Disability and Care Work: State, Society and Invisible Lives explores the lived reality of children with disabilities and those involved in parenting and caring for them. It discusses the extent to which the needs of the disabled and their caregivers have been met by health and welfare initiatives, and finds substantial gaps. The book describes vividly how the families of children with disability negotiate the uncertain journey of identifying their child's disability, obtaining a diagnosis, accessing appropriate services and their ongoing efforts to reconcile with and recognise their child's unique situation and mode of being. It critically examines the gendered dimensions involved in caregiving, the role of the state and civil society, and the legal and institutional frameworks in place. The book calls for inclusion of disability treatment at the primary care level, enhanced technology use for diagnosis and information, coordinated national level disability care policy formulation and organised action by the disabled and their caregivers to ensure their needs are addressed by the state and society.

Making Sense of the Narratives I: Experiencing Disability—Inter-class Dimensions

Making sense of the narratives i: Experiencing disability—inter-class dimensions

The Act of Diagnosis and Initial Reaction

The narratives I collected as part of my data based on interviews with persons with disabilities and/or their families reveal certain patterns, and a number of points emerge for discussion. To begin with, it is apparent that left to their own devices in a hostile social environment, parents have had to find their own mechanisms of handling their child's disability. The accounts of almost all parents point to the very basic nature of medical knowledge prevalent about CP 20 or more years ago. This meant that the parents did not really get to know what was wrong with their child's development.

Additionally, ...

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