-studies comparing representations of the intellectually disabled in works of fiction with autobiographical narratives produced by intellectually disabled individuals themselves have been relatively rare. I believe that the examination of autobiographies by the intellectually disabled would serve a vital purpose, in that they provide “an insider’s perspective on living the life of a mentally retarded person” (Whittemore et al 1986: 6) – or, as one intellectually disabled man, “Ed Murphy,” says in describing his own life: “I’m talking like an expert. I had to live it…. Experts are people who have lived it” (Bogdan and Taylor 1994: 30). Finally, very little work appears to have been conducted to determine the effects of such representations, whether fictional or non-fictional, on readers.
2. Objectives, Hypotheses and Methods
Phase 1: Narrative Theoretical Approaches to the Representation of Intellectual Disability in Fictional and Autobiographical Narratives
Objectives. In this phase, I will examine a variety of fictional and non-fictional narratives that attempt to represent the consciousness and experiences of intellectually disabled characters. In fictional works, I will isolate the narratological factors that convey the consciousness of these characters and communicate particular impressions to readers. I will also look closely at the factors that evoke sympathy in readers for the identified characters, as well as consider the extent to which sympathetic response is tied to the stereotypical or relatively realistic representations that I have identified. Similarly, I will examine representational content in autobiographies/life histories produced by intellectually disabled individuals (Langness and Levine 1986, Edgerton 1993, Bogdan and Taylor 1994, Goodley et al. 2004). This phase will be conducted throughout the project, with particular concentration during the first two years.
Hypotheses (Phase 1)
1. Literary authors often rely on (a) specific, often stereotypical tropes, (b) aesthetic/poetic language, (c) “explicit/implicit ethical standards” (Phelan 2008: 10), and (d) narrative structuring/progression in representing intellectually disabled individuals.
2. These literary features frequently are incompatible with the experiences of actual intellectually disabled individuals, as represented in autobiographies/“life histories.”
Methods. Theoretical work in the representation of consciousness in fiction (Cohn 1978; Palmer 2004; Mikkonen 2008) and non-fiction (Mildorf 2008) provides effective means for examining the representation of the experiences of the intellectually disabled. These approaches will be combined with relevant criticism from within the field of disability studies (for example, Mitchell and Snyder 2000; M. Halliwell 2004; Marchbanks 2006) to produce a comprehensive framework with which to analyze the narratives.
In analyzing the autobiographical narratives, approaches from the social sciences (Bogdan and Taylor 1994; Goodley et al. 2004; Whittemore et al. 1986) attend especially well to the multi-vocal or “collaborative” nature of life histories (Whittemore et al.1986: 6; cf. Squire 2008: 42). Narrative theoretical approaches from both the social sciences and literary studies provide tools for isolating elements within narratives so that the nature and ethical implications (Couser 2001, 2002) of these collaborative constructions they can be viewed and understood more clearly.
Phase 2: Social Psychological Investigations
Objectives. This phase of my research is comprised of two components: interviews to elicit life histories from intellectually disabled adolescents, and reader response testing of the reactions of non-disabled readers to characters in fictional narratives and individuals in autobiographical narratives. For the interview component, student researchers in the field of social psychology will interview mildly intellectually disabled adolescents between the ages of 16 and 18, with the aim of having them “narrate” their life experiences (Langness and Levine 1986a; Bogdan and Taylor 1994; Andrews et al. 2008). The reader response testing component will involve testing the attitudes and emotions of approximately 200 Helsinki-area adolescents, ages 16-18, in response to both fictional and non-fictional narrative works that represent the intellectually disabled. This phase will be conducted according to the following schedule: selection and training of interviewers, autumn 2011–spring 2012; interviews, spring 2012–spring 2013; reader response testing, autumn 2012; analysis of data, spring 2013–autumn 2013.
Hypotheses (Phase 2)
3. In cases where readers do not possess real-world experience with the intellectually disabled, such fictional narratives often establish and/or reinforce particular stereotypes as representative features of this population.
4. Fictional representations and non-fictional self-representations will often generate different types of sympathy in readers, due to literary features noted above (Hypothesis 1), as well as the inherent differences between fictional and non-fictional modes of representation.
Methods. For the interview component of Phase 2, a variety of methods will be used, depending upon the nature and inclinations of the person to be interviewed: (1) self-written, in response to prompts; (2) co-written, with prompts and oral responses recorded by the interviewer; and (3) a “graphic narrative” approach, combining images (drawings or photos) with text (written by the interviewee, or dictated by him/her and recorded by the interviewer). For the reader response testing component, I will use the Interpersonal Reactivity Index (M. Davis 1983, 1996) for testing subject levels of empathy and sympathy, as well as a variation on the Reader Emotions Test, developed by me in consultation with Prof. Klaus Helkama for use in my doctoral research, to record readers’ thoughts and feelings regarding the characters/individuals in particular narratives.
partial list of References
Andrews, Molly, Corinne Squire and Maria Tamboukou (2008a) Doing Narrative Research. London: Sage.
Biasini, Fred J.; Lisa Grupe; Lisa Huffman; and Norman W. Bray (1999) ”Mental Retardation: A Symptom and a Syndrome.” In Sandra D. Netherton, Deborah Holmes, and C. Eugene Walker, eds. Child and Adolescent Psychological Disorders: A Comprehensive Textbook. Oxford: Oxford University Press. Accessed online (25.1.2009) at: http://www.uab.edu/cogdev/mentreta.htm.
Bogdan, Robert and Steven J. Taylor (1994) The Social Meaning of Mental Retardation: Two Life Stories. New York and London: Teachers College Press.
Booth, Wayne C. (1961/1983) The Rhetoric of Fiction. Chicago, IL: University of Chicago Press.
Burke, Lucy (2008) “Introduction: Thinking about Cognitive Impairment.” Journal of Literary Disability 2 (1), i-iv.
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_____. (2008b) “Sympathy as Self-Discovery: The Significance of Caring for Others in “Betrayals.” Paradoxa: World Literary Genres (special issue on Ursula K. Le Guin).
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_____. (2009) “Narrative Structuring of Sympathetic Response: Theoretical and Empirical Approaches to Toni Cade Bambara’s ‘The Hammer Man.’” Poetics Today 30.3: 561-607.
_____. (2011) “‘What the Hell Happened to Maggie?’: Stereotype, Sympathy and Disability in Toni Morrison’s ‘Recitatif’”. Journal of Literary and Cultural Disability Studies 5.2: 137-154. Special issue, “Representing Disability and Emotion.”
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