Identity and belonging for people with profound intellectual and multiple disabilities

Abstract

Despite all the positive developments in disability rights, legislation, attitudes and practices over the last fifty years, there remains a ‘hierarchy of disability’ (Reinders, 2008, p.26) that consigns people with intellectual (learning) disability to its lower ranks, and people with profound intellectual disability to its lowest of all. For those who can self-advocate, some rights and independence have been legitimately claimed, but self-advocacy is not readily available for all. Nonetheless, it is important that we explore ways in which people with profound intellectual disabilities can belong in self-advocacy groups.In this article we discuss some of the challenges and successes of a small UK project that sought to explore the potential of arts-based activities to bring people with profound intellectual disabilities together with learning disabled self-advocates. The project was inspired by the provocation of a parent who felt excluded from the self-advocacy movement because her daughter needed others to speak up on her behalf, and by a self-advocacy organisation being keen to do more to include people with profound and multiple learning disabilities. People First Dorset (PFD) are founding members of SPIRIT – the Southampton Platform for Inclusive Research and Ideas Together – and work regularly with Melanie Nind and Andrew Power at the University of Southampton on research that matters to members.

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ORCID for Melanie Nind: orcid.org/0000-0003-4070-7513

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