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: 2.89). 07/2008; 67(5):834-43. DOI: 10.1016/j.socscimed.2008.05.023
Source: PubMed


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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Available from: Andrew Power, Jun 16, 2015
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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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    ABSTRACT: Disagreements and misunderstandings between informal caregivers and care-receivers have been widely reported, but the causes are unclear. The present article compares the views of people with acquired brain injury and their main informal caregivers (28 dyads, n = 56). First, we report a quantitative analysis finding that the majority of disagreements were about caregivers' identity. Caregivers saw themselves as less confident, less intelligent, more embarrassed, more independent and more overprotective than care-receivers rated them to be. Caregivers understood the care-receivers' ratings but disagreed with them' Second, we report a qualitative analysis focussing on how caregivers felt themselves to be perceived by significant others. Caregivers felt that the care-receiver, family members, the general public, health services and even friends often have negative views of them. The 'caregiving bind' is proposed as a cause of caregivers' negative identity. It arises when caregivers try to protect the care-receiver's identity by concealing the extent of informal care provision, with the unintended consequence of undermining the prospects of the caregiver receiving positive social recognition for the challenging work of caregiving. The caregiving bind has implications for therapy and points to the potential of friends and health services to provide caregivers with positive social recognition.
    Full-text · Article · Jun 2014 · Social Science & Medicine
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    ABSTRACT: In their localized forms it is often hard to tell exclusion from inclusion, due to the complex multidimensional nature of these processes. In this paper I argue that an analytical distinction between various types and elements of community is necessary in order to make sense of exclusion, and in order to develop appropriate strategies to facilitate inclusion for marginalized populations. This issue is discussed in the context of people with intellectual disabilities and the community-care movement in the State of Victoria, Australia. Community-care relies on a range of interpretations of the notion of community, and is implemented within a variety of actual communities, giving rise to different forms of exclusion and different strategies of inclusion.
    No preview · Article · Aug 2009 · Social & Cultural Geography
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