What does participation mean? An insider perspective from people with disabilities

Joy Hammel*, Susan Magasi, Allen Heinemann, Gale Whiteneck, Jennifer Bogner, Evelyn Rodriguez

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

361 Scopus citations

Abstract

Purpose. Although participation is an important construct and valued goal, how it is conceptualized, defined and measured varies widely. This qualitative, multi-site study sought to gain an insider perspective from people with disabilities in grounding what participation means, how to characterize it, and the barriers and supports to participation. Method. Sixty-three people self-identifying with diverse disabilities participated in qualitative focus groups across sites. Results. Participants conceptualized participation as a cluster of values that included active and meaningful engagement/being a part of, choice and control, access and opportunity/enfranchisement, personal and societal responsibilities, having an impact and supporting others, and social connection, inclusion and membership. Conclusions. No gold standard for ideal or optimal participation emerged; no one defined set or frequency of activities accounted for 'full' participation. Participants described needing to be free to define and pursue participation on their own terms rather than meeting predetermined societal norms. Participation was viewed as both a right and a responsibility, influenced by and ascribed to the person and to the society. Participation does not occur in a vacuum; the environment dynamically influences participation. Implications of this conceptual framing for assessment, research and systems level change to support participation of people with disabilities are discussed.

Original languageEnglish (US)
Pages (from-to)1445-1460
Number of pages16
JournalDisability and Rehabilitation
Volume30
Issue number19
DOIs
StatePublished - 2008

Keywords

  • Assessment
  • Participation
  • Qualitative research

ASJC Scopus subject areas

  • Rehabilitation

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