Challenging Standard Concepts of ‘Humane’ Care through Relational Auto-Ethnography

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.

Keywords

• auto-ethnography
• care ethics
• disability
• chronic illness
• humane care