Unheard Voices: An Ethnographic Study of Childhood Onset Disability, Cerebral Palsy, Society, and Medicine

Abstract

Cerebral palsy (CP) is the most common physical disability among children, yet little is understood about this disability throughout the lifespan, from childhood into adulthood.

Young adults with CP are facing unprecedented challenges finding appropriate medical care. There is a push to transition adults with CP out of the pediatric medical system, while adult-focused practitioners often lack the experience to properly treat patients with complex childhood conditions such as CP.

These barriers to accessing suitable medical care are important because, without adequate treatment, it is difficult for people with CP to participate in the social rights granted through legislation like the Americans with Disabilities Act. This study explores how the needs of people with CP and other childhood onset disabilities are represented in American medical practices and society at large.