Grant: Travel Awards - Institute Community Support

Social 'inclusion' is a notion that is idealized and shapes our thinking about people as insiders or outsiders. Even as healthcare aims for inclusion of people with disabilities, it is not clear what types of inclusion contribute to their health and well-being. In this presentation we explore inclusion through research with 13 Canadian disabled youth who had little or no speech. Research participants used augmentative and alternative communication including speech-generating devices, personal communication assistants, gestures, or facial expressions that were combined to substitute for speech. In the study we developed innovative interview, photo and visual methods that were combined to describe participants' daily activities, social networks, and their everyday environments. We examined the ways that prevalent understandings of inclusion and exclusion influenced youth with disabilities, and showed how they reformulated imposed notions of inclusion. In social settings assumed to be inclusive, youth were often marginalized, although they had come to accept this as natural and necessary. In mainstream settings where youth were physically included, they felt socially excluded and treated as invisible or even inhuman. In their efforts to feel included and valued, youth emphasized their positive traits, minimized their impairments and pointed out they were "the same on the inside". Together with their families, they invested extraordinary efforts to create positive spaces of inclusion on their own terms. The research contributes understandings of social inclusion as a complex and subjective process. Our study results can be used to better inform inclusion-focused programs and policies. We also contribute new methods to include people with communication impairments in research.