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 II: Living with Disability

Making sense of the narratives ii: Living with disability

Standing up to Disability: Mothers as Pioneers

Disability professionals and activists have acknowledged that women are good problem-solvers. Once they get over the shock and grief of the terrible odds that their children face, it is they who respond to the challenges they are confronted with. We have seen in the previous chapter that in the 1970s and 1980s, CP was almost a new word and even the medical establishment did not know enough about the condition to tell the parents what they could expect for their children. It was not clear how to facilitate the learning that was similar to what other children were learning. To be ...

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