“Power, Agency, Aging, and Cognitive Impairment: The Stories of Two Women”

All of us get old if we are lucky, and disability is a natural part of human variation across the lifespan. Early in her life, Susan* was labelled with developmental disability but, unlike many other disabled people who were born during the mid-twentieth century, she grew up within her family, not in an institution. During her mid-twenties, Susan moved into a group home, where she lived for thirty years. Helen* enjoyed an exciting big-city career. At eighty, she was labelled with dementia. When she fell at the age of eighty-seven, she was taken to hospital and then moved to a nursing home. Without consulting her, others decided that she would remain there. In our chapter, we reflect on exercises of power over these two women with cognitive impairments—one who aged with disability, and the other, who aged into disability—and on how they responded to power through their agency. We used critical ethnography, incorporating observation, interviews, and reflection. We look at three specific exercises of power: devaluing people with cognitive impairments, prioritizing institutional and caregiver needs over those of disabled people, and excluding them from decision making. We then propose alternatives that might reduce the impact of these exercises of power and increase agency among people who are aging with and into cognitive impairments. Finally, we reflect on how, in later life, the experiences of people who have aged with cognitive impairment differ from those who are aging into it. *Pseudonyms

Coauthor: Nancy Hansen, PhD, University of Manitoba