Exposing the Limitations of Disability Theory: The Case of Juvenile Batten Disease

Abstract

Current estimates suggest that approximately 10% of the world's population, more than half a billion people, are disabled. It is predicted that this number will rise dramatically in the next quarter of a century and that increasing longevity of children with gene-linked disability means that this group will make up an ever more significant percentage of this number in the West. The area of disability studies has developed alongside an increasing awareness that ‘disability’ is about more than the care of functionally impaired people. This paper explores the nature of juvenile Batten disease; a rare, neurodegenerative, metabolic disease; as a means of exposing some of the limitations of current sociological theory around disability. The arguments for the social construction of disability and the removal or separation of the body or ‘impairment’ from disability are addressed along with the issue of the ‘new genetics’. It is suggested that, while disability theory has made huge advances in disability awareness, it has marginalized the embodied experiences of those with multiple or profound disability.