CURRENT ISSUES Powerful Practices: An Australian case study of contested notions of ethical disability research

Abstract

Setting the Scene This is the story of research identified by powerful institutional players and a non-disabled researcher as being ethical and non-discriminatory, but held by research subjects with disability to be disrespectful, discriminatory and unethical. It shows the imbalance of power, and limitations of existing Australian provisions in the regulation of research, privacy and anti-discrimination. It also attests to the discursive shaping of notions of justice and ethics by institutional players to suit institutional and corporate ends. This is a true story where only the names of all players have been changed. The author has received consent from the Australian organisation of people with disability to publish this, as they are concerned to articulate some of the issues. Hence, the names are changed, but all other details of this saga remain the same. The account begins in September 1994 and concludes in February 1996. Our assembled cast is a researcher, the State Department of Sport and Recreation, the University of Noname and the organisation 'Humans with Disabilities Inc.' (HWD).