Citizenship in action: the lived experiences of citizens with dementia who campaign for social change
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Original versionBartlett, R., 2014. Citizenship in action: the lived experiences of citizens with dementia who campaign for social change. Disability & Society, 29(8), pp.1291-1304. http://dx.doi.org/10.1080/09687599.2014.924905
This article examines the experiences of citizens with dementia who campaign for social change, with a particular focus on the effects of campaigning on citizenry identity and psycho-emotional well-being. In diary-interviews, 16 people with dementia recorded and described their experiences of campaigning. Findings revealed that although campaigning can be energising and reaffirming of citizen identity, because it (re)located a person within the realm of work, individuals may experience dementia-related fatigue and oppression linked to normative expectations about what someone with dementia ‘should’ be like. The discussion is linked to critical debates within disability studies about the psycho-emotional aspects of impairment and disability, and concludes that the struggle for citizenship has only just begun for people with dementia.