The role of exercise in negotiating an identity as disabled: A qualitative exploration of the experiences of individuals with multiple sclerosis

BACKGROUND: Multiple sclerosis (MS) is a chronic condition resulting in a wide range of physical, cognitive and affective impairments that can either fluctuate, or remain and worsen depending upon the disease course. The episodic nature of symptoms in relapsing-remitting MS (RRMS) results in an in-between or liminal embodiment; situated in-between sick and well states, ‘able-bodied’ and disabled. Because of this, MS has a tenuous relationship to the field of Disability Studies and mainstream disability activism. Furthermore, the recent surge in research on the impact of exercise/physical activity (PA) participation on symptoms and quality of life among those with MS has shifted exercise and PA promotion to individuals with MS in ways that reinforce ableist ideas about the human body (e.g. for managing or minimizing impairment/disability). This increasingly medicalized version of exercise promotion can cause increased guilt over inactivity, and result in constrained views of PA that may be compounded by the uncertain nature of having MS and negotiating a disabled identity. Thus, it is important to further explore the relationship between MS, exercise and Disability Studies. PURPOSE: This dissertation explores the myriad and contradictory ways that individuals with MS perceive exercise and physical activity as part of their self-care, as well as the ways that exercise and physical activity are used to negotiate an identity as disabled. METHODS: The aims of the current analysis are to explore the roles of exercise and physical activity in their MS management and prevention of disability. I use Interpretive Phenomenological Analysis (IPA) to analyze interviews from two previously conducted qualitative research projects related to exercise and MS. The first (RELAPSE) is an exploration of the experiences and concerns related to physical activity of individuals with MS following a relapse. The second study (PEMS) is a photoelicitation project focusing on the people, places, and things that influence physical activity behavior among adults with MS. RESULTS: I identify eight themes relevant to my original research questions which are organized into three categories: Exercise, Identity, and Disability. The Exercise category describes orientations to exercise as a disciplinary activity, as promoting self-transformation and social engagement, and as medicine for managing MS and for self-care. The Identity category describes notions of fractured self-concept across a multitude of dualisms, as well as the ambiguity of embodied experiences relative to health and disability. The Disability category explores experiences with and perspectives of ableism, the use of assistive devices, and the development of a disability identity. Overall, participants describe many different roles that exercise occupies for them, as well as different orientations and motivations for engaging in exercise. This contributes to a fractured self-concept across a variety of continuums, including mind/body, old self/new self, MS self/true self, and healthy/unhealthy. The relationship between exercise and disability identity was also complex and contradictory, including using exercise to push away from or reject a disability identity and minimize visible impairment; or using exercise to recognize ableism, structural disablism, and develop a political disability identity; and using exercise to adapt to and prepare for situations inhospitable to disabled individuals. CONCLUSIONS: Contextualizing these results within the Social Relational Model of Disability, exercise is used by individuals with MS to manage impairment in positive ways but contributes to psychoemotional disablism by reinforcing compulsory ablebodiedness. Because of the uncertain and liminal characteristics of MS, exercise seems to occupy several contradictory roles that both challenge compulsory ablebodiedness and reify it. Therefore, this study supports the need for addressing problematic aspects of exercise promotion paradigms that contribute to compulsory ablebodiedness while preserving and building on positive benefits of exercise. I propose an alternative exercise promotion paradigm where emphasis shifts from exercise as discipline towards exercise as a resource. Some may wish to use exercise as a resource to navigate and alleviate aspects of their disability and impairment, while others who are working towards affirming their descriptive disability could participate in exercise for reasons other than to change their embodiment. This paradigm has implications for other chronic disease and disability populations