Drawing on extensive fieldwork and a variety of original sources, Katharina Heyer examines three case studiesGermany, Japan, and the United Nationsto trace the evolution of a disability rights model from its origins in the U.S. through its adaptations in other democracies to its current formulation in international law. She demonstrates that, although notions of disability, equality, and rights are reinterpreted and contested within various political contexts, ultimately the result may be a more robust and substantive understanding of equality.
Rights Enabled is a truly interdisciplinary work, combining sociolegal literature on rights and legal mobilization with a deep cultural and sociopolitical analysis of the concept of disability developed in Disability Studies. Heyer raises important issues for scholarship on comparative rights, the global reach of social movements, and the uses and limitations of rights-based activism.
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About the Author
Katharina Heyer is Associate Professor of Political Science at the University of Hawai’i.
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The Disability Revolution, from the US, to Germany and Japan, to the United Nations
By Katharina Heyer
The University of Michigan PressCopyright © 2015 University of Michigan
All rights reserved.
The Disability Revolution: From Welfare to Rights
When I was fourteen, I got polio. When the doctor took my parents aside my mother asked, "Will he live?" The doctor looked at her and said, "You should probably hope he dies because if he lives he will be nothing more than a vegetable for the rest of his life." Well, I'm here today as an artichoke. You know, they're a little prickly on the outside with a big heart and I'd like to call on all the vegetables of the world to unite. (Roberts 1983)
UNITING ALL VEGETABLES
Ed Roberts, one of the most well-known leaders of the U.S. disability rights movement, addressed the 1983 Australian National Assembly of Disabled Peoples International (DPI) with this powerful call to unity. It was another six years until the U.S. Congress would pass the Americans with Disabilities Act (ADA), defining disability as a civil rights issue and revolutionizing disability policy around the globe. As the world's first comprehensive disability antidiscrimination law, the Americans with Disabilities Act became a model of rights-based disability policy, inspiring disability rights activists around the globe to rethink the way they organized and framed their demands. But, speaking in 1983, Ed Roberts captured an earlier, equally powerful moment in the history of international disability activism. By calling for unity for those considered "vegetables," denied their humanity and basic rights to social and political inclusion, Roberts captured the spirit of a growing movement toward self-determination and disability pride. This movement had reached a turning point three years earlier, at the 1980 Winnipeg Congress of Rehabilitation International (RI), then the largest disability organization with an international membership. Like most disability organizations at the time, both RI's membership and approach were dominated by rehabilitation professionals, illustrating a deepening divide between organizations for disabled people, such as RI, and organizations by disabled peoples themselves. Members with disabilities had long been critical of this power relationship and demanded equal representation of disabled people in RI's decision-making bodies. When these demands were refused, DPI broke away from RI, forming an independent disability organization with the motto "nothing about us without us." This became the movement's powerful mantra for years to come, as it captured the importance of addressing the paternalism, segregation, and marginalization that people with disabilities experienced in their lives and saw reflected in disability policy at the time. Nothing about us without us became the motto for DPI's founding meeting in Singapore in 1981, which coincided with the UN's International Year of Disabled Peoples (Driedger 1989).
Roberts's call for international disability activism catapulted the United States into an unprecedented leadership position in the international human rights community. The United States is rarely considered a leader in the development of human rights instruments, but the passage of the ADA in 1990 made it the global leader of disability policy. U.S. disability activists had already formed their first fragile cross-disability alliances during the 1970s when the disability community united to protest for the inclusion of disability discrimination under Section 504 of the 1973 Rehabilitation Act. Section 504 famously forbade disability discrimination by programs receiving federal funds, which was the first articulation of disability discrimination in U.S. policy, and was modeled closely after Title VI of the 1964 Civil Rights Act (Scotch 2001). The idea that disability discrimination was to be seen as analogous to race discrimination and needed the same protection under the law was considered radical at the time and a clear departure from traditional thinking about disability. The refusal of both the Nixon and Carter administrations to sign the 504 regulations prompted the first disability-wide protest by a movement that had never acted in unity before. This was a formative moment for U.S. disability activists, who were struggling to unite a movement that was historically divided by disability type and that spanned a wide and often contradictory set of movement goals (Barnartt and Scotch 2001). Yet activists emerged from the protests with a strong sense of collective identity, inspired by the idea that disability was more than just a personal experience and a medical category. Rather than a personal shortcoming, disability was to be experienced in political terms — as a form of discrimination like that experienced by women or by people of color. As Simi Linton explains, "We are bound together, not by a list of our personal shortcomings, but by the social and political circumstances that have forged us as a group" (Linton 1998, 4).
American disability law and activism commanded world attention during the 1980s. Activists around the globe paid close attention to the initial antidiscrimination articulated in Section 504, the protests needed to make it a reality, and to the broad expansion of this mandate into the world's first comprehensive disability antidiscrimination law, the 1990 Americans with Disabilities Act. Activists from around the globe traveled to the United States during this period — primarily to Berkeley as the center of U.S. activism — to apprentice with leaders such as Ed Roberts, Judy Heumann, and others to learn about movement strategies. In 1983, Roberts cemented the international focus of disability activism by cofounding the World Institute on Disability in Oakland, California. With the aid of a MacArthur Foundation genius award in 1984, Roberts turned the World Institute on Disability into an influential public policy center that connects local and global activism. That same year he served as keynote speaker for DPI's First National Assembly in Melbourne, Australia, from which the artichoke citation is taken, cementing the movement's self-determination principles with his speech entitled "When Others Speak for You, You Lose."
Robert's call for unity was part of an emerging trend in disability law and activism. First was the rejection of the idea that people with disabilities need to be thought of as "vegetables" — passive recipients of medical interventions and public charity who could never speak for themselves. Roberts's own life story, well known in activist circles, was living proof of that rejection. He contracted polio as a teenager, which left him with virtually no functional movement and dependent on a respirator for breathing. He recalls his first experience with self-determination while still in the hospital:
I decided that I wanted to die. I was fourteen years old. Now, it's very hard to kill yourself in a hospital with everything set up to save your life. But the mind is a powerful thing. I stopped eating ... and dropped to 54 pounds. My last special duty nurse left, and the next day I decided I wanted to live. You see, that was a big turning point. Up until then, these nurses were available and doing things for me around the clock — I didn't have to make any decisions for myself because they were always there. When they all finally left, that's when I realized that I could have a life, despite what everyone was saying. I could make choices, and that is freedom. I started to eat again.
Roberts continued his education from home, with an innovative school-to-home telephone system and his mother Zona's endless advocacy. He enrolled in the University of California at Berkeley in 1962, which was nationally known as the center of radical politics and progressive social movements. Berkley's politics offered a fertile ground to think about disability as a form of oppression, inspiring Roberts to apply lessons learned by civil rights and women's rights activists to his own life. He founded the Rolling Quads, an organization of students with disabilities who first lived in the campus infirmary but soon moved into the community and provided the basis for the country's first Center for Independent Living in 1972. There are now around 400 independent living centers in the United States, which have become models for self-help and advocacy for and by people with disabilities.
In 1975, Governor Jerry Brown appointed Roberts as director of California's Department of Rehabilitation — the same agency that had refused to serve him fourteen years earlier when they deemed him too severely disabled to ever work. His eight-year tenure as Department of Rehabilitation director fundamentally challenged how rehabilitation policy viewed a person's disability and their ability to work. In 1985, Roberts cofounded the World Institute on Disability, an internationally recognized public policy think tank, and became a global leader and mentor to disability activists from many countries, including Germany and Japan, which lie at the center of this book. His legacy is preserved in the Ed Roberts Campus in Berkeley, an independent living information and community center where he is remembered for the powerful inspiration and political momentum he provided to individual activists and the independent living movement worldwide.
THE DISABILITY REVOLUTION
Given Roberts's international stature and powerful charisma, it is not a surprise that he was well positioned to issue his call to unity in 1983. The passage of the Americans with Disabilities Act a few years later solidified the international reputation of the United States as a leader in disability rights. Before passage of the ADA, the United States rarely occupied a leadership role in international human rights circles. Although the United States played a key role in composing the 1948 Universal Declaration of Human Rights and other key principles that changed the nature of international human rights legislation, when it comes to signing or ratifying key international human rights instruments the United States is widely considered an outcast. The United States has failed to ratify many of the principal international agreements, most prominently the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), the Kyoto Protocol, the International Criminal Court, and the International Covenant on Economic, Social and Cultural Rights (ICESCR), commonly considered the International Bill of Rights. The ICESCR requires states to promote and protect a wide range of social, economic and cultural rights, including the right to health, to an adequate standard of living, and to education. The human rights community is in general agreement that the United States prioritizes the protection of political rights and civil liberties but considers the guarantee of economic rights as incompatible with the free market economy it cherishes. And yet this chapter will show that the Americans with Disabilities Act, while celebrated as an extension of civil rights, also fundamentally affects economic rights, and therefore transcends the traditional boundary between the two. Moreover, as the first comprehensive disability antidiscrimination law in the world, the ADA has had a powerful impact on the formation of disability rights law and activism in countries across the globe. The ADA provided the first example of a disability rights model that was the envy of many disability activists at the time. It is a product of the U.S. civil rights movement, modeled after the 1964 Civil Rights Act, and as such recognizes people with disabilities as a political minority with a history of oppression. Its emphasis on equal opportunity, integration, and individually enforceable civil rights provided a powerful contrast to more traditional models of disability policy based on welfare and rehabilitation. The ADA ushered in a new generation of disability laws, reflecting a new view of disability as a social and political phenomenon, rather than as a medical problem.
Versions of this new model of disability, which I call a "rights model" of disability, have found their way into many national and international disability instruments. The disability revolution has fundamentally challenged traditional ways of thinking about disability, moving from a welfare model to a rights model. This chapter provides the theoretical background for examining the foundations of this rights model and for the subsequent journey of disability rights to countries that were deeply embedded in the more traditional welfare model. The chapter begins by looking at theoretical distinctions between the two predominant theoretical models regarding disability: a medical model, which views disability as a physiological limitation, and a social model, which views it as a form of social oppression. What are the implications of these differences for disability policy? For example, do communities respond to the universally high unemployment rates for workers with disabilities by mandating employment quotas or sheltered workshops, as proposed by the medical model, or do they guarantee equal employment opportunities and individualized accommodations of disability difference, as mandated by a rights-based model? These theoretical distinctions became key to the shift in disability policy occurring in the United States in the 1970s that offered the first rights-based alternative to the traditional welfare model. The idealistic framers of Section 504 of the 1973 Rehabilitation Act incorporated the first disability antidiscrimination mandate, consciously basing it on their experiences with civil rights law. The 1990 Americans with Disabilities Act then expanded this model into broader protections for both public and private accommodations, as well as reasonable accommodations in employment. The chapter argues that the turn to the rights model in the United States mandated a deliberate turn away from welfare. Indeed, the ADA was passed as a civil rights law by an overwhelming majority in Congress not only to combat stereotypes and expand employment opportunities, but also as a way to reduce welfare rolls and turn Americans with disabilities into productive, taxpaying citizens.
The ADA's framing of disability as a civil rights issue allowed activists to counter the paternalism and charity inherent in the taken-for-granted assumption that disability equals nonability — an assumption deeply embedded in the welfare laws of most developed nations. This framing led to a revolution in the ways disability activists organized their demands, as well as in the ways disability policy began orienting itself along a rights model. This chapter looks at the role of the United States at the forefront of this disability revolution, which shifted global attention to disability from welfare to rights-based policies. The American turn to disability rights is an instructive example to the question that animates much sociolegal rights scholarship: what is gained and what is lost when adding disability to a civil right framework, and, more broadly, when framing questions of social justice in legal terms. The ADA is deeply embedded in the American civil rights experience and as such echoes both the power and the limitations of civil rights frames documented in sociolegal scholarship (Scheingold 2004; McCann 1994).
This chapter examines the role of the United States at the forefront of the disability revolution, but also recounts the political strategies that led to the enthusiastic passage of the ADA by a government intent on reducing welfare. While the ADA connects to a powerful civil rights history, it also limits the frame of the rights model to the realm of negative rights that are emblematic of U.S. antidiscrimination law. The ADA's reasonable accommodation mandate makes some nods in the direction of positive action by requiring employers and providers of public and private accommodations to use resources in order to ensure the equal participation of people with disabilities. In that sense, disability offers a fundamental challenge to traditional assumptions inherent in the equal treatment mandate because equal treatment for people with disabilities cannot ignore disability difference. Disability equality thus demands the simultaneous recognition of equal rights and special needs. The ADA's equality mandate pushes the limits of the equality-as-sameness model by effectively arguing for differential treatment and by explicitly requiring that we not only recognize but also change norms that are based on the experiences of the nondisabled. It points to a more robust notion of equality by essentially challenging social norms to incorporate the experiences of all Americans, experiences that exist on a broad spectrum of impairments and might affect anybody during their normal life cycle.
Excerpted from Rights Enabled by Katharina Heyer. Copyright © 2015 University of Michigan. Excerpted by permission of The University of Michigan Press.
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Table of Contents
Introduction: Rights Enabled 1
Chapter 1 The Disability Revolution: From Welfare to Rights 15
Chapter 2 Disability Rights as Civil Rights: The ADA and the Limits of Analogy 51
Chapter 3 "Dreamland USA": American Disability Rights Travel to Germany 85
Chapter 4 From Welfare to Rights: Disability Law and Activism in Japan 123
Chapter 5 Disability Rights as Human Rights 167
Conclusion: Tools for Going Global 203