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 review of the literature on the subject of disability shows that the issue of disability and the experiences of persons with disabilities have been given scant consideration in the academic arena. The two disciplines that have worked in the area of disability are medicine and psychology. However, in both disciplines, the predominant context of reference is medical. Further, psychology not only views disability as a ‘problem’ but also emphasises the need for ‘adjustment’ by the person with disability to the ‘normal’ environment. None of the other academic disciplines, such as sociology, history, political science, anthropology and social policy, have developed theories or understandings other than basing studies in a medical context. The focal points of discussion within the disciplines, particularly medical sociology ...