Disabled Rights

American Disability Policy and the Fight for Equality

Jacqueline Vaughn Switzer, Jacqueline Vaughn Switzer

• Publisher: Georgetown University Press
• Year: 2003
• ISBN:
  9781589013100
• Topic: Politics & International Relations
• Subtopic: Public Policy
• Index: Politics & International Relations

"Freedom and Justice for all" is a phrase that can have a hollow ring for many members of the disability community in the United States. Jacqueline Vaughn Switzer gives us a comprehensive introduction to and overview of U.S. disability policy in all facets of society, including education, the workplace, and social integration. Disabled Rights provides an interdisciplinary approach to the history and politics of the disability rights movement and assesses the creation and implementation, successes and failures of the 1990 Americans with Disabilities Act (ADA) by federal, state and local governments.

Disabled Rights explains how people with disabilities have been treated from a social, legal, and political perspective in the United States. With an objective and straightforward approach, Switzer identifies the programs and laws that have been enacted in the past fifty years and how they have affected the lives of people with disabilities. She raises questions about Congressional intent in passing the ADA, the evolution and fragmentation of the disability rights movement, and the current status of disabled people in the U.S.

Illustrating the shift of disability issues from a medical focus to civil rights, the author clearly defines the contemporary role of persons with disabilities in American culture, and comprehensively outlines the public and private programs designed to integrate disabled persons into society. She covers the law's provisions as they apply to private organizations and businesses and concludes with the most up-to-date coverage of recent Supreme Court decisions-especially since the 2000-2002 terms-that have profoundly influenced the implementation of the ADA and other disability policies.

For activists as well as scholars, students, and practitioners in public policy and public administration, Switzer has written a compassionate, yet powerful book that demands attention from everyone interested in the battle for disability rights and equality in the United States.

CHAPTER 1

Disabled Policymaking/Disabled Policy

Harlan Hahn, founder and director of the Program in Disability and Society at the University of Southern California, is a political scientist who believes that among the issues that form the current agenda of political debate, “perhaps few offer as much promise for achieving significant political change as the development of public policy affecting disabled Americans.”¹ This chapter outlines how disability policy has emerged as a legitimate issue on the policy agenda, beginning with a profound paradigm shift that began in the late 1970s and early 1980s. It provides an overview of the policy process, using a model developed by John Kingdon, and the role of various stakeholders who have shaped contemporary policies leading up to the passage of the 1990 Americans with Disabilities Act (ADA).

The basic theme of this chapter is that there has been an identifiable and distinct shift in public policy—a sea change in the way programs for disabled persons are designed and implemented. Ruth O’Brien, who has studied the paradigm shift as it relates to the workplace, traces the change to the research conducted during and after World War II. O’Brien cites advances in rehabilitation medicine and the work of Howard Rusk and Henry Kessler as an important stage in this process: “Rehabilitation was promoted to ensure the health of the individual and that of society. According to [Rusk and Kessler], an unrehabilitated person could weaken and erode society’s health.”²

The change also is typified by a 1983 policy statement from the National Council on the Handicapped. The federal agency no longer approached a person with a disability from the perspective that such a person was someone who has been damaged or flawed, who is dependent on charity or government assistance (the treatment model and the compensation model). The council called on the government to shift to policies that achieve “maximum life potential, self-reliance, independence, productivity, and equitable mainstream social participation in the most productive and least restrictive environment.”³ This change calls for government to play a role in altering the political environment, primarily by extending civil rights.

THE PARADIGM SHIFT

Why has disability policy finally made its way to the policy agenda? Hahn notes that an important shift in the prevailing definitions of disability has led to an opening of the “policy window” described by Kingdon and others (a process described more extensively in chapter 5). Initially, disability was defined as a medical issue that focused on impairments of mobility, vision, or hearing—defects or organic conditions. As a result, persons with disabilities were placed in separate diagnostic categories, and the solution to the “problem” of disability was to improve an individual’s functional capability. For the person with polio, the answer was braces or a wheelchair. For someone who was blind, service dogs or the teaching of Braille was appropriate. “As a result, the issue of disability not only was depoliticized, but the preoccupation with etiological diagnosis also fragmented the disability community by stressing the functional traits that divided them rather than the external obstacles that they faced as a common problem.”⁴ Hahn believes that this attitude prevented groups from rallying around issues or forming coalitions with one another—actions that would have facilitated the emergence of a broad social and political movement of citizens with various types of disabilities. At the same time, disability policy was viewed from an economic perspective related to whether a person with a disability was able to work. Other life activities were omitted from consideration.

In the 1970s, there was a profound shift in the paradigm that previously had been based on health and economics. Instead, policymakers began to look at disabled persons from the perspective of architectural, institutional, and attitudinal barriers to full participation and integration. At that point, disability began to be regarded in terms of civil rights, bias, and discrimination. Hahn believes that this shift resulted in the realization that the external world is shaped by public policy and that policies are a reflection of pervasive cultural values and attitudes.

Structures are built, messages are transmitted, and institutions are created, primarily because laws, ordinances, and regulations permitted them to be constructed in that manner. As a result, governments bear an inescapable responsibility for those facets of the environment that have a discriminatory effect on persons with disabilities.⁵

Despite the fact that discrimination against persons with disabilities often has been compared to the discrimination faced by other minorities, however, George Washington University historian Edward Berkowitz explains why it is important to differentiate among them:

For one thing, people are not necessarily born handicapped, unlike those who are born black or female. Nor do the handicapped give birth to future generations of handicapped or promote a handicapped culture. The lack of this common culture isolated the handicapped from each other, and the isolation was exacerbated by the fact that the handicapped differed greatly among themselves.⁶

Researchers William Johnson and Marjorie Baldwin believe there are distinct differences between people with disabilities and those who are black. “Unlike black Americans, the majority of persons with disabilities were not subject to discrimination in access to education or in employment during their childhood years,” they note. “Another important difference between the black and disabled minorities is the extreme heterogeneity of prejudice towards persons with different disabilities.”⁷

Berkowitz notes that one aspect of the public policy problem was how to apply the insights that had been gained from the minority model to programs for disabled persons. Doing so involved a subtle but important change in how the policy problem was framed. Some programs and services would be designed for those whose disability was called “enfeeblement” or “loss of powers one once had” that often was a product of the aging process.⁸ Individuals in this category were likely to need protection against a loss of income, such as disability insurance or income maintenance programs. Other policies would be needed for those termed “handicapped” who needed “independence incentives” and protections against discrimination.

Adding to the paradigm shift were important issues raised by economists, who argued that disability policy should not be shaped by civil rights but should be developed on a cost/benefit basis—a debate that continues to complicate policymaking even today. At the time, making buildings or buses accessible was framed in terms of how many individuals would benefit, and at what dollar increment.⁹ At a September 2000 conference in Washington, D.C., designed to measure the benefits of providing accessible transportation, disability activist Patrisha Wright asked rhetorically, “Would we ask what the cost/benefits are of putting black people on a bus?”

This chapter begins with an overview of the policymaking process, which subsequently is used to chronicle the development of disability policy. It identifies key stakeholders involved in making disability policy, inside and outside the formal structure of government. Elemental to the paradigm shift have been two changes: the development of social and political activism of persons with disabilities described in chapter 4.

OVERVIEW OF THE POLICYMAKING PROCESS

The policymaking process can be considered in many ways, and different perspectives have affected the development of American disability policy.

This section seeks to define that process more closely by explaining what is usually referred to as the policy cycle model of public policymaking, described and used extensively by James Anderson and John Kingdon.¹⁰ Anderson and Kingdon bring slightly different but compatible perspectives to understanding public policy; these perspectives are especially applicable to disability policy. The application of this model is discussed in depth in chapters 5 and 6.

The key to the policy cycle model is that there is a predictable and logical sequence of activities that can be used to explain how a policy develops. Although the process is dynamic overall, in a constant state of change and movement, it also can be viewed in distinct stages.¹¹ Commonly, the major steps are described as follows:

1. Agenda setting

2. Policy formulation

3. Policy legitimation

4. Policy implementation

5. Policy and program evaluation

6. Policy change

Agenda Setting

In 1984, Kingdon proposed that the political system is actually three separate but interdependent “streams” of activities that flow continuously. The problem stream is composed of information, research, reports, and evaluations that circulate in the political environment, providing primary data on various public problems. The stream may be affected by variables such as electoral change (a presidential election), a crisis (a major protest or demonstration that is widely covered by the media), a technological development (voice-activated computer software), or other events that prompt the public to pay greater attention to the issue. When the public’s interest is cohesive and strong enough regarding an issue, the problem may be made part of the policy agenda—which Kingdon describes as the list of subjects or problems for government officials and those who interact with government, which begin to hold their interest and to which they pay serious attention.

A second aspect, the policy stream, consists of proposals that begin to develop as legislators, interest groups, academicians, and others discuss potential solutions to solving the problems that are emerging. Some proposals are immediately dismissed as being too costly or impractical; others develop a political following of sorts. For instance, a plan to require the National Park Service to make all of its facilities physically accessible to persons with disabilities might be termed impractical because it would destroy the historical fabric of older buildings. On the other hand, a proposed appropriation to create an interpretive center that would showcase artifacts from a site might gain support from those involved in the decision making.

The third element, the politics stream, is another way of describing the political environment: public opinion, the activities of expressive groups, changing paradigms. Interest groups try to mobilize public opinion as a way of bringing about change—for example, disability rights groups used protests as a strategy when they chained themselves to buses as a way of emphasizing the fact that transportation was not accessible to them.

Kingdon’s model is based on the idea that although the three streams usually flow independent of one another, from time to time they converge. That convergence usually is the result of the opening of a policy window (of opportunity, described more fully in chapter 5) and the presence of a policy entrepreneur who takes the lead on the issue. The policy entrepreneur may be someone inside or outside the formal structure of government, but it inevitably is an individual who is able to mobilize those interested in the problem to action. Anthony Downs uses a similar model to explain how the agenda-setting process also goes through a cycle.¹²

Policy Formulation

This stage is when solutions are identified, proposed, and analyzed. It generally is described as an incremental, often messy process that modifies existing policies rather than blazing new policy ground. It may involve trial-and-error decision making;¹³ consideration of a very limited set of alternatives that are familiar and easily understood;¹⁴ technical and often contradictory scientific studies;¹⁵ and domination of public discourse by one group or another, limiting debate and idea development.¹⁶ Policy formulation does not necessarily involve decision-making equals, and in most cases some groups are better organized and more influential than others. They may dominate the debate because they hold more political clout, financial resources, or other forms of power in the political environment.

Policy Legitimation

At this stage of the policy process, proposals are brought before the legal bodies that can approve them and then set the wheels of action into motion. Legislatures, county governments, city councils, or regional boards—usually made up of duly elected representatives—legitimize the policy because they represent constituents who have given them that power. The public usually is involved in some way during this stage as members of expressive interest groups. Citizens may testify at hearings, send letters to public officials promoting their cause, be part of a task force or planning group, and lobby their representatives. Again, not all groups have identical resources to use these strategies, so their input is not always heard or acted on.

Policy Implementation

The bureaucratic arena becomes a major part of the implementation process when government agencies, bureaus, and commissions begin the task of putting legislation into effect. Sometimes their role is very clear, especially when their legislative directives are limited or clearly defined. Often, however, the laws and statutes are intentionally vague, leaving room for interpretation and discretion. Implementation also is affe...