Conceptualising Intensive Caring Activities: The Changing Lives of Families with Young Disabled Children

Feminists have put care on the sociological agenda. At times they have defined it as an activity that imprisons women, at other times they have seen it as a value that is marginalised in society and should be celebrated. In contrast disability writers view care as a category that pathologises those who are defined as its recipients and seek to avoid both the language of care and analysis of those who ‘care for’ disabled people, for example parents of disabled children. This paper argues that it is important to work with the concept of care and to explore the activities of parents. The contexts within which individuals are involved in caring activities frame and influence what is seen as care, how care is performed and received, how different roles and identities are read and how changes occur within caring activities and within the lives of those involved. Therefore exploring the social, cultural and political contexts within which care occurs is important to understanding its significance. Through discussion of a research project involving the parents of very young disabled children this paper argues that cultural stereotypes around disability within the medical model and within society confine the care made available to families where impairment is present. However, it goes on to argue that families challenge that containment through patterns of care they adopt and receive from others in similar positions to themselves and through seeing value and worth in their new lives and family form. The social and political dimensions to this transformation are examined in order to situate care and transformation at the societal rather than individual level.