Abstract

What is deemed ‘good’ or ‘humane’ care often seems to be underpinned by a standard ideal of an able-bodied, autonomous human being, which not only underlies those ‘social and professional structures within which narratives and decisions regarding various impairments are held’ (Ho, 2008), but also co-shapes these structures. This paper aims to explore how a relational form of auto-ethnography can promote good care. Rather than being based on and focused toward this standard ideal, it challenges ‘humanity’ by showing how illness narratives, public discourse, and policy are framed by ethical questions. It illustrates how normative ideas dictate policy and public discourse. It critically questions this constitutive power by shifting attention to the lived experiences of people with chronic illness and disability. By highlighting and reflecting together on the first author’s life with a chronic illness and his son’s disability, and thereby framing the narrative, it will be argued that, in order to improve care practices, personal illness and disability narratives and the way they interlock with public narrative and auto-ethnographic methodologies should be investigated.

Highlights

  • This article illustrates and discusses how a relational form of auto-ethnography might promote good care by highlighting the everyday realities of living with a chronic illness or disability

  • As care ethicists with a strong affinity with Disability Studies, we are always interested in promoting good care and ask whether a relational auto-ethnography on living with illness and disability might contribute towards that aim

  • This emphasis on independence leads to a discourse in which ‘the language of rights eclipses other ethical language’, as care is primarily thought of in terms of problems which can be regulated and dealt with by establishing rights (Agich, 2003). It may create a backlash against dependence of any sort, with those in need of care susceptible to the pejorative meanings associated with illness, dependence or disability (Agich, 2003; Hertogh, 2010). This can occur despite the fact that there is a growing interest in patient experiences and patient stories, as the following fragment of a recorded conversation between the authors examines: Alistair: what I seem to miss in those patient stories, of those living with inflammatory bowel disease (IBD)—and there is plenty of material, patient blogs and vlogs, several books etc.—is that it often stops at the toilet door

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Summary

Introduction

This article illustrates and discusses how a relational form of auto-ethnography might promote good care by highlighting the everyday realities of living with a chronic illness or disability. By eliciting critical events of daily routines of people living with disease or disability and the everyday aspirations of caregivers, these studies can inform us about why and how what might be conceived of as ‘good’ emerges, and under what conditions (cf Klaver, van Elst, & Baart, 2014; Pols, 2013). This entails that the accounts and the representations of what currently might be depicted as ‘humane’ and ‘caring’ have to be seen against a background of sound (historical) anthropology describing everyday life. We will argue that the ‘classic humanist trope’ (Goodley & Runswick-Cole, 2016) of a lone, fully functioning able-bodied thinking subject no longer works as an image of what it means to be (a caring and cared for) human, and is in need of other, richer concepts in order to improve practices of care for people with chronic disease and disability

Contesting an Ableist Ideology
Accessing the Particular
Relational Auto-Ethnography
Conclusion

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