Equality of Opportunity
The Making of the Americans with Disabilities Act

July 26, 1997

National Council on Disability
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Washington, DC 20004-1107

(202) 272-2004 Voice
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This work was prepared under contract with the National Rehabilitation Hospital Research Center, Medlantic Research Institute, and was written by Jonathan M. Young.

The views contained in this report do not necessarily represent those of the Administration, as this document has not been subjected to the A-19 Executive Branch review process.


Dedication

For people with disabilities throughout the nation whose pursuit of liberty and justice made the ADA a reality.

For those who have since passed away.

For those who join the cause of disability rights.

For John A. Gannon, whose service as a member of NCD from 1988 to his death on May 31, 1997, helped achieve passage of the ADA and the writing of this history.


MEMBERS AND STAFF OF THE NATIONAL COUNCIL ON DISABILITY

Members

Marca Bristo, Chairperson
Kate P. Wolters, Vice Chairperson
Yerker Andersson, Ph.D.
Dave N. Brown
Larry Brown, Jr.
John D. Kemp
Audrey McCrimon
Bonnie O'Day
Lilliam Rangel Pollo
Debra L. Robinson
Shirley W. Ryan
Michael B. Unhjem
Rae Unzicker
Hughey Walker
Ela Yazzie-King

Staff

Ethel D. Briggs, Executive Director
Speed Davis, Executive Assistant to the Chairperson
Billie Jean Keith, Program Specialist
Jamal Mazrui, Program Specialist
Mark S. Quigley, Public Affairs Specialist and Editor
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
Janice Mack, Administrative Officer


ACKNOWLEDGMENTS

The National Council on Disability (NCD) is indebted to the National Rehabilitation Hospital (NRH) Research Center for this historical account. Jonathan M. Young, a Ph.D. candidate in American history at the University of North Carolina at Chapel Hill and Project Director for the NRH Research Center, conducted in-depth research, interviewed many key participants in the ADA's passage, and authored the manuscript. Gerben DeJong, Ph.D., Director of the NRH Research Center, provided overall guidance and advice in addition to reviewing the document. With the support of Dr. DeJong and Karen Behe, Ruth Brannon initiated this project for the NRH Research Center, conducted oral interviews, and collected many documents, which culminated in the development of an annotated outline in 1995. Between 1990 and 1992, prior contractors, including Alexander Vachon, began work on a history of the ADA, conducted selected interviews, and collected materials for NCD, portions of which were made available for this project.

The Civil Rights Committee of the National Council on Disability coordinated the development of this project: John Kemp, Chairman; Hughey Walker, Vice-chairman; Lilliam Rangel Pollo; Rae Unzicker; Marca Bristo, ex officio; and Kate Pew Wolters, ex officio. NCD Chairperson Marca Bristo reviewed multiple iterations of the manuscript and contributed significantly to its development. Billie Jean Keith was the NCD staff person to the Civil Rights Committee and followed the manuscript from beginning to end. Mark Quigley, NCD Public Affairs Specialist, coordinated publication of the manuscript.

Staff at the NRH Research Center assisted in the general development of the project. Special recognition goes to Rachel Halpern and Ben Wheatley, who helped edit the manuscript, as well as to Phillip Beatty, Olga Elizabeth Hayes, Barbara Maloney-Darbeau, Lee Ann McNnerey, Georgette LaFayette Smith, and Sabrina Smith. Kathy Butler and Antonio de Guzman, at the NRH Research Center Library, were invaluable resources for research. In addition, George Koch provided important access to the law library of his firm, Kirkpatrick & Lockhart. Staff at the House and Senate Libraries and Parliamentarian's offices were indispensable sources of information. Frank Young, Leanne Young, and Bob Atwood provided essential editorial assistance. Personal interviews were transcribed by Ann Rand of Medical Dictation Services, Inc. Mary Flannery designed the cover.

Numerous individuals provided invaluable feedback on the complete manuscript or parts of it: Yerker Andersson, Ruth Brannon, Maria Cuprill, Lex Frieden, Paul Hearne, Mark Johnson, Evan Kemp, Chris Lord, Marla Miller, Phyllis Rubenfeld, Liz Savage, Melissa Schulman, Robert Silverstein, Roger Slagle, Roland Sykes, and Pat Wright. The manuscript is stronger and more accurate because of their comments.

Special thanks go to the 54 individuals who gave their time and insight in personal and correspondence interviews as sources for this historical account: they are listed in Appendix A. Many of these interviewees also provided access to their personal papers and made themselves available for follow-up fact-checking. Without them this history would have been impossible.


CONTENTS

Foreword

Executive Summary

  1. Laying the Foundation:
    Disability Policy & Activism, 1968-1988


  2. Putting the ADA on the Legislative Agenda:
    The National Council on Disability


  3. Publicizing the ADA:
    Advocacy and the Government Response


  4. Creating a Workable ADA:
    The Senate and the White House


  5. Fashioning a Durable ADA:
    The House of Representatives


  6. Enshrining the ADA:
    House-Senate Conference and the Signing


Epilogue

Glossary of Acronyms

Appendices

Appendix A: List of Interviews
Appendix B: The Legal Road to the ADA
Appendix C: Chronology: The ADA's Path to Congress
Appendix D: Chronology: Legislative History of the ADA
Appendix E: Discrimination Diaries
Appendix F: Key Concepts in the ADA
Appendix G: President Bush's Remarks at the Signing
Appendix H: Text of the Americans with Disabilities Act
Appendix I: Mission of the National Council on Disability
Appendix J: ADA Technical Assistance Information

Notes


FOREWORD

Future historians will come to view the Americans with Disabilities Act (ADA) of 1990 as one of the most formative pieces of American social policy legislation in the 20th century. Its enactment codified into law important principles that would henceforth govern the relationship between society and its citizens with disabilities. The ADA is universal. It champions human rights themes by declaring that people with disabilities are an integral part of society and, as such, should not be segregated, isolated, or subjected to the effects of discrimination. The ADA is also distinctively American. It embraces several archetypal American themes such as self-determination, self-reliance, and individual achievement. The ADA is about enabling people with disabilities to take charge of their lives and join the American mainstream. It seeks to do so by fostering employment opportunities, facilitating access to public transportation and public accommodations, and ensuring the use of our nation's communication systems.


Future generations will look back on the passage of the ADA as a watershed public policy.


The ADA is much more. The ADA's founding principles, explicit and implicit, also serve as a framework in which other public policies can be tested, challenged, and, if necessary, amended. It has altered our public discourse about disability and about the role of people with disabilities in American society. Future generations will look back on the passage of the ADA as a watershed public policy.

As Major R. Owens (D-NY) wrote regarding the ADA's final passage, the ADA "articulates forcefully and eloquently the purposes which must be embodied in our public policies and in our commitments as individuals and as a nation in order for America to thrive. . . . It embodies a philosophy and constitutes a declaration in support of human possibility and capability." As Owens noted, ours is a nation of interdependence: we do and must rely on one another for success. Because the ADA seeks to build a society "which encourages and supports the efforts of each individual to live a productive life," it promotes the success of our entire nation. The ADA is important for what it says about our national commitments to each citizen. In a long tradition of promoting civil rights, the ADA upholds the principle that each individual has the potential, and deserves the right to participate in, and contribute to, society.

Focus and Sponsorship

Equality of Opportunity: The Making of the Americans with Disabilities Act tells a story of how the ADA came about. Other works have explored in great detail what individual provisions of the ADA mean, how they apply to individuals and businesses, and what one must do to be in compliance. This account examines process rather than content. Its defining focus is the transition from a fragmented national disability policy, which often worked to the detriment of people with disabilities, to an affirmation of the basic civil rights of persons with disabilities, as symbolized in the ADA's passage. To help readers familiarize themselves with the content of the ADA, appendices include descriptions of key concepts in the ADA, a reprint of the text of the ADA, and information necessary for obtaining technical assistance.

Equality of Opportunity is the first detailed history of the ADA. It was written for a broad audience, including the disability community, policy makers, academicians, and general readers. Rather than seek to be the final word on the ADA's history, Equality of Opportunity hopes to succeed by leading others to explore the rich history of the ADA and the disability rights movement and offer additional information and interpretations. This work can thus serve as an important source document for future researchers.


Equality of Opportunity hopes to succeed by leading others to explore the rich history of the ADA and the disability rights movement and offer additional information and interpretations.


Writing the history of the ADA is not an easy task. There is not a single or even a handful of founding fathers and mothers around whom a narrative can be organized. Nor is there one straight line from first thoughts about implementing a national, comprehensive civil rights law for people with disabilities to the ADA's enactment on July 26, 1990. Rather, thousands of people from all over the nation played roles crucial to the ADA's success, and multiple thematic threads characterize the ADA's development. Unfortunately, each contribution cannot be fully recognized in the limited space of this work. And maintaining narrative cohesion precludes full coverage of simultaneous activities taking place in Washington and throughout the country. Nonetheless, the spirit of community and cooperation among a large and diverse group of advocates and the complexity and intensity of the ADA's passage are evident in the narration.

Research and writing for this project was conducted under contract with the National Council on Disability at the National Rehabilitation Hospital (NRH) Research Center, a division of the Medlantic Research Institute, in Washington, D.C. Research was based on a lengthy series of personal and correspondence interviews with key participants in the ADA's passage, as listed in the appendix, in addition to traditional documentary sources.

Building on Foundations

The heart of this story begins in 1986, when the National Council on the Handicapped (renamed the National Council on Disability in 1988) presented a breakthrough report titled Toward Independence, which included a proposal for a comprehensive, equal opportunity law for people with disabilities"the embryo of the ADA. Equality of Opportunity traces the development of the ADA from this report (first as a draft bill, and then as a formal item of Congress in 1988), through the Senate and House of Representatives, and to the desk of President George Bush in 1990.

To understand the ADA one must first understand the decades that preceded it. Equality of Opportunity therefore pays considerable attention to the tradition of civil rights established in the 1960s and developments within the disability community during the 1970s and 1980s. Especially important for the ADA's success was the emergence of a disability rights movement molded in the image of the movements that preceded it--the civil rights, women's, self-help, and the deinstitutionalization and normalization movements. The disability rights movement deserves its own book; the following pages seek only to relate its relevance to the ADA's development.

The extraordinary efforts of people with disabilities throughout the nation helped build a grass roots movement that resulted in legislative and judicial successes and the development of crucial coalitions and networks within the civil rights community, Congress, and the White House. The ADA could not have succeeded without this foundation. Equally important was the ADA's legislative foundation in the Civil Rights Act of 1964 and regulatory foundation resulting from the Rehabilitation Act of 1973. By building on tested legal principles, the ADA was able to avert much of the debate that would have accompanied an act developed de novo. This is not to say there was no conflict over the ADA. On the contrary, the ADA went through comprehensive review by various interested parties and underwent painstaking revisions. The original draft, for example, was transformed to enlist broad, bipartisan support. But the Civil Rights Act and the Rehabilitation Act enabled the ADA to withstand Congressional scrutiny.

Some Lessons

The passage of the ADA was a consciousness-changing experience for the 101st Congress and must remain an important analytic point of departure for the development of disability policy both now and in the future. This account therefore has as much to say about our public policy future as it does about our past.


In our age of cynicism about the American political system, the ADA offers a refreshing example of how the legislative process can work when it works well.


Students of public policy and the American legislative process would do well to examine how the ADA came about. In our age of cynicism about the American political system, where partisan clashes have led to government shut-downs and rampant accusations, the ADA offers a refreshing example of how the legislative process can work when it works well. Passage of the ADA is a story of political leaders on both sides of the aisle who put aside personal and partisan differences to do what they thought was the right thing to do. The ADA was certainly not without its detractors, and debate was at times prolonged and intense. Moreover, near unanimous support in the final voting masks deep divisions that characterized the deliberative process. But members of Congress and the Bush administration demonstrated a remarkable cooperative spirit that resulted in a solid, durable act that has been able to withstand subsequent scrutiny. Furthermore, they maintained a high level of public debate that kept the ADA from falling victim to a venomous public debate controlled by spin doctors and political pundits as witnessed, for example, in the Civil Rights Act of 1991. In short, the passage of the ADA provides important lessons about restoring dignity to public debate about the leading issues of our time.

Also important for the enactment of the ADA was the ability of the ADA coalition to close ranks. Historically, the disability community has been divided internally, in part because of conflicts over limited public funding. With the ADA, however, scores of organizations representing thousands of people with different disabilities joined forces to work for a common cause. People with blindness fought the battles of those who used wheelchairs; persons with epilepsy fought the battles of those with deafness. The disability community's abiding commitment to act as one unified voice helped keep the ADA a strong act and prevented the exclusion of specific subgroups of disabilities.

In Closing


The disability community's abiding commitment to act as one unified voice helped keep the ADA a strong act and prevented exclusion of specific subgroups of disabilities.


Now is the time to preserve a record about the creation and passage of this historic, landmark legislation. We view the present and look to the future based on our cumulative experiences. As we look toward the continued development of disability policy, we must have a firm grasp on how we have reached this point. This is especially important for those who were not direct participants in the ADA's passage and for the next generation that is growing up in an America transformed by the ADA. Because disability is usually not passed on from generation to generation, there is not a natural cultural transference about disability. NCD recognizes the crucial role of the past and the need to build our own history as we march into the future. Therefore, we made a commitment to providing a thorough analysis of the ADA's history. Other histories will and must be written, but this one sets the stage.

The National Council on Disability and the National Rehabilitation Hospital Research Center are pleased to make Equality of Opportunity, by Jonathan M. Young, available to the public. We believe it is a work in which the disability community and the public policy-making community can take great pride.

Marca Bristo
Chairperson, National Council on Disability

Gerben DeJong
Director, NRH Research Center


EXECUTIVE SUMMARY

Laying the Foundation: Disability Policy & Activism, 1968-1988

In retrospect, it seems as if the Americans with Disabilities Act (ADA) passed Congress easily. But most people aware of the proposal in 1987 thought success, at that time, was doubtful. The fact that the ADA did reach President Bush's desk and was signed into law is a tribute to the groundwork that had been laid in the previous two decades. A string of legal precedents expanded upon the foundation of the Civil Rights Act of 1964 and the Rehabilitation Act of 1973. A nationwide disability rights movement emerged from within the disability community. Attorneys in the disability community attained a high degree of legal sophistication. Disability organizations successfully united with the civil rights community to promote disability policy as a civil rights issue. The disability community established extensive networks among its constituencies, Congress, and the White House. Numerous effective and talented leaders emerged from within the disability community to help guide the ADA through Congress. Without these developments, the ADA likely would have failed.

Putting the ADA on the Legislative Agenda: The National Council on Disability

Successful passage of a law depends first on getting a proposal to Congress as a viable policy option. For the ADA, this role as facilitator was performed by the National Council on the Handicapped (now National Council on Disability, [NCD]). In 1984, Congress issued NCD a mandate to review all federal programs relating to disability and offer recommendations on how Congress could best promote the independence of persons with disabilities and minimize dependence on governmental programs. NCD's primary recommendation to Congress was a call for passage of a comprehensive, equal opportunity law for persons with disabilities. Subsequently, NCD decided to take action by drafting its own legislative proposal for congressional consideration. NCD successfully solicited Senator Lowell P. Weicker, Jr. (R-CT) and Congressman Tony Coelho (D-CA) to sponsor the ADA and introduce the bill to Congress. After incorporating recommendations offered by representatives from the disability community at large, Weicker and Coelho introduced the ADA to the Senate and House on April 28 and April 29, 1988.

Publicizing the ADA: Advocacy and the Government Response

ADA advocates introduced their proposal in 1988 not with the expectation of passing the bill that year, but as an opportunity to create momentum by empowering people throughout the nation to advocate for the bill. They planned to use the politics of an election year as a way to publicize the ADA and gain a foothold as a top priority for the next session of Congress. During this year, representatives from the disability community began to form an ADA coalition to promote passage of the ADA. This coalition worked with members of Congress to solicit cosponsors and encouraged the presidential candidates to endorse the bill. It also effectively used this time to begin mobilizing nationwide grassroots advocacy for the ADA to demonstrate that people throughout the country (not just a few persons from a think tank) demanded its passage. Powerful testimony from persons with disabilities helped document the desperate need for legislation such as the ADA. As a consequence, ADA advocates successfully positioned the ADA for serious introduction in 1989.

Creating a Workable ADA: The Senate and the White House

George Bush, who advocated for the rights of disabled persons in his campaign, was elected president in 1988 and subsequently promoted passage of the ADA. At the same time, however, Lowell Weicker lost his bid for reelection to the Senate. In Weicker's absence, Senator Tom Harkin (D-IA) became the Senate ADA sponsor. In conjunction with Senator Edward M. Kennedy (D-MA) and with the participation of a variety of constituencies, Harkin rewrote the ADA in a form that stood a reasonable chance at passage. On May 9, 1989, Harkin and Congressman Coelho simultaneously introduced the ADA to both houses of Congress. Coelho, Kennedy and Harkin decided to begin deliberations in the Senate. After hearings held in May and June, 1989, the Senate entered a series of negotiations sessions with the Bush administration to craft a bipartisan, compromise bill. On August 2, the Senate Committee on Labor and Human Resources voted unanimously to report the ADA, as amended, to the Senate floor. The Senate passed the ADA by a vote of 76 to 8 on September 7, 1989.

Fashioning a Durable ADA: The House of Representatives

Under the leadership of Congressman Coelho and, later, Congressman Steny H. Hoyer (D-MD), the House began its deliberations by using the bill approved by the Senate. The House process was more complicated than the Senate's, in part because the bill went to four committees and six subcommittees. In contrast to the rapid action in the Senate, the House took nearly nine additional months to analyze and refine the bill. The dynamic was also much different because business organizations, who had deep concerns about the cost burden and the litigation potential of the ADA, lobbied vigorously by applying constituent pressure on members. The disability community now worked to hold the ground it had achieved in the Senate. The main issue in the House was the effect of the ADA on businesses and governments covered by the ADA's provisions; many changes were made to make the ADA more acceptable to entities covered by the ADA. A series of "weakening" amendments were proposed and defeated at the committee level and on the House floor, where the House passed the ADA by a vote of 403 to 20, on May 22, 1990. One controversial amendment, however, did succeed. The Chapman amendment said that employers could legally remove persons with contagious diseases, such as AIDS, from food handling positions, even where there was no evidence that the disease could be transmitted.

Enshrining the ADA: House-Senate Conference and the Signing

The overwhelming votes in favor of the ADA in both the House and the Senate seemingly destined the ADA for success. But the Chapman amendment passed in the House threatened to kill the bill: the disability community and its congressional sponsors decided not to support an ADA with the amendment. The conflict over food handling and contagious diseases had to be settled by a conference between the House and Senate, where conferees rejected the Chapman amendment, only to have members in both the House and Senate try to put it back into the ADA. After nearly two months of wrangling over the provision, the Senate developed a compromise through the leadership of Senator Orrin G. Hatch (R-UT). The House and Senate then passed the ADA in final form on July 12 and 13, 1990. On July 26, before about 3,000 persons, President Bush signed the ADA into law as Public Law 101-336.

Epilogue

The ADA is unique in the context of civil rights legislation because it requires that businesses and governments do more than just cease discriminatory actions. They must also take proactive steps to offer equal opportunity to persons with disabilities, commensurate with their economic resources. The ADA is distinctive in the context of disability legislation not for its individual provisions, most of which were already established in some form by various state and local governments, but in its comprehensive nature and application to much of the private sector. No single factor can explain the ADA's success. A whole host of circumstances worked in its favor: effective leadership; advocates in key government positions; the rightness of the cause; the mobilization of the grassroots disability community; a string of legislative successes offering momentum; legal and lobbying expertise in the disability community; the willingness of persons with disabilities to unite for a common cause; the cautious support of the business community; and ideological justifications from both the right and the left. The time was right and the cause was just.


EQUALITY OF OPPORTUNITY

"The Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency."

The Americans with Disabilities Act


VIEWS FROM CONGRESS AND THE WHITE HOUSE

Disability Discrimination

Authorities on disability have often said, and I have quoted them on this floor before, that the history of society's formal methods of dealing with people with disabilities can be summed up in two words: segregation and inequality.

Senator Lowell P. Weicker, Jr.

Disability Rights

We know that there is going to have to be accommodations to give us our basic civil rights. We know that. We understand that. There is a cost involved. But isn't there also a cost involved with us not being able to exercise our rights?

Congressman Tony Coelho

The Disability Community

Within a few weeks the ADA will become the law of the land because of the vision of the disability community. You knew in your hearts what we now write into law--that discrimination based on fear, ignorance, prejudice, and indifference is wrong. It is true that I am the sponsor of the ADA, and my colleagues are cosponsors. However, the ADA is first and foremost the outcome of the extraordinary efforts of the disability community. This is your bill, and you earned it.

Senator Tom Harkin

Changing the World

We are sent here by our constituents to change the world for the better. And today we have the opportunity to do that. . . . Many have asked: "Why are we doing this for the disabled?" My answer is twofold. As Americans, our inherent belief is that there is a place for everyone in our society, and that place is as a full participant, not a bystander. The second answer is less lofty. It is steeped in the reality of the world as we know it today. If, as we all suspect, the next great world competition will be in the marketplace rather than the battlefield, we need the help of every American. . . . We cannot afford to ignore millions of Americans who want to contribute.

Congressman Steny H. Hoyer

Americans with Abilities

The road to enactment of this legislation was not easy. But in the process of reaching this goal, we have all learned something about the evils of discrimination in any form, and the importance of judging individuals by their abilities--not patronizing misconceptions, demeaning stereotypes, and irrational fears about their disabilities.

Senator Edward M. Kennedy

The Americans with Disabilities Act

No piece of legislation this Congress will pass articulates more forcefully and eloquently the purposes which must be embodied in our public policies and in our commitments as individuals and as a nation in order for America to thrive in the 1990s. It embodies a philosophy and constitutes a declaration in support of human possibility and capability. . . . With a powerful commitment to building a society which encourages and supports the efforts of each individual to live a productive life, there is no challenge which our Nation cannot meet.

Congressman Major Owens

The American Dream

The time has come for the Senate to send a loud, clear message across this country: Individuals with disabilities, no less than all other Americans, are entitled to an equal opportunity to participate in the American dream. It is time for that dream to become a reality.

Senator Orrin G. Hatch

Independence

ADA will empower people to control their own lives. It will result in a cost savings to the Federal Government. As we empower people to be independent, to control their own lives, to gain their own employment, their own income, their own housing, their own transportation, taxpayers will save substantial sums from the alternatives.

Congressman Steve Bartlett

The Time Has Come

I have supported the ADA because I believe it is a just and fair bill, which will bring equality to the lives of all Americans with disabilities. Our message to America is that inequality and prejudice will no longer be tolerated. Our message to people with disabilities is that your time has come.

Senator Robert Dole

Finding Balance

This historic civil rights legislation seeks to end the unjustified segregation and exclusion of persons with disabilities from the mainstream of American life. . . . The ADA is fair and balanced legislation that carefully blends the rights of people with disabilities . . . with the legitimate needs of the American business community.

Attorney General Richard Thornburgh

The Shameful Wall

And now I sign legislation which takes a sledgehammer to another wall, one which has, for too many generations, separated Americans with disabilities from the freedom they could glimpse, but not grasp. Once again, we rejoice as this barrier falls, proclaiming together we will not accept, we will not excuse, we will not tolerate discrimination in America. . . . Let the shameful wall of exclusion finally come tumbling down.

President George Bush


1

LAYING THE FOUNDATION: DISABILITY POLICY & ACTIVISM, 1968-1988

The Americans with Disabilities Act (ADA) of 1990 raced through Congress. So much momentum drove the bill forward that many members of Congress, caught by surprise, reacted by claiming the bill had come from nowhere, that there was little precedent for such sweeping legislation, and that the deliberative process should be extended to provide time to grasp the novelty of the bill's provisions. Such claims, however, overlooked one crucial fact: the ADA had been long in gestation. Indeed, part of the reason the bill became law with such alacrity is precisely the degree to which the legislation was built on a solid foundation: of policy, legal principle, personal networks, coalition-forming, and an increasingly active disability community. Without this foundation, which was put in place largely over the 1970s and 1980s, the ADA's passage would have been impossible. To comprehend the ADA one must first understand the context in which it developed.

Contours of Disability in America

Disability has a history. In colonial America, persons with disabilities were often viewed as part of the "deserving poor." They were consequently accepted by local communities, where they contributed however possible and shared in the community's offerings. But with the nineteenth-century industrial and market revolutions and the growth of a liberal individualistic culture, the cohesion of physical and geographic communities began to break down. One consequence was that persons with disabilities, increasingly deemed unable to compete in America's industrial economy, were spurned by society. Growing side-by-side with social structures catering to individual achievement were custodial institutions for those who did not "fit" with the American creed: persons with sensory impairments, reduced cognitive capacities, physical impairments, mental illnesses, or other conditions. Institutions supposedly "protected" these persons from public harm. Institutions also allegedly protected society from those who were feared by many as dangerous and a threat to the gene pool. Some persons with physical disabilities were displayed as "freaks" of nature, to be marveled at like exotic animals. Such literary works as Herman Melville's Moby Dick reinforced stereotypes of persons with disabilities as sinister, or even crazy, through such characters as the peg-legged Captain Ahab.


Justice Oliver Wendell Holmes ruled that it was "better for all the world, if, instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind."


Racism, ethnic imperialism, and xenophobia plagued early twentieth-century America. Darwin's theories about the origin of species gave rise to universal theories about natural selection within humankind and the evolution of society. Many believed it was in the best interest of humanity to eliminate or at least cur tail populations considered inferior, as witnessed in the treatment of African Americans and Jews. These ideas also adversely affected persons with disabilities, displayed most starkly in the 1927 Supreme Court case Buck v. Bell.

Carrie Buck argued before the Court that state-imposed sterilization, based on disability, was unconstitutional. The Court disagreed. Instead, the Court sided with "experts" who alleged that persons with disabilities, namely those collectively classified as "the feeble-minded," were "a menace" to society, threatened society's "best citizens," and tended to "sap the strength of the state." Justice Oliver Wendell Holmes thought it best for society to seek to avoid "being swamped with incompetence." He thus ruled that it was "better for all the world, if, instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind." Although sterilization and segregation practices targeted those classified as "feeble-minded" persons--or people with mental retardation, mental illness, and epilepsy--it reflected a general intolerance for those who allegedly did not fit the model for the rugged, individualistic, capitalistic American.


Increasing numbers of persons with disabilities made disability a societal challenge rather than a scattered, personal predicament.


Significant developments over the course of the twentieth century, however, transformed the nature of disability in American life. These included demographic changes among persons and parents of persons with disabilities, the creation of disability organizations, and the growth of rehabilitation as a profession. In the early twentieth century, the demographics of disability changed as thousands of Americans acquired disabilities through industrial, work-place injuries. Moreover, World War I introduced thousands of veterans with disabilities, as did World War II, the Korean War, and the Vietnam War. In addition to the in creased numbers of disabilities caused by injuries, Americans also began to live longer. Whereas in 1900 the average life span was 47 years, by 1980 life expectancy had increased to the age of 74. Since disability tends to increase with age, an older population meant an America with greater prevalence of disability. By 1980 at least thirty million Americans experienced disability first-hand. As all Americans, these persons wanted the best life possible and worked to get it. Increasing numbers of persons with disabilities made disability a societal challenge rather than a scattered, personal predicament.

As demographics changed, persons with disabilities began forming organizations to act as advocates for their interests. Early examples include the Disabled Veterans of America (DVA) and the National Mental Health Association (NMHA), both founded in 1920, and the National Federation of the Blind (NFB), founded in 1940. After World War II, this growth accelerated. The Paralyzed Veterans of America (PVA) opened its doors in 1946, the United Cerebral Palsy Associations (UCPA) began in 1949, the National Association for Retarded Citizens (ARC) was founded in 1950, the first Home Office of the National Association of the Deaf (NAD, originally founded in 1880) opened in 1953, and the American Council of the Blind (ACB) started its operations in 1961. These organizations dedicated their existence to improving the lives of their constituencies and gave persons with disabilities a stronger voice. They raised money, identified areas of need, and lobbied to pass legislation that would help solve problems. They looked for ways to achieve employment and to gain better education. By working with Congress and the judiciary to achieve their goals, they also gained valuable legal experience. As a result of these activities, they further imprinted disability on the American landscape.


Most Americans still understood disability primarily as a problem that resided in the individual. People were to be "rehabilitated" to become "normal."


Throughout the twentieth century a variety of professions developed to attend to the challenges posed by disability. By giving increased attention to persons with disabilities, physicians, researchers, nurses, physical and occupational therapists, and vocational rehabilitation counselors, and other professionals enabled many persons with disabilities to live healthier lives. New technologies, drugs, and devices enabled persons to live longer with lower incidence of secondary disabilities, and with greater control over their daily activities. It also helped transform disability rehabilitation into a full-fledged industry, which had the concomitant affect of making rehabilitation a commodity to be bought and sold in the marketplace. Moreover, professionals tended to focus their attention on specific disabilities, fostering the compartmentalization and fragmentation of people with disabilities.

As the numbers of persons with disabilities grew, and as they, their parents, organizations, and professionals worked to improve their lives, the attitudes manifest in Buck v. Bell came under attack: persons with disabilities, too, deserved to be part of society. National policy developments assisted in this transition. Over the course of the twentieth century, the scope and power of the Federal Government expanded to meet the growing demands of an industrializing nation. New legislative endeavors accordingly addressed disability issues. Reforms directed at corporate America provided benefits to persons injured on the job. By 1941, forty-five states ensured compensation for work-place injuries. The United States Public Health Service (USPHS), established in 1902, gave new attention to the importance of health care for society. The Veterans' Rehabilitation Act of 1918 established a program for training veterans with disabilities. In 1920, the combined problems posed by industrial impairments and war veterans led to the Smith-Fess Act, which established the vocational rehabilitation program. By 1935, every state had a vocational program in operation, providing vocational training, job placement assistance, and counseling to those with physical disabilities. During World War II, Congress expanded the vocational rehabilitation program to offer "medical, surgical, and other physical restorative services" and to include services for the mentally ill and mentally retarded. Legislatures passed other laws directed toward greater access for persons with disabilities: for example, laws permitting the public use of guide dogs and white canes for blind persons.


Advocates of the ADA regularly declared that it was the most sweeping civil rights legislation in a quarter century: that is, since the Civil Rights Act of 1964--one of the most important twentieth-century domestic initiatives.


The Social Security system also had a profound effect on persons with disabilities. In the 1950s, Congress amended the Social Security Act to provide income benefits to working-age people with disabilities who could not engage in any "substantial gainful activity." In 1965, Congress established the Medicare and Medicaid programs that provided health care coverage to select groups of people with disabilities, as well as to elderly and lower income persons. Persons with disabilities could also be eligible for food stamps, school lunches, and housing subsidies if they met income tests. Although these programs demonstrated a recognition of disability as a matter of national concern, they would later prove to be a mixed blessing. While they provided much-needed income security, they could make paid employment less appealing.

Despite many improvements, problems for persons with disabilities were widespread: unemployment, lack of education, low income, and isolation. Moreover, most Americans still understood disability primarily as a problem that resided in the individual. They viewed disability as a "medical" problem that required medical supervision. People were to be "rehabilitated" to become "normal." The public policy approach to disability, however, would be revolutionized in the wake of the 1960s.

The Twin Pillars

Advocates of the ADA regularly declared that it was the most sweeping civil rights legislation in a quarter century: that is, since the Civil Rights Act of 1964--one of the most important twentieth-century domestic initiatives. The aims of the Civil Rights Act were not achieved over night. But the legislation heralded a revolutionary proposition: it is against the law to discriminate on the basis of race, color, national origin, or religion. The Civil Rights Act was born of a protest movement. In the decade following the historic 1954 Supreme Court ruling, Brown v. Board of Education, African Americans, students, and white supporters participated in nationwide sit-ins to protest segregated eating establishments; bus boycotts to protest segregated bus seating; freedom rides to protest segregation in bus stations; voting registration drives; and numerous demonstration marches supporting, among other things, the enrollment of African Americans in white educational institutions. This movement faced vehement and violent opposition from whites viscerally committed to centuries of white supremacy--first in slavery and then in segregation and disfranchisement. But television coverage of dogs and fire hoses unleashed on peaceful marchers thrust the injustice of rampant racism and racial subordination into the living rooms of Americans throughout the country. Confronted by the flagrant violation of American principles of liberty and equality, American public opinion shifted to support the aspirations of America's blacks.

President John F. Kennedy and, after Kennedy's 1963 assassination, President Lyndon B. Johnson, sought to quell the social unrest by submitting to Congress comprehensive civil rights legislation that would protect the rights that millions earnestly pursued. But it was a battle. A protracted and vigorous debate ensued; compromises were made. When the legislation finally reached the House floor, one Representative introduced an amendment that would include women in the coverage of the act by adding sex as a prohibitive category for employment discrimination. His intent, however, was to kill the bill by suggesting what to many was a laughable proposition: equality for women. The amendment was approved, but it did not kill the bill. The resulting Civil Rights Act of 1964, signed into law by Johnson on July 2, 1964, provided numerous protections to racial and ethnic minorities and persons of varied religious faiths. The heart of the law was the principle that all persons, regardless of "race, color, religion, or national origin," are entitled to the "full and equal enjoyment of the goods, services, privileges, advantages, and accommodations of any place of public accommodation." This was in accordance with one of the central demands of the civil rights movement--equal access. Political realities, however, restricted that access to places of lodging, eating, and entertainment, and exempted private clubs and religious organizations. Additional provisions of the Civil Rights Act included the desegregation of public facilities and public education. Other provisions stipulated nondiscrimination in federally-assisted programs and employment practices. More legislation followed close behind. The Voting Rights Act of 1965 granted the Federal Government the power to ensure that racial minorities could register to vote. In 1968 the Fair Housing Act expanded the scope of the Civil Rights Act by adding Title VIII, which prohibited discrimination in the sale or rental of housing.

All of these measures had varying degrees of success. Nondiscrimination in public accommodations resulted in the most change. Retail businesses welcomed this provision because it translated into more customers and more money. In addition, it eliminated the cost of dual facilities. Gains in education and employment nondiscrimination would come more slowly. The civil rights movement, however, left a crucial legacy to African Americans and other disadvantaged groups, including persons with disabilities. They would seek the same protections and model the protest movement. First, the Civil rights movement legitimated and proved the success of civil protest to demand civil rights. Persons with disabilities, as other groups, would use the same sit-in and marching tactics. Second, the civil rights movement established a vital principle: discrimination according to characteristics irrelevant to job performance and the denial of access to public accommodations and public services was, simply, against the law. Once codified, logical implications extended well beyond race. Finally, the civil rights movement left a body of statutes and case law--models for future legislation. There would be no ADA were it not for the successful protests of African Americans, for their crowning achievement in the Civil Rights Act was also the philosophical foundation of the ADA.

The civil rights movement did not, however, have an immediate, direct impact on the disability community. The Civil Rights Act made no reference to persons with disabilities. The only significant statute increasing access for persons with disabilities, and passed near that time, was the Architectural Barriers Act of 1968. This act was largely the result of the efforts of Hugh Gregory Gallagher. As a legislative assistant, Gallagher had been instrumental in making the Library of Congress and other buildings in Washington accessible. These efforts culminated with his drafting of the Architectural Barriers Act, which required that all buildings constructed, altered, or financed by the Federal Government had to be physically accessible.

The first attempts to merge disability with the civil rights movement were unsuccessful. In 1972, for example, Senator Hubert H. Humphrey, Jr. (D-MN) proposed an amendment to the Civil Rights Act that would incorporate disability as a protected class. But the proposal made little headway. There was no constituent base to support such an endeavor. Moreover, advocates of the Civil Rights Act feared that the addition of "disability" as a "protected class," similar to ethnic minorities, might dilute the Civil Rights Act. And, once the act was on the table for discussion, members might introduce damaging amendments.


The legal foundation of the Civil Rights Act of 1964 alone could not adequately buttress as comprehensive a measure as the ADA.


The political climate of the late 1960s and early 1970s worked against the advancement of civil rights for persons with disabilities. In 1968, Richard M. Nixon campaigned for the presidency with pledges to stem the tide of civil rights advances. He won the election in part due to a cultural backlash against the civil rights movement and President Johnson's War on Poverty. Nixon's election reflected a breakdown of the New Deal consensus, the splintering of the Democratic party, and the dawn of a conservative shift in American public opinion. In the early 1970s, the nation also faced new economic pressures and financial restraint. Many thought welfare measures now exceeded the American budget. It was simply not a friendly time for new civil rights protections.

Ironically, however, a crucial component of the infrastructure of disability law came precisely at this time. The legal foundation of the Civil Rights Act of 1964 alone could not adequately buttress as comprehensive a measure as the ADA. Although ethnic minorities and women had been afforded civil rights protections identical to those for African Americans for identical civil rights protections, disabled people as a class were different and required such unique legal provisions as "reasonable accommodation" (see Appendix F). This part of the ADA's foundation came from Section 504 of the Rehabilitation Act of 1973, a stealth measure in the midst of a backlash against civil rights.

This occurred in spite of President Nixon because Congress continued to promote social legislation. When the Vocational Rehabilitation Act came up for re-authorization, Congress crafted an even broader piece of legislation called the Rehabilitation Act of 1972. Congress sought to expand the program beyond its traditional employment focus by identifying ways to improve the overall lives of persons with disabilities: "the final goal of all rehabilitation services was to improve in every possible respect the lives as well as livelihood of individuals served." The new law would extend rehabilitation services to all persons with disabilities, give priority to those with severe disabilities, provide for extensive research and training for rehabilitation services, and coordinate federal disability programs. The act would be carried out by a Rehabilitation Services Administration (RSA) housed in the Department of Health, Education and Welfare (HEW). Passage of this legislation, however, resulted in a vigorous battle. Nixon vetoed the bill on two occasions. He claimed that the bill was "fiscally irresponsible" and represented a "Congressional spending spree." He urged: "We should not dilute the resources of [the Vocational Rehabilitation] program by turning it toward welfare or medical goals." After failing to override the president's veto by six votes, the Senate was forced to negotiate with the Nixon administration.

The compromise legislation signed into public law on September 26, 1973, made for a weaker RSA tightly controlled by the Secretary of HEW. It reduced appropriations levels, abolished programs designed to help address certain categories of disability, substituted "emphasis" for "priority" in dealing with persons with severe disabilities, and eliminated a proposed Division of Research, Training and Evaluation. Nevertheless, the Rehabilitation Act fell short of original congressional intent, it was the first legislation designed to improve the overall lives of persons with disabilities. Especially significant was Title V of the act. Section 501 directed federal agencies to develop affirmative action programs for the hiring, placement, and advancement of persons with disabilities. Section 502 established the Architectural and Transportation Barriers Compliance Board (ATBCB), which would ensure compliance with the Architectural Barriers Act of 1968, pursue ways to eliminate transportation barriers, and seek ways to make housing accessible. Under Section 503, parties contracting with the United States were required to use affirmative action to employ qualified persons with disabilities. Finally, and most importantly, Section 504 stated: "No otherwise qualified handicapped individual in the United States . . . shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance."

This phrase was modeled after Title VI of the Civil Rights Act of 1964 and Title IX of the Education Amendments Act of 1972, which prohibited discrimination in federally-assisted pro grams on account of race, color, religion, national origin, or sex. Unlike the Civil Rights Act of 1964, Section 504 did not emerge in response to protest. Rather, it was created silently by a group of congressional staff members. No suggestion for such a provision was made at the hearings, and the provision was not in the original draft of the bill. Staff added the section late in the deliberative process without any statement of congressional intent or appropriations to finance it. Not a single member of Congress mentioned the section during floor debate, and President Nixon made no reference to it as grounds for his veto. The section apparently developed out of a fear that persons receiving vocational rehabilitation would later be blocked from employment, thus negating the rehabilitative benefits. It was a way to add an element of civil rights language without the danger of amending the Civil Rights Act.

Although Section 504 was not introduced at the behest of disability advocates, the Rehabilitation Act helped energize the disability community. Persons with disabilities protested each of President Nixon's vetoes. And, though it appears that many in the disability community were only vaguely familiar with Section 504 as late as 1975, conflict over the regulations for Section 504 culminated with unprecedented demonstrations by the disability community in the spring of 1977.

Three consecutive administrations delayed action in issuing regulations for Section 504. Part of the problem was that Section 504 did not expressly mandate regulations. Accordingly, for the year culminating with President Nixon's resignation on August 9, 1974, the Nixon administration failed to take any action toward developing Section 504 regulations. President Gerald Ford, however, supported the promulgation of Section 504 regulations and assigned HEW with the responsibility to issue them. HEW's Office for Civil Rights (OCR) was appointed to write the regulations. This was significant because such regulatory agencies as RSA, a potential alternative for writing the Section 504 regulations, focused mostly on community education and voluntary compliance among recipients of federal assistance. OCR, however, based its regulations on its history in dealing with civil rights and segregation, where firm legal foundations rather than mere voluntary compliance was necessary.

Under the leadership of John Wodatch, OCR prepared regulations that offered a new definition of disability, issued mandates for educating persons with disabilities in public schools, and demanded accessible buildings and transportation. But shortly after presenting the regulations to HEW Secretary Casper Weinberger on July 23, 1975, Weinberger was replaced by David Mathews, who was reputed to be "a cautious and indecisive man who tended to be more philosophical than pragmatic in running the department." Mathews did not oppose the regulations outright. But by demanding further analysis of the regulations, rather than taking the usual step of publishing the regulations as a proposal, Mathews delayed action. He even sent the regulations outside of HEW for review by a private firm. On March 11, 1976, OCR resubmitted the regulations with revisions, but two months passed before Mathews presented the regulations to the public.

The failure of HEW to issue regulations for Section 504 began to attract attention. By the fall of 1974, for example, Jim Cherry, a young attorney and disability lobbyist who had a rare, degenerative muscular disease, began writing letters to HEW requesting that the department issue regulations. But nothing came of these efforts. Ultimately, Cherry turned to the legal system and found a firm, Georgetown's Institute for Public Interest Representation (INSPIRE), to support his cause pro bono. After a year of presenting formal petitions demanding that HEW issue regulations, INSPIRE finally filed a case against HEW on February 13, 1976--Cherry v. Mathews. Later that spring, a group of people with disabilities demonstrated in Secretary Mathews's office. The delay also began to catch the attention of Congress, which held oversight hearings on May 5 to determine why no action had been taken.

Mathews finally presented the regulations to the public on May 17, 1976, but he issued them only as an intent to propose regulations, not an actual proposal. Mathews did not issue a Notice of Proposed Rule Making, the standard procedure for soliciting public feedback on proposed regulations, until July 16. Three days later, on July 19, the district court of Washington, D.C., ruled on the Cherry v. Mathews case and ordered Mathews to promulgate regulations. In the next six months, HEW solicited public comment. OCR made minor changes to the regulations and presented the revised regulations to Mathews on January 10, 1977. Over three years had now passed since the Rehabilitation Act became public law. But Mathews still stalled. On January 18, instead of signing the regulations, he sent them to the Senate Committee on Labor and Public Welfare for review--an unprecedented action in regulation writing. That same day, the district court ordered Secretary Mathews to cease the delay. But, two days later, Jimmy Carter was inaugurated as president and Mathews left office.

During his campaign, Carter had promised to make people with disabilities "active partners in our attempts to achieve . . . full civil rights" and made a commitment to signing the regulations. As president, he nominated Joseph Califano to be Secretary of HEW. Califano allegedly supported the concept of Section 504, but he too postponed action on the regulations; he wanted to review them before attaching his name. Califano worried especially about the costs associated with the statute and resisted the inclusion of drug and alcohol abusers as a protected class. When he proposed implementing a more limited concept of making individual programs accessible rather than demanding broad, structural changes, however, his actions drew the ire of persons with disabilities.

Disability Protest

Opposition to the delay in signing regulations developed from growing collaboration among people with disabilities. In the early 1970s, the primary gathering place for people with disabilities was the annual spring conference of the President's Committee on Employment of the Handicapped (PCEH). President Harry S. Truman had founded PCEH in 1947 to assist physically disabled veterans in finding employment. In the 1960s, PCEH expanded its mission to include persons with mental retardation and mental illness. In addition to drawing attention to employment for people with disabilities, which naturally led to a broader interest in other disability issues, PCEH became the first central meeting ground where disability advocates, disability professionals, and public officials could share ideas and set agendas for the future.

At the 1973 PCEH meeting, following Nixon's second veto of the Rehabilitation Act and the accompanying disability protest, a group of disability activists discussed the need for an organized, collective disability voice that would unite the disparate disability-specific organizations. Only then, they thought, could they exert effective influence on the Federal Government. The coalition would not disband other disability organizations: they would become its members. In 1974, Fred Fay, Roger Peterson, Dianne Latin, Al Pimentel, Judy Heumann, Fred Schreiber, and others set up a committee to write the constitution and bylaws for such an organization. They named it the American Coalition of Citizens with Disabilities (ACCD): it was the first major cross-disability organization. The purpose of ACCD was to enhance communication among people with disabilities, promote the rights of disabled persons, educate people about their rights, and foster collective political action.

In April, 1975, again at the annual PCEH meeting, representatives from a spectrum of disability organizations approved the ACCD constitution and bylaws and established a governing board. They elected Eunice Fiorito, a blind woman who had become the first director of the New York City Mayor's Office for the Handicapped (the first of its kind) in 1972, to be president. Fiorito was an aggressive and effective disability rights advocate and crucial to ACCD's early development. "If it wasn't for Eunice," said Rubenfeld, who was one of the successors as ACCD President, "I don't think there'd be an ACCD." Schreiber, Heumann, and Fay joined Fiorito as vice president, secretary, and treasurer. In 1976, Frank Bowe, a recent Ph.D. graduate, became the first Executive Director. Scores of disability organizations scurried to join ACCD. Some, such as the Houston Coalition for Barrier Free Living, were established in order to be a part of ACCD.


The fast-growing power and reputation of ACCD positioned it take the lead in coordinating advocacy regarding the Section 504 regulations.


The fast-growing power and reputation of ACCD positioned it take the lead in coordinating advocacy regarding the Section 504 regulations. ACCD threatened to demonstrate at the 1976 Republican convention with black coffins, symbols of the plight of people with disabilities, if the Ford administration did not act. Representatives of ACCD worked with Democrats to have Carter issue statements that he would ensure the signing of the regulations if elected. On the first day of the Carter administration in January, 1977, ACCD sent a telegram to HEW reminding the agency of the 504 regulations and, the next day, showed up at the HEW office to demand signing within 30 days. In addition, ACCD Executive Director Frank Bowe, who worked full time in ACCD's Washington office, organized the production of "Sign 504" buttons to heighten public awareness about the regulatory stalemate.

After it became evident that a signature from Secretary Califano was not forthcoming, ACCD began considering ways to exert additional pressure. Members decided to be dramatic and attract press coverage. "When you put the pressure on, you embarrass politicians," said Rubenfeld. Accordingly, in February, ACCD decided to stage sit-ins at Regional Offices of HEW. On March 18, ACCD wrote a letter to President Carter asserting that disability advocates would resort to political action if the regulations were not signed by April 4. "The disabled are furious over what they see as a retreat by President Carter on his promises" to help people with disabilities, reported The Washington Post in an editorial publicizing the planned sit-in. Still, no action came. On Monday, April 4, at 1:30 p.m., Frank Bowe, Dan Yohalem, Deborah Kaplan, and others met with Secretary Califano in his office. Califano tried to explain the delay and expressed support of public demonstrations to urge signing of the regulations. The disability activists, however, stated their demand for immediate signing of the unchanged regulations and then walked and rolled out of the office. Television cameras captured the events on film. The following morning, on April 5, hundreds of disability activists gathered at the Capitol building, where they publicly declared their demand for immediate signing of the regulations. Later in the afternoon, they marched several blocks from the Capitol to the HEW building. Simultaneously, activists staged demonstrations at regional offices in Atlanta, Boston, Chicago, Dallas, Denver, Philadelphia, New York, San Francisco, and Seattle.

In Washington, the HEW demonstration had two components. Most of the activists who marched from the Capitol remained outside the HEW building to make sure the protest stayed in the eye of the media. A second group of about fifty activists, however, stealthily entered the building in small groups and then gathered in the waiting room outside Califano's office. They tried to storm Califano's personal office, but dozens of guards blocked their way. Consequently, they decided to stay in the waiting room until they met the secretary personally. The guards permitted them to stay, but they imposed tight restrictions. When the protesters tried to order food around 5:00 p.m., the guards ripped the phones from the wall. Security also shadowed activists to the restrooms to prevent use of public phones. Guards even prohibited Schreiber, who was the president of NAD, from contacting his wife or leaving the floor to get his heart medication. Eventually, however, the guards recognized the severity of the situation and enabled Schreiber to receive his medication. The protesters went without food and stayed over night--sleeping on couches, desks, and the floor. On Wednesday, April 6, Secretary Califano met with the protesters and asked them to leave. But he would not commit to signing the regulations immediately. The demonstrators discussed staying and being forcibly arrested, but voted to end the protest that afternoon instead.

The longest demonstration was in San Francisco, where the group refused to leave the HEW building until the regulations were signed. As in Washington, HEW officials initially tried to squelch the protest by starving the demonstrators and cutting off telephone communications. Persons whose conditions required personal attendants, medication, and medical devices such as catheters were thus putting their health and lives at risk. The clamp-down, however, served to motivate and unite the demonstrators rather than discourage and disband them. Moreover, largely due to the intervention of Governor Jerry Brown, protesters were ultimately allowed to stay in the building and receive outside assistance. Within days, the number of people dwelling inside the building grew to well over 100.


The battle over Section 504 regulations gave voice to the disability rights movement.


The surrounding community, which cherished its tradition of protest, aided the protesters. Area grocers and restaurants donated food. The local Black Panthers prepared and delivered an Easter dinner. And community religious leaders assisted in celebrating Easter and Passover. Congressman Phillip Burton helped win the installation of pay phones. This helped demonstrators maintain their lines of communication with the outside world, which they sustained as well through banners, sign language, and a set of walkie-talkies smuggled in by a local gay activist group, the Butterfly Brigade. On the inside, demonstrators were cultivating "a mini-Woodstock," as one journalist described it. Rubenfeld called it "a love-fest." Living in open quarters stimulated close friendships. People with diverse disabilities came to know and understand each other better, which helped cultivate a united vision for their common betterment. The persistence of the demonstrators was a powerful testimony to their determination to achieve their civil rights. And their actions left Secretary Califano little choice but to sign the regulations without change, which he finally did, on April 28. Two days later, the disability activists ended their occupation of the HEW building.

The Rehabilitation Act of 1973, Section 504, and the 504 regulations were significant for a number of reasons. First, Section 504 eventually helped change the way people thought about disability. As one disability historian explained: "The words we use to define problems, or to evaluate potential solutions to those problems, structure thinking by linking concrete situations to moral categories. Section 504 transformed federal disability policy by conceptualizing access for people with disabilities as a civil right rather than as a welfare benefit." This was a decisive and important shift. Disability had long been viewed as a condition meriting government assistance, but this elevated disability to the realm of civil rights and gave persons with disabilities access to a new legal vehicle for asserting their place in American society. The regulations affirmed this point: Section 504 "represents the first federal civil rights law protecting the rights of handicapped persons and reflects a national commitment to end discrimination on the basis of handicap."


Legislation develops in political, social, intellectual, and cultural contexts. Successful laws are as much about the people that shape them as they are about legislative language.


Second, the battle over Section 504 regulations gave voice to the disability rights movement. The disability community's minor role in bringing about the original Section 504 legislation is less important than the protests that the regulations spurred. Secretary Califano would have had to sign the regulations eventually. But the protests made it extremely difficult for the secretary to incorporate any changes that might have weakened the regulations. And they left a lasting image of persons with wheelchairs taking over federal buildings--a practice which became a model for future demonstrations.

Third, the Section 504 regulations established legal standards for nondiscrimination tailored to the civil rights needs of persons with disabilities, which would later be replicated in the ADA. The regulations determined that ending discrimination for persons with disabilities meant taking proactive steps to remove barriers and make reasonable accommodations. Additionally, the regulations balanced this need against a limit of "undue hardship" (see Appendix F) for the federal agencies and contractors covered by the regulations.

The Civil Rights Act of 1964 and the Rehabilitation Act of 1973 would be the principal legal foundation for the ADA: the twin pillars. There could be no ADA without them. It was not enough, however, only to have a legislative foundation. Passing legislation is a complicated process; it is not merely an inevitable and logical development of legal principle. Legislation develops in political, social, intellectual, and cultural contexts. Successful laws are as much about the people that shape them as they are about legislative language. Thus, even with the legal framework of the Civil Rights Act of 1964 and the Rehabilitation Act of 1973 well-established by 1980, the ADA could not have succeeded at that time. The social, political, and cultural contexts necessary to support such legislation were simply not yet in place. While the 1977 protests were the crowning achievement of ACCD and a major rite of passage for the disability rights movement, the movement was still in its infancy. Yet, over the ensuing decade, the disability rights movement bloomed. The disability community attained a new sophistication in legal expertise, developed a political presence in the White House and on Capitol Hill, and established credibility with the broader civil rights community.

Growth of the Disability Rights Movement


The disability rights movement grew primarily out of personal experiences and the recognition that current quality of life was inadequate.


As Congress and HEW in Washington were writing civil rights language into federal laws and regulations, important work within the disability community was taking place throughout the nation. A disability rights movement was being born. It was not the first time people had advocated for the rights of persons with disabilities, but the movement that formed in the 1970s was uniquely consumer-driven. Not all constituencies of the disability community supported the effort to view disability as a civil rights issue with the same vigor. Indeed, great obstacles had to be overcome to establish a meaningful disability rights movement.

Although the disability rights movement developed in the tradition of the 1960s social movements, a number of factors made the rise of this movement much more difficult. "Disability" as a class did not share the same cohesive forces manifest with race and gender. In the 1950s and 1960s, persons who were blind, paralyzed, or mentally ill did not naturally share a common identity. In fact, persons with different disabilities were often in conflict over limited government resources. Moreover, disability transcended and intersected such categories as race, gender, and class that often provided a basis for affinity and identity. Persons with disabilities generally did not inhabit the same physical communities that helped fuel the civil rights movement. And segregation for persons with disability meant not only separation from mainstream society, but also isolation from each other.

The disability rights movement began to take shape during the 1970s in spite of these obstacles. It is difficult, however, to explain its origins neatly, for it derived from multiple sources. While the movement drew on various cultural currents to achieve its ends, it grew primarily out of personal experiences with disabilities and the recognition that current quality of life was inadequate. Even though most persons within the disability community shared similar goals--such as education, jobs, dignity, access, and equal participation--the wide variety of disabilities meant that subgroups of the disability community did not always seek the same objectives. The activities of one group were not only often unknown to others, at times they ran counter to the efforts of others.

One key source of the disability rights movement was the independent living movement. Early threads of the movement can be seen as early as the 1950s, when people such as Mary Switzer and Gini Laurie began to realize that disability services could be cheaper and more effective when provided through personal attendant care at home rather than in institutions. In the 1960s, the independent living movement gained momentum predominantly through the influence of college students. In 1962, for example, four students with disabilities at the University of Illinois at Champaign-Urbana helped start the movement by leaving an isolated facility to reside near campus in a home modified for accessibility. They then began working with the University to improve campus accessibility and gain increased control over their own lives.

A similar and more visible effort took place the same year, when Ed Roberts, who was paralyzed from polio, entered the University of California at Berkeley. The school housed him in the third floor of Cowell Hospital, where he was aided by friends and attendants with eating and dressing. Roberts thrived. He earned not only his undergraduate degree, but also a masters degree in political science. News of his success spread, and by 1967 twelve students with major disabilities joined him in Cowell. These students, who called themselves the "Rolling Quads," began holding brainstorming sessions about ways they could increase their self-sufficiency. Rather than be directed by, and dependent on, bureaucrats, they wanted to be able to secure their own funding, find their own jobs, and make their own decisions.


The potential of persons with disabilities could not be realized simply by trying to "rehabilitate" the individual. "Society" also had to be "rehabilitated."


To promote this they secured a grant from HEW, in 1970, to finance a Physically Disabled Students" Program (PDSP). The goal of the program was independent living. The ramped office provided access to residential counselors, tips on where and how to obtain personal attendants, and a wheelchair repair shop. To meet the growing requests for service from non-students, PDSP leaders joined to incorporate the Berkeley Center for Independent Living in 1972. As one journalist observed: "It would be run by people with disabilities; approach their problems as social issues; work with a broad range of disabilities; and make integration into the community its chief goal. Independence was measured by an individual's ability to make his own decisions and the availability of the assistance necessary--from attendants to accessible housing--to have such control."

Shortly after the Berkeley center began its operation, other programs opened their doors: in Boston, Massachusetts; Houston, Texas; Columbus, Ohio; and Lansing, Michigan. The movement also gained support in Congress. The original Rehabilitation Act of 1972 included an Independent Living Program to help promote independent living services around the country. Although it was eliminated as part of the compromise with President Nixon in 1973, the Carter administration afforded a new opportunity. The program was established as part of the 1978 Amendments to the Rehabilitation Act and became known as the Title VII program. Despite its very limited funding, the Title VII program breathed life into the incipient independent living movement. It helped establish standards for independent living programs that ensured a high level of consumer control and the provision of core services. In the ensuing decade, the number of independent living centers around the country grew exponentially.

The independent living movement represented nothing less than a radical transformation in thinking about disability policy. One might call it a paradigm shift. Prior to the 1970s, disability was viewed primarily as a medical issue. Persons with disabilities were considered "sick" or "impaired" and in need of a cure. They were patients who required experts" instructions about how to "get better." The problem of disability was seen to reside in the individual, who must be "rehabilitated" and returned to gainful employment.


The independent living movement represented nothing less than a radical transformation in thinking about disability policy. Advocates wanted to shed the medical model that cast them as passive recipients of professional care.


Advocates of independent living saw things differently. Infused with a rights mentality sparked by the civil rights, women's, and anti-war movements, these individuals wanted to shed the medical model that cast them as passive recipients of professional care. Instead they asserted their rightful place in society. They pursued mechanisms for self-help rather than relying predominantly on authorities. They advocated a consumer spirit that established the role of the consumer as the decision-maker and people with disabilities as the experts. And they rejected the idea that persons with disabilities, even persons with severe disabilities, should be isolated in custodial institutions. Instead they promoted community-based living. Moreover, advocates of independent living hoped to improve the lives of people with disabilities by promoting cross-disability interaction. People with diverse disabilities could help each other through peer counseling and present a stronger voice for policy change.

According to the philosophy of independent living, the problem of "disability" did not reside simply in the individual, but also in society, in the rehabilitation process, the physical environment, and the mechanisms of social policy. The full potential of persons with disabilities therefore could not be realized simply through trying to "rehabilitate" the individual. "Society" also had to be "rehabilitated," by making the physical environment more accessible and destroying the attitudes that rendered persons with disabilities as helpless victims in need of charity.

In this respect, the independent living movement was strikingly analogous to previous movements for civil rights. In the early twentieth century, people widely talked of the "race problem," referring to the presence of blacks in America. The locus of the problem was supposedly the individual black person and his or her supposed inferiority. With the civil rights movement came a new social critique. The problem was not the black person, but pervasive racism. The American economy and social structures tended to exclude blacks, rather than incorporate them as valued citizens. What was needed, therefore, was a transformation of the nature of America's institutions--through legal measures and a gradual erosion of prejudice. Feminists experienced similar problems, as the social and economic frameworks functioned to limit their opportunities. To give women their rightful place in society, fundamental structural change had to occur. And so it was with the nascent disability rights movement. Advocates argued that people with disabilities should not have to accommodate themselves to a society designed to exclude them. Instead they encouraged disabled persons to assert their right to join society and promoted reforms to facilitate participation.

This social critique, however, was not about subverting core American values. Rather, it was about partaking of the American ideology of liberty and opportunity. Persons with disabilities had the same aspirations as other Americans. This mentality also challenged disability professionals. Many disability rights advocates viewed these professionals as accomplices in discrimination because they treated disabled persons as "sick" patients. In addition, advocates thought some special interest organizations contributed to infantile notions of persons with disabilities by appealing to charity for "helpless" children.

The rise of independent living centers was a crucial aspect of the disability rights movement. But other contributions were also significant: for example, those concerning developmental disabilities and mental illness. Organizations such as the ARC, which endeavored to assist persons with developmental disabilities in living better lives, focused especially on two issues: institutionalization and education. Advocates found appalling conditions and subhuman standards in many institutions for people with disabilities. In addition to exploring ways to develop community-based alternatives, they promoted institutional reform. In the early 1970s, the ARC collaborated with a group of Washington-based organizations to pass a law to protect the rights and treatment of persons with developmental disabilities in institutions. By 1975, under the leadership of Paul Marchand of the ARC, the group of organizations formally identified themselves as the Consortium for Citizens with Developmental Disabilities (CCDD). Their efforts culminated in the Developmental Disabilities Assistance and Bill of Rights Act of 1975, which promoted respect for the basic human rights of institutionalized persons. Congress built on this Act in 1980 with the Civil Rights of Institutionalized Persons Act, which gave the Federal Government authority to sue local operators of institutions that consistently violated the constitutional rights of persons in prisons, mental hospitals, and other institutions.

CCDD was also interested in improving educational prospects for persons with developmental disabilities. In this regard they shared the interests of a variety of disability organizations, whose collective efforts assisted in passage of the Education for all Handicapped Children Act of 1975 (more commonly known as Public Law 94-142). This act, supported by persons with disabilities across the spectrum, was a milestone. It had the crucial effect of raising a generation of persons with disabilities who expected to attain a rightful place in American society, not isolation and segregation. This generation would compel its teachers and peers to develop the same understanding. A decade later, it would help mold public opinion about the ADA.


"DIA was made up of young disabled dreamers who believed that fighting for their rights was their obligation."

--Judy Heumann


In addition to centers for independent living and disability-specific organizations, other important elements of the growing disability rights movement included legal action centers and organizations devoted to political protest. For example, as an outgrowth of a legal activist project in law school, Robert Burgdorf and several other students at the University of Notre Dame established the National Center for Law and the Handicapped (NCLH). With support from the university, the American Bar Association, the ARC, and HEW, NCLH pursued cases around the country to help persons with disabilities. Their first work was based on due process and equal protection law, but Section 504 provided a new and stronger legal foundation. It "seemed like manna from heaven," said Burgdorf. Other legal centers active in promoting the rights of per sons with disabilities were the Public Interest Law Center of Philadelphia (PILCOP) and IN SPIRE of Georgetown University.

While these organizations concentrated their efforts on the legal front, others focused exclusively on political activism. In 1970, Judy Heumann, who used a wheelchair because of polio, founded Disabled in Action (DIA). It developed out of publicity generated by Heumann's lawsuit against the New York City Board of Education, which had denied her a license to teach. Heumann and such friends as Denise McQuade, Frita Tankus, and Larry Weisman decided to use the case as a vehicle to heighten attention to disability issues in general. As people with disabilities and their families read and saw the coverage of Heumann's case, many began calling her about their own experiences: a cry for broader, collective action. Heumann and others felt that existing organizations were not sufficiently politically active: DIA would thus be overtly and exclusively political. It "was made up of young disabled dreamers who believed that fighting for their rights was their obligation," said Heumann. Two more DIA organizations soon formed in Philadelphia and Baltimore. They were all cross-disability in focus and engaged such issues as transportation, architectural accessibility, television telethons, sheltered workshops, and institutionalization. In 1972, Heumann led DIA to protest President Nixon's veto of the Rehabilitation Act, culminating with two separate occupations of Nixon's headquarters just days before the election. DIA was also instrumental in protesting HEW's delay in issuing the Section 504 regulations.

The experiences with political protest, and especially the 1977 demonstrations, led Robert Funk, Mary Lou Breslin, Pat Wright, and Judy Heumann, who were in varying ways associated with the independent living center in Berkeley, to focus on the absence of a national legal defense fund for persons with disabilities. As a partial solution, Heumann helped found the Disability Law Resource Center (DLRC) as part of the Berkeley Center for Independent Living. The purpose of DLRC was to provide legal services to individuals with disabilities: studies had shown that persons with disabilities were not adequately served by state legal services. Robert Funk and Paul Silver were among its leading attorneys.

To help manage the legal affairs of the organization, Funk and Silver hired a young attorney named Arlene Mayerson. Interestingly, Mayerson had no prior experience in disability law; she was trained in civil rights law. But Funk and Silver selected her over scores of applicants, including persons who recounted stories of working with disabled children in camps. "They wanted someone who didn't have a lot of preconceived notions about what was best for people with disabilities," Mayerson explained. "They wanted someone who thought in terms of civil rights and whom they could mold in the disability rights movement's image." At DLRC Mayerson addressed any issue people brought to her--being kicked out by a landlord, getting fired, or being denied entrance to a restaurant--with whatever legal means were available at the time.

DLRC was only a two-year model program. As funding approached its end, Funk, Breslin, and Wright decided that a more comprehensive and long-lasting program was needed: a national legal defense fund in the tradition of those for minorities and women. Consequently, in 1980, they created and opened a new organization called DREDF, the Disability Rights Education and Defense Fund. Wright referred to Funk as "the architect" of the operation, the one who was responsible for its stable foundation. Breslin provided the "vision" and excelled at management. Wright described herself as the "political strategist" and the "brawn" of the organization. Mayerson joined these three and represented "the brains" behind the legal operation. This blend of talent, said Wright, was the key to DREDF's success.

Through DREDF, Funk, Wright, Breslin, and Mayerson could advocate a national legislative and law reform agenda to provide more leverage for meeting the concerns of persons with disabilities. DREDF had two main goals. The first was "to make disability a real true partner in the civil rights community nationally." Up until that time, although many persons were increasingly demanding their own rights, neither the civil rights community nor most disability interest groups viewed disability rights primarily as civil rights. Rather, most groups focused narrowly on their own missions shaped by particular diagnoses and impairments. DREDF hoped to change that. The second goal was to pursue law reform that would provide persons with disabilities legal protections equivalent to those available to other minorities and women.

As a first step toward meeting these goals, DREDF leaders sponsored a meeting in San Francisco in the fall of 1980. They invited prominent strategists, organizers, and attorneys from other civil rights causes. The purpose of the meeting was twofold. First, DREDF wanted to educate the civil rights community about disability. They prepared a briefing book that laid out how the education, employment, and voting problems faced by persons with disabilities were similar to those confronting racial minorities and women. The second objective was to provide DREDF with an opportunity to learn from the successes of other civil rights causes and make contacts so that DREDF and other disability organizations could become full partners in the civil rights community.

Funk, Wright, Breslin, and Mayerson learned an important lesson from the meeting. If DREDF were to achieve its goal of being a truly national legal defense fund, it had to have a presence in Washington. Thus, in 1981, they set up an office in the nation's capital. There they encountered Evan Kemp, Jr., who, since 1980, ran the Disability Rights Center (DRC)--an organization sponsored by Ralph Nader. Although Kemp worked out of just two small rooms, he donated one to DREDF. Kemp had begun making his own imprint on the disability rights landscape. Since 1976, first under the direction of Deborah Kaplan and then under Kemp, DRC focused its efforts on eliminating employment discrimination by disseminating information and lobbying to retain programs. It also educated the general public about the disability rights movement by submitting articles to newspapers and magazines, and appearing on television shows and radio spots.


"These prejudices create stereotypes that offend our self-respect, harm our efforts to live independent lives and segregate us from the mainstream of society."

--Evan Kemp, Jr.


One of Kemp's favorite campaigns was assaulting the image of "pity" that dominated public portrayals of persons with disabilities. He focused especially on the Jerry Lewis Muscular Dystrophy Association Telethon, which, Kemp argued, contributed to prejudice against persons with disabilities. "These prejudices create stereotypes that offend our self-respect, harm our efforts to live independent lives and segregate us from the mainstream of society," Kemp wrote. Moreover, the telethon reinforced infantile notions of persons with disabilities by showing them as dependent children. It lent credibility to public images of disabled persons as "helpless." It also underscored the notion of persons with disabilities as "sick" and in need of cure. "If it is truly to help," said Kemp, "the telethon must show disabled people working, raising families and generally sharing in community life," and promote independent living programs rather than servile dependence. Kemp also defended efforts to integrate persons with disabilities through barrier removal by arguing how it would benefit all Americans: for example, bicyclists and stroller-users taking advantage of curb cuts and subway elevators.

After joining Kemp in Washington, Wright and Mayerson began introducing themselves to people and groups around Washington "to say we're here to do one thing, and that's civil rights." The early 1980s, however, were not exactly an auspicious time to be heading to Washington to promote civil rights. President Ronald Reagan entered office with the intention of minimizing federal regulations and reducing government's role in society, not establishing new rights and more regulations. This placed most persons in the disability movement in a defensive posture, trying to hold the territory already secured rather than launching new expeditions. But DREDF had other things in mind.

One of the most important contacts DREDF made at the 1980 San Francisco meeting was with Ralph Neas, Director of the Leadership Conference on Civil Rights (LCCR). LCCR was the legislative arm of the civil rights movement and coordinated the legislative side of all civil rights initiatives. It worked by the consensus of all conference constituencies: for example, African Americans and women. DREDF believed that any effective campaign to advance the civil rights of persons with disabilities would need the support of LCCR, which carried over thirty years of experience in civil rights, had extensive relationships in Congress, and had firmly established its credibility. Neas described Wright and Mayerson as "thinking five or six years down the line" in their solicitation of LCCR at the conference. And it was at the 1980 meeting, he said, that the strategy for achieving comprehensive civil rights for persons with disabilities was first articulated.

DREDF was not the first disability organization to join with LCCR. PVA and ACB, for example, had been long-time members of LCCR. DREDF was unique, however, in seeking a tight alliance with the civil rights community as its central mission. Although Wright and Mayerson established a link with Neas and the LCCR as a result of the San Francisco conference, and Wright eventually represented DREDF on the LCCR Executive Board, they did not think they could count on LCCR's support immediately. First they had to establish their own credibility and get involved in LCCR campaigns as much as any other group. Over the next several years they did precisely that.

First Victory

Sometimes, as in basketball, the best way to launch an offensive assault is to get a good defensive stop--a steal, a forced turnover. President Reagan's Task Force on Regulatory Relief provided just such an opportunity. No single president since Franklin Roosevelt, wrote one historian, "altered the political landscape so radically and in such a short period" as did Reagan. He entered office on January 21, 1981, with the support of a business coalition dedicated to rescuing a languishing, inflation-ridden economy. To Reagan, government was primarily an "obstacle to personal achievement and opportunity." Alternatively, he promoted the idea of the "self-reliant, self-made individual." For domestic policy, Reagan proposed and obtained the Economic Recovery Tax Act of 1981. This act provided deep personal and corporate tax cuts that primarily benefitted the wealthiest Americans, on the assumption that wealth would trickle down to assist lower-income persons.

By insisting on a combination of tax cuts and vast increases in military spending, President Reagan was able to force a reduction in federal, domestic expenditures. Thus, in addition to freeing up business through tax cuts, Reagan wanted to roll back the development of the welfare state by advocating reductions in social spending. He achieved this aim through the Omnibus Budget and Reconciliation Act of 1981 (OBRA), which cut $140 billion from the federal budget through Fiscal Year 1985. Reagan also hoped to aid businesses, school boards, and government units through a deregulation campaign: the Task Force on Regulatory Relief. He appointed Vice President Bush to lead these endeavors, who in turn designated his chief counsel, C. Boyden Gray, to take charge. Over 150 different pieces of enacted legislation were targeted for analysis.


Section 504 was now known by many as "the Civil Rights Law for the Handicapped."


As Kemp observed, President Reagan's emphasis on self-reliance and rugged individualism resonated with some aspects of the disability rights movement. But Reagan's initiatives did not generally offer hope to the disability community. Reagan's civil rights record, for example, was cause for concern: he had won his way to the California governorship in part by standing against student and civil rights protests in the 1960s. And his Task Force on Regulatory Relief posed a direct threat to the civil rights gains of the disability community. Three of the early targets of the task force were the Section 504 regulations, the Education for all Handicapped Children Act (P.L. 94-142), and the regulations for the Architectural and Transportation Barriers Compliance Board (ATBCB). Although the ATBCB regulations were relatively technical and non-controversial, changes to Section 504 and P.L. 94-142 regulations had potentially staggering implications.

Section 504 was now known by many as "the Civil Rights Law for the Handicapped." Any changes to it would be a major defeat and could have dire consequences for other civil rights regulations. As one civil rights attorney explained, persons in the disability community thought the Reagan administration started with disability regulations because "they thought the disability community was the least well organized and they could slip these regulations through and use them as precedents for other regulations." Deregulation of P.L. 94-142 posed an additional threat to the educational prospects of persons with disabilities, which in turn might jeopardize employment opportunities. The administration also considered introducing legislation limiting the level of service for, and individual attention to, persons with disabilities in the educational process.

Prior to becoming chief counsel to Vice President Bush, Gray had no experience with disability policy. But these regulations immersed him in it, and he gained a new education. The Task Force started with Section 504. By January, 1982, Gray had received a draft of proposed changes from the Department of Justice (DOJ). This draft was leaked, however, and came into the hands of disability organizations, including DREDF. Wright and Funk convened a meeting of nine disability organizations to discuss the proposals, which decided to have DREDF lead the fight.


Persons in the disability community organized a nation-wide, grassroots letter-writing campaign and flooded the White House with letters--over 40,000 by 1983.


In March, the Office of Management and Budget (OMB) supplied DREDF with extra ammunition: a leak of OMB's proposed changes. OMB's proposals included a provision that would allow federal grant recipients, in certain cases, to weigh the cost of an accommodation against the "social value" of the person involved. "This was a cost-benefit analysis of how human you are," said Funk. DREDF worked with such organizations as NCIL and ARC to help mobilize disability groups all over the country to protest by writing letters. For NCIL, which was founded that year, this was one of the first opportunities to join other organizations in national advocacy efforts. In Washington, Wright and Funk met extensively with Gray to discuss the details and ramifications of changing the regulations. They were joined by Kemp, who brought a trump card to the table: himself. For over a decade, Gray and Kemp had been bridge partners and had become close friends. Kemp built on this relationship to persuade Gray against permitting damaging alterations to Section 504 and P.L. 94-142. Gray consequently became a mediating force between those rewriting the regulations and the disability lobbyists.

The controversy intensified later in the fall when the Task Force began consideration of the education provisions. Parents of persons with disabilities were outraged and united with other disability advocates to resist President Reagan's actions. Persons in the disability community organized a nationwide, grassroots letter-writing campaign and flooded the White House with letters "over 40,000 by 1983. As part of the review process, Gray held hearings throughout the country. Thousands of persons and parents of persons with disabilities attended to demonstrate their opposition. They presented testimony explaining the harm that would be caused by changing the regulations. One two-inch-tall Los Angeles headline declared: "Parents of Disabled Children Boo Reagan Proposals." Congress joined these efforts by sending a letter signed by majorities in both chambers urging the president to support the full funding of P.L. 94-142. House Minority Leader Robert H. Michel helped arrange a meeting between Sally Hoerr, president of the Illinois Alliance for Exceptional Children and Adults, and Chief of Staff James A. Baker, III, to enable Hoerr to articulate her opposition.

By January, 1983, Gray had a final draft of the proposed revisions in his hands, but Kemp and Wright pleaded with Gray not to make the changes. Two months later, in part because of Gray's influence, Bradford Reynolds, Assistant Attorney General for Civil Rights, finally agreed to abandon the regulatory efforts. And on March 21, Vice President Bush wrote a letter to Kemp informing him that Section 504 and P.L. 94-142 would be left untouched. Bush explained that conversations with members of Congress and with the disability community made him understand the negative impact such changes would have. Especially helpful, Bush said, were the comments of persons with disabilities and their families. "Your commitment to equal opportunity for disabled citizens to achieve their full potential as independent, productive citizens is fully shared by this Administration," he told Kemp.

This was a huge victory, a big defensive stop. And it was important not simply for the content of the regulations. What had started out as a threat to roll back years of gains served to unite the disability community. For the first time persons and parents of persons with disabilities and scores of different organizations joined together for a common cause, to defend disability rights. "It showed the disability community that there was a reason to write in all those responses to alerts," Mayerson said, "and it showed the Administration that there was a political element here as well as a legal righteousness in the cause." Gray concurred: "One of the things I found is [that] the disability community . . . wanted to be treated as a potent political force just like any other force. [It] was part of the empowerment."


The activities of the disability community in the 1980s may largely be viewed as a defensive effort to sustain the gains of the 1970s.


This two-year process was also crucial for the relationships it fostered. Wright, Funk, and Kemp were now close allies. During the ADA deliberations, Funk and Kemp would be working within the administration instead of lobbying it from the outside--respectively as a White House negotiator and Chairman of the Equal Employment Opportunity Commission (EEOC). They would be important links for the disability community. Moreover, through the efforts of Wright, Funk, Kemp, Mayerson, and thousands of Americans, Gray and Vice President Bush had earned a valuable education that would prove indispensable during the deliberations over the ADA. Gray marveled at how Bush "intuitively grasped" disability issues. Gray and Bush also became genuinely interested in disability issues. Bush, for example, began asking Kemp to write his speeches when he spoke before disability groups, which enabled him to develop relationships with others in the disability community.

Building a Winning Record

Washington likes winners. Throughout the 1980s, the disability community recorded an impressive string of judicial and legislative victories that helped build the disability movement's credibility in Washington. (See Appendix B for a chronology and descriptions of legislative, judicial, and political events preceding the ADA.) In the process, crucial networks continued to develop. The DREDF-arranged San Francisco conference of 1980 laid the foundation for forming an alliance with the civil rights community. Neas reports meeting with Wright and Mayerson at the conference and notes one occasion in which Wright emphasized that it was extremely important to be victorious in the first civil rights battle for people with disabilities. They therefore decided to tackle something comparatively small: the issue of voting accessibility. The goal was to ensure that the principle of the 1965 Voting Rights Act, equal access to voting, encompassed persons with physical impairments. Wright and Neas and others achieved this goal with the passage of the Voting Accessibility for the Elderly and Handicapped Act of 1984. Neas explains that this victory was absolutely crucial: "If we had not won on the Voting Rights extension, . . . I don't think we would have won any civil rights bills after." Indeed, many more difficult challenges lay ahead, and that victory was an important foundation for facing them.

The activities of the disability community in the 1980s may largely be viewed as a defensive effort to sustain the gains of the 1970s. In addition to the deregulation efforts of the Reagan administration, the disability community also faced a Supreme Court that did not enforce the disability rights that had been attained and threatened to overturn established provisions. In fact, the preponderance of legal activity within the disability community during the 1980s related to the Supreme Court and its rulings. Things did not start out well. In a 1979 Supreme Court ruling in Southeastern Community College v. Davis, the Court questioned the viability of the regulations developed to implement Section 504. The case addressed a nursing school's responsibility to accommodate the needs of a hearing-impaired applicant. The Court's conclusion that such accommodations were not required by the school was a significant defeat for the disability community.


Discrimination cannot be justified by ignorance.


The Supreme Court did not take on another Section 504 case for five years, but in 1984 the results were much more encouraging. In Consolidated Rail Corporation v. Darrone, the Court affirmed that the Section 504 regulations did indeed apply to employment discrimination. DREDF had taken the lead in arguing the case for the disability community and was pleased to see its efforts pay off: the Court established that courts must give considerable deference to the 504 regulations. This decision reflected the results of a Pennsylvania District Court case, Nelson v. Thornburgh, which ruled that the state's Department of Public Welfare was obligated to absorb the costs of readers or electronic devices for visually- impaired employees, because the cost did not constitute an "undue hardship."

The Supreme Court's decisions, however, were not all positive for the disability community in the 1980s. From 1984 to 1986, the Supreme Court handed down six cases with, at best, mixed results. In the 1985 decision Alexander v. Choate, the Court ruled against a group of Medicaid claimants, alleging the state violated Section 504 by reducing the number of days Medicaid covered for inpatient hospitalization. They argued the policy had a disparate impact on persons with disabilities and that the policy should therefore be prohibited. Although the Court decided against the plaintiffs by affirming the policy, it made an important ruling on the nature of disability. The Court stressed that disability discrimination came most often not in the form of direct, conscious discrimination, but rather by unconscious neglect: curbs without ramps for wheelchairs, for example. Laws directed against disability discrimination therefore had to target discriminatory practices deeply embedded in society.

Also in 1985, in City of Cleburne, Texas v. Cleburne Living Center, the Court considered whether a state zoning agency could exclude a group home for persons with developmental disabilities. The Court rejected an argument that persons with disabilities should be treated as a "quasi-suspect" class, which would warrant heightened judicial scrutiny for policies treating a group as a class. But it did establish an important principle by ruling that the exclusion was unconstitutional. The Court decided that the group home did not pose any "special threat" to the city's "legitimate interests." Rather, the exclusion was based on "irrational prejudice." Discrimination against persons with disabilities, in other words, could not be justified by ignorance.

The four remaining cases prompted the disability community to solicit Congress to pass legislation devoted to overturning the Supreme Court's rulings. In 1986 alone, Congress passed three acts to reverse Supreme Court decisions. The Handicapped Children's Protection Act reversed the 1984 ruling Smith v. Robinson by ensuring that parents had the right to reasonable attorneys" fees when successful in litigation. The Civil Rights and Remedies Equalization Act overturned Atascadero State Hospital v. Scanlon by establishing that states may not be immune from alleged Section 504 violations filed in federal court. And the Air Carriers Access Act overturned U.S. Department of Transportation v. Paralyzed Veterans of America by requiring that commercial airlines be subject to the accessibility standards of Section 504, regardless of whether they received federal assistance. Through these cases, the disability community attained a new level of legal sophistication. It also developed important connections. For the Handicapped Children's Protection Act, for example, Wright and Mayerson worked extensively with Robert Silverstein, who later helped orchestrate the ADA deliberations in the Senate.

The most significant Supreme Court decision was the 1984 ruling in Grove City College v. Bell. This case concerned Title IX of the Education Amendments Act, which prohibited discrimination on the basis of sex in all programs receiving federal assistance. Although the Court sustained the principle of nondiscrimination, it ruled that the Title IX sanction of cutting off federal funds would be applied only to the particular program in question and not the entire institution. This decision had a profound impact on the entire civil rights community. Since the language prohibiting discrimination on the basis of sex in federally assisted programs or activities was identical to that for discrimination on the basis of race, age, and disability, it affected all groups equally. Consequently, overturning this decision and returning the civil rights statutes to their previous interpretation became the top priority for LCCR and the civil rights community.

This gave the disability community a perfect opportunity to work side-by-side with other civil rights groups as equal members and partners. It took three years for them to see their objective met in the Civil Rights Restoration Act, which had to be passed over President Reagan's veto. Mayerson, the chief attorney for the disability community, explained the significance of this act: "Not only could [the civil rights community] see that we could again do the work as well as they could and do the legal analysis as well as they could, but we were also actually able to open a few doors that weren't traditionally open in the civil rights community." Wright and Mayerson could build on the contacts they had made in their own disability-specific work and bring them to bear on the civil rights community's endeavors. Moreover, as Neas explained, "those four years enabled about thirty or forty people to get to know one another really well, and we went to hell and back [on] a legislative roller coaster ride." Those experiences, while trying, made for meaningful relationships and developed the trust necessary for effective collaboration.

Two further victories are important to understanding the ADA's future success. The first is another Supreme Court case, the 1987 decision in School Board of Nassau County, Florida v. Arline. In this case a school board fired a teacher exclusively because she was found to be susceptible to tuberculosis. Her attorneys tried to gain her protection under Section 504 as a handicapped person. The Court obliged them, ruling that a person with a contagious disease may be deemed a "handicapped person." Such a decision, however, had to be based on an individual basis to determine whether an individual could do a job with or without a reasonable accommodation and if there were scientific evidence that the person posed a substantial health risk to others. This was a significant victory for the disability community because it made a powerful statement against "fearful, reflexive reactions" to people and confirmed that the discrimination faced by persons with disabilities is often based on fear and misapprehension, not on reality.


The history of the ADA began "in cities and towns throughout the United States when persons with disabilities began to challenge societal barriers."

--Arlene Mayerson


A final major victory for the disability community in the 1980s came with the Fair Housing Amendments Act of 1988, which expanded the protections afforded by the Fair Housing Act of 1968 and prohibited discrimination in the sale or rental of housing on the basis of disability. The Fair Housing Amendments Act was significant for several reasons. First, it added to the momentum the disability had been building throughout the 1980s. Its passage in September, following introduction of the ADA in April, gave a big boost to the ADA. Second, it afforded people with disabilities another opportunity to work with the civil rights community on one of its top priorities. But now, for the first time, disability was an important component in a major civil rights legislative initiative. Moreover, the disability community formed a close alliance with organizations advocating the rights of persons with the Human Immunodeficiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS), who were protected under this act as persons with disabilities. Third, the Fair Housing Amendments Act broke new ground with respect to civil rights for persons with disabilities by incorporating provisions that applied to the private business sector as well as to recipients of federal funding. And Fourth, the act provided an important foundation for the ADA by building on the Arline decision: it provided that unless an individual with a contagious disease posed a "direct threat" to the health and safety of others, discriminatory practices against such persons was unlawful.

Enactment of the Fair Housing Amendments Act on September 13, 1988, marked the end of a string of national, legislative victories during the 1980s. These accomplishments were crucial for the ADA's success. As Mayerson explained: "The respect for the legal, organizational, and negotiation skills gained during these legislative efforts formed the basis of working relationships with members of Congress and officials of the administration that proved indispensable in passing the ADA."

Grass Roots Activism

Although the legal battles won in Washington were of critical importance, equally important activities were taking place around the nation. As Mayerson writes, the history of the ADA began "in cities and towns throughout the United States when persons with disabilities began to challenge societal barriers that excluded them from their communities, and when parents of persons with disabilities began to fight against the exclusion and segregation of their children. It began with the establishment of local groups to advocate for the rights of persons with disabilities." While the 1970s witnessed the creation of the disability rights movement, the 1980s experienced its blossoming, which came with a flurry of grass roots activism.

Thousands of people around the country contributed to the disability rights movement. For many people with disabilities, college was a life-changing experience that marked the beginning of political action and underscored the importance of community. Roland Sykes, a student at Wright State University in Dayton, Ohio, was one example. He selected Wright State after his spinal cord injury because the university made concerted attempts to achieve campus accessibility. There Sykes joined with over 20 other students with disabilities who, as Ed Roberts had done at Berkeley, promoted a more accessible campus. This affirmed an important lesson Sykes had learned as a member of United Mine Workers of America: the power of collective bargaining. Joining with others not only provided emotional support, it added leverage in dealing with campus administrators. For example, students at Wright State helped create an adapted athletic program for persons with disabilities. "If it had been one person against [the] system, that never would have happened," Sykes said. Students also succeeded in starting a pilot program for persons with disabilities. After all, the school was named after the famous Wright brothers who made history by taking to the air. People with disabilities had the same desire to fly.

Another example was the disability community growing at Brooklyn College in New York, where Denise Figueroa gained a better understanding of living with polio by interacting with other students. At Brooklyn College she participated in her first demonstration: a protest against President Nixon's veto of the Rehabilitation Act. She and her peers were also able to use student government funds to send students to the annual meeting of the President's Committee on the Employment of the Handicapped. This provided an opportunity to make contacts with students from other college campuses who were also developing their own disability communities and fostering local activism. Even if students did not network directly with disabled students at other campuses, simply knowing that others shared the same goals was empowering.

While Figueroa relished the opportunities college provided, she realized that she could not always rely on its architectural accessibility. "If I ever wanted to leave the campus and be able to participate in the community, we had to change the community too," she observed. This understanding led many people to take their community-based activism beyond the college campus. In 1976, for example, students at Wright State University sued the city of Dayton under the Urban Mass Transit Act, which said that public transportation should service all citizens, including people with disabilities and the elderly. Disabled activists won the case and secured a mandate that all transportation vehicles had to be accessible. Had it not been for the mobilization of the disability community, however, the transit authorities simply would not have taken the initiative.

Outside of college campuses, the growing network of independent living centers served as crucial "community gathering places," as Mark Johnson called them. Among other things, they fostered emotional support through peer counseling and thereby spread the "gospel" of disability rights and local action. Charlie Carr, for example, said that Fred Fay, who visited Carr at a hospital that he resided in while attending Massachusetts Bay Community College, "put a fire under me." Fay demonstrated that a person with quadriplegia could be mobile, have one's own apartment, drive a car, get married, have children, and earn a Ph.D.--"all the things that I would lay in bed and look up at the ceiling and think that I would never have," Carr said. As a founding member of the Boston Center for Independent Living and one of the first to use its services, Carr obtained his own housing, attendant care, and became an ardent activist.


Perhaps no single group epitomized grass roots activism more than people who considered themselves members of ADAPT--American Disabled for Accessible Public Transportation.


Independent living centers drew on the learning experiences of other centers. In Denver, Colorado, the center known as Atlantis set an example of taking sledgehammers to side walks for fashioning curb cuts. Under the leadership of Wade Blank, Atlantis members also took busses hostage overnight to demand accessible transportation. Such demonstrations could be an effective tactic, as they were in Tulsa, Oklahoma, for example. After becoming Executive Director of the independent living center Ability Resources, in 1983, Sykes joined with Woody Osburn and others to organize Tulsans for Accessible Public Transportation (TAPT). Since they were unable to find an attorney willing to pursue litigation, they decided to use public opinion as an alternative and pressured local mayoral candidates and members of the transit board to promote accessible transportation. Between 1984 and 1988, by using such dramatic tactics as chaining themselves to buses, members of TAPT helped swing elections to mayoral candidates who supported their cause. TAPT also targeted transit board members, who were volunteers, and had demonstrators follow them around town, compelling many to resign. Progress in achieving transportation accessibility, though slow, was real. And it illustrated the power of community action.

Public demonstrations were fruitful in other contexts as well. Johnson, for example, gained his first taste of activism through the Metrolina Independent Living Center in Charlotte, North Carolina. It was 1980, and Metrolina activists learned that a local mall was developing an inaccessible theater. After seeking to work with the architects to no avail, Johnson and others staged a protest as a media event. Mall administrators responded in just a few weeks by installing a wheelchair lift. Public, media-oriented protests were not the only manifestation of grass roots activism. Subtler actions included placing warning cards on the windshields of cars illegally parked in spaces reserved for people with disabilities.

Perhaps no single group epitomized grass roots activism more than people who considered themselves members of ADAPT--American Disabled for Accessible Public Transportation. The groundwork for ADAPT was laid by the Atlantis community in Denver in the early 1980s. Atlantis activists decided they wanted to develop a national effort to promote transportation accessibility through public protests. They approached NCIL to coordinate and sponsor the activities. Although NCIL publicly stated its support of accessible transportation, it was unwilling to advocate nation wide civil disobedience. People at Atlantis and other independent living centers, for example Bob Kafka and Stephanie Thomas in Houston, Texas, thus decided to organize their own grass roots organization. They made it radically decentralized. "It's not incorporated," Johnson explained: "no board, no president, no budget." Rather, people from around the country identified themselves with ADAPT informally, based on their trust of others associated with the group. ADAPT's activities were the product of volunteers and relied on networks of activists who could join its efforts.

ADAPT's most significant undertakings were its demonstrations at the annual meetings of the American Public Transit Association (APTA), held each fall in a different city. ADAPT targeted APTA because it was singularly most responsible for opposing accessible transportation. APTA had won a law suit against the Department of Transportation and thereby overruled the department's Section 504 regulations. These regulations had required the purchase of accessible vehicles. But, according to the court decision, each local transit authority could determine the extent to which it made its services accessible. Members of ADAPT basically decided to shadow APTA until federal transportation laws changed. They began by disrupting APTA's conference in Denver in 1983. ADAPT rallied the following year in Washington, D.C., in Los Angeles in 1985, in Detroit in 1986, and in San Francisco in 1987, coincidentally on the tenth anniversary of the Section 504 protests. ADAPT also surprised APTA by traveling all the way to Canada for one of its meetings. By the 1989 deliberations of the ADA, APTA had largely resigned itself to equipping buses with lifts for public transportation. ADAPT had played a significant role in this change of heart.

ADAPT's efforts at coordinated action on the national level reflected a significant trend toward establishing vast networks for collective action, which accelerated during the 1980s. ACCD had been the first organization to develop a broad, cross-disability network. Under the authorship of Frank Bowe, ACCD published books to facilitate this growth. Coalition Building: A Report on a Feasibility Study to Develop a National Model for Cross-Disability Communication and Cooperation appeared in 1978. The next year, Planning Effective Advocacy Programs became available to fledgling organizations seeking integration into the ACCD network. In the 1980s, however, ACCD began to unravel. Fiscal restraint imposed by the Reagan administration reduced the levels of available grant money, on which ACCD depended. In the absence of private funding, ACCD could not sustain its operations. Member organizations also felt the budget crunch, which caused many to turn inward and focus more on their own survival. Furthermore, internal conflicts over the focus of ACCD's mission, predominantly concerning the degree of attention devoted to advocacy, reduced ACCD's effectiveness. In 1985, ACCD officially closed its doors.

Other organizations tried to fulfill some of ACCD's functions. Shortly after the establishment of the Title VII Independent Living Program in 1978, RSA convened a meeting of all centers supported by the grant. Marca Bristo, Director of Access Living in Chicago, described it as a "magical" time in which people from around the country were able to share their experiences. There was a "sense of excitement," she said, and a "thirstiness" for greater levels of interaction. This laid the groundwork for the founding of NCIL in 1982, by Bristo, Max Starkloff, Bob Williams, Jim DeJong, and others. Starkloff was the first president and Bristo the first vice president. In 1986, Bristo became president of NCIL.

NCIL's main purpose was to facilitate the creation and maintenance of independent living centers. Throughout the 1980s, NCIL, as ADAPT, had no centralized headquarters, but rather coordinated its efforts through networking and the contributions of volunteers from local centers and other organizations. NCIL presented itself as the only cross-disability, national grassroots organization that was run by and for people with disabilities. For example, at least 51 percent of all independent living center staff had to be people with disabilities to qualify for membership. NCIL offered a national voice to the philosophy of independent living by promoting the rights, empowerment, and self-direction of people with disabilities. Its first major challenged involved working with the Federal Government to implement standards for the creation and operation of independent living centers. Consumer control was the major issue, and it took years for NCIL to compel the Federal Government to adopt its proposals. As NCIL battled Washington, it also established grass roots networks throughout the country, through which NCIL could funnel information to members and solicit advocacy for political initiatives.


"By friend and foe alike, the disability community was taken seriously--it had become a political force to be reckoned with in Congress, in the voting booth, and in the media."

--Arlene Mayerson


In 1985, Sykes augmented NCIL's networking by creating a computer network. The network was started as the NCIL Computer Network and received funds from NCIL. Its purpose was to facilitate the information-intensive mission of NCIL. But as the network grew, the name was changed to DIMENET--Disabled Individuals Movement for Equality Network. DIMENET helped people with disabilities get online at the advent of the information age, giving them easy and inexpensive access to computer networking. By dialing into a local computer, and paying only for long-distance charges, callers could open electronic mail accounts, join discussion groups, and post files. It gave independent living centers a central clearing-house for information about the experiences of other centers and enabled them to download files. DIMENET was also a means to linking disability advocates in Washington to people with disabilities around the country.

NCIL and ADAPT were not alone in fostering grass roots networking during the 1980s. Other disability-specific organizations, including NFB, ARC, NAD, and PVA, continued to expand their own membership. Consequently, by the time the ADA was introduced in Congress, dozens of mailing lists were available to serve as links between developments in Washington and the rest of the country. Moreover, the face of the disability community was changing. The Education for Handicapped Children Act was helping to raise a generation of persons with disabilities who expected to attain a respected place in society. Technical assistance training contracts such as those with DREDF helped arm individuals with legal knowledge. And such organizations as NCIL, ADAPT, ARC, UCPA, NAD, and NFB helped people with disabilities unite as a collective voice.

The Disability Community in 1988

Although the 1980s began by putting the disability community and the broader civil rights community on the defensive, Wright, Kemp, Neas, Funk, Mayerson, and many other leaders were able to achieve significant victories. "Piece by piece we put together a decade of legislative success," Neas observed. In fact, he said, while the going was tough in dealing with the policies and practices of the courts and the Reagan administration, in Congress the "the 1980s, in all honesty, . . . were a bipartisan reaffirmation of civil rights and a bipartisan rejection of right-wing philosophy."

Many people in the disability community, as well as such organizations as DREDF, aimed for the implementation of comprehensive civil rights protections for persons with disabilities. But a record of legislative success, coalition-forming, and grass roots organizing had to be established first. And in the decade between the Section 504 demonstrations and passage of the Fair Housing Amendments Act, the disability community laid the necessary foundation. It earned the respect of the civil rights community. Talented leaders such as Wright proved their negotiation and legislative skills. People with disabilities formed an extensive and indispensable network of contacts with Congress and the administration. Through such disability-rights attorneys as Mayerson, Burgdorf, Feldblum, Weisman, Tim Cook (with the National Disability Action Center), Bonnie Milstein (with the Mental Health Law Project), and Karen Peltz-Strauss (with the National Center for Law and the Deaf), the disability community reached new levels of legal sophistication. And throughout the country, hundreds of communities organized to improve the lives of disabled Americans by winning local battles: pockets of the United States were crafting stronger protections and providing greater access for persons with disabilities. These developments had a profound impact. "By friend and foe alike," observed Mayerson, "the disability community was taken seriously--it had become a political force to be reckoned with in Congress, in the voting booth, and in the media."

No single activity or single event accounts for this success. Rather, it was due to the combined effect of the disability community's efforts. "No one particular tactic is more valuable than another," Mark Johnson said of his campaigns to achieve transportation accessibility. "If you're an activist and an organizer, you have a fully developed strategy." Indeed, the genius of the disability community's political mobilization was that it pushed for change in so many different ways, by so many different people. The diverse efforts were not necessarily coordinated, but the cumulative effect was the creation of fertile soil in which an ADA seed could flourish. As Mayerson aptly concludes: "The ADA owes its birthright not to any one person or any few, but to the many thousands of people who make up the disability rights movement--people who have worked for years organizing and attending protests, licking envelopes, sending out alerts, drafting legislation, speaking, testifying, negotiating, lobbying, filing lawsuits, and being arrested--doing whatever they could for a cause in which they believed."


2

PUTTING THE ADA ON THE LEGISLATIVE AGENDA: THE NATIONAL COUNCIL ON DISABILITY

When Senator Lowell P. Weicker, Jr. (R-CT) and Congressman Tony Coelho (D-CA) first introduced the Americans with Disabilities Act in April, 1988, many persons in and out of the disability community did not give it a fighting chance. During the 1980s the disability community was primarily on the defensive--withstanding a number of assaults and hoping simply to maintain its legislative and financial ground. Taking the offensive and introducing comprehensive civil rights legislation, when existing laws were not even adequately enforced, seemed unrealistic. In 1985, for example, when disability activist Duane French encountered people who talked about the need for comprehensive civil rights for people with disabilities, his response was: "Not in my lifetime, pal!" Where did the idea for the ADA come from? How did it make its way to Congress as a viable policy option? And why at this particular moment?

Accounting for why some issues and not others make their way to the legislative agenda is a favorite pastime of political scientists. Although no legislation follows a generic model precisely, one compelling analysis is useful in understanding the ADA's development. John Kingdon describes the Federal Government as an "organized anarchy." According to Kingdon, public policies are not created through a systematic, orderly process of establishing goals, identifying problems, analyzing alternatives, and making rational choices. Nor is there an incremental, inexorable development over time. Rather, the process is messy. Kingdon contends that at any given moment three independent "policy streams" are active: problems (conditions that demand corrective attention), policies (proposals made by various academics, government staff members, and lobbying groups), and politics (swings in national mood, elections, a new administration, and ideological distribution shifts). Problems emerge and recede; pet solutions are developed even where there is no concrete problem; and the political landscape constantly shifts. However, at particular, limited moments in time--"windows of opportunity"--each of these streams merge and offer the potential for action: "A problem is recognized, a solution is available, the political climate makes the time right for change, and the constraints do not prohibit action."

Asked to explain why the ADA succeeded, numerous participants in the deliberative process asserted that the "timing" was right. Indeed, the ADA appears to have occurred during a window of opportunity. We have seen how during the 1980s a disability rights movement blossomed, characterized by grass roots political activism, important networking, and tangible legislative success. This developed fertile soil where a civil rights seed might flourish. But that was only part of the equation. There needed to be a clearly defined problem (for society, not just isolated individuals), coupled with a concrete solution, and a political climate to legitimate it. This complicated process also took shape during the 1980s. Although numerous sources helped give life to the ADA, the vehicle that united these elements and brought the bill to Congress was a little- known federal agency called the National Council on the Handicapped (NCD).

National Council on the Handicapped

The history of NCD dates to 1972, when Congress proposed an Office for the Handicapped as part of the Rehabilitation Act. Its purpose would be to review the programs of the Rehabilitation Services Administration (RSA) and evaluate and coordinate all federal programs affecting persons with disabilities. But Congress eliminated the Office in the compromise with President Nixon. The idea resurfaced in May, 1977, when delegates from every state gathered at the White House Conference on Handicapped Individuals. The participants reviewed federal disability policy and offered legislative recommendations. Among their conclusions was that the incoherence and intrinsic tensions of various disability policies required an agency to bring it to order. The Carter administration afforded Congress to take action. Congress passed legislation creating the National Institute of Handicapped Research (NIHR, now NIDRR), the Title VII independent living program, and the "projects with industries" program to assist disabled persons starting their own businesses. Congress also used the shift in political climate to implement the White House Conference's recommendation by passing legislation that created NCD.

In addition to directing NCD to establish policies for NIHR and advise the RSA Commissioner about RSA policies, Congress charged NCD to "review and evaluate on a continuing basis all [federal] policies, programs, and activities" concerning persons with disabilities, and to report on its activities. NCD would be composed of fifteen presidential appointees, each serving three-year terms and with five new members each year. NCD could hire up to seven technical and professional staff, conduct hearings, and appoint advisory committees. It was housed in the Department of Health, Education, and Welfare (HEW).

NCD's activities prior to 1984 are not well documented. But the skeletal framework for the ADA was laid in 1983. After President Ronald Reagan entered office in 1981, he decided to disband the existing council and appoint all new members. On October 4, 1982, he selected Joe Dusenbury, previously the Commissioner of the South Carolina Vocational Rehabilitation Services and President of the National Rehabilitation Association, as NCD Chairperson. NCD apparently had a mixed record, and the Education Department urged Dusenbury to submit a credible annual report, on time, to help improve NCD's reputation. To help direct NCD activities, Dusenbury appointed two Vice-chairpersons: Justin Dart and Sandra Parrino. Dart was the only NCD member Dusenbury knew before joining NCD; they had worked together on the President's Committee on the Employment of the Handicapped. NCD members turned immediately to the task of the report, and decided that, in meeting NCD duties, they should prepare an ambitious proposal for disability policy.

They also decided that if the report were to have any legitimacy, it needed to be the product of a nationwide effort. Thus began Justin Dart's famous public forums. Authorized by Dusenbury and using his own funds, Dart traveled to every single state to discuss disability policy and obtain feedback for NCD's policy report. Dart, who had contracted polio in his teens, went in his wheelchair and with his trademark cowboy hat. On this campaign he met with over 2,000 people, including persons and parents of persons with disabilities, government officials, and disability professionals. Among the most frequently-cited problems were discrimination and the inadequacy of laws to protect the rights of persons with disabilities. This was by no means Dart's introduction to civil rights issues. On the contrary, Dart had become an impassioned advocate for the civil rights of African Americans as a student at the University of Houston, where he argued that black students should be allowed to attend the all-white university. By the 1980s, Dart viewed disability rights in a broader context of human rights and as a logical and necessary extension of the civil rights guaranteed for African Americans.


"In matters of fundamental human rights, there must be no retreat."

--National Council on Disability


Dart and Dusenbury took the feedback obtained at public forums to heart in designing the NCD report, in which the spirit and content of human rights, civil rights, and disability rights are pervasive. Persons throughout the nation reviewed the various iterations of the document, so the final product was truly national in origin. Issued in August, 1983, the National Policy on Disability built on the independent living philosophy: pursuit of "maximum independence, self-reliance, productivity, quality of life potential and equitable mainstream social participation." While individuals must assume primary responsibility for their lives, the report said, the Federal Government had a critical role to play. This included 22 different policy areas in need of attention, ranging from accessibility issues, to employment, education, and research. Part of the government's obligation, contended the report, was "to develop a comprehensive, internally unified body of disability-related law which guarantees and enforces equal rights and provides opportunities for individuals with disabilities," including integrating persons with disabilities into all existing civil rights legislation. "In matters of fundamental human rights," the report declared in vintage Dart form, "there must be no retreat."

This was not the first call for a comprehensive body of civil rights law protecting persons with disabilities. State and local governments throughout the nation were passing a multitude of laws and constitutional amendments--some amending civil rights legislation, others creating new disability-specific provisions. Others in the disability community had talked about it. The NCD report, however, was a powerful declaration that also had the backing of a federal agency.

Unfortunately for NCD, the Reagan administration did not take well to the document. In fact, Dusenbury had to fund the printing and distribution of the document with private funds because the administration would not support it. NCD did not circulate the document widely, distributing it primarily to state and national legislators, and little action was taken by legislatures. Dusenbury subsequently drew the ire of the Reagan administration when he refused to support its introduction of legislation to disband the vocational rehabilitation program. Later that year, the White House asked Dusenbury to step down from the Chairmanship, under the pretext of instituting a one-year term for the Chairperson. In his place, Vice-chair Parrino became the Chairperson.

Yet before Dusenbury stepped down (in spite of the Department of Education's insistence that he have no direct contact with Congress), he and NCD Executive Director Harvey Hirshi lobbied Congress to make NCD an independent agency, so that it would not have its hands tied by the administration, particularly the Department of Education. Congress granted NCD its request in the 1984 amendments to the Rehabilitation Act, claiming that "the Council has not been able to meet congressional intent for an independent body to advise on all matters in the Government affecting handicapped individuals."

NCD's independence, however, also reflected Congress's dissatisfaction with the agency's operation. Some members of Congress had even advocated disbanding NCD. But others saw the potential for a centralized evaluation of a patchwork of disability programs as requested by the White House Conference on Handicapped Individuals. As a result, in addition to making NCD an independent agency, Congress issued a mandate that NCD produce a comprehensive analysis of federal disability programs and policy by February 1, 1986. It was "kind of a test" of NCD's mettle, an ultimatum, and the future of NCD's authorization hung in the balance. Congress demanded a "priority listing" of federal disability programs according to the number of individuals served and the costs of such programs. Congress also requested that NCD evaluate the degree to which federal disability programs "provide incentives or disincentives to the establishment of community-based services for handicapped individuals, promote the full integration of such individuals in the community, in schools, and in the workplace, and contribute to the independence and dignity of such individuals." Members of Congress wanted to know: was the Federal Government promoting dependence?

Congressman Steve Bartlett (R-TX) appeared before NCD on April 30, 1984, to explain the significance of the challenge that lay ahead. "You are to advise Congress in a whole new approach, a whole new concept," he said, "on how to decrease dependence and increase independence." This, he suggested, represented what the disability community knew and that Congress was only reluctantly recognizing: "Sometimes Federal laws or provisions in Federal laws are the worst enemy of independence." According to NCD's minutes, Bartlett emphasized that "Congress is not looking for more programs, more maintenance grants, and larger appropriations." Instead, NCD should "look for ways to convert existing maintenance dollars to help recipients achieve independence." Disability policy was therefore not only about improving the lives of persons with disabilities; curtailing dependence also helped minimize the federal cost of disability.

By reviewing federal programs NCD might actually reduce government expenditures. Thus, while many were surprised by NCD's subsequent actions, these goals for NCD substantially coincided with President Reagan's philosophy. Although Republicans and the disability community might seem "strange bedfellows," wrote Evan Kemp in a compelling Washington Post article, "their philosophical similarities are striking." He explained: "Both have accused big government of stifling individual initiative. Both have advocated that only the truly needy should receive welfare and that others should be given the opportunity to work and to become self-reliant and responsible citizens." As an example of excessive government, Kemp noted that Social Security benefits for people with disabilities had risen 400 percent in just seven years. If physically and mentally disabled persons became wholly or partially self-sufficient, opined Kemp, there would be "more taxpayers and fewer tax users--the ultimate Reagan objective." Patricia Owens, Associate Commissioner for Disability in the Social Security Administration, reinforced this link at an appearance before NCD. "The Administration wants a program that encourages people to return to work," reported NCD's minutes. Motivations to improve the lives of persons with disabilities intertwined with attempts to reduce dependence on government and federal outlays. The subsequent work of NCD reflected this dual concern.

Although NCD now carried new independence, it remained substantively beholden to both the administration, which held the purse strings, and Congress, which controlled authorization and appropriations. Nevertheless, the establishment of NCD as an independent agency heralded a decisive shift. Congress now prioritized recommendations concerning the entire sweep of disability policy over such specific responsibilities as overseeing NIHR. And NCD's new identity as an independent "think tank" gave increased stature to disability as a policy. "For the first time, disability as an issue is institutionalized, by statute, in the structure of the Federal Government," said John Doyle, who left his post on the Senate Subcommittee on the Handicapped for six months to help NCD in its transition. The actions of the disability community were clearly gaining attention, and the themes of independence and community integration were working their way into national policy directives.

Chairperson Parrino accepted the heightened responsibilities for NCD eagerly and passionately. She was a longtime advocate for people with disabilities based on her experience in raising a child with a major physical disability. In Briarcliffe Manor, New York, Parrino had become a leading spokesperson for parents of persons with disabilities and helped obtain improved transportation and voting accessibility for disabled persons. Under her leadership, NCD met its statutory requirements by holding four quarterly meetings each year. These public meetings rotated around the country, and often met in conjunction with "consumer forums" designed to solicit the views of persons in the disability community. Although NCD attended to the requirements to monitor NIHR, RSA, and explored the ideas of its various members, it increasingly turned its attention to satisfying Congress's mandate to prepare a report, which imposed heightened work demands. This required hiring new staff.

Parrino and Dart recruited Lex Frieden, who initially agreed to serve for two years as Executive Director. Frieden had founded the Independent Living Research Utilization Program, an independent living technical assistance program, in 1977, and had earned great respect within the independent living community. In the early 1980s, he worked closely with Dart on the Texas Governor's Committee for the Employment of the Handicapped. And in 1984, coincidentally, he testified before Congress to promote a blue-ribbon panel to evaluate federal programs, which culminated in NCD's mandate. Meeting that requirement was precisely the kind of task-directed job Frieden relished.


"The Contribution of this Council and its continued existence will rest almost entirely on the content of our February, 1986, Report to the President."

--Sandra Parrino


Frieden assumed NCD's reins in December, 1984, and immediately turned to the task of finding high-quality staff to support him. He hired Ethel Briggs, who had extensive experience in vocational rehabilitation, as Adult Services Specialist. Attorney Robert Burgdorf filled the Research Specialist position. Burgdorf had actually sought out the job when he heard of NCD's new responsibilities. He had devoted much of his career to promoting disability rights, and saw this as an opportunity to continue his campaigns. Naomi Karp joined Frieden as Children's Services Specialist (on detail from NIHR), and Brenda Bratton became Secretary. Having acquired independence, additional staff, and a $500,000 budget, NCD was now able to face its growing responsibilities with increased zeal.

Toward Independence and The ICD Survey of Disabled Americans

"The Contribution of this Council and its continued existence," Chairperson Parrino asserted at the quarterly NCD meeting on January 23, 1985, "will rest almost entirely on the content of our February, 1986, Report to the President and how it is judged by the president and the Congress." She urged NCD members to unite in common purpose and pledge their highest commitment. In April, as preparation for NCD meetings and consumer forums dominated the better part of NCD's time, Frieden directed NCD to clear the table and focus almost exclusively on the report.

To make the report manageable, Frieden and Burgdorf presented Council members with a list of 41 potential topics and recommended that they focus on eight to ten of them. Since most of the 1983 council still served as members, the 1983 report was fresh in their collective memory. Building on and narrowing its earlier report, NCD settled on eleven topics. One of them was "Unified disability laws including civil rights." Some members doubted "whether the subject of civil rights is a topic that should be addressed in the 1986 report, in view of the breadth and complexity of the subject." But others contended "there is no question about its central importance" and noted that it was consistently discussed at the consumer forums. To make the concept more palatable to reluctant NCD members and ultimately to the Reagan administration, NCD presented the issue as an "equal opportunity law" rather than "civil rights." The former coincided with independence and self-reliance; the latter smacked of affirmative action.

In June, NCD members held working sessions to sketch out the content of each proposed topic and finally settled on the following ten topics: equal opportunity laws, employment, disincentives to work under Social Security laws, prevention of disabilities, transportation, housing, community-based services for independent living, educating children with disabilities, personal assistant services, and coordination of disability policy and programs. NCD chose to take responsibility for the report rather than simply contracting an outside organization to do it. Because of the logistical problems posed by meeting only four times a year, primary responsibility for designing the report fell to Frieden and Burgdorf. They committed to developing detailed and thorough topic papers to document their findings. The project was a model of teamwork in which staff members and a few consultants wrote most of the essays and NCD members worked with them closely in the review process.

One recurring theme in NCD's discussion of the papers was the cost of disability policy to the Federal Government. NCD members generally agreed not to recommend any funding increases. Jeremiah Milbank, for example, suggested that any request for federal dollars required anticipation of "massive Federal cost-saving benefits with positive human results." Indeed, NCD took care not to embarrass the president by presenting recommendations that would require large funding increases. Chairperson Parrino explained that NCD's recommendations were "designed to improve the ability of persons with disabilities to live with dignity and as independently as possible within their communities." By following them, she added, "current Federal expenditures for disability can be significantly redirected from dependency-related approaches to programs that enhance independence and productivity of people with disabilities, thereby engendering future efficiencies in federal spending." This fiscal conservatism was crucially important for securing the later success of the ADA. It demonstrated that efforts to improve the lives of persons with disabilities could coincide with fiscal restraint, and thus win the support of skeptical members of Congress.

Moreover, NCD rooted the ADA in Republican soil, preventing it from being discarded as a "liberal" bill. In fact, NCD members endeavored to depoliticize their job and focus simply on what was most important for persons with disabilities. Frieden, Burgdorf, and others praised NCD for this approach. Dart captured the spirit in a statement to NCD about the direction of disability policy: "Major emphasis should be given to the absolute necessity for all who believe in the fulfillment of the American dream . . . to rise above the traditional limits of politics and personality and to unite in support of the fundamental human rights of disabled people."

Also crucial to the ADA's eventual success was the approach NCD took in developing the report. As he did in 1982, Dart personally financed another series of public forums, visiting every state to learn what persons with disabilities throughout the country thought were the most important issues. In the same vein, NCD devoted its 1985 "consumer forums" to soliciting feedback about the various topic papers. Moreover, Frieden consulted with disability organizations from around the country constantly. He also developed a list of approximately 50 people from the grass roots that he spoke to on at least a monthly basis. It was, said Frieden, "ironic" that supposedly "elitist" Republicans were so interested in cultivating grass roots collaboration. Nevertheless, this extensive, nationwide involvement helped give the disability community a sense of ownership over NCD's activities and helped form important links that would pay dividends later. By the end of 1986, NCD had crafted over 400 pages of policy analyses; the disability community had helped to refine them.

The philosophy of the disability rights movement manifested itself in the report's title. At a brainstorming session, staff reflected on the independent living movement and on Dart's findings. Facilitating independence through equal participation, they thought, must be the ultimate goal of disability policy and evident in the report's title. But the goals were yet to be reached, so they focused on policy direction. They thus conceived an appropriate title: Toward Independence.


NCD prioritized the advancement of "equal opportunity laws" for people with disabilities as its primary recommendation in Toward Independence.


NCD prioritized the advancement of "equal opportunity laws" for people with disabilities as its primary recommendation. Although Congress had enacted several anti-discrimination laws for persons with disabilities, council members noted, coverage for persons with disabilities paled in comparison to those afforded racial minorities and women. Reminiscent of the 1983 report, NCD therefore proposed that Congress "enact a comprehensive law requiring equal opportunity for individuals with disabilities, with broad coverage and setting clear, consistent, and enforceable standards prohibiting discrimination on the basis of handicap." This time, however, the proposal came with a thorough explanation for why such an approach was necessary to facilitate the employment and general life satisfaction of persons with disabilities. It also delineated what such a law should en tail.

With the support of Frieden and newly-hired staff member Andrea Farbman in January, 1986, Burgdorf devoted a weekend to synthesizing the topic papers into a short readable report, which specified over forty different recommendations. Pressed for time, NCD contracted at the Federal Prison Industry to publish the document rather than risk the potential for delay with the Government Printing Office. About a week before the scheduled release, however, with 10,000 copies of Toward Independence prepared for distribution, Frieden received a call from Bob Sweet at the White House. Sweet threatened to block the report because the White House allegedly could not support it. "This report is so liberal, Ted Kennedy wouldn't produce it," he told Frieden in reaction to the report's ambitious proposals. But Sweet's superior--highly-respected physician and public health expert, Dr. William L. Roper--quelled the conflict after being persuaded by Frieden that the basic principle of Toward Independence was that all Americans should share in society. He simply directed Frieden not to attach the presidential seal to the report.

NCD officially presented Toward Independence, accompanied by letters of transmittal, to President Reagan, President of the Senate George Bush, and Speaker of the House James C. Wright (D-TX), on February 1, 1986. NCD also scheduled a press release for January 28, 1986. But media attention that day was riveted to the explosion of the Space Shuttle Challenger, leaving few reporters and little time for Toward Independence.

The NASA catastrophe also canceled another Council arrangement: a meeting with President Reagan to present the report in person. Consequently, Vice President Bush and Boyden Gray met with Parrino, Dart, Milbank, and Frieden. The White House meeting was noteworthy because Bush exhibited tremendous interest in NCD's report. A ten-minute photo-op evolved into a substantive discussion that lasted nearly an hour. Bush recounted his own personal experience with disability through family members. Evidently, as Frieden recalled, Bush had familiarized himself with the report before the meeting: he talked about some of the issues in detail, namely education and equal opportunity laws. Bush ended the meeting without a single criticism of NCD's recommendations and with a promise that he would pass the report along to Reagan. He also said he wished he could do more, but noted that there was only so much he could do as vice president.

Although NCD's press conference and meeting with President Reagan were canceled, the agency's third public relations event went through as planned: a reception on Capitol Hill, where many members of Congress gathered to accept the report. Senator Weicker, Senator Paul Simon (D-IL), and Congressman Steve Bartlett (R-TX), among others, offered remarks.

NCD ultimately distributed over 20,000 copies of Toward Independence to legislators, government officials, disability advocates, and disability organizations. DIMENET, the computer network started under the aegis of NCIL, received permission from NCD to type the report and make it available on the Internet. The report "made a big splash," as Bonnie O'Day, at the time the director of an independent living center in Norfolk, Virginia, put it. Thousands of people across the country read it and talked about it. The attraction was not the novelty of the proposals it contained: virtually every issue and recommendation presented by NCD had been initiated or proposed at the state and local level. Rather, the report was significant because it represented a proposal for a national, comprehensive approach to disability policy. Moreover, it carried the clout of being the product of a federal agency. Regardless of the content of the report, simply producing a comprehensive analysis of disability programs was significant in the stature it gave to disability as part of the national policy agenda.

With respect to Kingdon's analysis, Toward Independence can be seen as a body of policy solutions. Of special importance was NCD's prioritization of a comprehensive equal opportunity law as necessary to achieve functional independence and social participation for persons with disabilities. But at this stage it represented only a potential solution. Getting the issue on the legislative agenda would require further documentation that the lack of such a law was a desperate problem. An influential national poll helped this process along.

As NCD deliberated the topic papers comprising Toward Independence, one of its members, Milbank, voiced the concern that NCD's conclusions might not adequately reflect what average Americans with disabilities thought. He feared that the forums sponsored by Dart and NCD were too selective. Unfortunately, there was no substantive survey data on how having a disability affected a person's ability to participate in the life of the community. This led Milbank to contact his friends at the polling agency Louis Harris and Associates, namely its president, Humphrey Taylor, who agreed to conduct a study. NCD staff and members contributed to the development of the questions and structure of the survey. The International Center for the Disabled (ICD), where Milbank served as Chairman of the Board, provided most of the funding. Although NCD hoped the results would be available in time for inclusion in Toward Independence, it was finished soon after and published in March, 1986, with the title: The ICD Survey of Disabled Americans: Bringing Disabled Americans into the Mainstream.

"The purpose of the survey," explained ICD Executive Director John Wingate, "was to obtain data on disabled people's experiences and attitudes that would provide a clear information framework of NCD's recommendations on public policy for disabled people." The nationwide survey was based on 1,000 telephone interviews with a national sample of non-institutionalized disabled persons aged sixteen and above. In some respects it paralleled the significance of NCD's report Toward Independence. While other organizations had conducted surveys, this was the first comprehensive survey of persons with disabilities that solicited their perceptions of their own quality of life. It provided solid data that could document the extent of problems faced by persons with disabilities and help guide fruitful directions for policy development. Significantly, it suggested that federal disability programs had improved the lives of persons with disabilities, which warranted continued policy development and federal funding.


67% aged 16-64 were not working; 66% of those not working said they would like to be employed.


The Harris poll found that the prevalence of disability for non-institutionalized persons aged 16 and over was 15.2% of the United States, or about 27 to 28 million people. In an analysis of the Harris results, NCD concluded that the addition of institutionalized persons, children, and households that could not be reached by telephone would place the total number of per sons with disabilities somewhere near the oft-quoted figure of 36 million. The poll also presented a series of significant, quantified findings about this group of Americans:

  • "72% said their lives had been at least "somewhat better" in the past decade.
  • "67% said the federal policies had helped at least "somewhat."
  • "40% did not finish high school, compared with 15% in the non-disabled population.
  • "50% reported household incomes less than $15,000, compared with 25% among the non-disabled population.
  • "56% reported that disability prevented desired levels of social and community participation.
  • "49% identified lack of transportation as a barrier to social and community participation.
  • "67% aged 16 to 64 were not working; 66% of those not working said they would like to be employed.
  • "Employment correlated with levels of education, income, life satisfaction, self-perception as disabled, and perception of life potential.
  • "95% advocated increased public and private efforts to educate, train, and employ persons with disabilities.
  • "74% supported implementation of anti-discrimination laws affording disabled persons the same protections as other minorities.

For the most part, these findings were not surprising. But they served the crucial role of documenting what were previously subjective assessments. And the survey was a ringing endorsement of initiatives to help disabled Americans find work. Unemployment more than anything else seemed to define disability, and the correlation between employment and life satisfaction cried out for attention. NCD had argued strongly in Toward Independence that civil rights protections would help improve accessibility and facilitate employment. The poll affixed numbers to a real and pressing problem and functioned as a nationwide endorsement of NCD's report. With respect to Kingdon's policy analysis, this linked two policy streams: problems and solutions. Frieden asserted: "I doubt that the recommendations in Toward Independence, and particularly [those regarding] civil rights, would have been taken as seriously by the policy makers had we not had the data."

Drafting the ADA

As Frieden's successor Paul Hearne observed in 1988, NCD's preparation of Toward Independence and instigation of the ICD Survey helped "put the Council on the map." NCD member Michael Marge said of the reports: "We were very well received by both sides of the aisle as a valuable, worthwhile group. Our entree to the Congress was fantastic." Despite the tremendous respect NCD gained, however, Congress took little action--a great frustration to NCD members. Although Congress pointed to Toward Independence as "the Manifesto, the Declaration of Independence for people with disabilities," said Frieden, "nobody bothered to do anything about it." NCD members and staff--especially Burgdorf, Dart, Frieden, and Parrino--were frustrated most by the lack of attention to their number-one recommendation, an equal opportunity law.


"Congress pointed to Toward Independence as the Manifesto, the Declaration of Independence for people with disabilities," but "nobody bothered to do anything about it."

--Lex Frieden


After waiting for nearly a year, they began discussing what NCD could do. They concluded that the only way to overcome legislative inertia was for NCD to take the lead. (See Appendix C for a chronology of the events leading up to the ADA's introduction in Congress.) Frieden remembers talking about drafting a civil rights proposal as early as December, 1986. There was some early dispute over whether disability rights legislation should come in the form of an amendment to the Civil Rights Act or whether it should be an independent initiative. At a strategy meeting, Burgdorf and Frieden solicited the input from such disability rights advocates as Marca Bristo, Evan Kemp, and Robert Funk. They discussed whether using the vehicle of a separate law might ironically reinforce discrimination by underscoring the separateness of people with disabilities. But they decided that an adequate foundation for disability rights required unique provisions and that a separate law could serve as an energizing force for the disability community.

The framework for such a law was already sketched out. In Toward Independence, Burgdorf specified that the law should prohibit discrimination by the Federal Government, recipients of financial assistance, federal contractors and subcontractors, employers, housing providers, places of public accommodation, persons and agencies of interstate commerce, transportation providers, insurance providers, and state and local governments. He also proposed that the law secure private right to action to remedy discrimination, give the Architectural and Transportation Barriers Compliance Board (ATBCB) the authority to remove barriers according to universal accessibility standards, and establish Protection and Advocacy Systems in each state to protect and advocate for the rights of persons with disabilities. To make nondiscrimination on the basis of handicap meaningful, he stressed, the law would have to be founded on the concept of providing reasonable accommodations and taking affirmative steps to eliminate barriers. Among the proposal's most ambitious provisions was that all existing barriers to accessibility would have to be removed in two to five years, except where a private business or public entity received a special waiver.


By August, 1987, Robert Burgdorf had a complete draft of what was now called, at the suggestion of NCD member Kent Waldrep, the Americans with Disabilities Act of 1987.


Yet it was not an optimal time to introduce new civil rights legislation. The disability community, the civil rights community, and Congress were just beginning their campaign for the Civil Rights Restoration Act, which was introduced on February 19, 1987. Another civil rights measure might adversely affect its passage. Burgdorf nonetheless began putting the law on paper, expecting it could be used eventually, and finished a preliminary draft in February. During the spring of 1987, he and others began holding brainstorming sessions with "important and knowledgeable persons in the disability community" to include them in the process and facilitate the drafting. At the May quarterly meeting, NCD decided to move forward and give official sanction to crafting a legislative proposal, deciding that a comprehensive law, rather than a piecemeal approach, was the best way to protect disabled persons" civil rights. Staff members Burgdorf and Frieden worked most intensively on the law. And NCD members reviewed draft after draft of the proposal prepared by Burgdorf, who advanced his own vision for the law while helping to put NCD members" thoughts in proper legal form.

By August, 1987, Burgdorf had a complete draft of what was now called, at the suggestion of NCD member Kent Waldrep, the Americans with Disabilities Act of 1987. Principal strategic planning for the legislative proposal was carried out by Parrino, Frieden, and Burgdorf. They concluded that success required a body of individuals and organizations to support the endeavor and good timing of its introduction so as not to obstruct the efforts of the civil rights community. At the August Council meeting, members hoped that the bill would be passed in the 100th Congress--by the end of 1988. Dart, who was in attendance at the meeting though no longer a Council member, was more cautious. He suggested it would take years to obtain passage. Nevertheless, he fully supported moving forward to initiate the requisite education process.


Senator Weicker officially agreed to be the bill's sponsor: he was absolutely crucial in giving the ADA its life.


For congressional sponsorship, Parrino turned first to Senator Weicker, with whom NCD had a long standing relationship. Weicker was one of the disability community's greatest advocates in the Senate. This was in part because Weicker had personal experience with disability through his son, who had Down's Syndrome. For Weicker, however, interest in disability issues stemmed from a broader philosophical and political commitment to assisting those in need. "He was a man of very strong principles about the role of government and the responsibility for caring for those who were less fortunate," said Terry Muilenburg who worked on his staff. This applied to elderly persons and people of lower-income as well as to people with disabilities. At times Weicker acted as "the conscience of the Senate" to defend the constitutionality of an active Federal Government, Muilenburg added. Weicker was a fitting congressional contact because he had played a pivotal role in ensuring that NCD stayed alive in 1983. Early in 1987, during a meeting with Parrino, he had indicated a willingness to support disability rights legislation if NCD drafted a proposal. Now Weicker officially agreed to be the bill's sponsor: he was absolutely crucial in giving the ADA its life.

For the ADA to succeed, Senator Weicker emphasized that the bill would have to be introduced simultaneously in both houses of Congress. He recommended that NCD contact Congressman Coelho, who was, coincidentally, a close friend of NCD member Roxanne Vierra's husband, to sponsor the House bill. Coelho also had epilepsy, and was becoming a public advocate for people with disabilities. Although Congressman Coelho's staff cautioned him against sponsoring the bill for fear that it would not win the support of the broader disability community, Coelho agreed to sponsor it. Senator Weicker later encouraged NCD to begin working closely with Senator Tom Harkin (D-IA). Harkin was Chairman of the Subcommittee on the Handicapped, which would likely have jurisdiction over the bill in the Senate.

While NCD's solid reputation with Congress helped in finding congressional sponsors, enlisting the support of the disability community proved more difficult. Many persons in the disability community had been working toward the goals, shared by NCD, of equal opportunity and full participation; some strove for civil rights legislation akin to NCD's proposal. But many people in the disability community viewed NCD with apprehension. While NCD collaborated with persons with disabilities throughout the country, NCD generally did not work closely with leading disability organizations, especially those that had been championing recent legislative campaigns. Moreover, given the context of the Reagan administration's civil rights record, some questioned NCD's motives. Some NCD members, on the other hand, suspected that others were envious of NCD for being the first to draft civil rights legislation. For these and other reasons, the relationship between much of the disability community and NCD was strained.

Prior to the November Council meeting, Burgdorf met with representatives of the Consortium for Citizens with Developmental Disabilities (CCD) to discuss the bill. At a later meeting convened by Terry Muilenburg of Senator Weicker's staff, CCD members stated that they opposed the bill as written. Their greatest concern was that they did not want the ADA to undermine the coverage of Sections 503 and 504 of the Rehabilitation Act. Securing the Section 504 regulations had been a protracted battle, and the regulations had been subsequently assaulted by President Reagan's Task Force on Regulatory Relief just a few years before. CCD feared that if the provisions of Section 503 and 504 were included in the ADA it would mean the regulations were back on the bloc, and an administration unfriendly to disability rights could substantially rewrite and weaken them. As an alternative, CCD proposed what became known as the "donut-hole" approach: leave what was already established alone, and write the ADA around it to cover everything left out.

CCD also argued that the ADA should not enforce standards inconsistent with those afforded to other minority groups. The disability community was in the midst of working with the civil rights community on the Fair Housing Amendments Act. Passage of the ADA would require the full backing of the civil rights community, so it was important to advocate the same protections. For example, while many people in the disability community believed health insurance should be a part of the ADA because people with disabilities often could not find affordable health care, health insurance was not a protection afforded to any other group. In a more general sense, CCD expressed concern about incorporating new language and new terms, such as a revised definition of disability. They urged that NCD use language from Section 504, which would help secure congressional support because it was familiar. At the November Council meeting, members voted on the draft of the ADA and rejected changes proposed by CCD. Three days later, however, Senator Weicker met with a variety of disability groups and decided, together with Senator Harkin, that Sections 503 and 504 and health insurance needed to be dropped from the ADA. Although a variety of factors warranted the exclusion of health insurance, Weicker's representation of Connecticut, where insurance was a major industry, made the inclusion impractical.

Senator Weicker urged NCD to accede to the disability community's changes, but NCD bristled because it was afraid to weaken its legislative proposal. Chairperson Parrino suggested getting a broader range of opinion from persons outside Washington at a meeting coinciding with the February Council meeting, on February 9, 1988. In the meantime, NCD was preparing its 1988 report, On the Threshold of Independence. The report evaluated progress made since its 1986 report, Toward Independence, on each of the ten topics. At the suggestion of Public Affairs Specialist Andrea Farbman, NCD decided to include the current draft of the ADA in its discussion of the equal opportunity law recommendation, hoping to draw further attention to the ADA and enlist grass roots support.


Discrimination on the basis of disability is "just as intolerable as other types of discrimination that our civil rights laws forbid."

--Senator Lowell Weicker


On February 9, representatives from around the country gathered at NCD's quarterly meeting. There they formed working groups and unanimously agreed to remove Sections 503 and 504 and health insurance from the purview of the Americans with Disabilities Act. On the following day, NCD decided to circulate the bill, with these changes, to Congress and the Reagan administration. Negotiations with the disability community continued after the February Council meeting, but Weicker, faced with a string of proposals from the disability community, decided to honor NCD's work in drafting the legislation and forge ahead with its version of the ADA.

On April 28, 1988, Senator Weicker introduced the Americans with Disabilities Act on the floor of the United States Senate. He called the legislation "historic," and said that it "will establish a broad-scoped prohibition of discrimination and will describe specific methods by which such discrimination is to be eliminated." He compared the conditions faced by persons with disabilities to those faced by minorities in the 1960s. Civil rights advocates then argued forcefully and demonstratively that no person, because of race or national origin, should be discriminated against in obtaining access to public accommodations, use of transit, employment opportunities, services of state and local governments, and housing. Laws prohibited this type of discrimination by business owners, employers, and governments, Weicker said. "Yet, today," he noted, "it is not unlawful for these same establishments to exclude, mistreat, or otherwise discriminate against people because of their disabilities." He contended that discrimination on the basis of handicap was "just as intolerable as other types of discrimination that our civil rights laws forbid." The following day, Congressman Coelho joined Weicker by introducing an identical bill to the floor of the House of Representatives. Civil rights for persons with disabilities had entered the national, legislative agenda.

NCD's role did not end with Senator Weicker's final acceptance and introduction of their proposal, but in a very real sense the baton was being passed from NCD to congressional sponsors and the disability community. NCD was in an awkward position. Although NCD could present legislative proposals and justify its recommendations by offering "technical information," federal law at the time prevented NCD members and staff, as all employees of federal agencies, from personally lobbying members of Congress. In lieu of formal lobbying, NCD members made presentations in their home towns and in their professional circles. Chairperson Parrino met extensively with officials in the White House and helped pave the way for favorable action on the ADA by the Bush administration. She also gave important congressional testimony on multiple occasions.


NCD performed the crucial function of documenting a problem, crafting a solution, and securing a foothold in Congress.


NCD's presence was also carried forward as Frieden and Burgdorf resigned to take positions where they could exert more direct influence. Frieden, for example, became Executive Director of the congressional Task Force on the Rights and Empowerment of Persons with Disabilities, which played an important role in documenting the need for the ADA. Some members felt slighted by the transition in ADA leadership. But it was actually a testament to their success--NCD had accomplished its mission. No other single disability organization could have introduced a proposal to Congress with the same authority NCD possessed as an independent federal agency. NCD had performed the crucial function of documenting a problem, crafting a solution, and securing a foothold in Congress. It brought people to the table to develop a workable solution with substantial consensus. Now NCD would join the ranks of other organizations and thousands of individuals in educating America about the ADA.

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