Government is inescapably responsible to provide leadership which results in citizen solutions.
—Justin Dart, testimony before hearings of the House Subcommittees on Select Education and Employment Opportunities, July 1989
DISABILITY HAS ALWAYS had a place on the American policy agenda. The development of disability policy is so intimately linked to the development of the American welfare state that it is difficult to disentangle the two. While the United States is often considered a welfare laggard,1 the nature of its political institutions, political process, and legislators’ entrepreneurial spirit is reflected in the trajectory of disability rights through piecemeal struggles and setbacks, innovations, and reforms.
In the 1920s, a fairly cozy group comprising members of Congress, the Executive Branch, professional associations, and disability nonprofit and interest groups became the “experts” or, to borrow from Barbara Altman and Sharon Barnartt, “the wise,” monopolizing the disability policy agenda.2 This policy network crystallized in response to a federal mandate to extend rehabilitation services and programs to nonveterans with disabilities.3
Driven by the belief that the federal government must do something to “help the disabled help themselves,”4 policy makers generated an alternative policy pathway to strict medical models of disability that focused squarely on cure.5 They revised this paradigm by turning patients into social-service clients. Importantly, they were especially critical of the practice of warehousing people with disabilities in asylums and other residential institutions that kept them out of sight and out of mind. These “rehabilitationists,” as Edward Berkowitz called them,6 believed disability could be overcome and that people with disabilities could and should be integrated into the mainstream social and economic life of the nation.
The success of the rehabilitation policy paradigm traces to skilled lawmakers motivated, to varying degrees, by rehabilitation science, the American social welfare mantra of provision for the “deserving poor,”7 a sense of moral duty toward the least fortunate, and increasing national economic productivity. Political elites—policy makers, organizational leaders, and professionals—defined America’s social programs targeting people with disabilities for most of the twentieth century and measured their success in terms of reaching as many new clients as possible. That is, successful disability policy was defined as bringing more Americans into contact with federal programs and creating a lasting interaction between the disabled as clients and the government and nonprofit groups as service providers.
Disability policy was a success story, so members of Congress and established disability nonprofits had little incentive to consider and adopt different approaches. They became invested in the status quo. Yet significant change did occur. Ultimately, the late 1960s and early 1970s emerged as a period of creative ferment in US disability politics. Numerous policy innovations, such as the Architectural Barriers Act, the 1970 Urban Mass Transportation Assistance Act, and Section 504 of the Rehabilitation Act, led institutional, ideological, and cultural transformations in the American civil rights struggle. These policies were largely the work of political entrepreneurs—institutional activists who took advantage of political openings to change the course of disability politics,8 creatively carving out niches in which a rights agenda might flourish.9 They continued to push legislation that empowered people with disabilities rather than treated them as dependents of the American welfare state.
The political evolution of disability is inherently about social and political change set against a backdrop of deeply entrenched client-service models. Even in the 1960s, with the black civil rights struggle permeating social policy domains from housing to employment and education, no one urged the government to pursue civil rights for the disabled—not policy makers who worked simultaneously in disability and in civil rights or established disability groups working in the extant disability policy network.
What changed? And who changed it? The answers require knowing not only about the political and organizational history of disability policy making but also about the interplay between shifting institutional settings and the proliferation of political elites who saw Americans with disabilities as more than just clients of federal social programs.
Their efforts, and the policies they pursued, took on new meaning as they sought to break through cognitive and structural barriers informing the government’s role in how it should “deal” with disability. Consider, for example, the pivotal 1973 Rehabilitation Act. Often credited as setting off a rights paradigm for the disabled, the “act to replace the vocational rehabilitation act . . . with special emphasis on services to those with the most severe handicaps” was never meant to lay a foundation for disability rights.10 With the exception of architectural barriers, nowhere in the act’s eleven declarations of purpose is discrimination or rights mentioned. Yet this hybrid service-provision–civil rights legislation,11 precursor to the landmark 1990 Americans with Disabilities Act (ADA), came to be referred to by rights entrepreneurs like Sen. Bob Dole (R-KS) as the Handicapped Bill of Rights.12
The Rehabilitation Act was reconceived and redesigned by members of Congress working in the disability policy network. More than just an extension of a half-century-old vocational rehabilitation program, it would forever change the political landscape. Disability rights entrepreneurs viewed their efforts not only as providing a moral and economic good to their citizens but also as changing public attitudes about disability. “Emotion and sympathy do not provide much assistance to the person in a wheelchair seeking access to his post office, or trying to visit a pigeon-holed local social security office,” proclaimed Rep. Jim Wright (D-TX) at a 1975 architectural barriers oversight hearing. “His plight can be aided, however, by sensible action programs of government . . . by sustained commitment, involving both the application of public and private resources and the reshaping of public attitudes.”13 Wright’s point of view was shared by many: Congress had a role—a responsibility, as Justin Dart, cochair of the Congressional Task Force on the Rights and Empowerment of Americans with Disabilities claimed—in improving the lives of people with disabilities, and it went far past vocational rehabilitation.
Former presidential nominee Hubert Humphrey (D-MN) said that the government brought disabled people out of the “shadows of life” through the regular policy-making process.14 Disability rights gained momentum in Congress throughout the 1960s, and in the 1970s increasing attention to the plights of diverse, historically marginalized groups helped bring disability rights into the social consciousness as part of “America’s rights revolution.”15 Lawmakers who had experience working on civil rights legislation saw clear parallels, acting to make disability rights enforcement as vigorous as the enforcement of civil rights for other groups.
Disability rights began as an elite-driven movement. Disability rights entrepreneurs were not challenged by pressure groups or their constituents to pursue a particular policy trajectory. Instead, their activist spirit was shaped by their personal and professional biographies, filtered through the institutional and organizational context within which they worked.16 They were motivated to act by self-interest (e.g., professional and political ambitions), as well as values underpinning their other-regarding interests to do the morally right thing.17
Among those with a personal connection to disability, men like Humphrey, Sen. Orrin Hatch (R-UT), and President George H. W. Bush had friends and family members who experienced injustices. Dole, Sen. John McCain (R-AZ), and Rep. Tony Coelho (D-CA) had disabilities and directly confronted social, cultural, and structural barriers in their daily lives. Their experiences influenced their outlook on social policy and the role of government in improving the lives of disabled Americans.
Institutional activism was also motivated by policy makers’ belief that the federal government should be a leader in the disability rights struggle, moving beyond compassionate statements to actually improving people’s lives. One thing Congress could agree on—at least for a while—was equal rights for the disabled. Working to provide economic opportunities and rights to people with disabilities meant doing the morally right thing. Policy elites thus tapped into values at the heart of American society: self-reliance, independence, and citizenship. They made disability rights politically uncontroversial—as “American as apple pie”18—creating an attractive, nonpartisan issue readily taken up by freshman members of Congress and ambitious administration officials hoping to develop their policy portfolios and expand policy jurisdictions.
Political elites translated their beliefs about government empowering people with disabilities into action and their professional policy-making experiences into the evolution of disability as a policy issue. Analogizing the plight of the disabled to that of other minority groups and emphasizing their investment in social policy and the Great Society, these actors laid the groundwork for disability rights to expand under new political opportunities.
Institutional changes in the 1970s included the creation of new venues—such as the Senate Subcommittee on the Handicapped—that allowed disability-related issues to expand beyond the rehabilitation-focused policy network. These spaces allowed disability rights entrepreneurs to proactively change established ways of interacting with people with disabilities as patients and clients to interaction with them as citizens entitled to their civil rights. Thus, we see the emergence of rights policies such as the 1975 Education for All Handicapped Children Act (later renamed the Individuals with Disabilities Education Act [IDEA]), among others, which sought to desegregate the educational system by requiring districts to include disabled students in mainstream classrooms.
Outside a bounded political network, however, few people in the government or the public paid much notice to these political entrepreneurs’ efforts. President Richard Nixon vetoed the Rehabilitation Act twice, but on the basis of cost (associated with titles involving the expansion of vocational rehabilitation) rather than Section 504, the antidiscrimination and rights provision. Even after the civil rights rollback of the 1980s, when ADA opposition had coalesced around the idea that the legislation “reregulated” the labor market and hurt small business, disability rights were still touted as something that “strikes a chord in all Americans, whatever their political beliefs or geographical backgrounds.”19 Bipartisanship and political compromise continued to mark the framing of disability rights as a righteous cause—perennially noted at anniversary celebrations of the ADA.
Understanding the evolution of disability rights requires linking processes endogenous to the community of actors working in disability policy to broader exogenous forces reshaping American politics. Disability policy evolved incrementally under the stewardship of a disability policy network whose actors meant to extend, not attack, an existing policy area. To them, service provision was not outdated or ineffective; it was just incomplete. They saw accessibility, antidiscrimination, and civil rights efforts as the logical next steps in mainstreaming people with disabilities into social, political, and economic life. After all, what good is vocational rehabilitation if Americans with disabilities are denied employment because of discriminatory attitudes and practices? These efforts ultimately generated, rather than sprang from, a more multifaceted political understanding of disability and had important consequences for the development of the disability rights movement.
1. As Richard Scotch notes, “The concept of rehabilitation was at the core of the ideology of the emerging American welfare state.” Scotch, From Good Will to Civil Rights, 24. This, in turn, supports Theda Skocpol’s challenge to Harold Wilensky’s characterization of the United States as a “welfare laggard,” fitting more closely with Ann Orloff’s 1988 “belated welfare state” narrative. See Skocpol, Protecting Soldiers and Mothers; Wilensky, The Welfare State and Equality, 118; and Orloff, “The Political Origins of America’s Belated Welfare State.”
2. A policy monopoly, also known as an iron triangle, refers to a tightly bounded network including congressional committees, agencies in the Executive Branch, and interest groups governing a policy area and excluding outside actors. See Givel, “Punctuated Equilibrium in Limbo”; True and Utter, “Saying ‘Yes,’ ‘No,’”; and McCarthy, “Velcro Triangles.”
3. Barbara Altman and Sharon Barnartt use this term in regard to moral entrepreneurship in the politics leading up to the ADA. See Altman and Barnartt, “Moral Entrepreneurship and the Promise of the ADA.” As I show throughout this book, political entrepreneurship explains the much longer legacy of disability politics and broader civil rights.
4. Special Education and Rehabilitation, 86th Cong. 621 (1960) (statement of Judge Kenneth Griffith).
5. For more on the medical model and social model of disability, see Shakespeare, “The Social Model of Disability.”
6. Berkowitz in effect blames rehabilitationists for blocking alternative conceptualizations of disability (presumably including civil rights) from emerging. See Berkowitz, Disabled Policy. While partly true, this is not a complete picture when we take into account the broader political and institutional context that limited the ability for dramatic policy innovation to emerge during much of the middle part of the last century.
7. In Protecting Soldiers and Mothers, Skocpol argues that the distinction between deserving and undeserving is the major fault line running through American social policy.
8. Institutional activism has been used to describe the proactive behavior by those with access to power and resources—political entrepreneurs—championing causes that may overlap with social movement efforts. See Pettinicchio, “Institutional Activism”; Pettinicchio, “Strategic Action Fields”; and Pettinicchio, “Elites, Policy and Social Movements.”
9. In his work on biotechnology policy agenda setting, Adam Sheingate describes entrepreneurs as transforming a policy issue by creatively combining different ideas endogenous or exogenous to a policy domain. In doing so, political entrepreneurs can “change the flow of politics,” which is part of Mark Schneider and Paul Teske’s definition of a political entrepreneur. See Sheingate, “Political Entrepreneurship,” 185; and Schneider and Teske, “Toward a Theory of the Political Entrepreneur,” 737.
10. 119 Cong. Rec. 24,553 (1973). See also Bill 92, S.3987 (1972).
11. In his thesis on citizenship and social class, Alfred T. Marshall distinguished between civil citizenship (respect for individual rights), social citizenship (the provision of services to maintain a basic quality of life), and political citizenship (direct and/or indirect inclusion in the policy-making process), explaining that these develop sequentially. In many ways, disability policy blurred these forms of citizenship in that the focus on the political and civil followed from the social. See Marshall, Citizenship and Social Class.
12. 119 Cong. Rec. 16,401 (1973).
13. Effectiveness of the Architectural Barriers Act of 1968 (P.L. 90–480), 94th Cong. 1 (1975).
14. Many have referenced Humphrey’s statement in their congressional testimony over the years, including Betty Duskin of the National Council of Senior Citizens, who said that “a society may be judged by how it treats three groups in its population: Those in the dawn of life, its young; those in the twilight of life, its elderly; and those in the shadows of life, its disabled.” President Carter’s Social Security Proposals, Part 2, 95th Cong. 646 (1977).
15. Skrentny, The Minority Rights Revolution.
16. In Personal Roots of Representation, Barry C. Burden argues that life stories and legislators’ personal lives shape not only why they enter politics but also why and how they pursue particular issues. Burden argues that these personal roots ultimately shape policy outcomes as much as if not more so than party ideology and voter preferences.
17. For a discussion of the relationship between preferences, values, and decision making, see Hechter, Nadel, and Michod, The Origin of Values.
18. Kaufman, “Time to Ratify the Global Disabilities Convention.”
19. Implementation of the Helsinki Accords: Disability Rights and U.S. Foreign Policy, 103rd Cong. 79 (1994) (statement of Rep. Steny H. Hoyer).