Human dignity at stake – how parents of disabled children experience the welfare system

Abstract

Caring for children with special needs and enhancing their potential is an undisputed collective concern; the Norwegian welfare state has established a range of economic benefits and social services to help families with demanding tasks achieve a dignified life. Based on interviews with 11 parents of children with severe physical and learning disabilities, this article explores parents' experiences with the process of obtaining public recognition and compensation for private care work. The analysis shows that the process of applying for such benefits may actually leave parents with a sense of bereavement. Applying means presenting a beloved child as distinctly unequal to other children, and having an application rejected induces an emotionally strong reaction. To provide a setting for the empirical analysis, the article draws on parts of Martha Nussbaum's theory about the conditions for human dignity and her conceptualization of capabilities.

Keywords:

• parents
• disabled children
• welfare state
• recognition
• capabilities
• human dignity
• self-conception

Notes

1. One mother has two children with the same rare chromosome disorder.

2. 10 fathers provided contact information; four did not respond, and four others were ruled out because they lived too far away, making their participation practically and economically difficult.