Equality of Opportunity: The Making of the Americans with Disabilities Act

Foreword, July 26, 2010

On behalf of the National Council on Disability (NCD), I am pleased to release this reprint of Equality of Opportunity: The Making of the Americans with Disabilities Act. As we convene NCD’s National Summit on Disability Policy 2010 and explore the current state of Living, Learning, and Earning for people with disabilities, Equality of Opportunity reminds us of our past and urges us to press on with renewed and united sense of purpose to deliver on the ADA’s legacy, hope, and promise.

There is a personal dimension to this history of the ADA. My experience as the original author of the manuscript made it possible for me to write now as Chairman of NCD. In 1996, when I began my work on the history of the ADA, I was a doctoral candidate in American history specializing in 19th-century American intellectual and cultural history and writing a dissertation on the slavery debates. I was a person with a disability, having broken my neck in a high school wrestling match and living with partial paralysis. But I did not identify as a person with a disability and I did not view myself as part of a disability community. To me, disability was the enemy. I wanted to pass for “normal” as best I could. I had internalized social stigma about disability.

In 1996—ten years after my original spinal cord injury—I had also spiraled downward into depression and gave serious thought to dropping out of my Ph.D. program. Writing a history of the ADA on a contract with NCD was not the lowstress opportunity I was looking for, and I decided to do the project with substantial doubt about my ability to complete it. However, through writing the ADA’s history, my life was transformed.

I had only been vaguely aware of the ADA when it passed in 1990—probably much like most of the 43 million people identified in the ADA’s findings who similarly lacked identity as a person with a disability and thus took little note of the ADA’s passage. However, researching the history of the ADA, and particularly interviewing many of the people who made the ADA’s enactment possible, made me rethink the meaning of disability and my own identity. I was riveted by the story of how the ADA came into existence and the gravity of the change wrought through the ADA. My preconception that disability was a debilitating weakness, an enemy to be overcome, ran headlong into the life stories of disability rights advocates whose power and pride both individually and collectively laid the foundation for passage of the ADA.

By the time NCD released Equality of Opportunity on July 26, 1997, I had begun to view myself as a person with a disability and as part of the disability community. I had also emerged from a deep depression and regained my self confidence—no doubt largely because my inability to embrace my identity as a person with a disability had contributed to my depression. In retrospect, the closing line of Equality of Opportunity—“The dawn of a new day”—was as much about the impact of the ADA on my life as the ADA itself. Identity as a person with a disability was liberating rather than stigmatizing. It gave my life new purpose and meaning.

This personal story is part and parcel of the ADA’s significance in our society. The ADA is a nondiscrimination law. But, much more than that, it is a clarion call for transforming attitudes about disability. The ADA proclaims that all people, including people with disabilities, should participate fully in all aspects of our communities and have opportunities to take risks, to succeed, and—yes—to fail. Equality of opportunity means having a chance to live independently and become financially secure, but it is not a guarantee.

Understanding the history of the ADA is every bit as important as when Equality of Opportunity was first published in 1997. Arguably, the urgency is even greater now. Achieving equality of opportunity for people with disabilities depends in large measure on individual transformative experiences like the one I had through writing the history of the ADA. I thus hope that this reprint of Equality of Opportunity enables more people to understand the ADA and the outmoded structural and attitudinal barriers it was meant to tear down.

When NCD first published this history, the ADA was still relatively young. Hope abounded. Some of the provisions, such as rules for over-the-road buses, had yet to be finalized. Other provisions, such as the definition of disability and scope of access to public accommodations, had yet to be fully tested in the courts. Equality of Opportunity was published amidst what proved to be the longest period of peacetime economic growth in our nation’s history. To help mark a point in time, 1997 was also the year that the now-ubiquitous Google first got its name, though the company bearing its name would still not be incorporated for another year.

Times have changed. We celebrate the 20th Anniversary of the ADA well after civil rights provisions have been implemented in regulations, tested in court, and even amended by the Americans with Disabilities Act Amendments Act of 2008. We also celebrate amidst our nation’s worst economic downturn since the Great Depression. Unemployment is high. People are losing their homes. Access to health care remains elusive. And that is before we begin talking about the individual experiences of millions of people with disabilities, for whom the economic downturn only compounds longstanding disparities in living, learning, and earning.

Unfortunately, the challenges that we face together as a nation are compounded by partisan strife. Although vitriol is no stranger to the history of American politics, something is sorely missing today—the genuine and widespread willingness to set aside ideology to pursue pragmatic solutions that make critical differences in the lives of real people. The explosion in access to 24-hour Internetbased communications exacerbates this trend, even though information technologies and other technologies have provided new levels of access for people with disabilities.

Despite the fast-paced and daunting world we inhabit, tangible marks of the ADA’s success surround us—not just regarding the ADA’s specific nondiscrimination provisions but symbolically as well. The ADA is the disability community’s standard bearer for the disability policy goals of equality of opportunity, full participation, independent living, and economic self-sufficiency. Some of the ADA’s impact has been increasingly felt with the march of time as requirements for new and renovated construction create more livable communities, with physical and telecommunications infrastructures becoming more accessible and usable by more people with disabilities.  In other cases we see the symbolic victory of the ADA as people with disabilities assume prominent positions of leadership in government, business, and our communities and more children grow up embracing disability as a natural part of the human experience. But we also know that problems abound, and the hard work of delivering on the ADA’s promise still lies in front of us.

The ADA truly was “a watershed public policy,” as Marca Bristo and Gerben DeJong wrote in the original Foreword, and the ADA’s history still has much to teach us today. “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,” states the original Foreword, and kept the ADA from falling victim to a venomous public debate. There is a long record of bipartisan achievements on disability issues—the ADA chief among them. Recounting the history of the ADA is therefore an opportunity to remind ourselves of the potential for disability issues to help build bridges across partisan divides. Bipartisan collaboration will not be easy in the current environment, but the future of effective disability policy depends on it.

The ADA’s history also provides a sober reminder to the disability community about the challenges of and need for cross-community collaboration. The ADA was a unique moment in disability history where diverse individuals and organizations rallied around a common cause. In doing so they showed the power of shared goals and coordinated action. Nevertheless, the years since enactment of the ADA have restored in large measure the longer tradition of a splintered community with myriad—and sometimes competing—priorities. The disability community is anything but homogenous. It is difficult to find a common ground of policy issues that are equally viewed as priorities for different types of disabilities and for discreet policy areas. The ADA reminds us that there is a profound strength that comes in unity of numbers and purpose.

Passage of the ADA also indicates that coordination is both possible and necessary to remedy longstanding barriers. Passage of the ADA required separate review, analysis and coordination of multiple House and Senate committees, as well as support from the White House and executive agencies. It also required coordination among various stakeholders, including with various business groups—even if such coordination was far from harmonious. Many of the barriers to advancing the ADA’s disability policy goals revolve around breakdowns in coordination—among federal agencies, across all levels of government, and among various stakeholders. The success of the ADA was never a foregone conclusion any more than solving many difficult disability policy issues is today. But enactment of the ADA reminds us that coordination is possible even if often overwhelming.

I am proud to have an opportunity to join my fellow Council Members and NCD staff in continuing NCD’s proud legacy, particularly in light of the extraordinary role NCD played in my personal life through writing the ADA’s history. NCD’s identity is closely intertwined with the ADA’s history. NCD began as a small advisory body within the Department of Education. In 1984 Congress made NCD an independent agency and charged it with a new mandate to review all federal policies and programs. Two years later, NCD delivered on that charge with its path breaking report, Toward Independence, which called for enactment of the ADA. NCD later helped rally the disability community around the ADA when NCD offered the first draft in 1988. After the ADA was signed into law, NCD’s mission was amended to reflect the national disability policy goals now enshrined in the ADA.

NCD now serves a unique role among federal agencies because its mission reflects the breadth and diversity of the disability community itself. Achieving this mission requires bipartisan collaboration among diverse stakeholders. NCD will continue to seek common ground and help to identify priority issues for a diverse community that can make critical differences in the lives of millions of people with disabilities. In the spirit of bipartisan collaboration, with this reprint NCD is publishing a list not merely of NCD’s current Members and staff but a list of all known Members and staff past and present. NCD’s role in helping to give life to the ADA and to preserve and strengthen the cause of the ADA has depended on the contributions of all of NCD’s Members and staff.

Of course, none of NCD’s work would be possible without the continued feedback and support of the disability community and other stakeholders. NCD’s National Summit on Disability Policy 2010 is an opportunity to build on NCD’s history of community engagement and to continue the difficult challenges of making the principles of the ADA a genuine reflection of opportunities in our communities. 

The Acknowledgments are the original acknowledgments from 1997. Since that original publication I had the good fortune to marry Nellie Wild and become the proud father of three beautiful daughters, Bella, Katie, and Julia. I am grateful for all of the ways my family makes me a better person, and reminds me about what matters most in life. I am also pleased that the ADA and my own experiences as a person with a disability enrich my family’s life.

I also want to express my gratitude to Marca Bristo, then the Chairperson of NCD, and Gerben DeJong, then the Director of the National Rehabilitation Hospital Research Center, under whose contract I wrote the manuscript. They took a risk in entrusting me with writing the history of the ADA. In doing so they embodied the spirit of the ADA. I hope that President Barack Obama’s decision to entrust me with leadership as Chairman of NCD will enable me to provide similar opportunities to deliver on the ADA’s promise.

The legacy, the hope, and the promise of the ADA endure, yet much more work must be done to transform law into life. Together, we can be the catalyst for our nation’s continued transformation.

Jonathan M. Young
Chairman
National Council on Disability