- Disability Bioethics:From Theory to Practice
What has come to be called critical disability studies is an emergent field of academic research, teaching, theory building, public scholarship, and something I'll call "educational advocacy." The critical part of critical disability studies suggests its alignment with areas of intellectual inquiry, sometimes awkwardly called identity studies, rooted in the political and social transformations of the mid-20th century brought forward by the broad civil and human rights movement. These movements pressed both the law and the social order toward an expansion of rights for people previously marginalized or excluded from full participation in exercising the obligations and benefits of equal citizenship. The ideas of equality and equal access for all that propelled the broad U.S. civil rights movement led to the legal desegregation of schools in the mid-20th century and changed the composition of the learning environment; with that came changes in what counted as knowledge in educational settings. In other words, when people excluded from the educational environment were included, knowledge about who we are as a community expanded along with that. Beginning, then, in the U.S. in the early 1970s, new knowledge perspectives and bodies of knowledge began to emerge, first perhaps as women's studies, African-American studies, then as critical race theory, feminist theory, queer theory, and more recently, critical disability studies. So while critical disability studies is a sister to women's and gender studies or critical race studies, it is distinctive in several ways. First, it grew out of a civil rights movement in the United States that was stealth in comparison to the women's movement or the black civil rights movement.1 The social justice that the disability rights movement achieved moved forward largely through desegregation laws and policies carried out through changes in the built environment. For people with disabilities to be integrated into the educational system required not just opening previously closed doors, but retrofitting schools with the technologies that people with disabilities needed to be present and to learn. To be integrated into public transportation, cultural institutions, [End Page 323] spaces of citizen practice, and the marketplace required building and rebuilding sidewalks, buses, train cars, voting booths, paths, businesses, restaurants, not only to ramp public and private space but to develop technology—from curb cuts to software, prosthetics, lifts, automated devices, to signage. Indeed all built and designed material aspects of the world we share and use together were transformed so that people with disabilities entered into places and institutions from which we had been excluded not only through discriminatory attitudes but through the very way that we built that shared world. As with all integration initiatives in modern liberal democracies, when excluded populations enter into previously segregated spaces and institutions, everything changes.
The work of critical disability studies, carried out largely as a research- and knowledge-building enterprise in higher education, has been to document that transformation of the social order and communal consciousness through the varied lenses of knowing that are our academic disciplines. The human variations that we call disabilities have always been the target of research and analysis, but until interdisciplinary critical disability studies arose as I have described it above, these ways of being in the world, the people who bear them, and the culture they make have been the objects of narrow focus in medical science and health studies.2 Critical disability studies has in one sense been a corrective to this limited understanding of the enduring human experience of what we think of as disability. By aiming the perspectives and knowledge tools of the humanities and social sciences toward disability in its most pervasive manifestations—from concept to history, data, culture, human experience, narrative, theory, and aesthetic expression—the academic world broadly defined has illuminated disability and in doing so made it new for all of us who have encountered the perspectives and knowledge that is interdisciplinary critical disability studies.3
The tasks and accomplishments of interdisciplinary critical disability studies have been pervasive in the educational environment beyond medical and health sciences and have influenced the attitudes and actions of people introduced to the field as they...