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CHAPTER 1
Disability, Public Policy, and Implementation
Citizens who experience mental or physical disability have traditionally represented a hidden minority in American society. Literally through institutionalization, and subtly through negative attitudes and treatment, persons with disabilities have been isolated from the social mainstream and denied the benefits and opportunities available to nondisabled persons. This exclusion results, in part, from limitations in mobility, dexterity, and communication imposed by disabling conditions. But even greater barriers to the opportunities of modern society have been imposed by nonhandicapped persons, who have feared disabled people and have been preoccupied with that group's inabilities and problems rather than their capabilities. America's citizens and institutions — both public and private — have systematically ignored the needs of disabled persons when designing facilities, employment practices, educational programs, and the delivery of public services.
Disabled citizens no longer accept the barriers that have excluded them from consuming the benefits and opportunities that are so plentiful in American life. They are actively engaged in efforts on many fronts to overcome obstacles that impede access to the benefits that others take for granted. Some victories have been small in scope but significant in impact; the proliferation of specially designated parking places for handicapped persons is one example. Other efforts have been more far-reaching and represent a long-term strategy to remove limitations imposed on persons with disabilities. Relevant here are state and federal laws to protect the rights of disabled citizens in areas ranging from access to public buildings to accommodations in employment and public transportation.
This book is about people with disabilities and their struggle to achieve equal opportunity in America. Primary attention is given to their efforts to affect the development and implementation of public policies to advance and protect their own rights and opportunities. The book is also about policy implementation, that is, about the political and administrative processes involved in carrying public laws into action. Public laws are in no way self-enforcing; instead, they must be executed by a wide variety of actors working in and through a number of institutional arenas. Understanding the dynamic process by which laws are translated into administrative guidelines and are then enforced is the key to understanding successes and dilemmas associated with implementing disability rights laws.
Implementation is a complex political and administrative process, which conceptually covers the period from legislative passage through policy evaluation. This process can be broken into components that are distinct conceptually but interact in practice. Policy refinement refers to those activities aimed at clarifying procedures, processes, and guidelines relevant to the administration of programs. Public laws set the statutory framework for implementation, but this broad policy outline leaves many questions about execution unanswered. For this reason, executive agencies are required to refine and clarify policy objectives and practices as a precursor to effective implementation efforts.
A second component of implementation is policy diffusion, the communication of the refined objectives and practices to the administrative agents charged with providing services, benefits, or protections. The outcomes of implementation are likely to closely match program objectives only if administrative agents understand policy intentions and the strategies and mechanisms selected for implementation. Diffusion is particularly important in an intergovernmental system, such as that of the United States, where both political and administrative authorities are widely distributed through thousands of public and private institutions.
Policy execution is the final component and represents the transformation activities performed by administrative agents for the purpose of distributing services, benefits, and regulatory protections. It is at this level that public and private agents interact with citizens, corporations, or other governments in an effort to achieve implementation objectives. Studies that focus on policy execution tend to take a "bottom up" approach to analysis of implementation, analyzing transformation efforts and influences on those efforts in order to understand how programs work to produce outcomes.
The analysis of disability rights policy pursued in this book will place heavy focus on the policy refinement phase of implementation. The reason for this emphasis is empirically based: in the roughly twenty-year period since the passage of disability rights laws by the federal government, the most prominent activity has been the development and refinement of guidelines, criteria, and obligations for implementation. Many of the laws raised more questions about implementation practices than they answered; they were heavily symbolic and thus imprecise as to strategies and objectives for policy execution. Public sector action to protect and advance the rights of handicapped persons is a relatively new responsibility, and as a consequence, significant effort has been consumed in policy refinement activities. This study will consider relevant issues of policy diffusion and execution where they are applicable, but considering the nature of implementation to date, most experience relates to policy refinement.
The fundamental question underlying this study of disability rights is: How did the federal government develop and refine policy objectives and strategies to carry out the legal mandates set in disability rights laws? The unfolding story presented in this book will document how the agencies of the federal government wrestled with controversial and confounding dilemmas and trade-offs in devising policies for implementation. Such policy development has not taken place in a vacuum; instead, it resulted from the frequent interactions of interested parties who wished to affect policy directions and the flow of program costs and benefits. The dynamic interactions among interested parties, in the context of institutional arenas, will be examined as a means to explain the development of implementation policies.
To understand the development and implementation of public policies to advance the rights and opportunities of persons with disability, it is necessary to consider the extent and sources of disabling conditions, the social and political position of disabled persons, and their long struggle to achieve equal social, political, and economic status in American society.
Disability: Diversity in Sources and Impacts
Disabilities result from a large variety of sources, including birth defects; occupational, traffic, and other accidents; drug abuse; military action; mental illness; and even the natural process of aging. When one reviews the extent and types of disabling conditions, it becomes apparent that this minority, while often hidden, is not small. Statistics to determine the number of disabled Americans demonstrate substantial range, depending upon the definition of disability used and the validity of measurement techniques.
Figures from several sources document the extent and costs of disability in America. The White House Conference on Handicapped Individuals (1977) estimated that as many as thirty-five million Americans experience some form of physical or mental disability. From the perspective of employment, a 1978 survey estimated that, of 127 million adults of working age, 21.9 million (17.2 percent) considered themselves as having work limitations resulting from health problems, and 11 million reported severe disabilities (Lando, Cutler, and Gamber 1982, v). And from the perspective of disability costs, the Institute for Rehabilitation and Disability Management reported that in 1981 the cost of disability payments and health care services for handicapped Americans totaled over $184 billion — $114 billion for health care and $70.6 billion for wage replacement (Schwartz 1984).
These figures suggest that disability is not an isolated phenomenon but instead is prevalent throughout society. With a broad definition, one can estimate that as much as twenty to twenty-five percent of Americans experience some form of mental or physical handicap. These data also indicate substantial diversity in the nature and source of disability. Handicapped people are by no means a homogeneous group; they differ markedly in extent of impairment and range of potential abilities. This point is often missed by nondisabled persons, who tend to lump most types of disability into a single "handicapped" category. This tendency is not only frustrating to disabled people's sense of individuality but is also an impediment to development of enlightened policies to expand the opportunities afforded to handicapped persons.
The Hidden Minority
Persons with disabilities have been a neglected minority in American society, isolated from the mainstream. Those who have been able to succeed have generally been able to do so only by masking their disability. Certainly this was true of Franklin Roosevelt who, despite being confined to a wheelchair, attained the presidency. His political success was achieved, however, largely by downplaying and hiding his disabling condition rather than through any sense of enlightened understanding of the potential abilities possessed by disabled persons.
Disability has often been viewed as a form of social stigma, generating reactions of pity, helplessness, distrust, uneasiness, and even fear:
The attitudes we normals have toward a person with a stigma, and the actions we take in regard to him, are well known, since these responses are what benevolent social action is designed to soften and ameliorate. By definition, of course, we believe the person with a stigma is not quite human. On this assumption, we exercise varieties of discrimination, through which we effectively, if often unthinkingly, reduce his life chances. (Goffman 1963, 5)
Nonhandicapped people generally do not understand the problems and realities in the lives of persons with mental and physical disabilities. Instead, they tend to have views of handicapped persons that are unrealistic, negative, and paternalistic. Americans often desire to help handicapped persons yet, at the same time, see those persons as "different" and not equal to others in society.
Certain classes of disability, including drug abuse, alcoholism, and mental retardation, have frequently been misunderstood and viewed in a negative light. Until the past few decades, institutionalization was the primary form of treatment for mental illness. Once placed in institutions, mentally disabled persons were often sterilized against their own will, a practice that continued well into this century (Burgdorf and Burgdorf 1977). Only recently have noninstitutional forms of treatment, such as halfway houses and sheltered workshops, been made available to those with serious mental disabilities.
Many analysts contend that discrimination is rooted in inaccurate and limited conceptions, or paradigms, of disability and the needs and potentialities of disabled individuals:
For many generations mainstream society's attempts to deal humanely with the disabled and the professional's vision of the nature of disability have been shaped by a host of mutually reinforcing paradigms. Starting from different intellectual premises, these frameworks have converged to produce a set of flawed assessments of the disabled person's needs and the place of disabled in American society. Indeed, despite their condemnations of prejudice toward the disabled, these models share far more with longstanding myths and stereotypes about handicaps than has generally been recognized. (Gliedman and Roth 1980, 17)
Breaking down these paradigmatic conceptions has been one of the most difficult tasks of handicapped rights advocates.
Researchers have examined the origins of social attitudes about disability and handicapped persons and have found that negative and inaccurate perceptions arise from many sources. One source has been literary and media depictions of disabled people. Thurer (1981) describes how literary characters with disabilities, from Captain Hook to the Hunchback of Notre Dame to Captain Ahab, have been depicted as evil, vengeful, and freakish. In a review of other research studies, Elliott and Byrd (1982) reach a similar conclusion about the negative images of disabled persons as portrayed in literature and television. One analyst sums up the literary depiction of handicapped persons as narrow and typical of society's purposeful neglect of and distaste for disability: "Handicapped people are not especially important to writers. ... In the area of the handicapped it turns out that writers have not so much led as reflected what they have found around them, and what they have found around them, of course, has been general neglect" (Trautmann 1979, 1).
The development of negative and unrealistic attitudes toward persons with handicaps is attributed to other sources besides literature and the media. Livneh (1982) presents a thorough review of studies that examine the formation of attitudes toward handicapped people. Among the sources of negative attitudes described are social customs and norms, child-rearing practices, and psychological fears and anxieties. Livneh (1982, 344) argues that these attitudes are "learned and conditioned over many years," and that efforts to change them require substantial effort.
In their analysis of attitudes toward disability, Bogdan and Biklen (1981) argue that negative views lead to discriminating attitudes against handicapped persons, or "handicapism," similar in nature to racism or sexism. In a provocative article, Kriegel (1969, 421) makes a similar connection between racial discrimination and prevailing public attitudes toward persons with disability, and the struggle of both groups to achieve a more equal position in society: "The condition of the Negro is imposed from outside. Obviously, this is not altogether true of the cripple. But while his physical condition is not imposed from outside, the way in which he exists in the world is. His relationship to the community is, by and large, dependent upon the special sufferance the community accords him."
Straus (1966, 5) suggests that negative views of handicapped persons result from fears and anxieties of nonhandicapped individuals about their own vulnerability to disability: "Such anxieties may well reflect the distressing thought that we too are vulnerable, a need to avoid identification with the disabled, an inability to tolerate helplessness, discomfort with the ambiguities which are often associated with disability, and even the embarrassment that many people feel because they do not know what to say or do in the presence of those whose condition makes them feel anxious." These fears and anxieties about interaction with disabled persons are commonplace, often magnified by unrealistic portrayals and by social and physical barriers that reduce the frequency of interpersonal contacts between disabled and unimpaired persons.
Researchers have considered the extent as well as the source of public attitudes toward handicapped people. English (1971, 2), in reviewing empirical research on this question, argues that "the attitudes of the general public toward physically disabled persons in general suggest that nearly half of the non-disabled public have primarily negative attitudes toward physically disabled persons." Other research shows these negative attitudes to extend to many aspects of the lives of disabled persons (Siller et al. 1967; Nathanson 1980). For example, a study of college students by Having and Meyerson (1981) showed that otherwise sexually liberated college students had disapproving attitudes about the sexual activity of disabled persons.
Public attitudes about and perceptions of disabled individuals arise, then, from many sources, ranging from personal fears and anxieties to inaccurate media and literary portrayals. These attitudes appear to be deeply based and difficult to change. Their impact cannot be overstated, for it is clear that these attitudes have generated behaviors and decisions that have limited the opportunities and life-styles of disabled persons. Often the most damaging effects have arisen from prejudices against disabled persons and misunderstandings about their plights and potential abilities. This point is made clear by Frank Bowe (1978, viii), a tireless advocate for disabled citizens:
We have created an image of disabled people that is perhaps the greatest barrier they face. We see the disability — the chrome and the leather, the guide dog, the hearing aid, the crutches — and look the other way. Just as we cannot seem to see the man in the policeman, so imposing are the uniform and the cultural expectations that go with it, so we cannot see the woman in the wheelchair. We do not see, nor do we look to find, her abilities, interests, and desires.
(Continues…)
Excerpted from "Disability, Civil Rights, and Public Policy"
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Copyright © 1989 University of Alabama Press.
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