Telling a Different Story: Marginality and Empowerment in the Lives of Adults with Cerebral Palsy

This disability studies based dissertation is a qualitative, phenomenological exploration into the social and psychological experiences of adults with cerebral palsy (CP). Specifically, the project sought to explore how stigma impacted the personal identity and social and psychological well-being of individuals with CP. This has significant implications for their ability to live healthy and productive lives in their communities. Twelve individuals with CP, ages 26 through 49, took part in the research. Participants were recruited from hospitals and disability advocacy organizations as well as from online discussion boards and social networking sites. The research activities included two individual interviews, a diary study, and a virtual focus group. Findings suggested that did experience stigma and differential treatment in the course of their everyday lives, and several had experienced depression. Many suggested that they struggled for control, not only over their bodies, but to define and maintain their own identities in a culture that prizes health and consistently devalues disability. Yet most had developed strong relationships with a few key individuals, and many had integrated effectively into the disability community where they were able to find others with similar experiences and unconditional acceptance of their disabilities. Consistent with previous findings, integration into the disability community frequently led to a reformulation of values and a stronger sense of self.. In contrast, those who were not affiliated with the disability community frequently felt a greater need to strictly control how they presented themselves to others as a means of avoiding stigmatization and rejection. These findings have significant implications for researchers and clinicians who are concerned with the overall well-being of adults with CP. As more individuals with CP are becoming integrated into mainstream society, it is important to consider not only their physical health, but also upon the factors that can elevate their psychosocial health. In addition to working to improve individual functioning, there should be an increased focus upon removing social barriers, facilitating interpersonal relationships, and building disability identity and community. Attending more closely to these factors will ensure that as people with CP age, they can lead meaningful and productive lives.