Building Pediatric Multiple Sclerosis Community using a Disability Studies Framework of Empowerment

Abstract

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.

Citation

Block, P., Rodriguez, E.L., Milazzo, M.C., MacAllister, W.S., Krupp, L.B., Nishida, A., Slota, N., Broughton, A.M. and Keys, C.B. (2011), "Building Pediatric Multiple Sclerosis Community using a Disability Studies Framework of Empowerment", Carey, A.C. and Scotch, R.K. (Ed.) Disability and Community (Research in Social Science and Disability, Vol. 6), Emerald Group Publishing Limited, Leeds, pp. 85-112. https://doi.org/10.1108/S1479-3547(2011)0000006007