Tragedy and catastrophe: contentious discourses of ethics and disability

Abstract

Undertaking theoretical-conceptual research, this paper identifies and explores two dominant discourses that seemingly underpin ethical considerations about people with intellectual disability in this current biotechnological era. The discourses, identified as tragedy and catastrophe, are constructed from conjunctions of particular theoretical understandings of disability and particular frameworks of ethics. For example, both tragedy and catastrophe are founded upon notions of disability as personal tragedy; and ethics, especially bioethics, primarily practised as medical ethics. What differs between the discourses is the apparent intent of each, and subsequently the arena in which they are activated. This paper asserts that the identification and deconstruction of these discourses, and their implicit ethical agendas, cannot be ignored and indeed should be challenged, when considering the impact of technological and scientific advances, such as the Human Genome Project. However, there has been little attention given in contemporary ethical discussions as to whether these discourses are contestable, or the power base of their constructions questionable. In fact, the insertion of 'counterstories' from relational experiences with people with disability may offer both alternative understandings and a more appropriate ethical platform from which to engage in critical discussions. The challenges are, then, whether these counterstories can be heard in such a climate; and what currency will bioethics, as a discipline, give them against the very powerful and partnering disciplines controlling the biotechnological revolution?