Enacting Varieties of Subjectivity Through Practices of Care: A Story of Living With Motor Neuron Disease.
People living with disability or chronic illness often use practices of care to construct a version of life they are satisfied with. Drawing from a narrative-based study with people living with motor neuron disease (MND), I show how one couple tried to be recognized as active agents in their life, although oscillating between positions of less and more power. Through an examination of the practices of care that the couple enacted, I illustrate how their positioning in relation to practices of care helped them create meaning in their life. In their efforts to create a way of living they were satisfied with, they engaged in negotiations between varieties of subjectivity. Their subjectivity was not static but was constructed as they shared power to carry out everyday self-care activities. The findings also underline the importance for health care practices of exploring the experiential knowledge of people living with MND.
Cardiff University, Cardiff, UK sakellarioud@cardiff.ac.uk.
Dikaios
D
Sakellariou
D002908:Chronic Disease; D006233:Persons with Disabilities; D006801:Humans; D016472:Motor Neuron Disease; D033262:Narration; D012648:Self Care
Wales; agency; caregivers / caregiving; disability / disabled persons; medical anthropology; narrative inquiry, storytelling; qualitative; quality of life