Disability Bioethics: From Theory to Practice

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Disability Bioethics: From Theory to Practice
Rosemarie Garland-Thomson
Kennedy Institute of Ethics Journal, Volume 27, Number 2, June 2017, pp.
323-339 (Article)
Published by Johns Hopkins University Press
DOI:
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https://doi.org/10.1353/ken.2017.0020
https://muse.jhu.edu/article/665110

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Kennedy Institute of Ethics Journal Vol. 27, No. 2, 323–339 © 2017 by Johns Hopkins University Press
Rosemarie Garland-Thomson
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 stud-
ies, 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 citi-
zenship. 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 stud-
ies, 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 distinc-
tive 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 institu-

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tions, 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 previ-
ously 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

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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.

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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,

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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

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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

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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

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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.

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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

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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.

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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 re-
narrating 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

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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

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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

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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.
NOTES
1. For histories of the U.S. disability rights movement and disability rights
legislation, see Scotch (1984) and Shapiro (1993).
2. See Linton (1998) for an account of the development of critical disability
studies.
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).
6. A version of this definition of disability can be found in Garland-Thomson
(2012).
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.
8. See Friedlander (1995); Burleigh (1997); Proctor (1988); and also Kevles
(1985).
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

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has value for all humans and his questioning of the ethical status of enhance-
ment 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 competen-
cies associated with culture can be defined with regard to professionals’ ap-
proach 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.
11. See my article on conserving disability for explication of that concept and
the rationale for it (Garland-Thomson 2012).
12. For explications of cultural humility see Tervalon and Murray-Garcia (1998)
and Garden (forthcoming).
REFERENCES
Baynton, Douglas C. 2016. Defectives in the Land: Disability and Immigration
in the Age of Eugenics. Chicago: University of Chicago Press.
Brune, Jeffrey A., and Daniel J. Wilson, eds. 2013. Disability and Passing: Blur-
ring the Lines of Identity. Philadelphia: Temple University Press.
Burleigh, Michael. 1997. Ethics and Extermination: Reflections on Nazi Genocide.
Cambridge, UK: Cambridge University Press.
Carlson, Licia. 2010. The Faces of Intellectual Disability: Philosophical Reflec-
tions. Bloomington, IN: Indiana University Press.
Chen, Mel Y. 2012. Animacies: Biopolitics, Racial Mattering, and Queer Affect.
Durham, NC: Duke University Press.
Crossley, Mary. 2015. “Disability Cultural Competence in the Medical Profes-
sion.” Legal Studies Research Paper Series Working Paper No. 2015–30,
August 24, University of Pittsburgh School of Law. http://ssrn.com/ab-
stract=2650092

KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2017
[ 338 ]
Davidson, Michael. 2008. Concerto for Left Hand: Disability and the Defamiliar
Body. Ann Arbor: University of Michigan Press.
Davis, Lennard J. 1996. Enforcing Normalcy: Disability, Deafness, and the Body.
London: Verso.
Donchin, Anne, and Jackie Scully. 2015. “Feminist Bioethics.” The Stanford
Encyclopedia of Philosophy. http://plato.stanford.edu/archives/win2015/
entries/feminist-bioethics/
Eiesland, Nancy. 1994. The Disabled God: Toward a Liberatory Theology of
Disability. Nashville, TN: Abingdon.
Fletcher, Valerie. 2012. “Socially Sustainable Design: Making the Case for Design
that Includes.” Architecture Boston Expo, Boston, MA, November 15. http://
www.humancentereddesign.org/sites/default/files/ABX2012/MakingtheCase-
forSociallySustainableDesign11-15-12.pdf
Friedlander, Henry. 1995. Origins of Nazi Genocide from Euthanasia to the Final
Solution. Chapel Hill: The University of North Carolina Press.
Garden, Rebecca. “Who Is Teaching Whom? Deaf and Disability Approaches to
the Health Humanities.” Forthcoming in Teaching Health Humanities, edited
by O. Banner, N. Carlin, and T. Cole. Oxford University Press.
Garland-Thomson, Rosemarie. 1997. Extraordinary Bodies: Figuring Physical
Disability in American Culture and Literature. New York: Columbia Uni-
versity Press.
———. 2009. Staring: How We Look. New York: Oxford University Press.
———. 2012. “The Case for Conserving Disability.” Journal of Bioethical In-
quiry 9 (3): 339–55.
Hall, Kim Q., ed. 2011. Feminist Disability Studies. Bloomington, IN: Indiana
University Press.
Hamraie, Aimi. 2017. Building Access: Universal Design and the Politics of Dis-
ability. Minneapolis: University of Minnesota Press.
Kafer, Alison. 2013. Feminist, Queer, Crip. Bloomington, IN: Indiana University
Press.
Kevles, Daniel. 1985. In the Name of Eugenics: Genetics and the Uses of Human
Heredity. New York: Knopf.
Kleege, Georgina. 1999. Sight Unseen. New Haven, CT: Yale University Press.
Linton, Simi. 1998. Claiming Disability: Knowledge and Identity. New York:
New York University Press.
McRuer, Robert. 2006. Crip Theory: Cultural Signs of Queerness and Disability.
New York: New York University Press.
Metzl, Jonathan M., and Helena Hansen. 2014. “Structural Competency: Theoriz-
ing a New Medical Engagement with Stigma and Inequality.” Social Science
and Medicine 103: 126–33.

GARLAND-THOMSON • DISABILITY BIOETHICS
[ 339 ]
Michigan State University Center for Ethics and Humanities in the Life Sciences.
2016. “What is Bioethics?” Accessed October 21, 2016. http://www.bioeth-
ics.msu.edu/what-is-bioethics
Mitchell, David T., and Sharon L. Snyder. 2000. Narrative Prosthesis: Disability
and the Dependencies of Discourse. Ann Arbor: University of Michigan Press.
National Institutes of Health. 2016. “What Is Bioethics?” National Institute
of Environmental Health Sciences. https://www.niehs.nih.gov/research/re-
sources/bioethics/what_is_bioethics/index.cfm
Ouellette, Alicia. 2011. Bioethics and Disability: Toward a Disability-Conscious
Bioethics. Cambridge, UK: Cambridge University Press.
Padden, Carol, and Tom Humphries, editors. 2005. Inside Deaf Culture. Cam-
bridge, MA: Harvard University Press.
Price, Margaret. 2011. Mad at School: Rhetorics of Mental Disability and Aca-
demic Life. Ann Arbor, MI: University of Michigan Press.
Proctor, Robert. 1988. Racial Hygiene: Medicine Under the Nazis. Cambridge,
MA: Harvard University Press.
Robey, Kenneth L., Paula Minihan, Linda Long-Bellil, Joane Earl Hahn, John
Rice, and Gary Eddey. 2013. “Teaching Health Care Students about Disability
Within a Cultural Competency Context.” Disability and Health Journal 6:
271–79.
Sandel, Michael. 2007. The Case against Perfection. Cambridge, MA: Belknap
Press of Harvard University Press.
Schweik, Susan. 2009. The Ugly Laws: Disability in Public. New York: New
York University Press.
Scotch, R. 1984. From Good Will to Civil Rights: Transforming Federal Disability
Policy. Philadelphia: Temple University Press.
Scully, Jackie Leach. 2008, Disability Bioethics: Moral Bodies, Moral Difference.
Lanham: Rowman and Littlefield Publishers.
Siebers, Tobin. 2008. Disability Theory. Ann Arbor: University of Michigan Press.
Shapiro, J. 1993. No Pity: People with Disabilities Forging a New Civil Rights
Movement. New York: Times Books and Lennard Davis Enabling Acts.
Straus, Joseph N. 2011. Extraordinary Measures: Disability in Music. New York:
Oxford University Press.
Tervalon, Melanie, and Jann Murray-Garcia. 1998. Journal of Health Care for
the Poor and Underserved 9 (2): 117–25.
Wasserman, David, Adrienne Asch, Jeffrey Blustein, and Daniel Putnam. 2016.
“Disability: Definitions, Models, Experience.” The Stanford Encyclopedia of
Philosophy. https://plato.stanford.edu/archives/sum2016/entries/disability/
Wendell, Susan. 1996. Rejected Bodies: Feminist Philosophical Reflections on
Disability. New York: Routledge.