“This journey has definitely changed me”: An ethnographic narrative exploring disabled peoples’ lives through embodied experiences and identity negotiation

Abstract

Following calls from both disability studies and anthropology to provide ethnographic accounts of disability, this thesis presents the narratives of nine people living with disability, focusing on what disability means to them, how it is incorporated into their identities, and how it shapes their lived experiences. While accounts of disability from disability studies often focus on the social model of disability (Shakespeare 2006) and emphasise social stigma and oppression (Goffman 1967, Susman 1994), anthropological accounts often emphasise the suffering and search for cures (Rapp and Ginsburg 2012) that is assumed to accompany disability. Both approaches have their benefits, but neither pay particularly close attention to the personal experiences of individuals, on their own terms.

By taking elements from both disciplines, this thesis aims to present a balanced view that emphasises the lived experiences of individuals with disability, and uses these experiences as a starting point for wider social analysis. The primary focus of this thesis is understanding how disability shapes an individual’s identity: what physical, emotional, and social factors influence how these people are perceived – by themselves and others? Through my participants’ narratives I explore how understandings of normal bodies and normal lives influence their sense of personhood, and investigate the role of stigma in mediating social encounters and self-concepts. Furthermore, I undertake a novel study of the role of technology in the lives of people living with disability. My work explores how both assistive and non-assistive (‘general’) technologies are perceived and utilised by my participants in ways that effect not just the physical experience of disability, but also social perceptions and personal understandings of the body/self.

I argue that although the social model of disability is an excellent analytical tool, and one which has provided tangible benefits for disabled people, its political nature can sometimes lead to a homogenisation of disabled experiences; something which this thesis is intended to remedy by providing ethnographic narratives of disability, grounded in the embodied experiences of individuals.