Disability is Beautiful, Disability is my Culture

UNCG Author/Contributor (non-UNCG co-authors, if there are any, appear on document)
William H. Purcell (Creator)
The University of North Carolina at Greensboro (UNCG )
Web Site: http://library.uncg.edu/
Elizabeth Chiseri-Strater

Abstract: The stories of advocates in the disability rights movement remain largely undocumented, especially in the area of the arts. This research uses ethnographic fieldwork to document such stories in the interviewee's own words. The resulting portrait of disability, advocacy, and the arts also details the story of interviewee and interviewer, and of the fieldworking process as a whole. This thesis focuses on the life history and life story of musician Jim Whalen and his contributions to the disability rights and arts movement. The fieldstudy explores the stories, creations, beliefs, motives, feelings, philosophies, thoughts, and life histories, of not only Whalen but also of the researcher and others intersecting with Whalen's life and work, including writer Steve Kuusisto. An ethnographic methodology, including both in-depth interviews and participant observation, comprise the research design. The researcher uses the interdisciplinary-research tools of fieldwork in order to document and represent his findings. In this study, advocacy and art are understood as vehicles to reframe current notions about disability. In addition to insight into the disability rights movement at this point in time, the stories included provide an arsenal of techniques, concepts, and tools to help disability advocates understand, reframe, and renegotiate life experiences, in particular through art. In conjunction with reframing ideas such as "This is normal for me" and renegotiating experiences such as "Always stops right now," other advocacy tools discovered include "Summoning the dragon," "Not if, but how," and "Everyone has a why." The final product is part word portrait, part life history, part snapshot, part auto-ethnography, part biography, part oral history, part cultural history, part narrative, part ethnography --it is both an explanation and an ode to the two central themes from which the title is born: "Disability is my culture" and "Disability is beautiful."

Additional Information

Language: English
Date: 2008
Disability, Ethnography, Fieldwork, Interview, Music, Narrative
People with disabilities and the arts.
Social advocacy.
People with disabilities $x Civil rights.
People with disabilities $x Interviews.
Musicians $x Interviews.
Enthnology $x Fieldwork.
Sociology of Disability.

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