Tragedy and catastrophe: contentious discourses of ethics and disability.
Drop tragedy talk and let disabled voices set the ethical frame.
01Research in Context
What this study did
McIlvane (2003) wrote a theory paper about ethics and intellectual disability.
The author looked at two common story lines: disability as tragedy and disability as catastrophe.
Instead of accepting those frames, the paper urges professionals to seek counter-stories told by disabled people themselves.
What they found
The paper finds that tragedy and catastrophe talk rob people of agency.
Listening to first-person accounts flips the script from pity to rights and respect.
How this fits with other research
Gleeson (2010) extends the same critique into history. That paper shows big shifts like institutionalisation were driven by politics, not science.
Crowe et al. (2021) push the idea further. They ask BCBAs to map school-to-prison contingencies that still trap disabled people.
Pennacchia et al. (2025) supply the how. They give three pillars for making qualitative research accessible so non-speaking clients can join the conversation.
Luckasson et al. (2020) turn the ethic into a checklist. Their balanced, rights-first framework guards against crisis-driven cuts that echo catastrophe talk.
Why it matters
You shape the story your team tells about clients. Swap "tragedy" for counter-stories in reports, team meetings, and parent training. Ask clients or their advocates to share what a good life looks like to them. Record those views and let them steer goal selection. This small language shift can change culture faster than any new protocol.
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02At a glance
03Original 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?
Journal of intellectual disability research : JIDR, 2003 · doi:10.1046/j.1365-2788.2003.00533.x