Beyond normative ethics: Ethics of disability arts research
Mykitiuk. R., Chaplick, A., & Rice, C. (2015). Beyond normative ethics: Ethics of disability arts research. Ethics, Medicine, and Public Health, 1(3), 373-382. https://doi.org/10.1016/j.jemep.2015.07.005
In Western culture, the pervading medical model of disability has characterized disability as a problem in need of a solution: an unwanted condition that demands a cure. Even the word “disability” is unavoidably negative: structurally it signifies a loss or a lack, a state that exists only because it falls short of something better. Contrary to mainstream thinking, disability is not a natural state of inferiority or a stroke of misfortune; rather, disability is a culturally fabricated narrative of embodiment. As Scully (2008) observes, representations of disability, created in the main by non-disabled people, tell normative bodies what they want to know – or think they want to know about non-disabled people. Arts-based mediums have the potential to effect positive change and alter prevailing perceptions of embodiment. Disability arts provide individuals living with disabilities with opportunities to communicate their perspectives in sustainable ways and speak back to culturally dominant images and stories. One such initiative, Project Re•Vision, uses the power of arts-informed research to tell stories from the position and leadership of those who embody difference. In doing so, the project seeks to challenge conventional understandings of disability as an ailment to be cured. Although much academic discussion has focused on arts-informed research ethics, there has been little consideration of the ethics of conducting “disability” arts-informed research. Our paper will therefore explore what is distinct about disability arts-informed research, as well as the unique ethical issues that arise when working with non-normative bodies.