Nothing about us without us: searching for the narrative of disability.

Nothing about us without us” is a mantra likely originating in South Africa’s disability rights movement. It has since been adopted by many disability rights advocacy groups to communicate that individuals with disabilities should be at the forefront of any decision or policy-making that affects their lives. Historically, individuals with disabilities have been disenfranchised by societal systems including the systems of medicine and rehabilitation (Kielhofner, 2005). Professionals whose clients are individuals with disabilities too often have been the decision makers about issues that affect their clients without involving the clients themselves. Persons without disability are automatically outsiders to the disability experience and therefore cannot have the same level of insight about issues that impact individuals with disability (Smart, 2001). Consequently, disability studies values documented experience of individuals with disabilities above all other sources of information about disability and promotes the idea that individuals with disabilities should be included in decisions related to services, accessibility, and rights (Kielhofner, 2004).