The Stories They Tell: A Participatory Research Approach to Illuminating Film Representations of Intellectual/Developmental Disability

Previous research on film representations of disability has highlighted the powerful influence of media on social understandings and expectations of people with psychiatric and physical disabilities. However, there is very sparse literature about film representations of people with intellectual/ developmental disabilities (IDD), including their engagement in occupation. Further, there has been no research about how people with IDD themselves interpret and respond to such representations. Accordingly, this qualitative study examined: (a) the stories and messages (representations) about people with IDD portrayed in contemporary film and (b) the extent to which these film representations reflect the lived experiences and perspectives of people with IDD. The study was theoretically underpinned by Hall’s model of the process of mass media communication (including film) and a constructivist perspective of disability. The participatory research approach and methods employed involved several co-researchers -- three adult self-advocates with IDD, two university-based researchers, and two MSc OT students -- and focused on inclusion, collaboration, and reciprocal learning throughout the study. Eight English-language Hollywood films portraying a lead or major adult character with IDD and released between 2003 and 2009 were viewed repeatedly and thematically analyzed using constant comparison between and across films. Several themes related to occupational engagement of adults with IDD (i.e., limited sexuality, exaggerated vulnerability, desirable occupational participation) emerged from the qualitative analysis. The self-advocate co-researchers with IDD then critiqued these emergent themes with respect to congruence of the themes with their own lived experiences. The congruencies and mis-matches between the film portrayals and lived experiences of the co-rsearchers are discussed in terms of their implications for occupational science. The findings: (a) contribute new knowledge that challenges stereotypes and assumptions about occupational meaning and occupational engagement for people with IDD; (b) highlight the value and potential for revealing new insights and understandings about occupation for people with IDD, and possibly other populations, through the use of participatory research methods; and (c) underscore the potential benefits of participatory methods for co-researchers with IDD. Key Words: participatory methods; qualitative research; film representations of intellectual/developmental disabilit