All people, no matter the extent of disability, deserve respect, dignity and a life worth living to their fullest capacity. They have the right to lead regular lives; work, and to choose and achieve a desired life style, participate in their own communities, and control where and how they live.
People tagged with the label of handicapped, mentally ill, retarded, disabled, etc. have been the subject of social prejudices, discrimination, abuse, neglect and segregation. Only in the past couple of decades have the disabled rallied as a force, able to push laws and amendments through congress. The disabled have gone through a revolution of self- perception. Once, shame and embarrassment of their physical or mental limitations was something to be overcome, but now there is new thinking by the disabled; there is no tragedy in disability, but a new self-acceptance, which has sprung forth new aspirations and a demand for independence.
Sociobiological Perspective
This perspective studies the disabled by looking at the source of the disability, and how that disability effects the person's capacity to be in the community. The genetic and environmental factors relating to disability, as well as our societies perception of the disabled, is researched.
The kinds of disabilities number into the hundreds. Congenital disabilities happen before birth, but most disabilities come later in life. Muscular dystrophy and cystic fibrosis are progressive, others like, seizures are episodic. Some can be progressive and episodic like multiple sclerosis. A loss of a limb is a static condition, while others are hidden, such as a learning disability. The mentally ill are seen by the public as dangerous, when in fact only a small number of people with mental illness are dangerous. Those with schizophrenia, major depression, manic depression or related disorders can present a danger, but all bare the stigma of mental illness.
A sociobiological perspective studies the physical and mental differences imposed by a disability, and tries to answer the question: does this account for the inferior social and economic status historically encountered by the disabled? This approach will generally study the dimension of adaptiveness to their developmental research. This perspective studies the developmental factors which are associated with social and cognitive functioning, which they believe to be connected to social mobility. Individuals who are chronically exposed to environments that fail to deliver respect, adequate levels of recognition, affection or social support are predisposed to developing psychiatric disorders, and debilitating and maladaptive behaviors ( MacDonald p.9).
Before the push for independence, first by parents, then by the disabled themselves, many lived in state run institutions. These were, and in some instances still are, no more than "people" warehouses, where those with physical disabilities were thrown in together with the mentally ill, the autistic and sometimes with criminals. Children with mental retardation in these institutions were found modeling strange behaviors, and once thought part of their "illness" and "incurable". They were later recognized to be copying behaviors of the mentally ill, or some of the repetitive movements of the autistic.
As parents demanded "mainstreaming" of their children, and later full inclusion, it has been shown, those with mental retardation who are educated only with other mentally retarded children acted "retarded", but when fully integrated with other typical children, they modeled more typical "normal" behaviors.
This perspective studies the lives and the status of the disabled in society and their changing family structures and change from institutional living, to living at home and being educated in their own community schools. The structural functional perspective also explores and researches the success and failures of the independent living of the disabled. This perspective studies what the disabled want and need to be active members in the community, and how the community views the disabled.
Throughout history, Americans have been inhospitable to people with disabilities. Early Colonial Americans placed a premium on being physically fit. Any person thought to be a burden or disabled was deported back to England. Early colonies tried to prevent the immigration of anyone disabled to America, for fear they would be potentially dependent (Shapiro, p.58).
Almshouses for the poor, and physically and mentally disabled, were built by the early settlers. As the Nation's population grew from rural to industrialized to urbanized in the first half of the nineteenth century, many more of these type of houses were built. In the 1840's, a Boston school mistress named Dorethea Dix lead a reform to take control of the miserable conditions that existed in the local Almshouses. Dix discovered a mixture of disabled and non-disabled, adults, children, and criminals in together, along with mental retardation, epilepsy and mental illness.
Dix was appalled to find people with mental illness and retardation in closets, cages; chained in cellars, and stalls, naked, and beaten with rods and lashes into obedience. ( Shapiro, p.59). As a result of the reform movement, States took over the maintenance of these institutions, and set up more specialized facilities for the criminals, disabled and mentally ill. These institutions became a place of abuse, segregation and isolation as they lost their funding in charity due to the new emergence of Darwinism and Eugenics. At the end of the nineteenth century, these two schools of social thought, Darwinism and the Eugenics movement, questioned if it was even desirable to have disabled people in society. This brought new hostilities and intolerance to the disabled, which continued into the next century.
World War I veterans stirred the nation with a new feeling of obligation for the disabled, when record numbers of returning solders were surviving battle, to return home with a disability. Washington established the Veterans Bureau in 1921. The nation then had a new awareness of disability. Congress passed rehabilitation programs, and charitable groups helped, such as the American Red Cross.
The world of the disabled is ever changing; faster now than ever in history. New advancements in technology, new laws, civil rights, a better education out of "mainstreamed and into integrated" classrooms, means there are more disabled Americans seeking the American dream: jobs, participation, and acceptance. Society's low expectations, and prejudices, along with welfare and social service systems, continue to frustrate a disabled person's attempts at independence. Many disabled live below second class status, called by some the "disabled caste". Some disabled believe that mainstream America doesn't understand their struggle or even realize it is going on. The two following cases represent American's ignorance of the disability movement.
David Pfeiffer (as cited in Evans, Hey and Kiger, 1989) said the following:
In 1969, myself , who is disabled, was sitting in a bar with two other faculty members, in Rochester, New York; one was Black and one was Jewish. The conversation, after a few drinks, became an argument over which group - Blacks, Jews or disabled persons - had suffered the most from discrimination. Voices became more intense as the argument became more shrill. Suddenlythe absurdity of the disagreement was apparent: all three groups suffered discrimination and each group felt it intensely. The fact that the Black and the Jew were not aware of statutory discrimination against disabled persons was not surprising. The argument, however, made clear that it was necessary to gather together the laws which were discriminatory, on the basis of a disability, in order to educate other persons (p.5).
Joseph,(Shapiro,1993) stated the following:
The postmaster in a small town was told that he would have to make his post office building accessible to people in wheelchairs. There were twenty formidable steps leading to the only public entrance, and the revolving door was too narrow for even the smallest wheelchair. The postmaster objected to any renovation for disabled patrons. He sputtered in protest, " I've been here for thirty-five years and in all that time I've yet to see a single customer come in here in a wheelchair (p.142).
These are only two examples of how unaware the general public is of the ongoing struggle of the disabled. The public also continues to devalue the lives of the disabled, believing many have lives not worth living. Such was the case of Larry McAfee. The thirty-four year old quadriplegic, as a result of a motorcycle accident in 1989, wanted to end his life. McAfee called his lawyer and asked for assisted suicide to end his life. His lawyer brought the case to a judge, and argued that McAfee had the right to refuse medical care, such as the respirator that kept him alive. The judge agreed, and praised McAfee for being sensible and brave. This judgment is a grave insult to hundreds of Americans living daily with the aid of a respirator. This is the reality of how doctors, lawyers and judges can dismiss the lives of the disabled as a devalued life. If McAfee were not disabled and had asked the courts for aid in assisted suicide, the courts would have ordered him to suicide prevention counseling, and treated him for depression. The country failed to help McAfee, by providing adequate care and teaching him how to live on his own (Shapiro, p.258).
Currently there are approximately 43 million disabled Americans reported by the Institute of Medicine using the 1994, Federal Health survey , which failed to include, learning disabilities, mental illness, Aids and HIV positive individuals. Disability ranks as the nations largest minority group as well as the largest public health problem.
Throughout history, disability has been viewed by the professionals and public as a problem inherent in the individual. Many professionals believed they needed to fix or treat the individual to correct the disability. The disabled were treated as a medical model. Since the start of the Disabilities Rights Movement, the public's awareness has been slowly awaking to the needs of the disabled. Accessibility, reasonable accommodations, independent living, freedom of choice, and jobs, can enhance the life of a person with disabilities. The problem is now seen as an inaccessible physical, and / or social environment, and not a problem with the individual. ( Evans, Hey, and Kiger, p.1).
The attitude people have for the disabled is sometimes adoration, but usually it is pity, disgust, ignorance, or they don't even see them at all. Many Americans are not aware of the silent army of the disabled, who fought for the passing of section 405 and the ADA and IDEA all of which have helped the disabled overcome discrimination. The disabled consist of many different disabilities and they don't have one outstanding spokesman that represents them all.
Any one of us can join the ranks of the disabled at any moment, as a result of an accident or disease. Disability knows no socioeconomic boundaries, and only approximately 15% of the disabled are born with their disability (Shapiro p,7).
The structural-functional perspective studies the status of the disabled in our societies. Historically the disabled have filled the lowest ranking jobs available, when lucky enough to get work. Many are on the social welfare system or on a waiting list to work. Many work in jobs that are dull and repetitive, such as sorting nuts and bolts, and are paid piece rate, often for pennies a day. Some shelter workshops, do nothing more then group the disabled together, in an adult daycare situation, usually segregated away from other workers. Those employed outside of the workshops tend to work in the so-called food, filth, and flower positions. These are positions of pot scrubbers, bottle sorters, janitors, and lawn crew workers.
Since the push for deinstitutionalizaton, more and more disabled children and young adults grow up at home, with their families. They attend public schools and are receiving a better education. They are emerging as a powerful consumer group, who have the power to influence advertisers and congressmen. As the disabled move into competitive jobs, they have more income to spend, votes to cast and are proud to become a tax paying individual. The ways of the institutions, group homes, and shelter workshops have given way to the independent living movement. Many in group homes would prefer to live in their own apartments or homes, with support. Some require only a few hours a week, while others would need twenty-four hour supervision to live in the community and not in an institution.
The symbolic perspective studies the symbols our culture exhibits, and the attached meanings we share. When studying the disability culture, this perspective focuses on the labels we place on each other, especially the disabled. They also research the language, and our methods of describing the disabled as well as studying the language the disabled use to describe themselves.
It is obvious that non-disabled individuals don't understand disabled individuals, when they use so-called compliments such as: she never seemed disabled to me ,or he was the least disabled person I ever met. This would be on par with saying to a Black man, you don't act Black, or to a Jewish man, I don't even think of you as Jewish.
The disabled resent labels, they prefer to be known as a person first, one with a disability, second. The disabled dislike the words: invalid, afflicted, patient, courageous, brave. They believe these terms convey images that don't portray them, but portray: childlike, pitiful, sick, dependent, or objects of admiration. Most are just people trying to lead normal lives. Disabled is the socially acceptable term, one replacing handicapped, even more acceptable is: person with a disability who is ... deaf, or who.... has mental retardation, etc.
There are many gimmicky "cutesy" labels, that practically no disabled person uses, such as: "vertically challenged", "differently abled", handi - capable". These labels lack power and deny the reality of being disabled, and having it be acceptable. By using these "cutesy" terms, it's a way of hiding the disability, as if somehow shameful, needing to be hidden by a vague term. In movies, as well as literature, the disabled have been symbolized as bad, evil, or ugly. The king portrayed in "Richard III," by William Shakespeare, is a hunchback so ugly and repulsive that dogs bark at him because they are frightened. In "Of Mice and Men," Lenny the mentally retarded character, killed things. Even Captain Hook in "Peter Pan," is an evil character, (with his missing hand, replaced by a hook.) The cold-hearted banker, in Its a Wonderful Life, is portrayed in a wheelchair. These kind of images and symbols underscore some of society's deepest fears and prejudices about disabilities. Take the case of Lenny, in "Of Mice and Men," Lenny was unaware of his own strength. This image of the mentally retarded might make some people opposed to a group home or supported living in their community.
One of the most beloved symbols of disability is the poster child. Most Americans equate this with a cute, courageous child. But to the disabled, it is one of the most loathed symbols of disability. It symbolizes, pity, fear, and oppression.
The poster child says to us that its not OK to be disabled. It plays on our fears: donate or it could happen to you or your loved ones. In 1956 Cyndi Jones was picked as the March of Dimes poster child. Jones remembers feeling like Cinderella, and believed she was special. She was flown out to New York, given a frilly dress, and had her picture taken for the poster. In a few months, when Jones started first grade, her Cinderella dream would come crashing down, shattering her self-esteem for years to come. Her teacher passed out flyers about the rise in polio cases, so parents would get their children immunized against this deadly virus. On the flyer were two photos: one was of two children skipping happily through a field, and over that picture was the word, THIS. The other photo was a picture of Jones leaning on her crutches, and over her picture was the words, NOT THIS. Jones, horrified and embarrassed, hoped her classmates didn't recognize her, but of course they did. At that moment Jones knew; she wasn't special, she was something to be feared. (Shapiro p.12).
Another symbol of disability is the "tin cup", portrayed in movies, with the blind, beggars and homeless, wanting a hand out. If we see a person in an airport in a wheelchair holding a cup, do we see a lawyer waiting for a flight, or a beggar wanting a hand out? Not long ago, a well respected lawyer was drinking coffee before her flight. She was dressed in her business suit, had her brief case, and was seated in her wheelchair. Another passenger rushed by and threw some change into the lawyers cup, spilling coffee onto her business suit. The passenger, looked embarrassed, said nothing and hurried off. What caused the passer by to toss money in the women's cup, with out any conversation with the women? Its our image of the disabled, being dependent, the symbols that we relate to in movies and literature, that has given us this false picture.
Yet another symbol that is seen as deeply moving by Americans, and oppressive by the disabled is the inspirational disabled person, - known as "supercrips" by the disability community. The disability rights movement discards the notion that a disabled person needs to be a super achiever or courageous, since most are just trying to lead normal lives and not impress anyone.
The "supercrip" is the flipside of the pitiful poster child, which implies a person with a disability deserves pity instead of respect, until he or she proves themselves by some physical feat. Americans love to glorify the "supercrip" in television or in the press. The disability rights movement agree that achievements deserve recognition, but most disabled have small challenges that they overcome each day, such as: education, finding a bus or working.
ADAPT - American Disabled for Accessible Public Transit, was founded in 1983. For the disabled riding a bus, is the basic symbol of equality; being able to visit a friend, go to work, being independent. ADAPT, made it a priority to get all city buses equipped with lifts. As Blacks fought for the right to sit in the front of the bus, the disabled are fighting just for the right to get on the bus.
Recently advertisers have been breaking stereotypes and shattering myths of dependency with new positive portrayals of disabled in their commercials and print ads. This wasn't done out of some altruistic motives, but a realization that the disabled are also consumers. Dupont has a commercial where a Vietnam veteran, Bill Denby,plays an aggressive game of basketball with two prosthetic legs. Budweiser shows a wheelchair marathoner with his fit, blond girlfriend; the assumption being the disabled man has sexual function. Kmart, Toyota, McDonalds, Levi and many others are using the disabled in their ads, mixing disabled with non-disabled people.
Most recent movies and television shows have integrated the disabled into their plot lines. Most are positive portrayals such as: "Reasonable Doubts," with Marlee Matlin; "Life Goes On," with Corky; and "L.A. Law," with Benny. Marlee is deaf, Corky has Downs Syndrome, but Benny is not mentally retarded in real life). Several movies have had positive influences, one such movie is the life story of Christy Brown, a man with cerebral palsy, called "My Left Foot."
All three perspectives have their place in describing, analyzing, researching and educating us about the culture, struggles, and quality of life for the disabled. With new research and medical breakthroughs in gene therapy and disease states, many new questions can be answered as well as new ones asked. Studying the sources of disabilities, and understanding the limits and effects of some mental and physical disabilities, will help break down the barriers and walls. Understanding what the needs of a person with a disability are, the better we can make life accessible and include them in our communities. The structural functional perspective is one of constant changes, especially in the lives of the disabled. New legislation on the books, insuring education, as well as equal access, has put the status of the disabled as changing and rising. Their own self-perception has changed, along with their aspirations and goals; no longer will these people be left behind in society, in institutions,and nursing homes, but with self-advocacy, they will pursue their dreams. Many of the symbols of the disabled are changing. Once, the telethons, which used children to get pity and donations, are now using different approaches that don't offend the disabled. Fences that once surrounded institutions, and group homes are being torn down. These fences were barriers to inclusion. Not only did the fences keep the disabled in, they also kept other people out. The fence was a symbol that said there was something behind the fence that needed to be there, to protect the public.
To answer the question at the beginning of the paper: are the disabled living in our communities, with real jobs and real friends, having freedom of choice? The answer is: some are, with the help of supported living programs, and the independent movement. This is usually at a much lower cost than institutional care.(Weissert, Lesnick, Musliner and Foley, p.1337). Some disabled still live in institutions, or group homes, but many communities are actively pursuing inclusive schools and inclusive communities. Many of the shelter workshops are giving way to real jobs, with real pay; some work with job coaches, others do not. The disabled have the right to be included in our communities, with equal access to jobs and transportation and education. All people, no matter how debilitated or disabled, are deserving of dignity and respect.
ADA - The Americans Disability Act.
ADAPT American Disabled for Accessible Public Transit.
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