Numbering six hundred million, people with disabilities represent almost one in ten of the world’s population, and form one of its largest minorities. According to Mary Robinson, United Nations High Commissioner for Human Rights, “We know that persons with disabilities frequently live in deplorable conditions, and face physical and social barriers, which prevent their integration and full participation in the community. As a result, millions of adults and children throughout the world are segregated, deprived of virtually all their rights, and some-times lead wretched and marginalized lives.” Former United Nations Secretary-General Javier Perez de Cuellar, in a 1998 report to the UN, echoed this observation. He said, “Equality of opportunity simply does not exist where a disabled child cannot go to school, where a disabled mother has no health care, where a disabled man cannot get training or a job, or where disabled people cannot move freely on the streets.”
Historically, organized society has persecuted, segregated, and marginalized people with disabilities. Especially onerous examples during the early 20th century include pseudo-scientific rationales that spawned eugenics and sterilization policies, legitimized institutionalization, and led to the extermination of thousands of people with disabilities in Germany prior to World War II. While these policies and practices later gave way to a growing emphasis on charity, medical treatment and rehabilitation, they left behind bricks and mortar institutions where people with disabilities continue to be warehoused today, and a legacy of prejudice and paternalism that remains deeply embedded in the social consciousness.
Spurred by the civil rights movements of the 1950s and 1960s, people with disabilities in the United States began to recognize and interpret the artificial restrictions placed on their lives as forms of oppression. Using advocacy, protest, law reform and group identity as primary tools, disability activists built a new political movement that sought equality and social justice. In doing so they called upon society itself to take responsibility for policies, barriers and stereotypes that isolated and excluded people with disabilities from community life.
The disability rights movement in the United States undeniably has served as a beacon for the international community by recognizing early in the process the role of discrimination and prejudice in shaping choices and opportunities. Following in a long civil rights tradition, the first Federal disability rights law, Section 504 of the 1973 Rehabilitation Act, set the stage for a new era by adopting the social model of disability policy. Not only did the law establish an anti-discrimination standard for covered entities, it also established all-important judicial remedies to discrimination. Equally as significant, Section 504 also empowered disability activists to examine their own experiences by using a rights-based analysis, thus sparking a grassroots political movement that built and sustained the community momentum that was required to enact the landmark 1990 Americans with Disabilities Act (ADA).
Equality of opportunity, accommodation and inclusion comprise the core principles of the ADA, a law that prohibits disability discrimination by private employers, state and local governments, public accommodations, and by public and private transportation and telecom-munications. Since its enactment, over forty-five countries have also passed some form of disability anti-discrimination legislation or included disability specifically in the country’s constitution. Meaningful implementation and enforcement of these new laws, however, remain a persistent challenge to governments and disability communities in most countries. Irrespective of these complications the very existence of the laws signifies a profound shift toward social awareness of disability discrimination.
The international community first recognized the social model of disability policy during the United Nations Decade of Disabled Persons (1983-1992). Leading up to the decade, the UN had passed various resolutions that led to the World Programme of Action Concerning Disabled Persons. It presents a comprehensive statement of both the goals of treatment and rehabilitation, and equal social and economic opportunity, justice and citizenship for people with disabilities, and even includes strategies countries are encouraged to employ to make its promise a reality. In 1993 the UN adopted the Standard Rules on the Equalization of Opportunities for Persons with Disabilities, which sets forth critical steps countries should take to fulfill the promise of equality established in the World Programme of Action. While the Standard Rules and the World Programme of Action are non-binding, they have established a blueprint for action.
Responding to increasing pressure from the international disability community, the UN General Assembly, on December 19, 2001, adopted a resolution to create an Ad Hoc Committee “to consider proposals for a comprehensive and integral international convention to protect and promote the rights and dignity of persons with disabilities”, a resolution that was first passed by the General Assembly’s Third Committee on November 28, 2001. Momentum towards achieving a convention continues to build this year, with the passage of a Resolution on a com-prehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities by the Commission for Social Development. The Resolution recommends the adoption of the convention by the UN’s high-level Economic and Social Council, including the convention’s requirement for ECOSOC to remain apprisedof the matter.
Advocates have maintained that while existing UN human rights treaties, which now have been interpreted to recognize disability, offer significant potential to advance the rights of individuals with disabilities, they have been widely underutilized. Unquestionably the process of recasting disability policy internationally from the charity or medical model to the social model would accelerate if human rights instruments were employed more frequently on behalf of people with disabilities. The proposed Disability Convention, however, would unequivocally establish and elevate disability to its rightful place as an internationally recognized and enforceable human rights concern.
At the regional level, the Organization of American States (OAS) has enacted disability anti-discrimination legislation. The OAS is the first intergovernmental organization to adopt a binding human rights treaty on disability. In 1999 the OAS adopted the Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities. It is the first regional treaty to define disability-based discrimination, though it does not provide for individual rights of enforcement.
By enacting the 1990 ADA the United States embarked on an historic journey. It sent the message to its own citizens as well as to the international community that it is both practical and socially beneficial to take steps to challenge disability-based discrimination. While the U.S.
Supreme Court in a recent series of misguided decisions has redefined who is entitled to protection under the ADA, and somewhat narrowed the obligation of states to comply with it, practically speaking the ADA has permanently and dramatically altered the architectural and attitudinal landscape of the nation. Now that the principles of accessibility and accommodation are embedded in the public’s consciousness, it will seem to future generations that it has always been so.
As Degener and Quinn so eloquently stated in their paper A Survey of International, Comparative and Regional Disability Law Reform, “[t]he UN Standard Rules of 1993 undoubtedly provided the key moral imperative for change on a worldwide basis, but there equally can be no doubt that the enactment of the Americans with Disabilities Act (ADA) showed that change was both possible and practicable.”
From Principles to Practice
Against this backdrop, topics were identified that reflected key historical, theoretical and practical issues and problems facing disability rights advocates and law reformers everywhere. Leading experts were invited to prepare papers and lead plenary discussions on their respective topics at the Symposium.
The dynamic nature of disability rights law and policy in the world today means that changes have inevitably taken place in national, regional and international laws since October, 2000. A number of the papers have been revised since the Principles to Practice Symposium took place, and all of the articles presented here have been edited and updated to reflect the state of the law through the end of the year 2000. A few articles incorporate legal developments, enactments and literature up to the spring of 2002. Because currency varies somewhat from article to article all of our authors have included their contact information (also available on the DREDF web site at http://www.dredf.org), and welcome reader inquiries concerning specific laws, jurisprudence or organizations that may have been amended since a given article’s final submission for publication.
The articles, presented in this volume, are grouped into four thematic sections.
Part I – Disability Anti-Discrimination Law – The State of the World
While many countries have enacted some form of anti-discrimination legislation or included disability in the constitution, when the Symposium was being planned we did not know how many countries had taken such steps, and these important laws and amendments had not been collected in one place or analyzed to determine which disability model each had adopted. For the first time a comprehensive assessment has been undertaken and the results presented in a seminal article entitled A Survey of International, Comparative and Regional Disability Law Reform authored by Theresia Degener and Gerard Quinn. This work identifies and categorizes disability anti-discrimination law and policy, including instruments adopted by the United Nations, legislation and constitutional reforms at the level of individual countries, and recent regional reforms. An exceptional and much-needed contribution to the body of knowledge about disability anti-discrimination law, this article affirms that the disability rights movement has had a substantial impact worldwide, and inspires and motivates all those who care about advancing human and individual rights for people with disabilities globally. It also provided the contextual framework for the Symposium. Theresia Degener is Professor of Law, Administration and Organization, University of Applied Sciences Rheinland-Westfalen-Lippe, Bochum, Germany. Gerard Quinn is Lecturer in Law, National University of Ireland (Galway Campus).
Part II – Foundational Issues in the Use of Anti-Discrimination Law
This section contains three articles on the complex topics of disability prejudice, defining disability, and the dissonance between the welfare model and the civil rights model for disability law.
Observed broadly, prejudice is the irrational belief that another – or “other” – is different in a way that makes them inherently less worthy than ourselves and merits unequal treatment. Disability literature is just beginning to theoretically explore disability prejudice’s complex history and the factors that root prejudice and fear so deeply in the human psyche in relation to disability. Since the social welfare model is so pervasive in disability public policy, we thought it important to start the conference with a discussion of prejudice as a common denominator for adopting a civil rights approach.
Two articles presented here explore the topic. Silvia Yee, International Law and Policy Fellow at DREDF, has authored Where Prejudice, Disability and “Disablism” Meet, which appears in this section. Yee examines how the burgeoning field of disability studies has responded to the notion of prejudice and how fields of study that explore prejudice as a psychological, social and cultural phenomenon can inform this examination, but for the most part have failed to do so. She also focuses on some of the factors that make disability prejudice so difficult to examine and evaluate and suggests future possibilities and implications. What Is Prejudice as it Relates to Disability Anti-Discrimination Law? appears in Part IV. Authored by David Ruebain, a British attorney and noted education and disability law expert, the article presents examples of the impact of prejudice on children and adults with disabilities and the role anti-discrimination law plays in reversing negative practices and policies, including examples from Ruebain’s personal life. The article also discusses the relationship of disability discrimination to the evolving field of bioethics.
Historic definitions of disability in social welfare, social supports and health policies are rooted in functional limitation models that pay little heed to the impact of prejudicial social norms. The legacy of these definitions resonates throughout the world. In an article entitled Different Definitions – Same Problems – One Way Out?, Aart C. Hendriks explores the definitional dilemma from historical, social, political, and legal perspectives, and suggests alternatives for consideration.
Recent developments in ADA case law make this discussion even more crucial. The ADA defines disability by requiring that people with disabilities show they possess an impairment that qualifies them for protection from prohibited discrimination. They must possess either a physical or mental impairment that substantially limits a major life activity, or a record of such an impairment. It also prohibits discrimination based on perception of impairment, whether or not the individual actually possesses one. This hybrid definition combines a restrictive impairment model with a prohibition against discrimination based on perception alone, which acknowledges and builds on the social model. These conflicting principles in the ADA definition of disability have created confusion for the courts, and recently resulted in the narrowing of the definition by the U.S. Supreme Court.
By combining a medical definition of disability with one rooted in the social model the ADA typifies the dissonance that advocates confront everywhere as they grapple with creating effective anti-discrimination initiatives that afford broad protection from discrimination for people with disabilities. As anti-discrimination legislation and policies evolve, a more appropriate definition of disability must also evolve or perhaps give way altogether to the recognition that the discriminatory actions of others should be the focal point rather than whether the victim of discrimination fits some defined notion of “disability.” Definitional questions present a tremendous challenge both practically and theoretically and will be the subject of continuing exploration and debate as the civil rights paradigm matures. Aart C. Hendriks is Secretary of the Programme on Health Law Evaluation of the Health Research and Development Council (ZON), The Hague, The Netherlands.
In an article entitled Tensions and Coherence in Disability Policy: The Uneasy Relationship Between Social Welfare and Civil Rights Models of Disability in American, European and International Employment Law, authors Lisa Waddington and Matthew Diller examine the relationship between the social welfare and civil rights models of disability policy and consider whether or not the dissonance between the two can be resolved or reduced, to what extent the tension is a problem, and whether or not a new disability policy model is needed. While disability advocates internationally have gained substantial recognition for the social model of disability policy, its predecessor is still deeply entrenched in most societies, though often co-existing with the social model in an uneasy and paradoxical truce.
While medical and technological advances have dramatically improved the probability that people with disabilities who have access to such care will survive illness or injury, medical intervention will not heal discrimination. Such a person-centered model, furthermore, fails to recognize or account for the impact of social stigma and prejudice, which exists outside the boundaries of the body. Likewise, social welfare historically has aimed to provide important, even essential services or support to the individual, but has not responded to the impact of external social norms that include pity and prejudice. The unfortunate legacy of the medical model is offending assumptions and stereotypes about disability. The problems that flow from these fundamental conceptual conflicts raise important questions about the direction of future reforms and call for consideration of alternative models that harmonize their underlying principles. Lisa Waddington is Senior Lecturer in Law at Maastricht University, The etherlands and Matthew Diller is Professor of Law at Fordham University School of Law, New York.
Part III – Focus on the Operation of Laws
This section contains two articles that look at foundational issues concerning the underpinnings of law – how they are drafted and interpreted in accord with society’s basic idea of fairness.
In an article entitled The ADA and Models of Equality, Arlene B. Mayerson and Silvia Yee discuss formal versus substantive equality as they are regarded in U.S. and Canadian law.
The ADA intended to achieve equal opportunity by calling for affirmative steps to remove barriers and provide accommodations. However, the goals of the ADA have been undermined by Supreme Court decisions, which adopt an equal treatment or formal equality approach to the 14th Amendment equal protection guarantee in the U.S. constitution. The authors examine the alternative material equality model that is widely found in international disability anti-discrimination law. They also analyze Canadian equality theory found in the constitution and in jurisprudence. Arlene B. Mayerson is Directing Attorney with DREDF and lecturer in disability rights at University of California Boalt Hall School of Law, and Silvia Yee is the International Law and Policy Fellow with DREDF.
People with disabilities have been institutionalized in virtually every country around the globe. The disability rights movement considers incarceration of people with disabilities in institutions to be the most onerous form of disability discrimination. In a proactive attempt to garner attention to this inhumane practice that violates basic human rights, disability rights attorneys and activists have turned to international law. In an article entitled The Right to Community Integration for People with Disabilities Under United States and International Law, Eric Rosenthal and Arlene Kanter examine how the right of people with disabilities, especially those with mental disabilities, to community integration has been carved out of existing general international laws. They observe that while the right exists more explicitly under the ADA, judicial interpretation has been required to spur any meaningful action that actually remedies the widespread practice, and furthermore, at this writing, the right remains conditional. Eric Rosenthal is Executive Director, Mental Disability Rights International and Arlene Kanter is Professor of Law at Syracuse University College of Law.
Part IV – Real Life – Needing, Getting, and Living with Disability Anti-Discrimination Law
This section presents three articles that discuss surviving prejudice, enacting the ADA, and the effect of the ADA from the viewpoint of people with disabilities.
David Ruebain’s paper entitled What Is Prejudice as it Relates to Disability Anti-Discrimination Law, previously described, is presented here.
In an article entitled When to Hold ‘Em and When to Fold ‘Em:Lessons Learned From Enacting The Americans with Disabilities Act, Jane West and Pat Wright collaborate to examine the political process that led to the passage of the ADA. Wright and West introduce the human dynamics that surrounded the legislative process leading to the law’s enactment. In light of the worldwide call by the disability community for anti-discrimination laws, we hope that others can draw upon some of the lessons learned and the tactics used during the passage of the ADA. As the article’s title suggests, some of these have universal appeal and likely will become essential tools in a successful legislative campaign. Jane West is an education consultant working in Washington, DC and Pat Wright is DREDF’s Governmental Affairs Director.
In Achieving Accessibility: How the Americans with Disabilities Act Is Changing the Face and Mind of a Nation, Silvia Yee and Marilyn Golden present testimonials “from the trenches,” and discuss how through litigation, settlements and voluntary compliance the ADA is functioning as an effective tool against disability discrimination. This article is especially relevant as an affirmation that while imperfect, the ADA has indeed profoundly changed and improved the lives of people with disabilities. Silvia Yee is the International Law and Policy Fellow with DREDF, and Marilyn Golden is a Policy Analyst with DREDF.
Mary Lou Breslin
Disability Rights Education and Defense Fund (DREDF)
Berkeley, California, U.S.A. April 2002
 Mary Robinson, United Nations High Commissioner for Human Rights, Video Message to the International Seminar on Human Rights and Disability, Almåsa Conference Centre, Stockholm, Sweden ( Nov. 5, 2000).
 World Disability Report (Geneva, International Disability Foundation, 1999).
 G.A. Res., 56th Sess. [on the report of the 3rd Committee on the draft resolution concerning a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities (A/56/583/Add.2)], U.N. Doc. A/RES/56/168 (2001).
 Agenda item 3(b)(ii), adopted at the 40th Sess. of the Committee for Social Development (Feb. 11-27, 2002) available at 2002disabilityres(B).pdf.