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.
A number of general themes can be isolated in the review of literature on disability studies. These are: the debate on an appropriate definition of disability; the cultural context of the responses to disability; the ideological construction of disability, mainly the medicalisation and individualisation of disability; constructions of disabled identities from the perspective of psychology, social psychology, sociology, race and gender; and the social construction of disability, mainly from the political, economic and social policy perspectives.
Among the first issues to be taken up was the attempt to define disability in acceptable ways. The WHO's definition has generated considerable critical debate, primarily because the approach relies on medical definitions and uses a bio-physiological definition of ‘normality’. Second, ‘impairment’ is identified as ...