Who is “us” in “nothing about us without us”? Rethinking the politics of disability research

Disability research (and disability studies) emerged from the activism of disabled people who not only challenged oppressive legal and social structures, but also the ways in which research was used to legitimate that oppression. At the forefront of this challenge in the UK was Paul Hunt (Stone and Priestly, 1996). Hunt (1981) discredited the work of formerly esteemed researchers Eric Miller and Geraldina Gwynne by highlighting the ableist and unethical basis of their work. Miller and Gwynne had been commissioned to research the experiences of disabled people who were confined to institutional living following agitation by The Union of Impaired People Against Segregation (UIPAS). However, Miller and Gwynne's findings focused on improving the lot of practitioners rather than the quality of life and rights of disabled people. Hunt (1981) challenged Miller and Gwynne's claim to objective findings by demonstrating that they had prioritised the perspective of practitioners over disabled people and reiterated wider social prejudices about disability. For example, Miller and Gwynne argued that in residential care, "the essential task to be carried out is to help the inmates to make their transition from a social death [e.g. being/becoming disabled] to physical death" (1981:10). Miller and Gwynne's depiction of disabled people throughout their work was discriminatory and inflammatory, positioning disabled people as burdens and parasites. Hunt, however, subverted their discourse: "Miller and Gwynne make various references to residents as parasites and see us as essentially feeding off society not only economically but emotionally as well … The real parasites are those like Miller and Gwynne who grow fat by feeding on others miseries" (1981: 11). Hunt's analysis of the power and politics of research laid the foundations of disability research. He highlighted the politics of objectivity and accountability, exploitation and oppression and mandated that disability research should benefit disabled people.