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Recognising the agency of people with dementia

BOYLE, Geraldine
May 2014

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People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to iden- tify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.

Facilitating disability inclusion in poverty reduction processes: Group consensus perspectives from disability stakeholders in Uganda, Malawi, Ethiopia, and Sierra Leone

MACLACHLAN, Malcolm
MJI, Gubela
CHATAIKA, Tsitsi
WAZAKILI, Margaret
DUBE, Andrew K
MULUMBA, Moses
MASSAH, Boniface
WAKENE, Dagnachew
KALLON, Frank
MAUGHAN, Marcella
2014

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This paper addresses the challenge of how to get disability on the development agenda in four African countries. We explored perceptions of what initiatives would most help in achieving disability inclusion in Poverty Reduction Strategy Papers (PRSPs), and identified factors that can either promote or hinder these initiatives. Stakeholders from Disabled People’s Organisations (DPOs), other civil society organisations (CSOs), development agencies, researchers and government ministries, participated in the Nominal Group Technique and Force Field Analysis procedures across Malawi, Ethiopia, Uganda and Sierra Leone. While each country had specific contextual factors, common ideas for promoting greater disability inclusion in PRSPs focused on policy action, the need for a stronger evidence-base, mechanisms for directly influencing the PRSP process, as well as strengthening central government and DPOs’ capacity in this regard. Common facilitators for these actions were seen as the existence of a national disability umbrella body, disability-specific legislation, named Ministries for Disability, ratification of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), and the fact that disability was already mentioned (albeit inadequately) in some PRSPs. Common inhibitors included negative attitudes towards disability, poor capacity in DPOs and government ministries, poor policy implementation, little ‘domestication’ of the UNCRPD, little political will or consultation with people with disabilities, as well as aggregating disability with other vulnerable groups, a lack of research in the area and poor coordination between DPOs.

 

Disability and the Global South (DGS), 2014, Vol. 1 No. 1

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