TY  - CHAP
AB  - 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.
VL  - 6
SN  - 978-0-85724-800-8, 978-0-85724-799-5/1479-3547
DO  - 10.1108/S1479-3547(2011)0000006007
UR  - https://doi.org/10.1108/S1479-3547(2011)0000006007
AU  - Block Pamela
AU  - Rodriguez Eva L.
AU  - Milazzo Maria C.
AU  - MacAllister William S.
AU  - Krupp Lauren B.
AU  - Nishida Akemi
AU  - Slota Nina
AU  - Broughton Alyssa M.
AU  - Keys Christopher B.
ED  - Allison C. Carey
ED  - Richard K. Scotch
PY  - 2011
Y1  - 2011/01/01
TI  - Building Pediatric Multiple Sclerosis Community using a Disability Studies Framework of Empowerment
T2  - Disability and Community
T3  - Research in Social Science and Disability
PB  - Emerald Group Publishing Limited
SP  - 85
EP  - 112
Y2  - 2024/04/26
ER  -