Building pediatric multiple sclerosis community using a disability studies framework of empowerment

Purpose - Researchers use the concept of biosociality and a disability studies framework of empowerment to present and analyze examples of community formation and participation for youth with pediatric multiple sclerosis. Methodology - The data were collected using participant observation, individual and focus group interviews during Teen Adventure Camps held in the summers of 2004-2009 and an Educational Transition Retreat held in the fall of 2008.Findings - Evidence of community formation and identification include the development of formal and informal systems for mutual support and mentoring, as well as transformations in self-perception and collective identity. Challenges to community formation include differing perspectives about disability-pride vs. diagnosis-specific affiliations. Research implications - This research indicates that there are many pathways to individual and community identification which may include and even intertwine both diagnosis-specific and disability-pride approaches. The process of community formation is transformative, thus preferences with regard to community identification should not be considered stable, but rather understood as a developmental process that may change over time.Originality/value of paper - Building upon social and minority group theories, this research moved beyond social critique to develop and implement strategies for community development, individual, and group empowerment.