Siblings’ relational experiences of disability during young adulthood

Abstract

Sibling relationships are formative influences in many people’s everyday lives. Yet where one sibling has a disability, studies have typically focused on the psycho-emotional outcomes of and caregiving done by siblings of people with disabilities, rather than looking at how disability figures in the everyday relations that siblings both with and without disabilities share. Thus, even though it may be influential, little is known about siblings’ everyday relational experience of disability. This is especially the case during young adulthood, a time when siblings may undergo significant changes and transitions.

Using a sociological, relational and phenomenological approach, this qualitative study begins to address this research gap. The study draws on the accounts of 25 young adult siblings with disabilities and 21 without disabilities (aged 15-29), using accessible and relationally informed methods. Siblings took part by interview or documented contribution, either jointly, separately or alone.

Two streams of findings highlight siblings’ everyday relational experience of disability. Firstly, the study found that disability is formative within siblings’ everyday relations; for example, how they talk or act together. However, disability is nevertheless enacted within a scope of relations that are normative to siblings irrespective of disability. Disability’s formative influence is also subject to siblings’ life-stage in young adulthood, to the contemporary conditions of society and to each sibling’s position and perception as either a sibling with or without a disability. Thus, disability is relationally influenced even as it influences sibling relationships.

Secondly, the findings explore some overall felt experiences that arise from disability’s presence in the sibling relationship. Using the concept of ‘relationality’ to conceptualise these experiences, the findings articulate how disability may – under different conditions – feel like an unremarkable or intense experience; like an aspect that is hard to see, understand or place within the relationship; like a challenge to siblings’ normative horizontal power relations; or like it has more or less of an inherent connection to the sibling relationship.

The thesis finishes by detailing the implications of the findings for further developing evidence, policy and practice in ways that foreground the experience of the sibling relationship.