July 26, 1997

National Council on Disability
1331 F Street NW
Suite 1050
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

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

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

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