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Equality of Opportunity
The Making of the Americans with Disabilities Act
July 26, 1997
National Council on Disability
1331 F Street NW
Suite 1050
Washington, DC 20004-1107
(202) 272-2004 Voice
(202) 272-2074 TT
(202) 272-2022 Fax
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
- Laying the Foundation:
Disability Policy & Activism, 1968-1988
- Putting the ADA on the Legislative
Agenda:
The National Council on Disability
- Publicizing the ADA:
Advocacy and the Government Response
- Creating a Workable
ADA:
The Senate and the White House
- Fashioning a Durable
ADA:
The House of Representatives
- 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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