Citizenship as Distributed Achievement: Shaping New Conditions for an Everyday Life with Dementia

Abstract

Citizenship for people with a disability has become a notable subject within disability studies, but dementia has only sparingly been included in these studies. However, an important international debate on citizenship for people with dementia is emerging, highlighting rights, empowerment, agency, and new socio-political understandings. Yet, even though these studies often entail a relational understanding, they tend to perceive citizenship as allocated statically to individuals. This article contributes to the debate by conceptualizing relational citizenship as the distributed achievements of care-collectives consisting of a complex set of socio-material agents, including the person with dementia and the disease. Rather than adding more knowledge about experiences of dementia, the article develops an understanding of the critical mechanisms producing citizenship for all, and of care-collectives as potential facilitators for such distributed achievements. The results indicate that citizenship is a malleable and precarious enactment that needs continuous nourishment to be maintained, and that localized knowledge about the emergence and development of care-collectives is crucial for this maintenance and, hence, for shaping decent conditions for an everyday life with dementia.

Material Citizenship: An ethnographic study exploring object–person relations in the context of people with dementia in care homes

“…It is especially relevant for people with a disability, as opportunities to live a meaningful life are often curtailed by others (Lid, 2015) through materialist practices. Take, for example, Ursin and Lotherington’s (2018) report of a young man with dementia living in a nursing home who used his mobile phone each day to speak with his wife. On two occasions, staff found the mobile phone in the laundry, on bringing a third replacement mobile phone, staff informed his wife that the mobile phone would be kept in the staff room.…”

Multiple ontologies of Alzheimer’s disease in Still Alice and A Song for Martin: A feminist visual studies of technoscience perspective

“…While violin playing helps Barbara to overcome AD and her dependence on Martin, playing the piano reminds Martin of loss, so as the AD progresses he stops composing. Nevertheless, his opera is constructed as a ‘distributed achievement’ of collective care agencies: Barbara, Martin’s manager, Martin’s daughter and a philharmonic orchestra (Ursin and Lotherington, 2018: 62). The film also showcases Barbara as more affected with AD than Martin, defeating the biomedical enactment of the disease.…”

Editorial Review: Touring the Archive 1999–2017 and Mapping the Future of Scandinavian Journal of Disability Research

“…In new pieces coming through the Journal now we are seeing this expansive discussion of citizenship requirements continue. For example, Ursin and Lotherington (2018) extend discussions around citizenship for disabled people by arguing that people with dementia can still be thought of as having citizenship rights through a "relational understanding" of citizenship, including the intricate net of practices of the person with dementia, the illness and the support workers around the person.…”