Introduction

This short but concise quote captures one of this chapter's key assumptions: that the experience of ageing with a lifelong disability is something that not only influences the disabled individual, but also very much contributes to shaping the lives of the family members (DeMarle and le Roux, 2001; Dowling and Dolan, 2001; Brett, 2002; Shakespeare, 2006). While the other chapters of this book build on stories of ageing disabled people, this chapter focuses on ageing parents and their personal experiences of having closely followed a disabled child growing up and becoming adult, and also considers in what ways this experience has shaped their lives − in an historical era marked by many changes and reforms in policies regarding disability.

The aim of this chapter is to describe and analyse aged parents’ experiences of having followed a child with disability throughout the lifecourse, and of providing help and care for this child, including in later life. Various events and circumstances that have contributed to shaping the parents’ lifecourse are described. The main questions are: what does the parents’ caring role entail over time? How do parents view their own lifecourse in relation to this experience? What impacts have changed ideologies and policies had on their lives? What are the implications of ageing and becoming old to the parents? To date, these questions have only been studied to a limited extent.

This chapter is based on a qualitative study carried out during 2006 and 2007 in Sweden. Biographical in-depth interviews were conducted with 16 family members – parents and siblings – close to people with various disabilities (mainly physical) who were born between 1957 and 1982. The focus here, however, is on the 12 parents, nine women and three men. The parents were in the age range of 52 to 85 (ten were over the age of 65 and living as pensioners), and their adult disabled children were aged between 25 and 50. The children of the interviewed parents had different kinds of impairments, the most common being cerebral palsy and spina bifida.