Life Story Narratives of Adults with Intellectual Disability and Mental Health Problems: Personal Identity, Quality of Life and Future Orientation (original) (raw)
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This article describes an innovative intervention based on narrative and life review therapy that is tailored to people with intellectual disability (ID) and psychiatric problems. The current study provides a first evaluation of the intervention. A symptom checklist (SCL-90) was used in a pre-and post-follow-up design, and a qualitative evaluation of the intervention was carried out with 25 participants. Results showed large changes in psychiatric symptoms, in particular on depression, anxiety, obsessive-compulsive disorder, and interpersonal sensitivity. Participants were mainly positive in their general explicit evaluations of the therapy as well as on personal learning points, intervention-specific, group-related, and therapist-related aspects. It is concluded that the intervention is promising for the treatment of people with ID and psychiatric complaints.
Identities on paper Constructing lives for people with intellectual disabilities in life story books
This paper examines how life story books were used in two care settings in the UK for people with complex support needs. The context of the research was the transition of six people from a long stay hospital to a community home. Discourse analysis was used to analyse talk and texts in the care settings including staff interviews, meetings and the written text in the life story books themselves. Three uses of the books are highlighted in the analysis. They were used as a resource for: getting to know the person; defining the person; and displaying personality and uniqueness. Mutual identities of the various participants were constantly changing with reference to the life story books. It is suggested that the books encourage acceptance in the care relationships. The analysis demonstrated that despite the different uses of the life story books, highlighted by the care staff, there is an underlying assumption that what is written in the books is a direct representation of the person. It appears that once this type of information is committed to paper the identity of the person becomes reified.
Journal of Research in Personality, 2022
This study examines narrative identity among a large, diverse sample of people with disabilities (PWDs) in the United States during the “second wave” of the Covid-19 pandemic (October-December 2020). The study relied on abductive analyses, combining a purely inductive phase of inquiry followed by two rounds of investigation that filtered inductive insights through three theoretical lenses: social-ecological theory, the theory of narrative identity, and perspectives from the interdisciplinary field of disability studies. The central result was the identification of a particular configuration of self, one that was demonstrably interdependent with both immediate interpersonal contexts and with broader cultural contexts. This interdependent self was interpreted in both positive and negative ways by PWDs. These findings invite future inquiry into commonplace conceptualizations of an independent self at the center of personality research and suggest that dominant conceptualizations of “the good life” may overly emphasize independence.
2021
This study examines narrative identity among a large, diverse (American) sample of people with disabilities (PWDs) during the “second wave” of the COVID-19 pandemic (October-December, 2020). The study relied on abductive analyses, combining a purely inductive phase of inquiry followed by two rounds of investigation that filtered inductive insights through three theoretical lenses: social-ecological theory, the theory of narrative identity, and perspectives from the interdisciplinary field of disability studies. The central result was the identification of a particular configuration of self, one that was demonstrably interdependent with both immediate interpersonal contexts and with broader cultural contexts. This interdependent self was interpreted in both positive and negative ways by PWDs. These findings invite future inquiry into commonplace conceptualizations of an independent self at the center of personality research.
Telling Disability: Identity Construction in Personal and Vicarious Narratives
2014
Telling disability: Identity construction in personal and vicarious narratives Leslie E. Cochrane Abstract This dissertation examines the construction of disability identities in personal and vicarious narratives. Sociolinguistic research on narrative focuses largely on personal narrative (Schiffrin 1996); some studies claim that vicarious narratives lack coherence and evaluation (Labov and Waletzky 1967, Chafe 1994) and have no natural relation to the teller’s identity (Norrick 2013). Research on health communication contributes to linguistic understandings of disability (Hamilton 1994, Ramanathan 2009); however, few studies explore disability discourse as its own area (cf. Al Zidjaly 2005). Taking an approach to disability discourse that emphasizes disability as practice, I analyze identity construction in narratives told by people with and without disabilities. I argue that vicarious narratives -- which I define as narratives about someone else’s lived experience -- are productive sites for constructing personal identities. The analysis investigates narratives from a 16-hour corpus of video-recorded conversations among three participants with lifelong, mobility-related, physical disabilities; their able-bodied family, friends, and caregivers; and the able-bodied researcher. The analysis shows tellers displaying their individual disability identities through positions (Davies and Harré 1990, Bamberg 1997) taken up in response to able-bodied characters in storyworlds. I propose that telling vicarious narratives allows tellers to expand their repertoires of storyworlds beyond their own lived experiences. I demonstrate how one particular teller with a disability uses vicarious narratives about third-person characters to construct her personal disability identity. Following Goffman (1963), I adapt the term “the wise” to apply to people without disabilities who, through social network ties to a person with a disability, are “wise to” disability practices and have a measure of acceptance in the disability community. I argue that these close ties allow able-bodied people to display their wiseness through a transfer of epistemic rights with regard to disability discourse. I show that people with disabilities and the wise within their communities can co-construct shared disability identities. By defining certain able-bodied people as wise, this dissertation reconsiders the role of people without disabilities in the disability community. It suggests that wise identities and shared disability identities provide avenues for exploring how identity is created within close communities.
Contrary to popular belief, the overwhelming majority of disabilities are acquired during a person's lifetime rather than at birth. Research shows that people who acquire physical disability during adulthood are faced with the necessity to redefine their role and place in society and often develop an entirely new identitythe identity of a disabled person. The process of losing the old self, which must precede the development of a new identity, is often described by patients as extremely traumatic. At that moment, the individual is forced to change his or her social affiliation and irreversibly switch teams from "abled" to "dis-abled". In addition to adapting to physical changes, newly disabled people also face serious psychological challenges. Although some research shows that disabled people do not differ psychologically from the general population, having similar levels of self-esteem and well-being as nondisabled people, other research clearly proves that this is not applicable to newly disable people. It appears that adults with relatively stable identity and strong expectations related to the future, are the ones who suffer the most after acquiring a disability. This article investigates the major issues related with the development of a new identity presented in the autobiographical book of Simi Linton, who became a paraplegic at age 24.
This paper reflects upon the growing narrative research with people with intellectual disabilities. In this paper we consider some of the unexpected, hidden, elusive consequences of our quests for narratives with people with intellectual disabilities. In this paper we respond to Bourdieu’s invitation to reflexivity in an attempt to unpack some of the complexities and power relations of research. We reflect on some of our own narrative work with people with intellectual disabilities. Our attention is not solely drawn to issues of method, but also highlights the ways in which we understand the narratives we collect and the narrators we work with. We also explore how our narrative work has potentially contributed to the construction of the label of intellectual disability. Our conclusion is that reflexivity is fundamental to research collaboration with people with intellectual disabilities. And attention should be paid to the strategies that people with intellectual disabilities employ in their resistance to prejudice and lack of power they experience in their daily lives.
Disability identity: Exploring narrative accounts of disability
Rehabilitation Psychology, 2013
According to recent estimates from the Office of Disability Employment Policy (ODEP, 2015), the unemployment rate for persons with disability (PWDs) is more than double that of persons without disability (11.7% vs. 5.3%), even though two thirds of these PWDs indicate that they are willing and able to work (Canas & Sondack, 2011; Harris Interactive, 2000). The social/structural model used to explain this employment gap emphasizes the negative beliefs, prejudice, and misinformation that prevent PWDs full inclusion and participation in the workplace (Dunn & Burcaw, 2013). The model also identifies extensive structural barriers, examples of which range from missing curb cuts to inaccessible websites. The World Wide Web enables many people to communicate, participate in civic life, become more educated, and develop a far greater social network. In addition, Internet access and usage has become almost a necessity for job seekers today, as evidenced by the proliferation of websites such as simplyhired.com, indeed.com, monster.com and careerbuilder.com. An increasing number of organization websites permit jobseekers to search available openings and apply online. However, whether due to prejudice, ignorance, or inattention, organizations launch websites that are unwelcoming and technologically inaccessible to people with sensory, mobility, and cognitive impairments. PWDs should have equal ability to complete online job applications or, at the very least, websites should include a statement specifying how a PWD can obtain accommodations for the job application process, if needed. For many persons with disability such barriers can exacerbate existing employment disadvantages relative to other groups.
Any added value? Co-constructing life stories of and with people with intellectual disabilities
British Journal of Learning Disabilities, 2012
The Official Journal of the British Institute of Learning Disabilities qualitative data: life stories and narratives of people with intellectual disability. This paper seeks out to show the added value of this approach both methodologically and practically. Keywords Added value of shared analysis, constructivist grounded theory, inclusive research, involvement in data analysis, reference group, theoretical sensitivity A brief note on terminology As Williams (2011, 4) points out, there co-exist different labels of referring to people with intellectual disabilities around the globe. Up until now, the terminology mental retardation is predominantly used within German-speaking countries as the consequence of a categorically structured system of special education around different types of disability as well as a related university architecture and subsequent research. Disability research in German-speaking countries has been largely led by scholars from the field of Special Education (Buchner & Koenig 2008). While there has been a growing movement from parental and selfadvocacy organisations towards more sensible and less stigmatising labels, with the latter preferring the term 'people with learning difficulties', the German academia is still in the process of debating the 'right' label. The biggest parental network and service organisation in Austria the 'Lebenshilfe' has dropped the term mental retardation from its official title in 2008 and currently refers to people with intellectual disabilities. Starting from 2010, the academic journal of the German 'Lebenshilfe' was renamed from Mental Retardation ('Geistige Behinderung') to 'participation' ('Teilhabe'). Except for direct quotations, this paper will refer to the term intellectual disabilities as it is most widely used in international academic contexts.
Identity development in people with mild intellectual disability: A short-term longitudinal study
The objective of the study was to diagnose changes in the identity of individuals with mild intellectual disability (ID) in late adolescence and emerging adulthood, comparing them to their non-disabled peers. The dual-cycle model of identity formation of Luyckx et al. was employed (Developmental Psychology, 42, 366–380, 2006). The study included 127 participants living in Poland. Three waves were performed at half-year intervals. The Dimensions of Identity Development Scale in its modified version for people with ID was used (DIDS/PL-1; Rękosiewicz Studia Psychologiczne, 53, 19–31, 2015). People from the four study groups (A-late adolescents with ID, B-emerging adults with ID, C-late adolescents within the intellectual norm, D-emerging adults within the intellectual norm) in the main did not differ from one another in respect of the dimensions of identity formation. Over time, there was an increase in commitment making and identification with commitment, but only among adolescents with ID. None of the groups demonstrated significant changes in exploration in breadth, in depth, nor in ruminative exploration. It was successfully demonstrated that people with mild ID are not distinct on all dimensions of identity formation when compared to their peers within the intellectual norm. Minor changes in identity may indicate a longer period of identity formation, or dynamic changes coming earlier – during early adolescence or later – in early adulthood.