of disability in the dominant culture
vs. social model of disability
"we all have a disability" argument
that we hear (way too much)!
the definition of disability
theories on the role of dichotomies/ binary oppositions
and the ways to subvert them (warning: very "academic")
needs," "physically challenged," "disABLED,"
ready for the reaction and response
additional questions to ponder
note about language
"special" footnote about "special needs"
for all you "special" teachers and educators out there
you have suggestions for the self-definition section of
THE POLITICS OF NAMING
by Sarah Triano
"Definitions belong to the definer,
not the defined." Toni Morrison
DISABILITY IN THE DOMINANT CULTURE
- What is the first thing that comes to your mind when
you hear the words "disability" or "disabled"?
According to The American Heritage Dictionary of the English
Language, "disability" is defined as "a disadvantage
or deficiency, especially a physical or mental impairment
that interferes with or prevents normal achievement in a particular
area, or something that hinders or incapacitates."
This definition of "disability" is paralleled in
most of the civil rights laws today that protect the rights
of people with disabilities, including:
Definition of "Disability" Contained in The
Rehabilitation Act and The Americans with Disabilities Act:
"Any individual who has a physical or mental impairment
which substantially limits one or more of such person's major
life activities, has a record of such impairment, or is regarded
as having such an impairment."
In other words, you are limited in what you can do because
of your disability.
Definition of "Disability' conatined in the Individuals
with Disabilities Education Act: "A physical or mental
impairment that 'adversely affects a child's educational performance.'"
In other words, you can't learn because of your disability.
Definition of "Disability" contained in the
Social Security Act: "Disability" means 'inability
to engage in any substantial gainful activity
In other words, you can't work because of your disability.
Definition of "Disability" contained in the
Developmental Disabilities Act: "A 'developmental
disability' is a severe, chronic disability of a person five
years of age or older which - is attributable to a mental
or physical impairment or combination of mental or physical
impairments; is manifested before the person attains age twenty-two;
is likely to continue indefinitely; results in substantial
functional limitations in three or more of the following areas
of major life activity: A) self-care, B) receptive and expressive
language, C) learning, D) mobility, E) self-direction, F)
capacity for independent living, and G) economic self-sufficiency
In other words, you basically can't do anything
because of your developmental disability.
QUESTION TO PONDER: Interestingly enough, when you
go to look up the definition of "race" under the
Civil Rights Act of 1964, it's not there - there is no definition
of "race or ethnicity" in the entire Civil Rights
Act.Why is it that "disability" is so highly prescribed
and carefully defined in civil rights laws, while other
human differences that are subject to protection under the
law (such as race, sex, etc) are not?
Labeling people with disabilities by medical categories,
and attributing the problems we experience in society to
our disabilities, or to an internal "deficiency or
abnormality" as disability is often perceived, is
antithetical to the philosophy and goals of the disability
civil rights movement.
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MEDICAL VS. SOCIAL
MODEL OF DISABILITY
What is the medical and social model?
According to the prominent Disability Studies scholar and
activist, Carol Gill (1998), the experience of disability
has been historically viewed as a "tangible flaw located
within an individual's physical or mental constitution."
This view comprises what has been commonly referred to as
the "medical model of disability." With the
passage of Section 504 of the Rehabilitation Act in 1973,
however, disability rights activists and others began articulating
a "social model of disability" which de-emphasizes
"the significance of individual impairments (such as,
paralysis, blindness or learning limitations) in causing the
problems persons with disabilities face" (Gill, 1998,
p.1). It focuses, instead, "on such socially constructed
barriers as exclusion, blocked access and disability prejudice
as the 'real' problems of disability" (Gill, 1998, p.1).
According to a social model of disability, therefore, the
educational difficulties experienced by disabled children
in the classroom are not necessarily caused by their individual
disabilities, but are rather the result of a poorly-structured
education system that is not equipped to meet the needs of
a diverse student population. The barriers experienced by
people with disabilities in society are not necessarily caused
by our disabilities, but are rather the result of living in
a society that is designed by and for non-disabled people.
In my travels as a disability activist, I have asked many
people across the country what the first thing is that comes
to their mind when they hear the words "disabled"
or "disability." Without exception, the responses
of most people (disabled and non-disabled alike) reinforce
the dominant culture's views of disability - a medical model
of disability: "pathetic, weak, unable, not able, a barrier,
a challenge, something that prevents you from doing something,
not normal, a wheelchair."
In one instance, I had a woman say, "I have a disability.
I'm black." She went on to explain that because of
her skin color, she has experienced many barriers and challenges
in the dominant white culture.
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THE "WE ALL
HAVE A DISABILITY" ARGUMENT
The other typical response I will get is, "Well, we
all have some kind of disability." In fact, the first
time I heard this "we all have a disability"
argument was when I was at the National Leadership Development
Conference for Students with Disabilities in Washington, DC
in 1998. One of the speakers made the following remark during
his speech at the conference: "We all have a disability,
don't we? After all, I'm not 6 foot 2 and can't dunk a basketball
like Michael Jordan, so in a sense, I have a disability, right?"
I was upset when I heard him say this, but at the time I
couldn't quite express why. My comrade in the National Disabled
Students Union, Kathy Coleman, expressed my feelings beautifully
when she said, "The 'everyone has a disability' argument
doesn't sit well with me either. I had a professor in a course
say her disability was that she could 'not spell when she
was writing on the board in front of the classroom' as her
way of making an argument for the 'everyone has a disability'
viewpoint (she does not have a learning disability). There
is a difference between being weak at a skill and having a
disability. Everyone has strengths and weaknesses that are
not a disability. You don't get denied health insurance because
you make a mistake spelling on the chalk board." Similarly,
I seriously doubt the speaker at the Natioanl Leadership Development
Conference has ever been denied health insurance or the right
to equal education because of his "disability."
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THE DEFINITION OF "DISABILITY"
Fundamentally what is at issue here, to me, is the definition
of disability. The unnamed speakers of the world define "disability"
as a "limitation," a "weakness," a "barrier
to be overcome." If that is how you define "disability,"
then yes, we all have a disability because we all have barriers
and challenges we must overcome in our lives, including discrimination
and all the other "isms."
But I do not define disability that way. I define disability
as a natural and beautiful part of human diversity that people
living with disabilities can take pride in. I believe
the barrier to be overcome is not my disability; it is societal
oppression and discrimination based on biological differences
(such as disability, sex, race, age, sexuality, etc).
Today, it would be ludicrous to define the experience of
being a woman as an "impairment that substantially limits
one or more major life activities." We would be outraged
if the laws guaranteeing equal education for African-American
children explicitly stated that these children are only protected
by the laws if the children have a skin color that "adversely
affects their educational performance." We would laugh
if we heard a white person say, "I understand what you
are going through because, after all, we're all Latino, aren't
we?" How often do you hear a civil rights activist boast
about the fact that they have "overcome their skin color"?
Do they hold out for that "cure" for their skin
color, like Christopher Reeve does with his disability? Do
we try to "overcome our skin color," or understand
that the primary barriers for racially and ethnically diverse
communities in our society are racism and discrimination?
Why is it somehow different for disability? "When disabled
people internalize the demand to 'overcome' rather than demand
social change, they shoulder the same kind of exhausting and
self-defeating 'Super-Mom' burden that feminists have analyzed"
(Linton, 1998, 18).
It's time that we reclaim the definition of disability
and take control over the naming of our own experience.
As the Disability Studies scholar, Simi Linton, has said in
her book, Claiming Disability: Knowledge and Identity,
"A project of disability studies scholars and the disability
rights movement has been to bring into sharp relief the processes
by which disability has been imbued with the meaning(s) it
has and to reassign a meaning that is consistent with a sociopolitical
analysis of disability" (p.10). All disabled people
must go out into the world with our heads held high, with
our dignity and pride intact, vowing to take back the definition
of disability with militant self-pride. Just
as "Black is beautiful," Disability is beautiful
and we should never let anyone tell us any differently or
make us feel ashamed to be who we are. Some people may
define disability as bad, but I think it's all good, and no
one, not even the Extreme Court of the United States, can
take that away from me.
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THEORIES ON THE ROLE OF DICHOTOMIES/BINARY OPPOSITIONS
AND WAYS TO SUBVERT THEM
In 1966, during his historic speech in Berkeley, Stokely
Carmichael defined the concept of Black Power as a fundamental
right to define oneself and to be free of the oppressive black/white
opposition in society - "the lie that says anything black
is bad." "People have been telling you anything
all black is bad," he said, "but I'm never going
to be put in that bag. I'm all black and I'm all good"
(Carmichael). Carmichael's refusal to be subjected to a black/white
dichotomy through a purposive reversal of values hearkens
back to a strategy of inversion articulated over a century
before by Frederick Douglass: "What [my master] most
dreaded, that I most desired. What he most loved, that I most
hated. That which to him was a great evil, to be carefully
shunned, was to me a great good, to be diligently sought;
and the argument which he so warmly urged, against my learning
to read, only served to inspire me with a desire and determination
to learn" (Douglass). In 1978, the well-known lesbian
feminist, Mary Daly, employed a similar strategy of inversion
in her book, Gyn/Ecology, by arguing that a woman whom
the patriarch calls "evil" is in fact good, whereas
a woman whom the patriarch calls "good" is in fact
Uniting all three of these narratives is an attempt to
subvert the cultural imperative to structure experience through
false dichotomies such as white/black, man/woman, straight/gay,
able/disabled, etc. According to the lesbian theorist,
Judith Butler, the Western philosophical tradition is largely
driven by a binary system that defines certain terms, such
as masculinity, by virtue of their negative, contrasted opposite
(i.e. femininity), thereby producing a series of binary oppositions
that serve to solidify meaning, beliefs, and what is perceived
to be reality, or the "truth" (39). Elizabeth Grosz
argues that this "dichotomous thinking necessarily hierarchizes
and ranks the two polarized terms so that one becomes the
privileged term and the other its suppressed, subordinated,
The subordinated term is merely the negation or denial,
the absence or privation of the primary term, its fall from
grace; the primary term defines itself by expelling its
others and in this process establishes its own boundaries
and borders to create an identity for itself. Body is thus
what is not mind, what is distinct from and other than the
privileged term. (Grosz 3)
These oppositional terms, therefore, do not coexist on equal
grounds; rather, one side of the binary opposition is privileged,
while the other side is devalued (Schrift 15). In the system
of signification, or representation, then, "white"
becomes the privileged term -the signifier - that defines
itself by its suppressed, subordinated, negative opposite:
"black," the signified. As Grosz notes, this subject/object
divide serves a very specific linguistic and cultural purpose,
particularly in terms of establishing the boundaries necessary
for the creation of a seemingly stable cultural identity.
According to Rosemarie Garland Thomson, the dominant culture's
identity, or "ideal self," "requires the ideological
figures of the woman to confirm its masculinity and of the
black to assure its whiteness," just as it also requires
the disabled "to secure its able-bodiedness." "The
freak, the cripple, the invalid, the disabled," she writes,
"like the quadroon and the homosexual - are representational,
taxonomical products that naturalize a norm comprised of accepted
bodily traits and behaviors registering social power and status"
(Extraordinary Bodies 44). Those who are situated in
the position of the negative, subordinated "other"
(i.e. the black, the woman, the disabled, etc.) are not allowed
to participate in this process of representation and to offer
their definition of what it means to be black, feminine, disabled.
Instead, as the "constitutive outside," they are
subjected to an explicit narration of their bodies that in
and of itself serves to erase any "disruptive possibilities"
or alternative definitions (Butler 35). As the French feminist,
Luce Irigaray, notes, when these isotopical feminine figures
are taken to be the feminine, the "real" feminine
(i.e. femininity as defined by the "other," the
woman) is fully erased by its very representation as the negative,
contrasted opposite of masculinity (cited in Butler 36). This
dichotomous representation then becomes a "reality"
that people act upon as if it were true - a sign that supposedly
references the world without any complication or ambiguity.
As many feminist theorists have shown, however, this sign
is highly unstable. That which we believe to be "natural"
or inherently "true" (i.e. that black is the negative
opposite of white) is nothing more than an illusion of language,
an imposed fiction that only appears stable and absolute because
it has been repeated and reified from one generation to the
next. Once it is recognized that meaning is not fixed,
and that the relationship between the signifier and the signified
is an arbitrary product of language, Butler argues that it
is then possible to interrupt the site of signification
and directly challenge the assumption that what we believe
to be true is inherently true by developing alternative definitions
that transgress the binary oppositions of white/black, masculine/feminine,
form/matter, mind/body, etc. Grosz notes, however, that when
dissolving these oppositional categories, "we cannot
simply ignore them, vowing never to speak in their terms again."
"This is neither historically possible nor even desirable,"
she writes, "insofar as these categories must be engaged
with in order to be superceded" (24).
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NEEDS," "PHYSICALLY CHALLENGED," "disABILITY,
What is appropriate language? Many disabled
people today propose that we choose a new name for ourselves
and our community rather than "disability" such
as "physically challenged," "disAbility,"
"the able disabled," and "special needs."
As Grosz notes, however, these terms do not necessarily challenge
the oppositional category of able/disabled." As Stokely
Carmichael, Frederick Douglass, and Mary Daly all illustrate,
one of the most effective ways to directly engage, and
thereby supercede, this dichotomous category is to invert
the subject/object divide and effectively mobilize it to its
opposite by purposively valuing that which is devalued.
We must, as Grosz argues, engage the language that has been
historically used to stigmatize us, "disabled,"
and reclaim and reassign meaning to it by purposely valuing
that which is devalued ("disability"). Therein lies
my rationale for DISABLED AND PROUD!
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GET READY FOR THE REACTION
What I am proposing - a fundamental redefinition of disability
in society - is extremely radical and strikes at the deepest
feelings and assumptions people have about themselves and
the nature of life itself. As one of my comrades in the National
Disabled Students Union, Jodi Ross, said:
"The mindset of oppression is pervasive, has a momentum
of its own and takes a lot of energy to get free of. So even
people who have quite a few insights and positive qualities
and even care about you/me/us in some genuine ways are often
still very caught up in it and very unsettled when its challenged.
But unfortunately, I don't think there is a chance in hell
that the ablebodied
population will get this until we get it ourselves. There
are MANY - I would say MOST- who are disabled who share the
belief that they are lesser and that disability is by definition
tragic and bad. Even disabled people who I personally consider
amazing and wonderful and even people who are politicized
about other oppression, still believe the lies about themselves
and their disability.
This is a common problem in oppressed populations: internalized
oppression. I think it's worse among disabled people because
our movement is so little known and because many of us grow
up in families where the folks who are supposed to love us
best buy into the idea. As a lesbian, I can say that this
is a common problem for other minorities who live in a situation
of being "the only one" in their family, in a world
that affirms the "defective" status of "people
like me," as well.
But it's not hopeless. Dykes, gay men, and other sexual minorities
have worked hard over ages and made considerable progress.
The suicide rate for gay teens is still many times that of
straight ones, but there are many more people coming out and
finding self-love, community, and the respect of others than
in the past.
We need to do the same in the disability movement. We need
to show models of empowerment, not only for practical reasons,
but also because humans are social creatures and don't like
to be alone in their thoughts any more than we like to be
alone in our bodies. We need to tell the world, starting
with ourselves, who we are and what we are, and it will give
others the insight and courage to open up their hearts and
minds as well."
Through this website and our emphatic stance that we are
disabled and proud, we will begin the revolution of empowerment.
- Change the way people think about disability
- Break down the internalized shame among people living
with disabilities, and
- Promote the belief in society that disability is a
natural and beautiful part of human diversity that people
living with disabilities can take pride in.
Remember: Disability Is Beautiful! Difference
Is Beautiful! That Makes You Beautiful!
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SOME ADDITION QUESTIONS TO
1. What is your personal definition of disability?
2. Is your definition of "disability" based on the
oppressive, binary disabled/able opposition in society?
3. Where did your definition of "disability" come
4. How can you begin to personally redefine disability and
value the experience of disability in your life?
5. What do you think is appropriate language to use when describing
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A NOTE ABOUT LANGUAGE
It's impossible to begin the process of reassigning
meaning to "disability" without also discussing
language and terminology, and the question of what is appropriate
language. As Linton (1998), notes, "Over the past
twenty years, disabled people have gained greater control
over these definition issues. The disabled or the handicapped
was replaced in the mid-70s by people with disabilities to
maintain disability as a characteristic of the individual,
as opposed to the defining variable
. Beginning in the
early 90s disabled people has been increasingly used in disability
studies and disability rights circles when referring to the
constituency group. Rather than maintaining disability as
a secondary characteristic, disabled has become a marker of
the identity that the individual and group wish to highlight
and call attention to" (p. 13).
Many self-advocates and people with developmental
disabilities still prefer to use what is called "people-first"
language (i.e. "people with disabilities").
As Jerry Kainulainen argued in his article, Why 'Handicapped'
is not Cool, "In using language, we can choose to emphasize
people's similarities or differences. The term 'disabled person'
is a sloppy short cut to the more psychologically sound expression,
'person with a disability.' The latter places the person first,
not the disability. Placing the disability first distorts
and undermines who people with disabilities are and how they
want to be seen. We don't refer to people with broken legs
as 'broken-leg people!"
Yes, but we also don't refer to women as "people who
are women." That seems silly to me. I am a woman and
proud of it. Period. Saying that I am a "person who is
a woman" gives credence and authority to those who
would deny me my personhood as a womyn. Even though someone
uses "proper terminology" doesn't mean their internal
beliefs have changed. Just because someone refrains from using
the "n-word" doesn't mean they are not a racist.
Just because someone uses "person-first" language
doesn't mean they don't harbor internal ableism and paternalism.
For these reasons, and many more, I prefer to say "disabled
person" and place my disability first because I am proud
of it. Disability is beautiful and a natural part of human
diversity. It is an important part of who I am and also contributes
to my uniqueness. I am, therefore, Disabled and Proud, and
not "A Person with a Disability and Proud."
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FOOTNOTE ABOUT "SPECIAL NEEDS"
FOR ALL YOU "SPECIAL" TEACHERS AND EDUCATORS OUT
"Special needs," in particular, is a phrase that
is still used today in educational circles and really grates
on my nerves. There is nothing "special" about our
needs. In fact, certain things people with disabilities require
to function are things that a majority of non-disabled people
either need or could benefit from. For example, curb cuts
were made for people in wheelchairs, but they benefit skate
boarders, bike riders, and mothers using strollers. Schools
are just now starting to put books on CD's because students
are getting back problems as a result of their heavy backpacks,
but students with learning disabilities and students who are
blind have been using books on CDs and on tape for ages. These
accommodations are not "special" - they are things
that benefit all of humanity. And, as one of the youth in
our Leadership/Organizing Training at Access Living in Chicago,
recently said, "There ain't nothin' special about
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"Dis-Ing Definitions," by Steven E.
Brown, 1997: http:www.independentliving.org/docs3/brown97b.html
June Isaacson Kailes, a Disability policy consultant,
has a great tool for sale that has a section in it on, "Language
As An Element of Disability Pride and Culture." I highly
recommend it! http://www.jik.com/resource.html
Disability Pride: The Interrelationship of
Self-Worth, Self-Empowerment, and Disability Culture,
published by the Independent Living Research Utilization (ILRU)
Research and Training Center on Independent Living, Houston,
1993, 84 pages, $20.
An excellent, practical and easy to use idea kit for people
who facilitate advocacy training and skill building. Consists
of over 20 different handouts, exercises and activities utilizing
an array of tools and techniques to assist advocacy training
facilitators in helping people examine: how common stereotypes
about disability influence self-image and feelings about disability;
disability culture as the common experience among people with
disabilities; and the importance of disability identity and
pride as related to self-empowerment.
Item # 93-1
Disability Pride Inventory, 1997, 3 pages, $3.
Discussion tool which stimulates discussion on disability
pride, identity and culture.
Item # 97-3
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you have other suggestions for things we should add to the Self-Definition
section of the website? If so, email us at [email protected]
and let us know your ideas!
Disability Is Beautiful. Difference Is Beautiful. That makes
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