Disabled knowledge will never be actualized under their interp because it fails to recognize the existence of a gap now

One theme I return to within disability theory is that knowing is a communal project. This is an important corrective in the face of pressure to represent “the disability community.” (Sidenote: there are many diverse disability communities, and there are likely to be disagreements on some issues even within a single disability community.) We need affirmation from others in the face of dominant narratives that fail to accurately portray our experiences, and we need to learn from others when our experiences and understandings differ. We all have limitations in what we notice and how we make sense of the world.

There are a number of different concepts that have been developed to refer to knowledge accumulated within disability communities. I will mention a few of the more recent developments here. Leah Lakshmi Piepzna-Samarasinha, a self-described sick and disabled femme of color, notes that the terms “crip skills” and “crip science” are used by members of these communities to refer to ways that disabled people figure out how to navigate environments that have been designed largely around the presumption of typical bodyminds and knowledge grounded in lived experiences of disabled people.

Disability theorist Rosemarie Garland-Thomson suggests that we — disabled and nondisabled people alike — should develop “disability competence” with the following five components: biomedical decision-making, disability culture and history, accessible technology and design, disability legislation and social justice, and disability cultural competence research. Most of us do not receive any kind of formal education about disability, much less one informed by a critical disability studies perspective. Recognizing this personal and societal knowledge gap is an important starting point for being a participant in the communal project of knowing about disability.

Returning to the question of epistemological oppression, your work brings critical attention to the gaps that exist within the field of biomedical ethics in relationship to its failure to understand disabled people. When I think about biomedical ethics, I tend to think about euthanasia or end-of-life care, etc., but not deep and probing issues regarding disability studies. Of course, that might be a function of my ignorance. So, what problematic assumptions do you think undergird biomedical ethics vis-à-vis disability studies? Also, in what way do your critical insights regarding this important issue help those who teach courses in biomedical ethics, and also help those who are health care professionals?

When I started examining bioethics textbooks, I realized that beneath the disagreements on a number of issues that disproportionately impact disabled people (e.g., selective abortion and prenatal genetic diagnosis, organ transplantation policies and other forms of health care rationing, debates about health care policy, physician aid-in-dying, euthanasia), there tended to be shared assumptions about disability. Specifically, I noted that many bioethicists assume that the medical model of disability provides a sufficient way of conceptualizing “disability,” that disabled people, on average, automatically have a significantly lower quality of life solely on the basis of their bodyminds, and that genetic determinism and reductionism provide adequate scientific accounts for making sense of genetic information. All of these assumptions are either questionable or false, but collectively, they contribute to the devaluation of disabled people and deliberations on moral issues that fail to take into consideration the experiences of the very people whose well-being and lives are at stake. Relatedly, the bioethics literature tends to treat disabled people as objects of knowledge rather than subjects.