Nothing about us without us: A disability challenge to bioethics

INTRODUCTION Disability theory and disability activism pose a fundamental challenge to bioethics. The rise of disability critique and activism has demonstrated that seemingly self-evident assumptions about disability have always been a silent yet salient feature of bioethics theory and practice in questions relating to life and death, sickness and health, provision of health care services, allocations of resources, and more (Asch 2001). Bioethics and disability have a shared history and common concerns with regard to the authority and the structure of medical knowledge (Amundson and Tresky 2008). However, bioethics has historically endorsed an individual-medical approach to disability that values and prioritizes medical-professional knowledge, but devalues and marginalizes disabled people’s knowledge and experiences (Asch 2001). Even progressive accounts of bioethics tend to adopt an individual-medical approach to disability that views life with a disability as a life of lesser value and a burden on the family and society (Amundson and Tresky 2008). Under this view, disabled people are perceived as incompetent to make decisions for themselves and incapable of participation in public deliberation processes. In response, the disability challenge to bioethics involves not only a new understanding of disability, but also a new place for disabled people in society and in bioethics – as active participants in decision-making processes (Rinck and Calkins 1996; Asch 2001; Dhanda 2006). This new place for disabled people is encapsulated in the disability rights movement’s slogan: nothing about us without us (Charlton 1998). This slogan became internationally renowned and widely used by disabled activists around the globe as it captures the essence of the disability struggle: to be part of society and to take an active role in individual and collective decision-making processes in all aspects of life. However, its meaning as a framework of analysis was not clarified so far. This chapter introduces a reading of this slogan as a call for individual and collective voice and representation in decision-making processes in general, and particularly in decisions of a bioethical nature. It suggests that a nothing about us without us approach entails both an individual dimension that concerns personal decisions regarding one’s own life, and a collective dimension that concerns the involvement of disabled people as a group in all levels of public deliberation, including policymaking, legislative processes, public committees, and statutory committees.