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.

the Welfare State as Paternalistic Caregiver

The welfare state as paternalistic caregiver

While campaigning for elections in 2010 in the United Kingdom, David Cameron, who himself had a child with CP, made a fervent plea for the state providing care to the disabled. With great eloquence he said:

My son Ivan was born with a profound disability, and my experience of looking after him has changed the way I see a lot of things—not just as a father, but as a politician, too. Samantha and I went on a steep learning curve. From that I learned five big lessons that have had a direct impact on what my party wants to do in government for those with disabilities and their families.

The first lesson I learned was ...

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