An Examination of the Evolution and Role of Persons with Disabilities within American Society Mike Thompson -- April 5, 1994 INTRODUCTION: Culture, from an anthropological perspective, can be viewed as an integrated pattern of human knowledge, belief, and behavior which is transmitted to succeeding generations. The culture of the United States of America is highly diversified and is influenced by numerous subgroups, each with a variety of opinions, lifestyles, values, interests, experiences, and behaviors. Some of these subgroups have been categorized according to ethnicity, social and economic class, and/or religious order. Equally important, are subgroups which are cross sections of any or all of the groups just mentioned. For example, these other subgroups might be categorized according to gender, political affiliation, athletic ability, or intelligence. The boundaries are anything but clear, and an individual may fit into many of these or other categories. Nevertheless, there does seem to be a common "core" which represents American culture in general. As Americans, we have pursued common goals during historical periods that have become part of our past, and we strive for common causes today. We have a creed which states that we are all equal and that no one shall be disadvantaged by their race, religion or color. The Declaration of Independence and the American Constitution lay out in detail, many of our Ideals (Spindler 1990). If there is a "core" or mainstream American culture of which various combinations of subgroups are a part, then we can certainly better understand who we are as Americans by understanding the relationship between that "core" and these various subgroups. The focus of this paper will be on the evolution and role of the subgroup of persons with disabilities within American society. It will examine the relationship between ideational systems (people's perceptions and stereotypes of disabilities) and the social structure (the social roles and relationships) of people with disabilities within American culture in both the past and the present. Overview of the Characteristics of Persons with Disabilities within American Society: The subgroup of people with disabilities is in fact, a cross section of American society in general. People with disabilities include both men and women from every ethnic group, religious background, political party, income bracket, and educational background. This particular subgroup has members who range in athletic ability from none to exceptional. It is made up of people of the highest integrity and moral character to the most hardened criminals. The distinguishing characteristic of the group is that members have some type of disability. Definitions for disability vary slightly under different laws, however, generally people are considered to have a disability if they: 1) Have a physical or mental impairment which substantially limits one or more major life activity(ies), such as walking, talking, seeing, hearing, self care, learning, or working; or 2) Have a record of having had an impairment such as a history of cancer, or past mental illness; or 3) Are regarded by others as having an impairment, for example, a facial scar, limp or positive HIV test. (Leeds, 1992) Some examples of conditions involving disabilities include Absence of Arm(s)/Hand(s)/Leg(s), Blindness, Cancer, Cerebral Palsy, Diabetes, Emphysema, Epilepsy, Hearing Impairments, Heart Disease, Hypertension, Intervertebral Disk Disorders, Learning Disorders, Mental Disorders, Multiple Sclerosis, Nervous Disorders, Orthopedic Impairments, Osteomyelitis/Bone Disorders, Paralysis in Other Sites (Complete/Partial), Parkinson's disease, and Visual Impairments . According to the National Center for Health Statistics, over 34 million Americans have disabilities. This figure constitutes roughly 20 percent of the population and is the largest and most diverse minority group in the country which is rapidly entering (or re-entering) the mainstream of society (Leeds, 1992). More than 14 percent of the civilian non-institutionalized population, are limited in their activity due to long-term disability. Approximately 2 million more people live in a variety of long-term care institutional settings, including 1.5 million in nursing and related-care homes and nearly a quarter million in mental health facilities (Leads, 1992). RESEARCH: Discussion of Anthropological Research on American Culture and Persons with Disabilities: George and Louise Spindler began doing field research as anthropologists in America in 1948, and their work continues today. The Spindlers attempt to define American Culture through a series of concerns phrased as value orientations which they refer to as "cultural dialogue" which expresses oppositions as well as agreements. These expressions occur in public speech and behavior, in editorials, campaign speeches, classrooms, the mass media, music and literature, as well as churches and religious ideology (Spindler, 1990). Information on persons with disabilities comes from a broad range of sources including anthropological, historical, sociological, and psychological, Census data, government documents, and disability organization publications. Harold E. Yuker has conducted pioneering and extensive research on attitudes toward persons with disabilities. In addition, Ervinl Goffman relates the concept of stigma to the role of persons with disabilities in society. Historical Background of the role of Persons with Disabilities within American Society: "As soon as our human ancestors fashioned clubs and axes to facilitate hunting and gathering, others must have designed crutches and canes to compensate for physical disabilities" (Coombs 1991). In fact, the archaeological record contains evidence that people with disabilities played a role in societies as early as the Neanderthals (Trinkaus, 1978). Cultural attitudes toward people with disabilities have been influenced directly and indirectly by philosophies within various cultures through time. For example, early Greek and Roman philosophers including Plato and Aristotle stressed perfection. The term "stigma" originated with the Greeks to refer to bodily signs designed to expose something unusual or bad about the status of the signifier. These signs were cut or burnt into the body and advertised that the bearer was a blemished person, ritually polluted, to be avoided, especially in public places (Goffman 1963). Late medieval Christianity embraced the Platonic philosophy of fixity, where everything in the universe shared a metaphysical essence with every other thing of the same type--different things did not and never could. This fixed, stable view of an unchanging universe implied that variation of type was degenerative and superficial. People with disabilities were certainly a variation from the "norm". In the 1690s, John Ray was examining biological conditions on Earth and concluded that the forms of all things are immutable and static. By the 1850s, this concept of an unchanging universe had long since been replaced by theories of both biological and cultural progression. During this time, Hubert Spencer was responsible for the concept of "Survival of the Fittest". He concluded that everything in the universe progresses through time: That progress was the result of competition between similar forms; The more advanced forms would survive, while the less advanced would be defeated. He believed in "Laissez faire" Capitalism where society should not help the less advanced forms; that humanity as a whole would be better off if we simply let nature take its course. In fact, the concepts of eugenics and Social Engineering were being pressed in the late 1800's or early 1900's to give those who are superior a better chance to survive over the inferior, and therefore, promote the idea of a "better" human being. The original model for some state laws was put forth in 1922 by Laughlin who recommended sterilization for all of the social undesirables. In this list, he included mentally ill and deviants, but then went on to include people who were blind, deaf, and hearing impaired. These state laws permit mandatory sterilization of certain persons and are generally justified under what are called "state police powers", i.e., providing for the health, safety and general welfare of citizenry. (Don Waugh Executive Chairperson, Disabled Students Association (Alumni) SUNY Potsdam College waugh18@snypotva.bitnet AXSLIB-L list Tue, 7 Dec 1993 16:01:00 EDT) Over the course of this century, the role of people with disabilities within American society has undergone a fundamental shift in focus. They have gone from a state of being abandoned, exterminated, or left to fend for themselves as beggars, to being institutionalized and placed in sheltered workshops (Jernigan, 1973) with a humanitarian spirit which emerged to provide them with paternalistic assistance. As it became clear that paternalism itself contributed to their powerlessness and disability, they followed the lead of other interest groups in demanding that the social and economic structure be made more equally accessible. "What people with disabilities were asking society for was not so much humanitarian assistance as it was human empowerment" (Coombs, 1991). An examination of legislation concerning persons with disabilities provides a chronology of socio-cultural and economic changes over time. These legislative acts mark major turning points, whereby, the role of Americans with disabilities is evolving, as human rights are officially recognized and ideational systems are modified. Beginning in 1917, the Smith-Hughes Vocational Act marked the creation of the Department Vocational Rehabilitation in the United States. In 1918, the Smith-Sears Act or Soldiers Rehabilitation Act (P.L. 178) addressed the issues of disabled American soldiers returning from World War I by providing money for vocational rehabilitation training for a ten year period. The Smith-Fess Act (P.L. 236) of 1920 provided federally based matching funds to states for Rehabilitation training for an additional four years. The Social Security Act of 1935 made Vocational Rehabilitation permanent and started off with a budget of about two million dollars. In 1936, the Randolf Sheppard Act targeted specific disabilities for various rehabilitation provisions. The 1938 Wagner-O'Day Act Created Workshop supported employment, giving government preference to purchasing products made by blind workers. World War II was a source for a second major increase in the number of people with disabilities. Concurrently, significant medical advancements were taking place at this time which made it possible for people to survive longer even with sever disabilities. In 1943, the Barden-Lafollette Act included mental illness and mental retardation. Mental disorders resulting from war atrocities and shell shock were recognized with respect to rehabilitation provisions. The Vocational Rehabilitation Act of 1954 (P.L. 565) provided training and facilities for Vocational Rehabilitation professionals. The Vocational Rehabilitation Act of 1965 (P.L. 333) provided for a wider range of rehabilitation including services to prison inmates and to the poor. By 1973 there were several rehabilitation acts and amendments including sections 501, 502, 503, 504 which helped make rehabilitation more of a partnership between the various federal agencies and their clients as opposed to a paternalistic relationship. They also first addressed the issues of architectural barriers in federal public buildings. In 1975, the Education for all Handicapped Children Act (P.L. 94-142) was enacted to provide education in the least restrictive environment. This law guaranteed children with disabilities the right to attend public school. By 1990, landmark legislation was passed in the form of the Americans with disabilities act which prohibits discrimination against persons with disabilities in education, employment, services, and public transportation and facilities. When President Bush signed in to law the Americans With Disabilities Act--the world's first comprehensive civil rights law for people with disabilities--in front of 3,000 people on the White House Lawn on July 26, 1990, the event represented an historical benchmark and a milestone in America's commitment to full and equal opportunity for all of its citizens. The President's emphatic directive on that day--"Let the shameful walls of exclusion finally come tumbling down"--neatly encapsulated the simple yet long overdue message of the ADA: that 43 million Americans with disabilities are full-fledged citizens and as such are entitled to legal protections that ensure them equal opportunity and access to the mainstream of American life. Enactment of the ADA reflects the embodiment in public policy of deeply held American ideals which treasure the contributions which individuals can make when free from arbitrary, unjust, or outmoded societal attitudes and practices that prevent the realization of their potential. The ADA reflects a recognition that the surest path to America's continued vitality, strength and vibrancy is through the full realization of the contributions of all of its citizens (Preamble from EEOC Americans With Disabilities Handbook, 1993). The Americans With Disabilities Act makes a formal statement concerning the role of persons with disabilities within society. However, many of the earlier philosophies are very much ingrained within our culture. The reality of how people with disabilities fit in to modern American society is somewhat varied. Consequently, there are a number of common social problems. What are these common concerns and what aspects of American culture have caused them to exist? Critical Issues Facing Persons with Disabilities within American Society Today: People with disabilities are seeking higher standards of living, housing and public accommodations, full employment and conditions of economic and social progress and development. Critical issues involve human rights and fundamental freedoms, the dignity and worth of the human person and social justice. In a presentation before the Senate Committee on Labor and Human Resources, June 23, 1989, the concern was stated that "persons with disabilities all too often are not allowed to participate because of stereotypical notions held by others in society -- notions that have, in large measure, been created by ignorance and maintained by fear." Some people predict a continuing role of economic dependance and second-class citizenship for people with disabilities, while others predict and strive for progress toward equality, independence, and full membership in society (Jernigan, 1973). Employment: Roughly two-thirds of "working-age" (ages 16 and older) people with disabilities -- tens of millions of Americans -- are unemployed. This staggering figure represents the highest rate of joblessness among any sizable minority in this country. According to 1988 figures, distinctions in employment by disability status were far more prevalent for occupations than for industries. People with a disability were far less likely to be employed in managerial and professional specialty positions than their counterparts without a disability. Both men and women with a disability were more likely to work as operators, laborers, and fabricators and in service occupations than their counterparts with no disability. Men and women with a disability were somewhat less likely to be employed in technical, sales, and administrative support positions than those with no disability (Ficke, 1992). Education: Over 4.3 million students in the public school system have been identified as having disabilities and are guaranteed legal rights to a public education. There are over 1.5 million colleges students with disabilities on our campuses. Based on demographics alone we can expect the numbers of individuals with disabilities participating in higher education to continue to rise over the next ten year period (Ficke, 1992). Access to classrooms, equipment, facilities, services and materials will be among the leading concerns. Attitudes: Perhaps one of the most critical issues facing persons with disabilities are the attitudes of individuals within the mainstream culture toward them. These attitudes can affect personal and professional relationships as well as influence policy, and laws concerning integration and accessibility issues. According to (Yuker, 1988) attitudes toward persons with disabilities are shaped by language and terminology, pity, mindless and mindful perception, and treatment of disabilities in television, films, and media. It was not until 1984 when Levi Strauss made a commercial for 501c Jeans with a person in a wheelchair that the disabled community was even thought of as a market. Attitudes are also shaped by religious views. For example, some people hold convictions that a disability is moral punishment for sin. An acquired cultural value based on parental emphasis on importance of health and normality to children is perhaps one of the less direct ways in which our attitudes are formed. Society establishes the means of categorizing persons and the complement of attributes felt to be ordinary and natural for members of these categories (Goffman, 1963,2). As we encounter a person with a disability, one of the most common reactions is to notice that something is different, and wonder "What's wrong with that person?" According to (Yuker, 1988), there exists a condition known as the fundamental negative bias. "It is important because it steers perception, thought and feeling along negative lines to such a degree that positives remain hidden. It is a powerful source of prejudice that ill serves those who are already disadvantaged" (Yuker, 1988). The basic proposition is that if something that is observed stands out sufficiently, and if it is regarded as negative, and if its context is vague or sparse, then the negative value assigned to the object of observation will be a major factor in guiding perception, thinking and feeling to its negative character (Yuker, 1988). Thus, the reaction "What's wrong with that person?" indicates that the observed disability by nature is wrong and a negative attribute. Another example of attitudes toward persons with disabilities is referred to by (Wright 1975), as the "Fortune Phenomena". This concept shows how easily "devalued" groups are regarded as unfortunate, despite the fact that the members of those groups do not view themselves as unfortunate. In a relationship with strangers, there is not much to go on other than distinct characteristics that are observed. Therefore, in sparse context, a disability becomes the outstanding characteristic. A study cited by (Yuker, 1988) shows that the fundamental negative bias plays an important role in terms of familiarity. Friends who have disabilities are rated as being much more fortunate than strangers with the same disabilities. Similarly, People with disabilities indicated that strangers regarded them as being much more unfortunate than friends did (Yuker 1988, 11). Indications of Cultural Attitudes Concerning Disabilities: Our literature and music are aspects of our culture which both reflect and influence what we are like as a society. People with disabilities are often referred to as "Blind", "Deaf", and/or "Lame". If we examine quotations from classic literature, and lyrics from popular and folk music, we can find numerous references to the terms blind, deaf, and lame. Often these references use the terms blind, deaf, or lame in a less than desirable and negative context. For example, some quotations from classic literature include: THE BIBLE NEW TESTAMENT. ST. MATTHEW They be blind leaders of the blind. And if the blind lead the blind, both shall fall into the ditch. ST. LUKE Go out quickly into the streets and lanes of the city, and bring in hither the poor, and the maimed, and the halt, and the blind. LORD BOWEN 1835-1894 On a metaphysician: A blind man in a dark room--looking for a black hat which isn't there. ALFRED, LORD TENNYSON 1809-1892 Where blind and naked Ignorance Delivers brawling judgments, unashamed, On all things all day long. ARTHUR WALEY 1889-1966 What is hard today is to censor one's own thoughts--To sit by and see the blind man On the sightless horse, riding into the bottomless abyss. H.G. WELLS 1866-1946 In the Country of the Blind the One-eyed Man is King. NICHOLAS BRETON 1545?-1626? He is as deaf as a door. PERCY BYSSHE SHELLEY 1792-1822 Our Adonais has drunk poison--oh! What deaf and viperous murderer could crown Life's early cup with such a draught of woe? JONATHAN SWIFT 1667-1745 They never would hear, But turn the deaf ear, As a matter they had no concern in. WILLIAM COWPER 1731-1800 Beggars invention and makes fancy lame. WILLIAM SHAKESPEARE 1564-1616 THE TEMPEST When they will not give a doit to relieve a lame beggar, they will lay out ten to see a dead Indian. Music: The terms blind, deaf, and lame are frequently used in popular and folk song lyrics. However, blindness is generally equated with ignorance and foolishness. It is described by blackness and darkness. Feelings most commonly affiliated with blindness are fear, apathy, bewilderment, confusion, guilt, hate, hopelessness, loneliness, pity, and stupidity. Actions involving the word blind include fumbling, groping, and stumbling. The word deaf is generally affiliated with an uncaring attitude and the word lame is used to mean undesirable in popular and folk music. In order to illustrate this point, the following lines were extracted from a collection of popular and folk song lyrics from ftp.uwp.edu:/pub/music/lyrics. The list is over 2000 lines long and contains lines with the words blind, deaf, and lame. Here are a few examples: Blind: ... Eyes of blind ignorance ... So blind, it's ignorance you wear ... Soon I shall be taken down, drowned in blind ignorance. ... But I'm as blind as a fool can be ... Blind fools who see only what they tell you to ... Blinded by passion, you foolishly let someone in ... Fools are blind, unwilling to accept, decline... ... How could I have been so foolish, how could I be so blind ... I was a fool to be blind to the things you do ... Like a hurt lost and blinded fool ... Oh they're kinda close, though only a blind crazy fool would think ... Well you blind old fool, your children are gone, ... You blind fool, you drunken fool, can't you never see? Deaf: ... But the old man was deaf to her cries, ... Can you turn a deaf ear to my call ... If I turn a deaf ear to the thunder in the sky ... were deaf to our own demands Lame: ... For lame I've been, since I was born, and so I'm forced to beg ... Your wasting your tongue with lame excuses, ... The little lame child cried aloud in her fright, ... There was poor old Jess, the old lame cuss CONCLUSION: For as long as humans have existed, some percentage of people within the various populations have been characterized by disabilities. A disability is by nature, a deviation from what is considered to be normal. Structures within societies are designed to accommodate people and things that are normal. Consequently, inequitable conditions will exist for the disabled minority unless accommodations are made. Culture will determine the nature and extent of these accommodations as well as the relationships between the normal core population and the disabled minority for any given society. The mainstream core American cultural is not the product or possession of any particular class or ethnic group. The value orientations and their oppositions that constitute the mainstream version of the dialogue have been formed by history, and that history defined White Anglo-Saxon, North European, Protestant culture as a primary cultural force in the development of American culture. These values are there for anyone to use, and they are being used (Spindler, 1990). In America, we have seen the most dramatic change in these relationships within the last century. The role of persons with disabilities within American society has evolved from one of isolation where people belonging to the disabled minority were forced to fend for themselves as beggars, to one of being institutionalized and provided for, to one of recognition as citizens. The aspiration of this minority is one of equality. According to (Spindler, 1990), many of the current social problems in America are the result of inequity. To illustrate this point, he makes the following arguments: Disparity between the poisonous condition of the inner city and the affluence of the suburbs and high-rise apartments, between the mainstream rich and the minority poor, between Black and White, corrupts the dialogue of achievement, success, hard work, honesty, individualism, optimism, independence, and equality. The dialogue of equality, honesty, concern for others, is still alive, but has lost ground to the opposition, the dialogue of extreme self interest, within the total complex of values and motivations. The underlying problem is individualistic, self oriented success, the successful drive for wealth by individuals uncommitted to public good. The drive for material success is obsessive. Equity is not created only from the top down. Equity is achieved as well as legislated and managed (Spindler, 1990). Examples presented in this paper illustrate that the same type of disparity exists between the disabled minority and mainstream American culture as for ethnic minorities and that same "core" culture. (Spindler, 1990) predicts that we can expect to see increasing conflicts among ethnic groups and between ethnic groups and the "non-ethnic" mainstream. Ethnic groups will compete for their share of the benefits. Middle and upper class mainstream Americans will resent incursions into their socio-economic and cultural territory as the economy continues to express the uncertainties of the modern world. However, Americans are attempting to do what no one else has done in the pursuit of liberty, justice and equal opportunity for all citizens. The dialogue is a process not a fixed entity; there is continuity and change. Inequality in the distribution of power, wealth, and opportunity in our society has been dramatic and destructive. (Spindler 1990 ,167) History shows that progress is being made concerning issues of integration and equality for persons with disabilities. However, it is obvious by the general lack of accessible public services and facilities, and educational and employment opportunities, that the role of people with disabilities is currently anything but equal. Even so, we can be reminded that there are certain exceptions to that case as we realize that people with disabilities have held prominent positions within our society. For example, presidents Abraham Lincoln (chronic disease), Woodrow Wilson (learning disability), (Franklin D. Roosevelt (polio), and John F. Kennedy (Addison's disease) all had conditions which would qualify them as being disabled under our current legal definitions. Other prominent people with disabilities include Thomas Edison and Albert Einstein. More recent notable figures include Cher, Whoopie Goldberg, Tom Cruise, Robin WIlliams, and Charles Schwab. The list goes on, however, these people are the exception and not the rule as far as the roles of people with disabilities within American Society. 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