Article

Caring for independent lives: Geographies of caring for young adults with intellectual disabilities

Institute for Health Research, Lancaster University, Bowland Tower East, Lancaster, Lancashire LA1 4YT, UK.
Social Science & Medicine (Impact Factor: 2.56). 07/2008; 67(5):834-43. DOI: 10.1016/j.socscimed.2008.05.023
Source: PubMed

ABSTRACT This paper engages with the emerging disciplinary clash between 'care' and 'independence' within disability studies by examining the geography of home care for young adults with intellectual disabilities. The care system as a whole is viewed as central to disablist structures within disability studies (see Thomas, C. (2007). Sociologies of disability and illness: Contested ideas in disability studies and medical sociology. Hampshire: Palgrave Macmillan.). However, despite the theorisation of dependency as being in antipathy to the goals of the disability movement, caregiving at home still continues to dominate community care. The paper attempts to address how family carers are 'caught-in-the-middle' between their 'duty' to care and at the same time, perpetuating dependency; the reality being that parents have to deal with issues of being overprotective and confronting various social assumptions about disability. It examines the narratives from 25 family caregivers in Ireland who provide personal assistance to young adults with intellectual disabilities.

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    • "Sandra, for example, mentioned that " there's a lot of support needed for Rachel to look as though she doesn't need support, " to ensure that she would arrive to meetings on time, appropriately equipped, and with wellrehearsed stories. Successfully concealing care provision from care-receivers (Power, 2008) and friends and family (Krefting, 1990) can explain why caregivers view themselves more negatively than they are viewed by their partners with ABI, and why caregivers understand this disagreement. Simply put, the disagreement is not accidental, it is sometimes a deliberate creation by caregivers to protect the identity of the person with ABI. "
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