Beyond the Door: Disability and the Sibling Experience

This thesis explores the experiences of adult siblings of individuals with impairments. It expands on the existing literature by exploring the complexity of the sibling experience of disability while moving beyond the concepts of burden and maladjustment that have characterized much of the previous literature. In addition, it expands upon and extends to the sibling experience an emerging view of disability by examining the ways in which themes identified in sibling narratives cross lines between the Medical and Social Models of Disability. Building on work by Mark Priestly and Tom Shakespeare, I call this emerging view the Interactional Model of Disability. Using in-depth interviews, four key themes have been identified: encountering bodily difference, the importance of social relationships, the mediating effects of resources, and complex emotions within the sibling experience. Findings indicate that variations within the sibling disability experience depend largely on whether impairment is appropriately acknowledged and accepted by the larger community, accessibility of resources, and the strength of social support. The use of informal caregiving was also an important factor in terms of the emotions experienced by siblings. Those participants whose families relied exclusively on informal caregiving experienced greater concerns about long term care arrangements than those participants whose families utilized some aspect of formalized caregiving such in home supports or assisted living arrangements