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 go out into the world of work and life. It is unclear, however, how and whether policy and practice have been shaped by this enterprise.4 After 20 years of developing interdisciplinary critical disability studies, we need now to establish a more direct relationship between a humanities- and social sciences-based disability studies and the work of policymaking and practice. Even though disability rights [End Page 324] legislation and the changes in attitudes and opportunities it has made available for people with disabilities have helped us both become and understand ourselves as political subjects, entering into disability and living as people with disabilities are still largely a medicalized affair. Indeed, all subjects in modern, liberal, technologized, and consumerist social orders are medical subjects—or perhaps more precisely medical consumers. Access to healthcare, medical treatment, and an environment that sustains our biological selves is a fundamental right in liberal democracies. Medicine, like all other institutions in modern capitalistic liberal orders, has become an industry. I do not mean this as some simplified condemnation of what has been called in disability studies "the medical model." Rather, my claim is that all of us—including people with the particularities we think of as disabilities—are overdetermined in our medical subjectivity. Medical science understands us and treats us all according to its logic and practices. This is the appropriate role for medical science. What critical disability studies can do is enlarge our shared understanding of what it means to live with disabilities and be counted as disabled. To do this, the insights and knowledge of critical disability studies need to be applied—to be brought into—medical science as a knowledge base and to its practitioners.
My proposition here, then, is that the field of bioethics is an appropriate arena of knowledge building and practice into which critical disability studies can be brought to bear. I offer here a speculative proposal for developing a practice I call disability cultural competence that can be developed as a component of the emergent field of disability bioethics. In other words, I explore how and why interdisciplinary critical disability studies can be applied to both the knowledge and practice of biomedicine and healthcare as disability cultural competence.
I emphasize the speculative aspect and limitations of my proposition here, offering this as a first step in considering what I understand as a knowledge translation project through which the interpretive knowledge-making tools of critical disability studies—hermeneutics, rhetoric, representational analysis, narrative analysis, historical narrative and recuperation, critical theory, meaning-making structures, sociocultural practices and products across time and geographies, and moral questions—can serve as an opportunity to actually shape policy and practice through the field of bioethics. [End Page 325]
A BRIEF REVIEW OF DISABILITY BIOETHICS
Before I elaborate and suggestively offer the term disability cultural competence, I need to review the term disability bioethics, a larger concept within which disability cultural competence can be placed. By briefly reviewing the history and purposes of bioethics as a recent interdisciplinary academic field of practice, I hope to show why bioethics as an applied field is an appropriate discourse through which to engage the questions, insights, and knowledge offered by critical disability studies. While much bioethics work focuses on disability, not very much of it names itself explicitly as disability bioethics. Part of what I call for here is to claim the term disability bioethics as an enterprise in deep conversation with interdisciplinary critical disability studies as it is practiced in the humanities and social sciences. Articulating a named disability bioethics can signal connections between critical disability studies in educational environments and the applied fields of healthcare, medical research and education, biomedical policy, or commercial biomedicine in general.
Bioethics is generally defined broadly as "the study of ethical, social, and legal issues that arise in biomedicine and biomedical research" (National Institutes of Health 2016). Different definitional sources name varying subfields such as medical, animal, environmental, and public health ethics, all of which suggest the applied aspect of bioethics. Other lists of bioethics subfields organize the field by theoretical approach to include feminist bioethics, virtue ethics, deontological approaches, utilitarianism, principlism, and practical bioethics. Some definitions emphasize the theoretical while others highlight the applied aspects. The Center for Ethics and Humanities in the Life Sciences, for example, stresses practice by saying that bioethics "is an activity; it is a shared, reflective examination of ethical issues in health care, health science, and health policy." It goes on to claim that bioethics "has brought about significant changes in standards for the treatment of the sick and for the conduct of research. Every health care professional now understands that patients have a right to know what is being done to them, and to refuse. Every researcher now understands that participants in their studies have the same rights, and review boards to evaluate proposed research on those grounds are almost universal" (Michigan State University Center for Ethics and Humanities in the Life Sciences 2016).
Explications of bioethics and of disability abound in the literature, but seldom are the two words joined to conceptualize what a disability bioethics might be. The Stanford Encyclopedia of Philosophy, for example, [End Page 326] has no entry for disability bioethics, although several entries relate both terms. The entry on "feminist bioethics" discusses disability, care ethics, and reproductive issues. An entry titled "Disability: Definitions, Models, Experience" is typical of many definitions of disability. The entry begins with the early World Health Organization distinction between disability and impairment; outlines definitions of disability in various equality legislation; reviews the often polarized models of disability that social science has offered, such as the medical, social, and the more recent human variation model; and elaborates phenomenological understandings, stigma theory, social constructionist interpretation, and epistemic or moral consideration of disability (Wasserman et al. 2016). Such a review is predictable and useful, and can be found in many other accounts of disability in social and political contexts. The entry, along with many other similar ones, does the important and well-established work of all disability studies to de-medicalize disability as a concept, a material condition, and a social identity. It gestures as well in a less well-worn direction by emphasizing what it calls "The Place of Disability Experience in Bioethics and Public Policy." Such a focus on embodiment, materiality, and identity is relatively new in that it moves away from the abstraction of social constructivism and into the strong particularity afforded by explication tools such as standpoint theory. As with many definitions of disability, a social science rather than humanities disciplinary perspective dominates, even though a number of philosophers are included. This comes from the disciplinary history of disability studies growing out of social constructivist theory in sociology that shifts both the meaning and material significance from medicalized bodies into social relations.5
My own definition of disability begins in political definitions of disability and extends into sociocultural definitions. Disability identity in modern liberal states emerged during the broader civil rights era and continues today. It has been formulated in legislation, codes, and boundary-setting definitions such as the Architectural Barriers Act of 1968, the Americans with Disabilities Act of 1990 and 2009, the United Nations Treaty on the Rights of People with Disabilities, and the World Health Organization 1976 definitions. All of these articulations of disability draw a distinction between the anatomical and the social in order to mandate inclusion and protect against discrimination of people who live under the identity of disabled. These understandings of disability necessarily delineate disability in terms of impairment, restriction, function, abnormality, and exclusions. The very word disability denotes a lack of capability and also names a [End Page 327] group identity constituted through the civil and human rights legislation and codes that now frames our primary understanding of what it means to be a citizen in modern democratic nation–states. Thus, what counts as a disability ranges across a broad range of physical, motor, mental, sensory, behavioral, medical, and appearance conditions that inform function and participation and are understood as pathology or inferiority. In this sense, disability functions in antidiscrimination legislation similarly to both femaleness and disadvantaged racial identities.
A sociocultural perspective keeps the politicized term disability but draws on phenomenological and constructivist understandings of identity, materiality, and being. What we think of as disability begins in human variation and the inherent dynamism of enfleshment. Because the human body is made from flesh, its movement through time and space in the process we call life constantly transforms us. So even though human development follows a genetic script, the human variations we think of as disability emerge as we develop within a standard script of human form, function, behavior, or perception medical science calls "normal." What we think of as disability is the transformation of flesh as it encounters world, as our body's response to its environment. This call and response between flesh and world makes disability. The discrepancy between body and world, between that which is expected and that which is, produces disability as a way of being in an environment. So disability is certainly an index of capability in context but it is also a witness to our inherent receptivity to being shaped by the singular journey through the world that we call our life. Although our modern collective cultural consciousness denies vulnerability, contingency, and mortality, disability insists that our bodies are dynamic. We evolve into disability. Our bodies need care and assistance to live. Disability is the essential characteristic of being human.6
Even though the terms disability and bioethics rest uneasily with one another in a wide range of definitions of both terms, two important books do join the words disability and bioethics fruitfully. Drawing from the logic of equal rights, law professor Alicia Ouellette offers in Bioethics and Disability what she calls a "disability-conscious bioethics" drawn from the principles of the United Nations Convention of Rights of Persons with Disabilities (2011). These "less-attended principles" of equal rights implements generally are: non-discrimination; full and effective participation of people with disabilities in society; respect for difference; and accessibility. To emphasize the quality and participation for people with disabilities suggests a socially conscious disability bioethics [End Page 328] that attends to what Valerie Fletcher, Director of the Institute for Human Centered Design, calls "social sustainability" (2012).
In Disability Bioethics, the scientist and bioethicist Jackie Leach Scully argues persuasively that a distinctive moral knowledge can arise from the experience of living in a disabled body (2008). Scully refers to what psychologists call "embodied cognition" to suggest that people draw on their bodily experiences not only to think and know but also to construct our social reality.7 In other words, our bodily form, function, comportment, perceptual apprehension, and way of mind shape how we understand our world. In this, Scully follows feminist theorists like Patricia Hill Collins to propose that the material experience of navigating a world built for the majority, while living with a minority form of embodiment such as disability, can produce what Collins calls a politicized consciousness and what Scully calls moral knowledge. I would call such disability epistemology an epiphany on the part of people with disabilities that we may not be inherently inferior but rather simply living in a world not built for us to live in. Disabled bodies, as Scully explains it, produce "experiential gestalts," or ways-of-knowing shaped by embodiment that are distinctive from the ways of knowing that the nondisabled body develops as it interacts with a world built to accommodate it. This "thinking through the variant body," as Scully calls it, can be a resource for moral understandings.
Ouellette and Scully thus provide useful theoretical scaffolding for defining disability bioethics. Drawing from their books, I will bring forward two fundamental theoretical premises from which to elaborate disability bioethics: Ouellette's "disability principlism" and Scully's "disability epistemology." These theoretical concepts underpin the applied concept of a disability bioethics in action I intend to offer here.
The emphasis on what bioethics does in the world—its impact—arises in part from the origin of bioethics as an institutional enterprise. Bioethics is generally understood to have begun as a response to the medical and scientific immorality of the Holocaust. Medical and scientific practice and practitioners repeatedly commit moral errors, often egregiously harming people in their efforts to treat and create new knowledge. But the widespread, state sponsored aspects of the Holocaust's unethical scientific and medical procedures and experiments goes beyond individual or even single institution unethical practice, standing as exceptional and suggesting the need for communal and state responsibility in monitoring unethical medicine and science. Structural implements from authoritative organizations that provided ethical guidelines emerged, such as the [End Page 329] Nuremberg Code of 1947, the Declaration of Helsinki in 1964, and the Belmont Report of 1979, which responded to the Tuskegee Syphilis Study. In this bioethics origin story, the focus of unethical practice seems to be the scientific experiments carried out by Nazi medicine on individual prisoner patients rather than the larger enterprise of mass murder through eugenic euthanasia of groups understood as socially inferior. A specific disability bioethics can amend that narrative by following, as I do, the tradition of several historians of the Holocaust—such as Henry Friedlander, Michael Burleigh, and Robert Proctor—who link mass gassing with medical treatment, understanding the relationship between social judgment, political policy, and what might be called eugenic medicine—the use of life-ending procedures based on judgments of individual or group worth. Disability bioethics understands that Nazi medicine and Nazi social and political policy merged traditional disability and illness categories with ethnic categories, using extreme eugenic measures of extermination to address what the Nazi regime framed as social otherness and biological inferiority.8
Disability bioethics, as I define it here then, follows the framing of disability in Ouellette's "disability principlism" and Scully's "disability epistemology."9 The appropriate goal, I assert, of disability bioethics is to strengthen the cultural, political, institutional, and material environment in which people with disabilities can most effectively flourish. The principle of democratic equality and inclusion that seeks to integrate people with disabilities into the civic world by creating an accessible, barrier-free material environment thus informs disability bioethics. Disability bioethics frames disability as valued social diversity and supports the civil and human rights-based understanding of disability encoded in legislation such as the Americans with Disabilities Act of 1990 and 2009 and broader initiatives such as the United Nations Treaty on the Rights of People with Disabilities, which aim to integrate people with disabilities as full citizens. This definition of disability bioethics moves both disability and bioethics out of a primarily medical or healthcare context to expand the domain of disability bioethics into material environments, civic institutions, cultural structures, and interpersonal interactions. The disability bioethics I am defining here is theoretical and descriptive. To put theory into practice, however, requires implementation. The implement I offer here to operationalize disability bioethics is, as I suggested above, disability cultural competence. [End Page 330]
WHAT IS DISABILITY CULTURAL COMPETENCE?
Disability cultural competence expands the scope and content in rehabilitation programs, clinical treatment, medical humanities, and disability services as we know them. It supports my disability bioethics aim of strengthening the cultural, political, and institutional climate in which people with disabilities can most effectively flourish as they are. Disability cultural competence is a form of what Jonathan Metzl and Helena Hansen call "structural competency" in that it focuses attention on how social and cultural structures influence health outcomes and shape personhood at levels above individual interactions (2014). Informed by Ouellette's "disability principlism" and Scully's "disability epistemology," disability cultural competence goes beyond sensitivity to language and adjustments in activities of daily living; it is developing competencies for using the world effectively, maintaining our dignity, exercising self determination, cultivating resilience, recognizing and requesting accommodations, using accessible technology, finding community, maintaining successful relationships—all as persons living with disabilities. Thus, disability cultural competence is for people with disabilities and about living with a disability at the same time. It brings disability culture to people currently identified as disabled and their families and caregivers as well as people who may in the future identify as disabled. With its competencies grounded in the disability principles of nondiscrimination, full and effective participation of people with disabilities in society, respect for difference, accessibility, moral knowledge, and disability epistemology, disability cultural competence extends beyond the usually understood contexts of healthcare environments to include social institutions and structures in which people with disabilities act and are acted upon, such as the workplace, marketplace, domestic spaces, public spaces, and cultural spaces.
In contrast to my concept of disability cultural competence here, the sparse literature on disability cultural competence mostly embraces the deficit model that predominates in bioethics and health care, thus reflecting a thin understanding of disability culture and disability equity.10 What is needed, then, is to implement a robust disability bioethics that would translate the concept of conserving disability into a capacious yet specific set of principles, practices, policies, and competencies that can affect biomedical decision-making and life decision-making by people with disabilities. This applied disability bioethics would produce disability cultural competence for all.11 [End Page 331]
Rebecca Garden and others have suggested that the concept of cultural competence implies arrogance on the part of healthcare workers—particularly doctors—because it is based on the premise that information and training can provide mastery and effective relational skills. Garden has argued for the concept of cultural humility as the appropriate affect of an informational approach that healthcare workers might use in treating patients. In the case of disability as experience, social status, and cultural group, competence rather than humility is the goal. The difference between disability cultural competence and cultural humility is that no firm border exists between the healthcare worker attaining certain competencies in disability and the immediate patient in the social and medical category of disability. The goal of disability cultural competence would be to build an affect of pride and positive identity in people experiencing disability and in patients in waiting. Humility is an antidote to arrogance, overconfidence, and privilege. Yet the competencies of pride, confidence, and status development are the social capital that disability status often attenuates social capital that disability status often attenuates; what people with disabilities need is not humility, but awareness of the tools for flourishing and high quality of life that they can access. This is what disability cultural competence provides.12
WHY WE NEED DISABILITY CULTURAL COMPETENCE AS A PRACTICE OF DISABILITY BIOETHICS
My premise here is that we need a way to apply the knowledge of interdisciplinary critical disability studies to the world of policy and practice and the larger arena of public opinion. Underpinning this premise is the simple truth that our shared cultural understandings of the ways of being in the world that we consider disability are overwhelmingly negative.
One fundamental premise supporting the need for disability cultural competence is what I call our shared disability illiteracy. By this I mean that most people don't know how to talk about disability or how to be disabled. Yet disability is fundamental to being human. The human lifecycle and our encounters with the environment as we move through life transform our bodies and minds in ways we think of as disabilities. The business of medicine is making and unmaking people with disabilities. So the human variations we think of as disabilities are a part of every family and will enter into every life sooner or later. Indeed, people with disabilities are the largest minority group in the U.S. and a growing constituency as the American population ages and new disability categories such as neurodiversity, psychiatric disabilities, and learning disabilities emerge and grow. [End Page 332]
In spite of this reality, Americans remain unprepared for disability. We get little information about living with disabilities and few opportunities to practice being disabled. But more important, what we learn about life with a disability is relentlessly grim. Medicine and health care focus on normalizing us and eliminating disability. But the limitation of medicine's view of disability is that it cannot provide a context outside of medical treatment about living with disabilities. All people need to learn how to be disabled—how to achieve well being and good life quality as disabled people. For us to live effectively in a world not yet fully built for disabled people, our health care organizations as well as all of the institutional structures in which we participate need to develop a robust disability cultural competence.
DEVELOPING NONPREJUDICIAL LANGUAGE ABOUT DISABILITY
A crucial element of disability cultural competence is proposing language and ways of talking about disability that are accurate yet nonprejudicial. Part of my own work has been to develop a vocabulary about disability that may seem circuitous but is in fact true about the experience and the materiality of disability. The more academic way of saying this is that I have contributed to explicating the cultural work of language and renarrating the embodied variations we think of as disabilities. The available conceptual vocabulary of disability is overwhelmingly negative, with few incentives to take it up as one's own. The words "disability" and "disabled," particularly in healthcare settings, communicate stigma but little of the social justice or human rights reframing of the Americans with Disabilities Act or the pride movement it empowered. Most all of us sense that the old way of talking about disability as a curse, tragedy, misfortune, or individual failing is no longer appropriate in our post-disability rights era but we are unsure about what more progressive, less impolite, language to use. Because of this, we are often reluctant to recognize our fellow citizens as disabled people, and often even more reluctant to acknowledge our own experience or status as people with disabilities.
Another aspect of disability cultural competence is the history of the way we talk about disability. Traditional societies with fixed social orders relegate disabled people to sacred or profane categories, the cursed or blessed, the beggars or oracles, but always the outsiders. The human variations we think of as disabilities have always been an occasion for interpretation, signs of an unsettling contingency, or affirmations of an inscrutable design. The human quest for causality evolved from [End Page 333] supernatural to scientific explanations of disability as the modern world emerged. Medicine generally releases the disabled from moral blame but imposes a failure, not of grace, but of normalcy. While the reigning understanding of disability is still medical abnormality, this system has been soundly challenged by the social justice framework that interprets people with disabilities as a group that has historically been denied rights and equal access to the obligations and privileges of citizenship. The framework of political rights has only begun to overtake the medical language of disability as the laws and their effects over the last 30 years or so have transformed our legal, built, and social environment.
A SUGGESTIVE PLAN FOR IMPLEMENTING DISABILITY CULTURAL COMPETENCE
Disability cultural competence, as I offer it, is the promotion and development of bioethical, cultural, technological, and legal supports for people living with disabilities as they are. Its primary aim is to identify disability cultural competencies in disability culture, history, technology, and law, along with the tools needed to develop those competencies in order to augment the medical and rehabilitation environments that now address disability. This disability cultural competence for all would begin in healthcare environments, where the concept of cultural competence seems now most fully developed, but it would extend into workplace, commercial, government, cultural, and private organizations and structures as well. It should be a part of leadership training and workplace development. In other words, disability cultural competence is a skill set or a toolkit everyone will need to navigate life and to implement the promises and obligations of egalitarian democratic societies.
To operationalize disability cultural competence requires translating disability theory into usable disability bioethics by identifying competencies and developing tools to foster competencies and evaluate success. It also requires identifying institutional settings and audiences appropriate to disability cultural competence training and evaluation. This involves expanding the reach of disability bioethics beyond academic environments to a wide and diverse array of audiences, civic institutions, and corporate organizations and then tailoring disability cultural competence to organizations' aims, products, and operations where it is implemented.
The tools of disability cultural competence in healthcare training environments would be curricula, training, presentations, expert patients, certification, speakers, exhibits, media products. Primary leadership in [End Page 334] disability cultural competence development and implementation would come from expert communities in disability bioethics and from subject experts in disability culture. Leaders and tool developers would be people with a high degree of disability cultural proficiency. A disability cultural competence initiative would produce research, policy papers, events, education, curation, and support for disability cultural competence implementation. Addressing an implementation plan in detail is beyond the scope of this paper or my expertise. I can nonetheless address here in more detail the elements of disability cultural competence.
Disability cultural competence involves five interconnected elements: 1) biomedical decision-making, 2) disability culture and history, 3) accessible technology and design, 4) disability legislation and social justice, and 5) disability cultural competence research. Biomedical decision-making includes practices, policies, laws, education, and attitudes in relation to disability. Crucial to disability cultural competence is awareness about, support for, development of, and promotion of disability history, culture, material culture, and arts as cultural competence. User-based design, development, and promotion of accessible technology assure high quality of life for people with disabilities. We need to know our legal rights, obligations, and protections due to us when we identify as people with disabilities.
Moreover, patients—which includes all of us potentially—need to develop disability cultural competence as well. Unlike other cultural or ethnic groups for which health care providers learn cultural competence, disability identity and culture are foreign territories for most patients and health care institutions. Disability is an experience, identity, and culture that people generally enter unexpectedly and unwillingly. Entering into disability requires more than medical treatment and rehabilitation; becoming disabled requires adjusting to new functioning, appearance, and social status. It requires learning how to flourish as a person with disabilities, not just living as a disabled person trying to become nondisabled. Awareness about disability rights and identity, such as the ADA and GINA, help people understand the rights, protections, and benefits of identifying as disabled. Research on and promotion of quality of life, dignity maintenance, access, self-determination, and cultural proficiency are necessary for people with disabilities.
The aspirational constituency, then, for disability cultural competence education extends from health care providers to patients and to all people. This is what distinguishes disability cultural competence from [End Page 335] other cultural competence constituencies—it is capacious in both content and user base. All people are either active patients or patients in waiting. Developing disability cultural competence will prepare all of us to navigate that status and experience effectively.
Rosemarie Garland-Thomson is Professor of English and bioethics at Emory University, where her fields of study are disability studies, American literature and culture, bioethics, and feminist theory. Her work develops the field of critical disability studies in the health humanities, broadly understood, to bring forward disability access, inclusion, and identity to communities inside and outside of the academy. She is the author of Staring: How We Look and several other books. Her current book project is Habitable Worlds: Toward a Disability Bioethics.
3. A review of key canonical works of critical interdisciplinary disability studies from the 1980s to 2010s follows: Eiesland (1994); Davis (1996); Wendell (1996); Garland-Thomson (1997); Linton (1998); Kleege (1999); Mitchell and Snyder (2000); Padden and Humphries (2005); McRuer (2006); Davidson (2008); Siebers (2008); Garland-Thomson (2009); Schweik (2009); Carlson (2010); Straus (2011); Hall (2011); Price (2011); Chen (2012); Brune and Wilson (2013); Kafer (2013); Baynton (2016); Hamraie (2017).
4. Disability law is an exception because the field influences policy more directly than the humanities or social sciences. Also some studies of attitudes in the field of psychology where people are surveyed and data is collected might reveal the results of disability integration and the change of attitudes that critical disability studies aims to effect.
5. Most of the entries on disability in the Stanford Encyclopedia of Philosophy appeared to be written, or at least copyrighted by David Wasserman with the late Adrienne Asch, Jeffrey Blustein, and Daniel Putnam. The feminist perspectives on bioethics entry, however, is by Anne Donchin and Jackie Scully. See Donchin and Scully (2015).
7. I would characterize what Scully does here as using phenomenology to explore the relationship between ontology and epistemology. Scully stresses the idea of moral knowledge, a crucial term in bioethics.
9. Another important theoretical position on disability bioethics comes from Michael Sandel in his book The Case against Perfection (2007), as I have argued elsewhere. I have not included this work in detail here because he does not use the words "disability bioethics" intentionally in the way that Scully and Oullette do. Nonetheless, his argument that disabled experience [End Page 336] has value for all humans and his questioning of the ethical status of enhancement practices is very much in line with what I am suggesting that disability bioethics can do.
10. In a working paper called "Disability Cultural Competence in the Medical Profession," Mary Crossley argues for educating medical students and doctors in disability cultural competence and about the disability experience (2015). She proposes that such cultural competence can lead to better services and reduce health care disparities. She also proposes that such education will lead to more inclusion of people with disabilities as healthcare workers. I have yet to find any study to provide evidence to support this hypothesis, perhaps because so little disability cultural competence training exists in medical education.
K. L. Robey et al. (2013) contend that 1) cultural competency provides a useful conceptual framework for teaching disability-related content to health professions students; 2) educational experiences can be structured to reflect the sociocultural complexity of the 'disability culture'; 3) desired competencies associated with culture can be defined with regard to professionals' approach to patients with disabilities. Although they question whether there is a disability culture, the idea of identifying competencies is a productive one that I will take up.