Understanding Care from the View of Individuals with Cerebral Palsy: Pity, Politics, and Pride

Abstract

Throughout history, disability has been understood in different ways: as a curse, a biomedical condition, a societal/political problem, a minority identity, and a social and cultural construction. Disability understandings reflect society’s legislation and the character of social support for people with disability and vice versa. In this article, qualitative interviews with adults with cerebral palsy were analyzed with a focus on how care, as a fundamental need between people, might be mediated by implicit and explicit understandings of disability. The central focus lies in how historical paradigms of disability and caregiving are reflected in the lived experiences of adults with cerebral palsy. The findings were overall twofold. First, contemporary disability understandings do not substitute former understandings but coexist as superimposed practices of care. Second, new perspectives of disability and care emerged emphasizing equitable relationships, empowerment, and solidarity. It is discussed how premodern, modern, late modern, and postmodern understandings of disability shape the nature of care directed at people with disability in a Western welfare context and how practices of care can contribute to the advancement of social justice.