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Challenging the Need for Gratitude

Comparisons Between Paid and Unpaid Care for Disabled People

Murdoch University, Australia r_galvin{at}bigpond.net.au

For those who are able-bodied, gratitude may well comprise a comfortable and unproblematic response to kindness, but for disabled people it can signify an unbearable state of perpetual obligation. A recent study which took a grounded theory approach to the exploration of the feelings of loss experienced by people living in Australia, New Zealand, the United States and the United Kingdom in response to becoming ‘disabled’ demonstrated that the prime distinguishing feature between those who were ultimately able to reconcile their need for support and those who continued to feel diminished by it was signified by the presence or absence of formal care arrangements. People who had access to paid personal assistants, whether through community-based services or the marketplace, tended to feel more comfortable and in control of their lives, while those who relied on the goodwill of others commonly experienced a great deal of shame and frustration in relation to their ongoing needs. It is argued here that those whose identities suffered from the experience of unrelenting reliance on informal care have effectively been disabled by their lack of access to the kinds of services which have the potential to remove the tendency to feel, and be constrained by, shame and irrevocable gratitude.

Key Words: disability • formal care • gratitude • independence • informal care • social model

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