The Lifeworld Empowerment Toolkit: Health Care Empowerment In-praxis

• In Event: 074 - Regular Session. Health Care and Care Delivery 2

Abstract

Told through the narratives of 50 primary caregivers of children with autism, I detail the current conditions, modes, and mechanisms through which lay empowerment in health care is understood, practiced, facilitated and limited, specifically in real-world praxis. I theorize and depict health care empowerment in terms of lay behaviors and practices, processes, and attitudes and rationales, located within both the public and private spheres--within education, the health care system, the clinic, public interactions, and the home and family. With particular attention to the nuanced processes through which one becomes a lay diagnostician, an expert caregiver, and an autism advocate, this paper demonstrates how families fight for the diagnosis, become health literate expert caregivers, secure diverse services, and advocate for social reforms, which together subvert dominant health care practices and traditional top-down knowledge production between medical experts and lay parents. This paper highlights exemplar caregiver empowerment and medical consumerist practices, as well as the individual and structural constraints that obscure or inhibit lay empowerment in health care and autism advocacy.

Author

• Cara A. Chiaraluce, University of California-Davis