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Please use this identifier to cite or link to this item: http://hdl.handle.net/1807/32776

Title: Defying the Odds: Growing Up & Growing Older with a Lifelong Physical Impairment (Cerebral Palsy)
Authors: Moll, Laura Roberta
Advisor: Cott, Cheryl
Department: Rehabilitation Science
Keywords: aging
disability
rehabilitation
The Life Course
Issue Date: 30-Aug-2012
Abstract: Purpose: The purpose of this study was to explore the experience of individuals who are aging with a lifelong and/or early-onset physical impairment. Method: A qualitative methodology was utilized consisting of narrative inquiry informed by the Life Course Perspective. The life course perspective is a dynamic approach that encompasses multiple theories including sociology, human development, and aging, highlighting how social, historical, and cultural contexts shape people’s lives. Narratives are storied ways of knowing and communicating that people use to organize events in their lives and make sense out of their experiences. Nine community-dwelling individuals (3 men; 6 women), aged 26-70, with mild to severe Cerebral Palsy were recruited using a combination of purposive and snowball sampling. Multiple (3-4), in-depth interviews were completed with each participant in order to co-construct their life stories. The data analysis was iterative. NVIVO 8 was used to organize the data, supporting a systematic caparison of emerging themes and categories, as well as the central plot that weaves the participants’ experiences together. Findings: “Defying the Odds” emerged as the central narrative that weaved together their experience of growing up and growing older. Their narrative is depicted through the trajectory of the disordered body that manifests itself in peaks and valleys. Their narrative is also weaved together by three central threads: Achieving a Sense of Belonging, Overcoming being Seen but not Heard, and Striving for Self-Reliance. “Normalization” emerged as a key recurring theme in the participants’ life stories. The focus of rehabilitation on "normalizing" movement, particularly walking, during childhood can lead to social psychological challenges as well as problems later in the life course as people encounter increasing fatigue and decreasing functional abilities but no longer have access to rehabilitation services. Implications: Theoretically, the disordered body needs to be reconceptualized in ways that are more positive. Conceptualizing a theory on aging with disability needs to be pursued. Clinically, we need to work towards developing a continuum of care across the life course with a focus on long-term maintenance and prevention of secondary health problems.
URI: http://hdl.handle.net/1807/32776
Appears in Collections:Doctoral

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