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second edition

Edited by
Maurianne Adams Lee Anne Bell Pat Griffin

I~Taylor & Frands Group
New York london



Ableism, or disability oppression, IS a pervasive system of discrimination and exclu-

sion of people with disabilities. Like racism, sexism, and other forms of oppression,
ableism operates on individual, in~titutional, and cultural levels to privilege tempo-
rarily able-bodied people and dishdvantage people with disabilities. The systemic
nature of this form of oppression is\evidenced by patterns of treatment that discrimi-
nate against people with disabilitifs in such institutions as health care, education,
housing, and employment. This p~enomenon has been described by a variety of
other terms, including handicapis'1' disability discrimination, physicalism, and men-
talism. We prefer the term ableism to define the oppression of people with disabilities

as a social justice issue.

Like other social justice movements, the disability rights movement has raised ques-
tions about language and identity as ineople with disabilities and their allies challenge
terminology and assert their own c(efinitions and identity claims. Terms once used
to refer to people with disabilities iI1the 19th and early 20th centuries such as defec-
tive, deformed, deaf and dumb, insaJe, and idiot have been challenged as oppressive.
More recent terms such as retarded, ~andicapped, and mentally ill, acceptable only a
few years ago, have been largely replaced by terms such as developmentally disabled
and emotionally disabled. More recently, a "people first" movement has emerged that
encourages the use of people with de+Zopmentaz disabilities or people with psychologi-
cal disabilities so as not to define people by a particular physical or mental condition.

* We ask that those who cite this work always\ acknowledge by name all of the authors listed rather than
either only citing the first author or using "et rL" to indicate coauthors. All collaborated on the conceptu-
altzauon, development, and writing of this chapter,
336 Pat Griffin. Madeline L. Peters, Robin M. Smith

Euphemistic terms, such as physically or mentally challenged and differently abled,

despite their good intentions, have also been challenged by disability rights advocates
who believe that they perpetuate ableism by trivializing the experiences of people with
disabilities or minimizing the effects of disability oppression.
Many people with disahilities have redefined the term disabled, claiming it as a
positive descriptor ofa powerful and proud group of people with strengths and abili-
ties, but "disabled" by unnecessary social, economic, and environmental barriers
rather than by physical, psychological, or developmental conditions or impairments.
Others reject the term disabled as a negative label forced on them by professionals who
do not understand their needs or differences. In their view, they are not disabled but
rather obstructed by negative interactions with controlling health and social service
systems. Mental health system survivors, for example, reject psychiatric labels as part
of their fight against forced "treatment" by the mental health system. Activist organiza-
tions such as MindFreedom: United Action for Human Rights in Mental Health (2003;
www.mindfreedom.org) and Lunatic's Liberation Front (2006; http.//walnet.org/llf/)
advocate for awareness of and rights for psychiatric survivors, and share information
on how to counteract the oppression of the psychiatric system, which includes forced
outpatient drug treatment and mandatory mental health screening.
Some disability activists have reclaimed words that were demeaning in earlier
times, such as cripple or gimp, as a way to challenge attitudes and reassert their owner-
ship of the right to name themselves (Fleischer & Zames, 2001; Linton, 2005; Morris,
1991;Shaw, 1994).These differing uses of language reflect the variety of.perspectives
held by people with disabilities and the language used to discuss disabilities.

People targeted by ableism include those with developmental, medical, neurological,
physical, and psychological disabilities. Thewide range of disabilities makes ableism a
complex issue to address. For example, the experiences and needs of people with hear-
ing or visual disabilities differ from those with mobility impairments or people with
cancer, diabetes, or asthma. Some disabilities, like a variety of mobility impairments,
are visible. Others, like learning disabilities or psychiatric disabilities, are not visible.
The common thread that unites the experiences of people with diverse disabilities is
having to contend with a culture that sees disability through fear, pity, or shame and
teaches us to regard disability as a tragedy.
Anyone can become disabled through sickness, aging, accidents, or acts ofviolence
or war, or even due to stresses from the increased pace of life. Thus, disability touches
every one of us personally or through the lives of people about whom we care. For this
reason, we refer to people who do not have disabilities as temporarily able-bodied. Tem-
porarily able-bodied people often perceive people with disabilities to be less than fully
human, unfortunate, or objects of charity. Theyoften channel feelings of sympathyand
pity by giving to charities rather than working to eliminate social and environmen-
tal barriers that limit access for people with disabilities. Such paternalistic attitudes,
beliefs, and actions toward people with disabilities tend to prevent systemic change.

Social and Physical Environment as Disabling

Perspectives on disability are shaped by cultural beliefs about the value of human life,
health, productivity, independence, normality, and beauty. Such beliefs are reflected
through institutional values and environments that are often hostile to people whose
Ableism Curriculum Design 337

abilities fall outside of what is culturally defined as normal. The perspective presented
in this chapter is that people have different kinds of impairments that limit their ability
to function easily in a society where normality is too narrowly defined, and the social
and physical environmental norms are disabling.
When the physical environment is constructed so that only a narrow range of abili-
ties are accommodated, it is disabling for everyone whose abilities fall outside of this
narrow range (Wendell, 1996). For example, a wheelchair user is disabled by buildings
that require entrants to walk up stairs to enter or by bathrooms that are not designed to
accommodate a wheelchair. People with visual or hearing impairments are disabled by
a lack of access to computers or other services designed to accommodate their needs.
People with asthma or environmental sensitivities are disabled by buildings that lack
adequate ventilation systems or have molds in carpets.
The social environment is disabling when people fail to consider the barriers that
their attitudes or the physical environment poses to people with disabilities and when
they view accommodating a broader range of abilities as an unreasonable financial
burden or as extra work. Paradoxically, meeting the needs and wants of people who do
not have disabilities is rarely viewed as an accommodation. For example, most tempo-
rarily able-bodied people expect a wide range of choices in vehicles to purchase-large,
small, and medium-sized cars or trucks with various options for color and accessories.
Yet we have only recently begun to consider the transportation needs of people with
disabilities and to pass laws requiring public transportation to be accessible to a wider
range of abilities. Similarly, teachers who consider accommodating the needs of stu-
dents with learning disabilities as an unreasonable burden or extra work often accept
as integral their responsibilities to prepare different lesson plans for different classes. In
these ways, we choose to create or allow barriers to access for people with disabilities.

Universal Architectural Design

The social and physical environment can be changed to enable people with disabilities
to function successfully. Universal design derives from architectural efforts to design
buildings so that anyone can use them. Universal design features include ramps rather
than steps for building entrances, lever door handles, Braille signage, wider door
entries and hallways, raised electrical outlets, lower light switches, and flashing lights
to call attention to a ringing phone. These and other accessibility features typically add
little or no cost if included in the design stage of building construction.
Those advocating universal design in new homes and apartments also call for a
standard of "visltability," If you don't live there, can you visit? For example, can you
get in the door or enter the bathroom? Proponents of universal design argue that such
accommodations benefit everyone, not just people with disabilities, by eliminating
disabling characteristics of the physical environment (Grayson, 1995). For example,
anyone carrying a heavy box or pulling a large wheeled suitcase benefits from doors
that open automatically, entrance ramps, and elevators.

Universal Instructional Design

Universal instructional design is an adaptation of universal architectural design

applied to the learning environment in schools (Bourke, Strehorn, & Silver, 2000;
Pliner, 2004; Silver, Bourke, & Strehorn, 1998). The core principle is to provide mul-
tiple ways to access curriculum and show understanding and learning [Ouellett, 2000).
Technology, for example, can make reading accessible to students with processing or
338 Pat Griffin, Madeline L. Peters,Robin M. Smith

severe motor disabilities. Such asslstlve technology also helps temporarily able-bodied
students who learn more easily through modes such as listening (tapes, computer-gen-
erated speech) or reading and listening simultaneously. Universal instructional design
for classrooms also includes providing syllabi in alternate formats, making copies of
notes, allowing extra time to complete exams for all students, and using alternative
instructional options, such as illustration, speaking, or drama, to express understand-
ing. As with universal architectural design, adaptations and accommodations for stu-
dents with disabilities can benefit all members of the class, thus insuring that students
who must have the accommodation are not singled out or stigmatized.

Historical Treatment of People with Disabilities

Throughout history, people with disabilities have faced serious and persistent forms of
discrimination, segregation, exclusion, and sometimes genocide (Covey, 1998; Long-
more & Umanski, 2001). They have been viewed variously as menaces to society needing
control, as children to be pitied and cared for, and as objects of charity (Morris, 1996).
In western societies before the 18th century, disability was considered an unchange-
able condition that resulted from sin (Covey, 1998). People with disabilities were left to
beg in the streets or were locked away. Beginning in the 18th century, people with dis-
abilities were viewed as objects of curiosity or deranged monsters who were frequently
displayed to the "normal" public in carnival freak shows or hidden in asylums where they
were subjected to inhumane treatment. With the rise of science, medical doctors began
to identify and classify the genetic deficiencies linked with disability. For example, in
the 1880s and 1890s, "medical imbecility" was attributed to people with mental retar-
dation, as well as to paupers, prostitutes, immigrants, and others struggling to assimi-
late into American society (Longmore & Umanski, 2001). Close links with the eugenics
movement spurred policies to segregate and sterilize people considered to be hopelessly
unredeemable due to their disabilities. Eugenics at its most extreme became the "scien-
tific" rationale for Germany's extermination policies during World War Il in which thou-
sands of people with disabilities were gassed or starved to death (Gallagher, 1995).
Disabled veterans returning from World War II spurred doctors to focus on reha-
bilitation and the development of devices to help them return to work and live produc-
tive lives. This focus on rehabilitation marked a shift in the approach to working with
people with disabilities. However, many continued to be segregated in special schools,
sheltered workplaces, and medical institutions where they were treated as "patients"
who needed supervision and care by others who knew best.
In the 1960s and 1970s, a social movement of people with disabilities began to
emerge. Following the lead of other civil rights and justice movements like the Black
Civil Rights movement, the feminist movement, and the gay rights movement, dis-
abled activists began demanding their civil rights. The passage of Section 504 of the
Rehabilitation Act of 1973 was a turning point. This act stated, "No otherwise quali-
fied person may be discriminated against in any program receiving federal funds." The
definition of disability set forth in the regulations of this act (34 C.ER., 104) included
impairments of major life activities (e.g., walking, seeing, hearing, and intellectual
activity) and included temporarily able-bodied people perceived to be disabled even
if they were not so. The language of Section 504 reflects the language of the Civil Rights
Act of 1964, as does the Americans With Disabilities Act (ADA), a federal law passed
in 1990 that requires public institutions to provide access to people with disabilities.
The ADA asserts the full equality of people with disabilities and opens the door to the
benefits and responsibilities of full participation in society.
Ableism Curriculum Design 339

Contemporary Manifestations of Ableism

Ableism, like all other forms of social injustice, operates on multiple levels. Cultural
beliefs about concepts such as beauty, normality, and independence affect social atti-
tudes about disability and, consequently, how people with disabilities are treated in
society. Institutional policies, beliefs, norms, and practices perpetuate ableism. For
example, institutionalized religious beliefs that disability is punishment for sin or that
disability can be "healed" through faith affect how some religious people respond to
disability. Other major social institutions such as the law, housing, health care, the
family, and government are part of the social web that reinforces ableism and erects
barriers for people with disabilities and their allies.
Individual attitudes and actions are also an important part of how ableism is per-
petuated. Individual paternalistic perspectives of sympathy or pity toward people with
disabilities are part of the matrix of obstacles that help to create and aggravate barriers
they face. Similarly, feelings of fatalism, fear, or dread about the possibility of becom-
ing disabled influence many individuals to respond to disability issues and to people
with disabilities in ways that are disempowering to them.

Disability Rights Movement

Over the last 30-40 years, people with all types of disabilities have organized into an
emerging political movement for disability rights and independent living, both in the
United States and around the world (Charlton, 2000; Shapiro, 1993).People with dis-
abilities who are part of this political movement reject the notion that being disabled
is an inherently negative experience or in any way descriptive of something broken or
abnormal. They see disability as a positive term. Proponents of this perspective take
pride in the differences in their bodies and minds and strive to make others aware of
their experiences and accomplishments. They see themselves as activists in the ongo-
ing struggle against the oppressive social, economic, and environmental forces that
limit opportunities for people with disabilities to achieve their full potential. Such
activists see themselves as "disabled" by the social and environmental structures that
were created without them in mind and that now prevent them from taking their right-
ful place in society. Perhaps most importantly, they recognize the connections and
commonalities among people and strive to work in coalition across a broad range of
disabilities as well as with other oppressed groups.

Intersections of Ableism and Other Oppressions

People with disabilities represent all races, classes, ages, genders, sexual orientations,
and religions, and their experience of ableism is mediated by oppression they experi-
ence through these other identities. For example, because ofracism, children ofAfrican
descent raised in a cultural milieu that values high-energy behaviors are often labeled
as having discipline problems by white, middle-class teachers.for engaging in behav-
iors valued in the child's home and community, but not in school (Franklin, 1992).
Such children may be labeled with attention deficit or emotional disorders. Similarly,
Latino/a children who have not mastered English as a second language may be labeled
learning disabled or developmentally disabled despite laws mandating culturally sen-
sitive testing (Duhaney, 2000).These forms of discrimination have led some scholars to
highlight the necessity ofteachers developing cultural competence or relevance if they
are to be effective in educating children of color (Ladson-Billings, 1994).
340 Pat Griffin. Madeline L. peters. Robin M. Smith

Heterosexism, sexism, and classism also mediate one's experience of disability.

People with disabilities who are gay, lesbian, bisexual, or transgender (GLBT)may
not receive the same access to information and resources as temporarily able-bodied
GLBTpeople in their community. GLBTpeople with disabilities may not have access
to a partner's health insurance coverage if their relationship is not legally recognized.
Women with physical or medical disabilities may be seen as unfit mothers, or as unat-
tractive and asexual. The invisibility of women with disabilities carries over into the
workforce, where they are not hired at the same rate and are not paid as much as men
(Seabrook, 2002).
The interconnection among disability, employment, health care, and classism is
particularly important. The costs of assistive technology that make it possible for peo-
ple with disabilities to participate in many daily activities are prohibitive for poor or
working-class people. Computers and software applications that enable people with
disabilities to be employed, attend school, or socialize with friends are prohibitively
expensive for many people. Although such devices as voice input and output for blind
and mobility-impaired readers to read out loud, and digital hearing aids and cochlear
implants for deaf or hearing-impaired people, are important advancements, these
devices are beyond the financial resources for many people with disabilities ..
For poor and working-class people, it is difficult to meet daily needs without social,
medical, or technical support. People with medical or mobility disabilities find that
expensive medications and appropriate orthopedic or physical therapies are out of
reach for Social Security-based incomes, or insurance companies may make decisions
that affect their ability to live independently. Persons with severe disabilities may have
better access to needed resources when they have the financial resources and insur-
ance needed to buy equipment, hire personal care attendants, or get expensive medi-
cal treatment.

Ableism and Other Social Issues

Ableism has implications for other social issues such as assisted suicide and abortion.
For example, arguments in favor of assisted suicide are complicated by attitudes about
the value or viability of living with a disability. The belief that living with a disabil-
ity is worse than dying consigns healthy people with disabilities to the same status
as those who are terminally ill or living with chronic pain. Severely disabled people
may be pressured to sign "Do Not Resuscitate" (DNR)orders even when in the hospital
for minor procedures. The Human Genome Project-a project to map human genes-
and the debate over euthanasia and end-of-life issues evoke heated debate over who
decides the worth of an individual life. Opponents oflegally assisted suicide argue that
"legalized medical killing is about a deadly double standard for people with severe dis-
abilities, including both conditions that are labeled terminal and those that are not"
("Not Dead Yet,"2006, [1).
Likewise, many disability rights advocates oppose abortion because of their objec-
tion to aborting fetuses with disabilities. Theyargue that pro-choice advocates have not
considered the implications of their support for abortion for people with disabilities.
Social policy on serious and controversial issues like euthanasia and abortion rights
becomes even more complicated when dominant attitudes toward disability color the
perspective of decision makers such as doctors who have power over others' lives.
School funding is another difficult area of public policy affected by ableism. The
interests of temporarily able-bodied students are often pitted against the interests of
students with disabilities in battles over dwindling school resources when programs
Ableism Curriculum Design 341

.. to meet the needs of students with disabilities are considered an "extra" expense that
places an unreasonable burden on taxpayers.
Finally, some groups of people defined by society as having disabilities do not see
themselves as disabled at all. For example, many Deaf people see themselves as a cul-
tural group separate from "the hearing" group. They take pride in and wish to preserve
their own language and patterns of community. They capitalize the "D" in Deaf to sig-
nify their belief that the Deaf are a cultural group, not a disability. Such differing defini-
tions and experiences complicate teaching about ableism and must be acknowledged in
any comprehensive curriculum to address the oppression of people with disabilities.

International Perspectives on Disability

There are an estimated 600 million people with disabilities in the world today, and
this number is increasing due to aging populations, environmental contamination,
ethnic and sectarian violence, war, and the increasing divide between the rich and
the poor (Harrison, 2004). The United Nations is currently working on a treaty to pro-
tect the rights of people with disabilities. The goals of the international treaty are to
raise public awareness about disability-related issues, highlight human rights abuses,
develop knowledge about disability-related issues of governmental and nongovern-
mental groups, and offer capacity-building opportunities for disability groups through
increased global focus on their issues (Harrison, 2004).
The rights of people with disabilities are being recognized in many countries.
Great Britain passed the Disability Discrimination Act in 1995;Australia adopted the
same law shortly after Great Britain. Statutes in countries such as Africa, Austria, Bra-
zil, Germany, Finland, the Philippines, Malawi, South Africa, and Uganda have been
amended to prohibit discrimination on the basis of disability (Harrison, 2004).

Ableism Curriculum Design and Facilitation Issues

Without attention to the systemic nature of ableism, education about disability issues
can reinforce existing stereotypes and beliefs. For example, "Disability Awareness"
programs, a popular educational intervention in many schools and workplaces, often
use disability simulation activities to educate participants. In such programs, partici-
pants are assigned a disability to "live" with for a period of time. After the simulation,
participants discuss the difficulty of performing daily activities with their disability.
Such simulations, unless very carefully designed and discussed afterwards, reinforce
a view of disability as individual deficiency rather than fostering awareness of able-
ism as a form of oppression that operates on individual, institutional, and societal/cul-
turallevels. In addition, these activities perpetuate negative notions about disability
by focusing on what participants cannot do because of their "disability." This experi-
ence often reinforces participant fears of becoming disabled and condescending per-
ceptions that people with disabilities should be pitied or helped. Having participants
spend time using a wheelchair to understand mobility impairment may reinforce
the idea that using a wheelchair is "tragic." People role-playing blindness may only
remember their fear and incompetence and discount the training, adaptations, and
accommodations they could use to ensure living fully should they lose their sight. A 1-
hour experience being blindfolded or using a wheelchair obscures the fact that people
live with these disabilities all their lives, know how to confidently get around, and are
able to live their independent lives. Without attention to the systemic nature of able-
ism, education about disability issues can reinforce existing stereotypes and beliefs.
342 Pat Griffin, Madeline L. Peters, Robin M. Smith

For these reasons, we believe that "disability awareness" activities should be designed
to focus on ableism as a systemic phenomenon.
Facilitators should be aware of and sensitive to the range of awareness and knowl-
edge about disability that participants bring so as to facilitate a meaningful experience
for all, both temporarily able-bodied participants and participants with disabilities.
For example, persons with disabilities may not be knowledgeable about or sensitive to
people with disabilities different from theirs. Participants will also differ in their will-
ingness to share their own experiences with disability. For example, those with hidden
disabilities mayor may not feel comfortable disclosing this information in class. Others
may not think of themselves as disabled when they begin an ableism course but may
come to identify as such as a result of participation in the course. All participants can
benefit from an opportunity to explore their feelings about disability, including fears
about their own fragility, loss of control, and death. In such discussions, participants
may realize how fears cause them to avoid people with disabilities or feel anger toward
people with disabilities for reminding them of these realities of life.

Whatever specific activities we choose for a course on ableism, our teaching is guided
by a set of assumptions we have about disability and oppression. These include the
Having a disability is another interesting way to be alive.
Becoming disabled involves major life changes including loss as well as gain,
and is the continuation of a meaningful and productive existence.
People with disabilities experience discrimination, segregation, and isolation
as a result of other people's prejudice and institutional ableism, not because
of the disability itself.
Social beliefs, cultural norms, and media images about beauty, intelligence,
physical ability, communication, and behavior often negatively influence the
way people with disabilities are treated.
Societal expectations about economic productivity and self-sufficiency
devalue persons who are not able to work, regardless of other contributions
they may make to family and community life.
Without positive messages about who they are, persons with disabilities are
vulnerable to internalizing society's negative messages about disability.
Independence and dependence are relative concepts subject to personal defi-
nition, ,:"hich every person experiences, and are neither inherently positive
nor negative.
Although laws now protect people with disabilities and their right to inclu-
sion in the mainstream of our society, they are still not treated as full and
equal citizens.

Ableism Curriculum Design

Overall Goals
Participants will increase awareness of ableism and its manifestations at the
individual, institutional, and cultural levels.
Participants will learn how disability is constructed through social and envi-
ronmental barriers.