For millenia, cultures have created myths and stories as a
way of addressing the issues of their time and heritage. Myths
help to explain what's unclear or unknown, and provide a culture
with reasons and traditions. Material for myths is limitless,
but often centers around events and people. Besides providing
answers, however, myths can also generate emotions: happiness,
security, awe, suspicion, and fear. Archetypes are mythical and
symbolic models, providing icons and images for the making, embodiment,
and fulfillment of myths.
Perceptions of people can derive from the myths surrounding
them. People are expected to behave as their reputation dictates,
whether or not that reputation was self-made or assigned. Just
as film stars are "typecast," playing a similar role
often throughout their career, individuals can be subject to a
plurality; one person is expected to be like, and responsible
for the behavior of, other people like them.
Anne Frank wrote in her diary, "What one Jew does is thrown
back at all Jews."1 During the Holocaust, many people were
tortured or killed because of myths surrounding them. Not known
as individuals, but as numbers; each number representing one member
of a "whole," whether Jewish, Gypsy, disabled, homosexual,
or other. In this case, myths led to hysteria and tragedy. Myths
can also be considered positive. Asians are assumed to be good
students; Minnesotans are "Minnesota nice."
Words, and their definitions and associations, play a significant
role in the making and perpetuation of myths. The term "disability"
has many definitions. The Americans with Disabilities Act of 1990
defines "disability" as:
"- a physical or mental impairment that substantially limits
one or more major life
activities;
- a record of such impairment; or
- being regarded as having such an impairment."2
This is a significant difference from the definition of "disability"
used in 1980 by the World Health Organization, which defines "disability"
as "any restriction or lack (resulting from an impairment)
of ability to perform an activity in the manner or within the
range considered normal for a human being."3 The use of
the term "normal" generates questions, among them the
definition of "normal." Since every human being, disabled
or not, has different personalities and levels of ability, does
"normal" even exist? Are all people with disabilities
"abnormal"? Using the term "normal" creates
a myth that such a group of people exists. This mythological normal
person is of average build, average education, and average ability.
He or she is a conglomeration of all statistics, managing to meet
the established median, deviating just enough not to be a clone
of every other "normal" human being. Finally, this myth
implies that it's the duty of the mythological "normal"
person to seek out the "abnormals" and help them to
fit into this society of averages.
Disability can also be defined not as something inherent in
a person, but something affecting a person with a disability living
in an (assumed) able-bodied society. In the 1970s, "activists
argued that the degree of a person's ability or disability is
determined by access to public facilities, social support, protection
against discrimination, and cultural acceptance. Exclusionary
conditions, not impairments, are the root cause of disability."4
Legislation now mandates equality of opportunity in education,
housing, and employment among other things, but perceptions of
people with disabilities are slower to change. It's not just employment
discrimination or inaccessible buildings that enforce disability
or difference. Language, actions, and the assumptions and perceptions
transmitted through words and actions, can be exclusionary. "People
first" language affirms a person with a disability, addressing
the person before a label. For example, rather than saying "Joan
is afflicted by epilepsy," the affirmative language says
"Joan is a person with epilepsy." The person comes first,
and an "exclusionary condition" is avoided.
As words and their meanings change over time, many things
can happen. Connotations arise, based upon the myths and images
associated with words; this can lead to stigmas. A stigma develops
when pejorative and condemning assessments of a group or trait
affect ideas about every representative individual. In Stigma,
Erving Goffman mentions three stigma types: tribal (heritage,
class, religion), moral (addiction, criminal history, mental disability),
and "the physical abominations" (chronic illness, physical
disability, cosmetic disfigurement).5 This grouping, and related
isolation, of individuals promotes stigma perpetuation. An example
is separation of epileptics from other patients in 1600s mental
hospitals; this was done to prevent the spread of epilepsy, thought
to be a contagious disease. Similar separations occurred prior
to the enlightenment limit exposure to the epilepsy-causing demons.
A more recent stigma concerns people with AIDS. Fear of contracting
the virus causing AIDS through simple contact with a patient (such
as shaking hands or borrowing a pen) prevents some people from
voluntarily having contact with people with AIDS. A stigma has
been created, and fear of deadly illness speaks louder than medical
information regarding transmission.
Stigmas contribute to non-differentiation, stripping people
of their individuality. A person using a wheelchair is the "icon"
for disability; from parking spaces to bathroom doors, the symbol
pervades American society. A person with a physical disability
not
using a wheelchair is considered "not really handicapped."
Likewise, someone who is deaf is associated with a person using
a wheelchair, for no reason besides being a "person with
a disability." The "icon" is assigned regardless
of relativity. Finally, the pervasiveness of generalization is
especially evident when a person using a wheelchair is shouted
at; the "icon" is perceived as deaf because he or she
"represents" all people with disabilities.
Media affects cultural perceptions because it's present almost
everywhere, and people generally grow up learning from media,
continuing to depend upon it throughout their lives. Napoleon's
phrase "a picture is worth a thousand words" demonstrates
how thoroughly media can impact people. Just seeing an image constructs
ideas and beliefs. Effective writing or music, with or without
visuals, generates persuasion. When all aspects are combined,
as in a film, media's mark is made, sometimes indelibly upon the
audience's minds. However incredulous or incredible an idea was
prior to media presentation, image is reality afterwards.
According to 1997 United States Census information, 32% of
the U.S. population reports having "some level" to "severe"
disability.6 Until recent years, however, people with disabilities
have been scarce in advertisements. Because of the prevalence
advertisements have, featuring people with disabilities significantly
increases awareness, and widens the customer base; some companies
are realizing that. Advertisers "see (people with disabilities)
as something more than disabled-they are consumers. These ads
show people in wheelchairs playing sports, using bank teller machines,
teaching classes, drinking beer, wearing Levi's, and eating at
McDonalds" (Sheridan 5).7 A few messages are conveyed by
such ads. People with disabilities are active and up-to-date,
going places, doing things, and consuming. The myths that people
with disabilities just stay at home, looking out the window and
watching the world go by are dispelled by these advertisements.
A brochure prepared by the National Easter Seal Society lists
common disability myths, among them "the lives of people
with disabilities are totally different than those of nondisabled
people."8 Modern, inclusive ads show that the opposite is
true.
Books and films have significant powers of impression. Because
most people become familiar with characters from storybooks as
young children, those images shape our perceptions for years.
Films aimed at children commonly portray disability, disfigurement,
or difference as scary, pitiful, or punitive. Parental influences
are based upon the parent's own experiences and perceptions; too
often, pejorative myths conveyed through books and movies are
reinforced by parents because they, too, grew up with those images
and never learned otherwise.
Scar in Disney's "The Lion King"9 is a grouchy social
misfit with sinister plans. He has a scar on his forehead and
a messy, dark appearance. As is the case for the Wicked Witch
of the West in "The Wizard of Oz,"10 Scar's appearance
speaks volumes; disfigurement, or unattractiveness means evil.
Because they are inherently bad, plotting to take over the savannah
or steal Dorothy's shoes, these characters are "punished"
with disfigurement. Another example of the punishment myth is
Captain Hook from Peter Pan.11 In the story, Captain Hook uses
a hook in place of the hand Peter Pan cut off and fed to a crocodile.
Despite this loss, Captain Hook manages to imprison the children,
offering them the option of becoming pirates or walking the plank.
Refusing, the children face impending doom until Peter comes to
the rescue and Captain Hook goes overboard, only to be pursued
by that crocodile. All three of these examples come from stories
directed primarily at a younger, impressionable audience. The
message: evil is manifested as disfigurement or disability. Avoid
being bad and you won't become disabled; avoid people with disabilities,
because they probably did something to deserve it.
In "A Christmas Carol,"12 Charles Dickens presents
disability through a weak child, victimized by poverty and Scrooge.
Tiny Tim needs a crutch to walk. His father's wealthy but grouchy
boss, Scrooge, has a series of dreams, one forecasting Tiny Tim's
death. He wakes up resolving to start over, beginning with Tiny
Tim's family. In the Disney cartoon version,13 it should be noted
that Scrooge himself appears younger and more "able"
after his awakening. Arriving at Tiny Tim's house, Scrooge presents
the family with gifts and a turkey. He also pays for Tiny Tim's
treatment, assumedly saving his life. Tiny Tim embodies the archetypes
of poverty and helplessness, used to fund charities at Christmas
time. His disability and youth draw pity, conveying the message
that all people with disabilities need wealthy Uncle Scrooge to
pity them. Being young, Tiny Tim can't speak for himself, enforcing
the myth of helplessness and the need for representation by a
powerful "uncle." The message conveyed by this story
is that able-bodied society could eradicate disability simply
by taking pity upon the "helpless" and "indigent"
victims.
Fear is another archetype of disability perpetuated by media.
Characters are either shrouded in mystery, or present danger due
to lack of control. While some people with emotional and mental
disabilities do present a threat, they are not representative
of all
people with disabilities. A stigma has been created, however,
and the resulting fear generates avoidance of people with disabilities
in the name of safety. Two examples of the fear archetype are
Lenny Small from John Steinbeck's Of Mice and Men,14 and Quasimodo
from Victor Hugo's The Hunchback of Notre Dame.15 Lenny was a
man with mental retardation; he was strong but childlike, and
loved soft things. He carried a dead mouse with him because he
enjoyed petting it. This attraction to soft things led him to
touch the hair of a woman known only as "Curley's wife."
She asks him to release her hair, but instead Lenny panics and
impulsively, not realizing his own strength, Lenny breaks her
neck. Already ashamed of killing his puppy, Lenny was hysterical
after killing Curleys's wife, so he goes to where his friend George
had told him to go to if he was in trouble. George finds Lenny
and shoots him. As in "A Christmas Carol," pity was
taken upon the person with a disability. Rather than force Lenny,
who neither planned nor understood his violence, to be held accountable,
George "releases" him from his disability. Moreover,
with Lenny dead, no one has to feel fear.
Quasimodo, living Notre Dame's bell tower in Medieval France,
is literally hunchbacked and unattractive. His name "Quasimodo"
translates to "partially formed." Due to accusations
of rape, and his resulting life of seclusion, he's scary and mysterious
to the townspeople. When he does venture out of his tower, Quasimodo
is besieged with vindication and hostility. Like Lenny, he is
strong and feared, yet exhibits a desire for love. Like Captain
Hook, he's "punished" with disfigurement. Quasimodo's
unrequited love of Esmeralda, a young gypsy, demonstrates that
despite his isolation and disfigurement, he is capable of emotion;
after she's hung for witchcraft, he goes to her tomb to die there.
Quasimodo's isolation mirrors the veil of ignorance surrounding
people with disabilities. Until recent decades, many people with
disabilities were confined in prisons and institutions, supposedly
in society's best interest. This lack of awareness generates stigmatism.
Lenny and Quasimodo are expected to do harm. In modern society,
a couple of "disability" icons dominate: the person
in a wheelchair or the lunatic in a room with padded walls (who
would otherwise be running the streets, raping and pillaging).
One incites pity, the other fear. Ignorance prevents many people
from discerning one disability from another, and the result is
making Tiny Tim or Quasimodo of anybody labeled "disabled."
Besides media, lifestyles and means of living impact perceptions
of people with disabilities. "Ableness" means survival
in some cultures, especially where manual labor puts food on the
table. The ability to provide for a family brings satisfaction
and pride; disabilities can mean lack of self-sufficiency, and
the resulting pride, where adaptations are unavailable. This situation
is apparent among Aboriginal women profiled by the National Aboriginal
Network on Disability. "In some Aboriginal cultures, disability
is seen as a manifestation of the supernatural, the result of
an evil spell or an unnamed wrong. Other Aboriginal cultures see
it as an imbalance or lack of harmony with one's self and one's
environment."16 Gender roles influence perceptions of disability;
in cultures where primarily men provide, a man with a disability
may have lower status. The same is true for women in cultures
where women an integral providers. Ideas about independence and
self-sufficiency also influence perceptions. If strength and independence
are attributes prized in women, a woman with a disability is stigmatized
and potentially degraded. However, if women are supposed to be
dependent and meek, then it's supposed that she'll be cared for,
and she's not encouraged to be self-sufficient. "Young girls
with disabilities face a particularly hard time because they lack
role-models. They do not see successful Aboriginal women with
disabilities achieving their goals."17
In Aboriginal cultures emphasizing the care-taking and maternal
roles in women, disability can make getting married difficult.
Sterilization is a relatively common practice. An account referring
to a young sterilization patient says "the young girl in
the next bed had the surgery. She didn't think she had any alternative.
She was only sixteen."18 Subordination and difference were
probably imbedded in the girl's mind since childhood; she wasn't
taught to be independent, or defend her human rights.
In Venus on Wheels, Gelya Frank examines the representation
(or lack there of) of women with disabilities in American culture.
People with disabilities are considered members of a minority
group, yet "disability" can happen to anyone at any
time. Diane Devries, who tells of her disability biographically,
puts disability in context; disability is part of a person's life,
not their identity. Cultures create icons and many myths exist.
The stereotypical person with a disability is either someone in
a wheelchair, or a lunatic in a padded room. Representation of
women with disabilities is further complicated because gender
roles affect perceptions of women, as the ethnographies presented
demonstrate.
Diane felt the effects of stigmatization at an early age. Her
grandmother believed Satan had caused Diane's disabilities, and
arranged for an exorcism. "Diane's grandmother saw freaks
and oddities of nature as the result of traffic between the divine
and demonic."19 Similar misconceptions extend back to the
Renaissance, when it was widely believed witches or parental Satan-worship
caused disabilities. Women who gave birth to disabled babies were
subjected to punishment, sometimes including death.20
Being female and disabled combines two "cultures." Gender
roles differ depending upon society, but the expectation to conform
to them affects nearly every culture. In some societies, women
are portrayed as meek and dependent; disability actually fits
the gender role in those societies, and women are not encouraged
to work towards independence. Some cultures, however, degrade
a woman with a disability. Gender roles may dictate that women
work manually, doing physical labor to help provide for the family.
In that situation, a woman with a disability can't fit the role
of "female."
Gelya Frank illustrates the conflict between "feminine"
and "disabled" in American culture in a conversation
between Letty Pogrebin, then the editor of Ms., and Judy Heumann,
a disability rights activist. Pogrebin stated "the concerns
about sexual harassment affect all women."21 Heumann responded
by saying that, being in a wheelchair, she's never experienced
sexual harassment. "You would hate it," asserted Heumann.22
This illustrates that sexual harassment plays a dual role in American
society. While it is degrading and humiliating, it confirms "femininity."
By saying sexual harassment affects all women,
Pogrebin inadvertently implies that women not affected are somehow
less feminine. Disability somehow means androgyny, according to
that argument. Feminism also poses a challenge to women with disabilities.
As in cultures demanding that women perform physical work to provide
for their family and retain their "gender role," feminism
asserts that women must be strong and independent. "The self
esteem of women with disabilities is put at special risk when
they cannot achieve the degree of independence demanded by feminist
ideals in America."23 Between sexual harassment and feminist
ideals, women with disabilities can face difficult identity questions.
Not harassed, they don't fit that image of "feminine."
Potentially being dependent, they may not readily fit the feminist
role, either. "The line between independence and dependence
is not clear-cut."24 The disability rights movement, which
boosts access and equality regardless of gender, is a significant
move ahead for women with disabilities. Laws such as the Americans
with Disabilities Act of 1990 promise equal opportunity in education,
employment, and housing, among other areas. While assistance or
adaptations may be necessary, women with disabilities are empowered
by these laws to reach independence.
Frank asks "how typical is the life of Diane Devries,"
as the title for chapter five. Frank found that poverty, unemployment,
and lack of socialization affect people with disabilities at greater
rates than they affect "able-bodied" people. "Although
a large majority of people with disabilities felt 'reasonably
satisfied' with their lives, they were less likely to feel this
way than people without disabilities."25 It seems that poverty
is a greater risk to people with disabilities because employment
may be harder to
find, or maintain. Frank mentions that Devries had a "back-up
plan" of entering a nursing home; this option, however, would
have decreased her independence and re-enforced societal myths
of the "needy" disabled person. At the conclusion of
Venus on Wheels, Frank states "I was attracted to
study Diane's life because of her appearance. My first impressions
were of a person with enormous limitations, a victim…I found
a survivor."26
The ethnographic style of Venus on Wheels portrays Diane Devries' life as holistic. Living with a disability is just a portion of her identity. Frank illustrates that people with disabilities are under-represented in contemporary American media, and women with disabilities have few role models. A few questions are raised by this book. Who serves as a "role model" woman with a disability? Would the role model achieve "feminist" levels of independence, or not? How would having greater representation and a role model advance the disability rights movement for women? The role model wouldn't necessarily have to be a celebrity; as legislation and technology develop, people with disabilities are achieving greater independence, and their representation in the workplace and other areas paves the way for others. Development of an identity, not as a victim but as a survivor, seems to have affirmed Diane Devries. Representations of people with disabilities will also help able-bodied people to understand disability culture. Frank initially saw Devries as "victim." Limitations, however, are largely dependent upon perspective, and societal attitudes. As the ethnography developed, Frank met the whole person. Representation of women with disabilities should show holistic lives, presenting positive role models.
Myths and perceptions changes over time; education and experience
often open peoples' minds to new ideas, and better assessments
of the world around them. As people with disabilities become more
part of mainstream culture, positively represented in media and
in public, stigmas will dissipate. Terminology is changing, which
is a significant step forward; not only does "people first"
language affirm people with disabilities, it also alters mental
imagery. The person comes before the disability when using "people
first" language; over time, our myths will probably reflect
this change.
1 (Frank, Anne)
2 (http://www.usdoj.gov/crt/ada/cguide.htm.)
3 ((International Classification of Impairments, Disabilities,
and Handicaps, 1980, 27-29) Frank 184).
4 (Frank, Gelya)
5 (Goffman, Erving)
6 http://www.census.gov/prod/2001pubs/p70-73.pdf
7 http://www.youknow.com/disability/portrayals.html
8 Easter Seals Brochure
9 "The Lion King", Disney, 1994
10 "Wizard of Oz", MGM, 1939
11 (Barrie, James M.)
12 (Dickens, Charles)
13 "Mickey's Christmas Carol", Disney, 1983
14 (Steinbeck, John)
15 (Hugo, Victor)
16 http://www.schoolnet.ca/aboriginal/disable6/cultur-e.html
17 http://www.schoolnet.ca/aboriginal/disable6/cultur-e.html
18 http://www.schoolnet.ca/aboriginal/disable6/cultur-e.html
19 (Frank, Gelya)
20 (Slater, Karen)
21 (Frank, Gelya)
22 (Frank, Gelya)
23 (Frank, Gelya)
24 (Frank, Gelya)
25 (Frank, Gelya)
26 (Frank, Gelya)