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 III: Invisible Work, Invisible Women—Caring for the Disabled

Making sense of the narratives iii: Invisible work, invisible women—caring for the disabled

Care is defined with reference to the activities and relations involved in caring for the ill, the disabled, the elderly and the dependent young. It is at one and the same time a form of interpersonal relations and a ‘social exigency’ or necessary activity in society. Hence, care is particularistic—in the sense that it pertains to intimate human relations and activities—and yet at the same time general—in the sense that it is part of, and integral to, society.

In this chapter an attempt will be made to explore caregiving, specifically the caregiving of the mother of a child with disability ...

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