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

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.

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.