From Self-Advocacy to Solidarity: Narrating Disability and Dementia beyond Personal Identity

Does the pursuit of disability justice for people with dementia require that people with dementia personally identify as disabled? On one level, self-representation has been a critical strategy for combating harmful and inaccurate assumptions that people with disabilities or dementia are inherently incapable of self-advocacy. At the same time, disability-rights narratives in which self-representation is fundamental to liberation cannot fully account for the realities of people with advanced dementia or other conditions that profoundly affect cognitive function. This essay argues that bringing disability and dementia advocacy together requires a shift beyond identity-based personal narratives and toward structural narratives that illustrate the processes through which dementia is historically constructed and that imagine alternatives to those processes. Such narratives not only reveal the effects of ableism beyond those who identify as disabled but also illuminate possibilities for resisting harmful structural forces through coalitional organizing and solidarity.