A White Paper

Understanding the Role of an International Convention on the Human Rights of People with Disabilities

An analysis of the legal, social, and practical implications for policy makers
and disability and human rights advocates in the United States

National Council on Disability

June 12, 2002

National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004

Understanding the Role of an International Convention on the Human Rights of People with Disabilities

This report is also available in alternative formats and on NCD's award-winning Web site (www.ncd.gov).

Publication date: June 12, 2002

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The views contained in the report do not necessarily represent those of the Administration as this and all NCD documents are not subject to the A-19 Executive Branch review process.

National Council on Disability
Members and Staff

Members

Marca Bristo, Chairperson
Kate Pew Wolters, First Vice Chairperson
Hughey Walker, Second Vice Chairperson

Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel-Diaz
Debra Robinson
Ela Yazzie-King

Staff

Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Martin Gould, Ed.D., Director of Research
Kathleen A. Blank, Attorney/Advisor
Gerrie Drake Hawkins, Ph.D., Program Specialist
Pamela O'Leary, Interpreter
Allan W. Holland, Chief Financial Officer
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Joan M. Durocher, Esq., Fellow

Acknowledgments

The National Council on Disability (NCD) wishes to express its appreciation to Janet E. Lord, legal counsel and coordinator of Human Rights Programs at Landmines Survivors Network, who was commissioned by NCD to conduct research and to author this report. NCD would also like to acknowledge the contributions of participating individuals and organizations in the NCD International Convention Educational Project, including Rosangela Berman-Bieler, president of the United States International Council on Disabilities, and Jerry White, executive director of Landmines Survivors Network. Eric Rosenthal, executive director of Mental Disability Rights International, provided invaluable overall guidance and advice in addition to reviewing and providing commentary on drafts.

The NCD International Watch Advisory Committee coordinated the development of this project: Joelle Balfe, consultant at NCD, and Kathleen Blank, attorney advisor at NCD, contributed significantly to the development of the manuscript and followed its completion from beginning to end. Jeffrey Rosen, general counsel and policy director at NCD, provided support and guidance at all stages of the project. Katherine N. Guernsey, international law consultant for Landmine Survivors Network, provided essential editorial assistance and research.

Numerous individuals provided substantial feedback on the complete manuscript or parts of it: Yerker Andersson, Ph.D., NCD International Watch facilitator; Zahabia Adamaly, Landmine Survivors Network; Elaine Belmear, Landmine Survivors Network; Sylvia Caras, People Who; Theresia Degener, professor of international law; Nancy Flowers, human rights consultant; David Hawk, consultant; Diane Richler, president-elect, Inclusion International; Javier Vasquez, Pan American Health Organization; William Kennedy Smith, M.D., Center for International Rehabilitation; Michael Sharpston, human rights consultant; and Erica Shapiro Taylor, publications consultant. The report is much stronger and more informed as a result of their comments. Finally, NCD would like to express its appreciation for the participation of all those present at its April 8, 2001, Summit on Human Rights and Disability. The dialogue and specific feedback provided at that meeting served to inform the content of this report in significant ways.

Contents

I. Executive Summary

II. Introduction

A. The Global Human Rights Condition of People with Disabilities

B. Purpose of the Paper

III. Background

A. Disability Law in the United States

B. Human Rights for People with Disabilities and the International Human Rights System

i. The Emergence of International Human Rights Law

ii. Addressing the Human Rights of Specific Populations

iii. International Human Rights Law for People with Disabilities

iv. Proposals for an International Human Rights Treaty for People with Disabilities

IV. Addressing the Human Rights of People with Disabilities

A. A Paradigm Shift: Transforming "Needs" into Rights

i. Traditional vs. Contemporary Models of Disability

ii. Rights-based Approaches to Disability

B. Universality and International Human Rights Law

V. An International Convention on the Rights of People with Disabilities

A. Transformative Participation in an International Human Rights Treaty-Making Process

i. Raising Awareness about the Human Rights Condition of People with Disabilities

ii. Building Coalitions of People with Disabilities and their Allies Across Transnational Civil Society and Capacity Building

B. Promoting Institutional Shifts through the Adoption of an International Convention on the Rights of People with Disabilities

i. The UN Human Rights System

ii. The UN Specialized Agencies and Development Institutions

iii. The Human Rights of People with Disabilities within Human Rights Organizations

C. The Role of Legally Binding Obligations

i. Creating Legal Accountability

ii. Reflecting Latest Developments in Disability Law and Policy

iii. Prompting Shifts in National Laws and Policies

VI. Adopting an International Convention: Issues and Concerns

A. Strengthening the Advocacy Capacity of People with Disabilities and their Allies

B. Ensuring Constructive US Participation

C. Combating Treaty Fatigue

VII. Recommendations and Future Directions

A. Principles for Participation in the Process of Drafting an International Convention on the Rights of People with Disabilities

B. Addressing Attitudes and Perceptions of People with Disabilities in Law and Policy Initiatives

C. Raising Awareness and Building the Capacity of Actors to Address the Human Rights of People with Disabilities

D. Principles to Support Full Participation in Society by People with Disabilities

E. Human Rights Principles and Spheres of Human Rights Protection for People with Disabilities

F. A Strong Treaty-Monitoring Mechanism

G. Future Directions in Coalition-Building

VIII. Conclusion

Appendix

Glossary of International Law Terms (recommended pre-reading for those who do not have a background in international law)

Mission of the National Council on Disability

The Problem

People with disabilities constitute a sizable global population, yet the often appalling human rights condition experienced by this community has remained largely unaddressed. Although the human rights system encompasses the principles of equality and non-discrimination, people with disabilities are commonly the subjects of de jure and de facto discrimination on a daily basis. This discrimination occurs in a range of arenas, including the workplace, schools, health care facilities, government, recreational facilities, and many more societal contexts. As a result of discrimination, segregation from society, economic marginalization, and a broad range of other human rights violations, people with disabilities have consistently been excluded from the decision-making fora where positive changes in law and policy can be developed and implemented. While some governments and societies have adopted a social inclusion and a rights-based approach to disability issues, many more rely on charity models of assistance or a narrow medical model that focuses on finding medical "solutions" to limitations caused by a disability and ignores the need to address the vast array of limitations created and imposed by discrimination, exclusion, and ignorance.

Existing Protections

Although such domestic legislation as the Americans with Disabilities Act (ADA) does indeed expand legal protections for people with disabilities and open up opportunities for their full participation in society, the promise of the ADA remains unfulfilled. In his launching of the New Freedom Initiative in February 2001, President George W. Bush acknowledged his commitment to "tearing down the remaining barriers to equality that face Americans with disabilities today" and recognized that "significant challenges remain for Americans with disabilities in realizing the dream of equal access to full participation in American society" to create "a nation where no one is dismissed or forgotten." In the international human rights legal framework, people with disabilities are, for all practical purposes, invisible, despite the fact that all human beings are entitled to the full panoply of human rights protections. Disability is persistently marginalized as a human rights issue within the United Nations system and in the work of international non-governmental organizations, including human rights organizations. Although disability has been specifically addressed in some existing human rights documents that do add content to the human rights field, such provisions are for the most part not housed in a treaty, nor are they widely regarded as having attained the status of binding law. Moreover, these documents have not effected integration of disability into the program areas of most international institutions. In countries where national legislation to protect the rights of people with disabilities is particularly weak, or even non-existent, self-advocacy efforts are further complicated by the lack of a globally recognized set of standards.

Arguments in Favor of a Convention

The current effort to secure the adoption of an international convention on the human rights of people with disabilities has much to offer. The most significant advantages include (i) providing an immediate statement of international legal accountability regarding disability rights; (ii) clarifying the content of human rights principles and their application to people with disabilities; (iii) providing an authoritative and global reference point for domestic law and policy initiatives; (iv) providing mechanisms for more effective monitoring, including reporting on the enforcement of the convention by governments and non-governmental organizations, supervision by a body of experts mandated by the convention, and possibly the consideration of individual or group complaints under a mechanism to be created by the convention; (v) establishing a useful framework for international cooperation; (vi) providing a fair and common standard of assessment and achievement across cultures and levels of economic development; and (vii) providing transformative educative benefits for all participants engaged in the preparatory and formal negotiation phases and for the public as countries consider ratification of the convention.

Whereas the provisions of an international human rights convention for people with disabilities will serve to articulate specific rights and provide machinery for monitoring compliance with obligations, the transformative nature of the treaty-making process itself can also generate an array of important benefits. These benefits include raising the general public's awareness about the human rights of people with disabilities; highlighting abuses of those rights; further developing the knowledge-base of governmental and non-governmental participants; providing the stimulus for extensive programmatic developments; offering capacity-building opportunities for disability groups as a result of increased global focus on their issues; and improving data collection.

Future Directions

The momentum for the development of an international convention on the human rights of people with disabilities already exists, having been given impetus by the adoption of a UN General Assembly resolution, initiated by Mexico, calling for "a comprehensive and integral international convention to protect and promote the rights and dignity of persons with disabilities." That step builds on significant efforts undertaken in recent years by Ireland in support of such a convention. For a convention to be truly effective, it must represent the aspiration and experience of the people it seeks to protect. Consistent with the United Nations "Standard Rules on the Equalization of Opportunities for People with Disabilities," people with disabilities should be recognized as having a right to participate in drafting legal standards that will affect their human rights. For the momentum generated by the United Nations General Assembly to be productively maintained and used, the process by which the convention is developed must be fully participatory and inclusive of people with disabilities, including the most marginalized groups. Different disability groups have somewhat different experiences and legal needs, and the full participation of a broad array of consumer-led disabilities groups--including organizations of people with mental, physical, and sensory disabilities--is essential at the international level. People with disabilities must ensure that the provisions of a treaty consist not of vague non-discrimination concepts but of clear principles that seek to recognize and counter multiple forms of discrimination and empower people with disabilities in such areas as public life and political representation; participation in decision-making in all areas, including, but not limited to, legal and administrative contexts; and access to education, health care, and sport and culture. Members of the global disability community have much to gain from the active participation of their American counterparts, and, in turn, Americans stand to benefit from lending their voice to the convention dialogue.

A. The Global Human Rights Condition of People with Disabilities

As a group composed of some 600 million people worldwide, of whom approximately 80 percent live in developing countries, people with disabilities are a sizable global population.⁽¹⁾ More compelling, however, than the sheer magnitude of this population, is the appalling lack of respect for even the most basic human rights of people with disabilities in both the developed and the developing world. As the first UN Special Rapporteur on Disability, Leandro Despouy, observed in 1991:

[People with disabilities] frequently live in deplorable conditions, owing to the presence of physical and social barriers which prevent their integration and full participation in the community. As a result, millions of children and adults throughout the world are segregated and deprived of virtually all their rights and lead a wretched, marginal life. ⁽²⁾

Access to housing, education, health care, non-exploitative employment, mobility in the built environment, and general social contact are of fundamental importance to all human beings. Yet millions of people with disabilities around the world are systematically denied access to the resources necessary to meet these basic needs, resulting in extreme poverty, social exclusion, and poor health. As is true with all socially disenfranchised and economically disadvantaged groups, people with disabilities generally have little or no influence in the public policy process or the decisions that affect their daily struggle for survival.

Driving the legal and political decisions that result in this human rights crisis is the underlying attitude that people with disabilities have intrinsically less value because of their disabilities. That attitude is a double-edged sword. Not only does it influence the social and legal structures that affect--and often disempower--people with disabilities, but it has a direct impact on the people with disabilities themselves. Social psychologists have documented the manner in which oppressed groups who have been systematically denied power and influence in society often internalize negative messages about their abilities and come to accept them as their "truth." ⁽³⁾ Members of the disability community have illustrated the impact of this cycle in compelling personal accounts of disability oppression. ⁽⁴⁾ Internalized oppression works in combination with economic and social contexts and serves to restrict options that people generally perceive as open to them and legitimate for them. ⁽⁵⁾

Ann Elwan, in her World Bank-sponsored study on poverty and disability, estimates that people with disabilities may account for one out of every five of the world's poorest people. She finds the following:

Disabled people have lower education and income levels than the rest of the population. They are more likely to have incomes below poverty level than the non-disabled population, and they are less likely to have savings and other assets. ...The links between poverty and disability go two ways--not only does disability add to the risk of poverty, but conditions of poverty add to the risk of disability. ⁽⁶⁾

Because discrimination, lack of access to the built environment, and other factors frequently exclude people with disabilities from the workforce, they are unable to contribute to their own financial security, and that puts them in danger of becoming impoverished, if they do not live in poverty already. In all nations, people with disabilities earn less from paid employment than their counterparts, but even in countries with legal protections against employment discrimination, most people with disabilities are unemployed. In the United States, workplace harassment of people with disabilities is commonplace, and biases can be particularly severe with regard to people with "hidden disabilities," such as mental disabilities. ⁽⁷⁾ Pervasive ignorance among employers frequently leads to people with disabilities being rejected for employment because potential employers mistakenly assume these potential employees will not be able to fulfill job requirements or reasonable accommodations will be extensive and costly. ⁽⁸⁾ Because people who are unemployed cannot contribute tax revenues to the government, this situation reinforces the stereotype of people with disabilities as a burden on society. Consequently, programs to support people with disabilities, where they exist at all, are commonly based on the "charity" model of assistance over more empowering and positive models that can help to break, rather than reinforce, the cycle of poverty and dependence. ⁽⁹⁾

A person with a disability who is also member of another disadvantaged group will frequently find himself/herself subject to discrimination on multiple levels. For example, studies show that people with disabilities are less likely than others to receive education and often leave school with fewer skills and qualifications. ⁽¹⁰⁾ For disabled women and girls, however, as research undertaken by the Economic and Social Commission for Asia and the Pacific (ESCAP) indicates, gender discrimination presents additional obstacles to educational opportunities. ⁽¹¹⁾ The problem of compound discrimination for people with disabilities can be found in every country of the world regardless of its economic or political situation. Lift Every Voice, a report by the National Council on Disability on issues that affect people with disabilities from diverse racial and cultural backgrounds in the United States, reported that "people with disabilities from diverse cultural communities not only experience poverty and disability at a disproportionately higher rate, they also face language, cultural and attitudinal barriers that significantly impede their access to resources and accommodations." ⁽¹²⁾ In developing nations, the problem is rooted as much in the actions of developed nations as in local conditions and attitudes. Despite the fact that 51 percent of people with disabilities are women, "international development programmes rarely address the needs of disabled women or include them in community development ventures." ⁽¹³⁾ A report by Mobility International USA on gender and disability found that "most [development] organizations do not collect data showing the extent to which people with disabilities, in particular women and girls with disabilities, participate in the development assistance process." ⁽¹⁴⁾ The lack of interest in these issues by leading institutions funded and led by developed nations sets a poor example for countries that rely on the aid of developed nations, especially emerging democracies and societies struggling to rebuild their social structure in a post-conflict setting.

The status of people with disabilities is marked not only by exclusion and lack of equal access to resources--in other words, the absence of attention to their rights--but also by deliberate and active measures taken against them. Some such measures are legally supported elements of a strategy to "deal" with disability, such as involuntary institutionalization. People with disabilities are subject to a variety of human rights abuses, including forced abortion and sterilization ⁽¹⁵⁾ and psychiatric drugging. ⁽¹⁶⁾ Other actions are tolerated or overlooked despite being illegal, such as physical and mental abuse and gross neglect. Violence against people with mental disabilities in institutions insulated from public scrutiny often goes unaddressed. ⁽¹⁷⁾ For example, in Kosovo, Mental Disability Rights International (MDRI) found that despite extensive international funding for civil society and human rights, no program has been established to protect the rights of women or other vulnerable groups from sexual and physical abuse in institutions. ⁽¹⁸⁾ Other reports issued by MDRI describe the "inhuman and degrading conditions" of people in institutions in Uruguay, Hungary, Russia, and Mexico. ⁽¹⁹⁾ In Mexico, MDRI cites the "unhygienic conditions of detention"; the excessive use of "physical restraints"; the lack of adequate food, water, clothing, and medical care; the "lack of privacy and dignity" for patients; and even instances of patients freezing to death. ⁽²⁰⁾ To be sure, such conditions are by no means limited to the countries cited in these referenced reports.

An improvement in the human rights condition of people with mental, physical, and sensory disabilities is urgently needed in all nations, not only developing nations or nations devastated by years of conflict. Even in the most technologically advanced nations, people with disabilities confront the most basic violations of their rights in attempting to exercise their right to vote. In the 2000 elections in the United States, in at least 18 states, disabled voters found inaccessible polling places, confusing ballots, and a lack of privacy and independence in voting. ⁽²¹⁾ For instance, at a polling station in New York, disabled voters found access ramps "locked and unavailable," ⁽²²⁾ while in California, a lack of portable voting booths forced one disabled voter to have his personal care assistant vote on his behalf, thus depriving him of his right to independence and privacy. ⁽²³⁾ In other cases, inadequate training of polling staff led to violations of disabled voters' rights. Some staff denied the existence of voter accessibility laws (saying instead that disabled voters could use the absentee voting process), ⁽²⁴⁾ and others made no attempt to preserve the privacy of voters they assisted. ⁽²⁵⁾ Whereas an increasing number of nations now promise equality of opportunity for people with disabilities, very few, if any, come close to delivering it. This failure severely restricts the ability of some 500 million people around the world to contribute fully to the civil, political, economic, social, and cultural lives of their communities.

Legal mechanisms, both national and international, to protect and promote the rights of people with disabilities, are generally inadequate. Worldwide, people with disabilities continue to receive disparate treatment at the hands of the law. Of 189 UN Member States, only some 40 have any form of anti-discrimination law for persons with disabilities, ⁽²⁶⁾ and in those that do, much work remains to be done to implement and enforce the provisions on the books. ⁽²⁷⁾ Where national laws and policies have sought to address the concerns of people with disabilities, all too often the language and approaches adopted have served to further reinforce stereotypical perceptions of people with disabilities as passive, sick, dependent, and in need of medical cures and charity.

The human rights condition of people with disabilities has real application and relevance to all citizens, not only the international community, scholars, or those already familiar with international law and policy. The affirmation and implementation of human rights principles for all minority groups form the foundation of a just society, both here in the United States and in countries around the world. In fact, these principles are vital to the peace and prosperity of every society. It has become increasingly apparent that human rights issues of concern to people with disabilities play a critical part in the quest to achieve international peace and security and the promotion of democracy. Enhancing the status of disenfranchised minorities, of which people with disabilities constitute a large group, will contribute to the realization of the three pillars of Secretary General Kofi Annan's vision for the UN in the next century, namely, (i) eradicating poverty; (ii) preventing deadly conflict; and (iii) promoting democracy. ⁽²⁸⁾ These three concepts are also at the core of US foreign policy. Put simply, the eradication of poverty will not be achieved absent a concerted effort to reach all vulnerable groups; the prevention of deadly conflict cannot happen without the full participation of war-wounded citizens and people with disabilities; and the promotion of democracy will be incomplete without the full inclusion of all human beings with rights, irrespective of their minority status.

Unfortunately, interested governments and the collective voice of people with disabilities have had very limited success in placing disability rights onto the international human rights agenda. This contrasts with other specified groups, such as racial or ethnic minorities, women, children, and indigenous peoples, who have succeeded in so doing, thereby drawing attention and responses to human rights abuses specific to them at the national and international levels. Clearly, the absence of any international treaty specifically addressing the rights of persons with disabilities has contributed to the invisibility of disability issues and disability rights on the agenda of international institutions and programs. As a result of that absence, efforts to leverage resources and draw attention to the rights of people with disabilities have been largely
ineffective.⁽²⁹⁾

Despite their marginalized and disempowered status, people with disabilities and their grassroots organizations are engaging in the struggle for their inclusion in society and participation in decision-making arenas. People with disabilities in both the developed and developing world are themselves advocating for equal access to employment, health care, transport, housing, education, and culture and are reporting long untold stories of violence and abuse. On the international level, the current effort within the United Nations to draft an international convention on the rights of people with disabilities has the potential to focus attention on the lives of people with disabilities across the globe. Moreover, that effort can reveal the scope of a widespread human rights crisis and the valuable contributions the disability community has to offer both the convention process and global society. The treaty development process and the resulting legal standards can bring to the forefront of international policy a long-neglected area of human rights practice.

B. Purpose of the Paper

The purpose of this paper is to analyze how the support and participation of American policy makers and organizations representing people with disabilities in the drafting of an international human rights treaty specifically addressing disability rights will serve disabled people and their allies around the globe. This paper considers the important role that the United States and American disability organizations have to play in advancing the human rights of people with disabilities through participation in any forthcoming international human rights treaty process. At the same time, issues of concern regarding the challenges associated with any international human rights treaty process are recognized and addressed. The paper concludes with some suggested next steps and recommendations for consideration as the effort within the United Nations to draft a treaty on the rights of people with disabilities gets underway.

A. Disability Law in the United States

Enacted in 1990, the Americans with Disabilities Act (ADA) was the result of broad-based advocacy efforts by members of the disability community and supporting members of Congress. It constitutes the federalization of the legal rights of people with disabilities, which had previously been included (to the extent that they were addressed at all) in state legislation and limited federal legislation. ⁽³⁰⁾ Whereas previous legislation tended to focus on institutions that received government funding, the ADA extended the legal coverage to private entities, thus greatly expanding the legal protection of people with disabilities, as well as opening up many more opportunities for them in such environments as the workplace. The ADA is particularly notable for its inclusion of certain innovative concepts, such as the principle of "reasonable accommodation," which requires an employer to accommodate a qualified employee, unless doing so would cause significant difficulty or expense. ⁽³¹⁾

In his launching of the New Freedom Initiative in February 2001, President George W. Bush acknowledged his commitment to "tearing down the remaining barriers to equality that face Americans with disabilities today" and recognized that "significant challenges remain for Americans with disabilities in realizing the dream of equal access to full participation in American society" to create "a nation where no one is dismissed or forgotten." ⁽³²⁾ Thus, despite the successful passage of the ADA, its incorporation into the US legal system as well as public consciousness has not been without problems. The results of a 1998 study reveal that only 54 percent of American adults with disabilities have heard of the ADA. Notwithstanding the social and legal benefits achieved as a result of the work of disability advocates in the United States, the need to continue efforts to raise awareness and educate is tremendous. ⁽³³⁾

Even with the passage of this path-breaking legislation, lawsuits brought under the ADA have been difficult to win. Employers prevailed in 93 percent of cases reaching the trial court level from 1992 to1998 and 84 percent of the time on appeal. ⁽³⁴⁾ According to the Equal Employment Opportunity Commission (EEOC), disability-based harassment ranks among the fourth most frequent cause for claims behind sexual harassment, racial harassment, and harassment claims based on national origin. ⁽³⁵⁾ Thus, while the ADA has been a crucial catalyst for social change, much remains to be done, according to Richard Scotch:

[I]n the first decade of implementation ADA appears to have fallen short of its optimistic goal to change fundamentally the lives of most Americans with disabilities. In the aggregate, people with disabilities are still as disproportionately underemployed as before ADA's enactment, and their incomes are still significantly below those of people without disabilities. While survey data implies that most Americans are supportive of ADA's goal of inclusion and non-discrimination, ample anecdotal evidence suggests that physical barriers, individual attitudes, and restrictive institutional processes continue to constrain most Americans with disabilities. ⁽³⁶⁾

In other words, there are active forms of discrimination, as well as "neutral barriers," that inhibit disabled people's enjoyment of their human rights.

The process of developing, implementing, and monitoring an international convention on the human rights of people with disabilities will serve to engage a wide variety of actors in analyzing and identifying the shortcomings of national law models. Both the development of a treaty and its implementation provide opportunities for stakeholders to assess valuable domestic models of disability law and policy, including, but not limited to, the ADA. As a result of their national experience, people with disabilities and disability advocates in the United States have much to contribute to the international treaty-making process and can help their counterparts in other countries to achieve their national vision, which in many cases is inspired by the promise of the ADA. The failure of the American disability community to engage in this process will come at a heavy cost: not only will others miss the benefit of their experience, but also the community will be left out of a process that has great potential to support advocacy efforts related to the ADA. In sum, engagement in the process stands to support and invigorate US domestic initiatives that will strengthen ADA-focused advocacy. The American disability community ignores the international human rights process at its peril.

B. Human Rights for People with Disabilities and the International Human Rights System

i. The Emergence of International Human Rights Law

The Universal Declaration of Human Rights (UDHR), adopted by the United Nations General Assembly in 1948, signaled the emergence of modern international human rights law. ⁽³⁷⁾ In its expression of general human rights principles in the area of civil, political, economic, social, and cultural rights, the UDHR emphasizes its applicability to all people, underscoring that "[a]ll human beings are born free and equal in dignity and rights, ⁽³⁸⁾ ... [a]ll are equal before the law, and [all] are entitled without any discrimination to equal protection of the law." ⁽³⁹⁾ Although the UDHR is a declaration and not an international treaty, it is now widely recognized as part of customary international law and therefore possesses legal force.

The adoption of the UDHR was followed by the drafting of two international treaties that, together with the UDHR, make up the International Bill of Human Rights and the core of modern international human rights law. In 1996, the UN General Assembly opened for signature the International Covenant on Civil and Political Rights (ICCPR) ⁽⁴⁰⁾ and the International Covenant on Economic, Social and Cultural Rights (ICESCR). ⁽⁴¹⁾ These treaties, ratified as of February 2002 by 148 and 145 Member States respectively, legally oblige States Parties to implement their provisions subject to any qualifying reservations. While the International Bill of Rights provides protections applicable to all people, no explicit mention is made of discrimination on the grounds of disability in these instruments. ⁽⁴²⁾ As Professor Theresia Degener has emphasized, where disability is addressed in the International Bill of Rights, "it is only in connection with social security and preventive health policy," ⁽⁴³⁾ and not as a comprehensive human rights issue.

Thus, all human beings, regardless of what physical, sensory, or mental abilities they may have, are entitled to the same human rights as a matter of international law, yet people with disabilities have remained largely invisible in human rights law and practice and violations and egregious abuses against them all too often go unnoticed, unreported, and, consequently, unaddressed. Although the International Bill of Rights and other international human rights instruments proclaim that all human beings are born free and equal in dignity and rights, millions of people with disabilities face daily assaults on their freedoms and suffer indignities that violate their most basic human rights.

ii. Addressing the Human Rights of Specific Populations

Early developments in international human rights law served to bolster the concept that human rights standards and the violation of those rights by a State against its own nationals are indeed a matter of international concern, thereby discrediting claims to the contrary. It was soon discovered, however, that additional legal measures were required in order to address human rights abuses experienced throughout the world by individuals belonging to particular social, ethnic, religious, and other groups. Beginning in the mid-1960s, the United Nations began to recognize the vulnerability of certain populations to human rights abuses that were not addressed with any degree of specificity in existing international human rights law. Well-coordinated international campaigns led to the adoption of a number of specialized human rights instruments to address gaps in the law and establish permanent mechanisms for more effective monitoring of violations. These instruments include, among others, the UN Convention on the Elimination of All Forms of Racial Discrimination, ⁽⁴⁴⁾ the UN Convention on the Elimination of All Forms of Discrimination Against Women, ⁽⁴⁵⁾ the UN Convention on the Rights of the Child, ⁽⁴⁶⁾ the International Labour Organization Convention Concerning Indigenous and Tribal Peoples in Independent Countries, ⁽⁴⁷⁾ and the International Convention on the Protection of the Rights of All Migrant Workers. ⁽⁴⁸⁾

These treaties create legal protections that address in concrete terms the social, political, and cultural circumstances that impact the human rights conditions of these populations. Most significantly, they frequently provide for the establishment of permanent treaty-monitoring bodies composed of recognized experts in the field of human rights and endowed with the authority to scrutinize and promote compliance with treaty provisions. The process of drafting these focused conventions has served to raise awareness and build capacity among both governments and non-governmental organizations concerned with the human rights issues pertaining to these various populations. Once the treaties have entered into force, they provide a forum for the consideration of human rights issues insofar as they pertain to the treaty and serve as a focal point for the human rights initiatives of governments and non-governmental organizations, spurring developments in national laws and highlighting best and worst practices.

iii. International Human Rights Law for People with Disabilities

The evolution of international human rights law as it applies to people with disabilities has proceeded along an entirely separate and, unfortunately, less progressive course. During the 1970s, the Declaration on the Rights of Mentally Retarded Persons ⁽⁴⁹⁾ and the Declaration on the Rights of Disabled Persons ⁽⁵⁰⁾ were the first international human rights instruments to embody human rights principles relating specifically to people with disabilities. These were significant steps in terms of raising awareness about the human rights of people with disabilities. They came under heavy criticism by the disability community, however, for their expression of outmoded medical and charity models of disability that serve to reinforce paternalistic attitudes about people with disabilities. Thus, for example, the 1971 Declaration on the Rights of Mentally Retarded Persons was criticized for qualifying the scope of rights for people with intellectual disabilities both in providing that "the mentally retarded person has, to the maximum degree of feasibility, the same rights as other human beings" ⁽⁵¹⁾ and in terms of its goal for societies, which is to promote "their integration as far as possible in normal life." ⁽⁵²⁾

Although further progress was made in the development of international standards relating to disability, these efforts did not culminate in legally binding measures. These efforts included the United Nations Decade of Disabled Persons (1982-1993), during which the World Programme of Action Concerning Disabled Persons ⁽⁵³⁾ and two new international human rights instruments pertaining to disability were adopted by the UN General Assembly. In 1993, the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities were adopted as a blueprint for policy-making and provided a basis for technical and economic cooperation among States. The UN Standard Rules establish a monitoring mechanism through the appointment of a Special Rapporteur who reports to the Commission on Social Development. ⁽⁵⁴⁾ The Principles for the Protection of Persons with Mental Illnesses and the Improvement of Mental Health Care (MI Principles) were adopted in 1991 ⁽⁵⁵⁾ and set forth principles that can serve as a common standard for the evaluation of the implementation of human rights practices in national mental health systems. ⁽⁵⁶⁾ These documents add content to existing human rights provisions housed in the general instruments. Nonetheless, the documents are not housed in a treaty, nor are they widely regarded as having attained the status of customary international law. ⁽⁵⁷⁾ Most significantly, the UN Standard Rules and the MI Principles do not establish permanent bodies to monitor compliance with their provisions. Thus, in spite of the progress made, governments and non-governmental organizations are left without any permanent and adequately resourced human rights body devoted to monitoring human rights violations against people with disabilities and without effective means to promote further developments in both national and international law.

The prevailing opinion of professionals working in the fields of disability and international human rights law is that the current international human rights framework is, in the context of disability, deficient in two fundamental respects. First, without specific attention and language devoted to the most common practices leading to the violation of human rights for people with disabilities in any single international human rights treaty, many governments remain unaware of their legal obligations. ⁽⁵⁸⁾ Consequently, the international human rights framework rarely is used to protect people with disabilities. Second, as a recent study demonstrates with persuasive force, the existing human rights treaty-monitoring bodies established by a variety of international human rights treaties only marginally address, if at all, the routine human rights violations to which people with disabilities are subjected. ⁽⁵⁹⁾A notable lack of jurisprudence on the rights of people with disabilities exists as a matter of international human rights law. ⁽⁶⁰⁾

An additional factor that reinforces the failure of existing human rights mechanisms to address the human rights of people with disabilities is the lack of capacity among international human rights organizations and the disability community to use the human rights machinery in advocacy for disability rights. Organizations devoted to the protection of human rights have generally failed to focus on abuses against people with disabilities or to develop the capacity to investigate and report on disability-based human rights violations. In some instances, well-meaning humanitarian assistance organizations have unwittingly perpetuated human rights abuses against people with disabilities through "charity" programs that serve to perpetuate discriminatory programs that ultimately disempower people with disabilities. ⁽⁶¹⁾

Against this background, new proposals for the adoption of an international treaty addressing the rights of people with disabilities are currently underway. The effort is not to secure special privileges or to reinforce a segregated treatment of people with disabilities through the establishment of a separate treaty. Rather, the aim is to secure unequivocal protection for the fundamental human rights and freedoms of people with disabilities and to acknowledge their legitimate membership in the international human rights system.

iv. Proposals for an International Human Rights Treaty for People with Disabilities

Support for an international human rights treaty for people with disabilities is evidenced by the numerous calls for such an instrument by actors within the global disability community. During March 2000, participants ⁽⁶²⁾ at the World NGO Summit on Disability convened in Beijing to discuss a possible treaty delineating the human rights of people with disabilities. The declaration that issued from that meeting urged "all heads of state and government, public administrators, local authorities, members of the United Nations system, people with disabilities, civic organizations that participate in the development process, and socially responsible private sector organizations, to immediately initiate the process for an international convention." ⁽⁶³⁾

In calling for such a treaty, the participants highlighted the following as areas of specific concern to be addressed by the treaty:

(a) Improvement of the overall quality of life of people with diverse disabilities and their upliftment from deprivation, hardship, and poverty.

(b) Education, training, remunerative work, and participation in decision-making processes at all levels.

(c) Elimination of discriminatory attitudes and practices, as well as information, legal, and infrastructural barriers.

(d) Increased allocations of resources to ensure the equal participation of people with disabilities. ⁽⁶⁴⁾

The momentum for a treaty was continued when, on November 28, 2001, the UN General Assembly adopted by consensus a resolution initiated by Mexico calling for the establishment of an Ad Hoc Committee mandated to elaborate "a comprehensive and integral international convention to protect and promote the rights and dignity of persons with disabilities, based on the holistic approach in the work done in the field of social development, human rights and non-discrimination." ⁽⁶⁵⁾ This step builds on the efforts of other countries in recent years, most notably Ireland, to develop support within the United Nations for a treaty on the rights of people with disabilities. ⁽⁶⁶⁾

The ensuing process presents both challenges and opportunities that can lead to the adoption of a comprehensive convention on the rights of people with disabilities in a fully participatory process that reflects latest developments in international law and policy and establishes effective machinery for monitoring compliance with human rights obligations. The failure of the American disability community to engage in the development of international human rights law concerning people with disabilities will jeopardize the success of the current treaty-initiative and compromise future implementation efforts. Members of the global disability community have much to gain from the active participation of their American counterparts and, in turn, Americans stand to benefit from lending their voice to the convention dialogue.

A. A Paradigm Shift: Transforming "Needs" into Rights

Human rights are not the exclusive property of any one group to be guarded and shared with only a privileged few. Human dignity belongs to all and is to be shared by all equally. As different groups have laid claim to their human rights over time, it is not the concept that has expanded, but rather, its applicability. The specific experience of marginalized groups must be incorporated into contemporary human rights interpretations of law for it to be empowering for all. People with disabilities, under this transformative view, will become more visible by articulating their human rights and communicating their lived experiences, so that existing human rights ideas and practices will fully take into account their lives. This entails a shift in thinking for people with disabilities from being passive recipients of charity to active claimants of their human rights.

i. Traditional vs. Contemporary Models of Disability

Traditional models of disability tend to start with the basic premise that the individual experiencing disability is the sole locus of any problems encountered by that person. ⁽⁶⁷⁾ Thus, the medical and personal tragedy models of disability have long been the lens through which the majority has viewed people with disabilities. These models have tended to reinforce notions that people with disabilities are "broken" in some way, victims of some tragic circumstance, and need medical or rehabilitation experts to repair or overcome their disability so that they may participate fully in society. Simi Linton observes the following:

[T]he medicalization of disability casts human variation as deviance from the norm, as pathological condition, as deficit, and, significantly, as an individual burden and personal tragedy. Society, in agreeing to assign medical meaning to disability, colludes to keep the issue within the purview of the medical establishment, to keep it a personal matter and "treat" the condition and the person with the condition rather than "treating" the social processes and policies that constrict disabled people's lives. ⁽⁶⁸⁾

These models ignore the fact that the problems reside not in the individual, but in the "social, attitudinal, architectural, medical, economic, and political environment" ⁽⁶⁹⁾ in which he or she lives. Furthermore, such models do not adequately define the important and appropriate role of the medical community, which is to promote human health for all people and to provide rehabilitation and support services in the best interests--and with the participation and informed consent--of the individual.

Largely because of activism of people with disabilities themselves, society has increasingly realized that disability is not an unusual or tragic situation that happens to a pitiable few. Scholarship in the field of disability studies has further supported the paradigm shift away from the medical model of disability wherein disabled people are sick and in need of a cure. Disability, under the new model, is seen as a social construction according to which society, not the person with a disability, requires adaptation. ⁽⁷⁰⁾ The push for a cultural shift in thinking about disability, promoted by American consumer-based disability organizations as well as international disability organizations, has led to the documentation of interesting examples of societal inclusion or adaptation in response to disability. Thus, in Nora Groce's leading study, Everyone Here Spoke Sign Language, ⁽⁷¹⁾ the community in Martha's Vineyard, Massachusetts, learned sign language to communicate with deaf members, thereby creating adaptation and accommodation. For indigenous communities, such as the Punan Bah of Sarawak and the Maasai of Kenya, people with disabilities are regarded as full participants in their societies and enjoy acceptance, as opposed to stigma and marginalization. ⁽⁷²⁾

The social model of disability captures the insight that full participation in society for people with disabilities will be achieved not by "fixing" people, but by breaking down the barriers that prevent realization of equal opportunity, full participation, and respect for difference. Under this view, empowerment requires the undoing of negative social constructions in such a way that people with disabilities see themselves as having the capacity and the right to participate fully in society and influence decision-making. In turn, others in society will likewise regard them as so endowed. Reframing disability in terms of social processes under the social model requires a broadened understanding of the sources of challenges faced by people with disabilities and a more balanced perception of how medicine, rehabilitation, and general health care fit into the equation, a perspective that many physicians and other health service providers do indeed understand. This reframing requires close scrutiny of all actors and processes, leading to a complete reorientation of the interaction between people with disabilities and society.

The insights provided by the social model of disability are now being applied to practical issues facing disabled people in terms of public policy, law, and community inclusion. As the UN Standard Rules have embraced the social model of disability, so too should an international convention on the rights of people with disabilities. A human rights framework that embraces a social model of disability has a greater capacity to identify and resolve those fundamental aspects of society that continue to oppress and exclude. ⁽⁷³⁾

ii. Rights-Based Approaches to Disability

The American civil rights movement involved a claiming of basic human rights that should be accorded to all people--the right to a decent education; the right to vote; the right to due process; the right to participate in the life of the community, whether through eating at a restaurant or attending a movie theater, without the threat of violence or harassment. The movement was not seeking "special rights," only basic rights grounded in the concepts of equality, non-discrimination, and human dignity.

The disability movement, both within the United States and internationally, is grounded in the same fundamental concepts and asks not for "special rights," but instead moves to embrace rights already enjoyed and to a large extent secured by non-disabled people. It emphasizes that "[w]e are all targets for inequitable and unjust treatment--disabled people often to a greater degree than others. Still, the struggle for people with disabilities is of the same nature as for all those who do not have the access to social goods that is their due." ⁽⁷⁴⁾ The current call for attention to the human rights of people with disabilities is a natural continuation of the civil rights tradition and has emerged to challenge existing notions of human rights that have frequently trivialized and ignored the lives of people with disabilities.

A human rights approach has the power to transform the needs of people with disabilities into rights they can claim. Grounded in basic concepts of justice and human dignity, human rights enable people to reconceive their basic needs as a matter of rights to claim, rather than charity to receive. Furthermore, rights-based concepts stand to inform our thinking beyond strictly legal applications. As an example, in the development context, Peter Coleridge has emphasized how traditional models of development have often characterized people living in poverty as passive victims and recipients of aid and charity. A rights-based awareness of disability, by contrast, compels significant shifts in thinking about disability and development. ⁽⁷⁵⁾ In reorienting the focus from needs to rights, people with disabilities may be recognized as active rights-bearing individuals who are participants in their own development and who should be consulted accordingly in development decision-making. ⁽⁷⁶⁾

The adoption of a human rights-based approach has already led to tangible results for many other disenfranchised groups. The American civil rights movement, the South African anti-apartheid movement, and the international women's rights movement have all framed their claims in rights-based language, securing significant success in national legal reform initiatives. ⁽⁷⁷⁾ During the last decade of apartheid in South Africa for example, human rights organizations initiated a human rights-based public education program in order to encourage the development of new legal strategies to challenge existing apartheid laws. Training in international human rights law was implemented for judges and lawyers. This training led to the invocation of international human rights treaty standards in the national legal system. ⁽⁷⁸⁾ Ultimately, both activists and legal scholars sought to challenge the apartheid legal order on the basis that it violated international human rights treaty standards. This new culture of human rights led to the incorporation of international human rights norms into legislation, the Interim Constitution of 1993, and the 1996 Constitution. Thus, the use of human rights norms in South Africa culminated in the comprehensive incorporation of international human rights standards into domestic law and policy.

The framework of human rights is not only useful in efforts to lobby for legislative and policy changes but also provides an important tool for grassroots groups to organize around disability issues. Fundamental human rights principles accorded to each and every person provide disabled people with a vocabulary for describing violations of those rights as well as for describing impediments to the full realization of those rights. By framing their concerns in human rights terms, disability advocates gain access to important decision-makers within the international human rights system, as well as to national and local officials. Thus, an international convention on the rights of people with disabilities would help give the global disability community a tool with which to recognize and advocate for their rights and would press for consistency in law and policies both locally and nationally. A major challenge for governments initiating the call for an international treaty on the rights of people with disabilities will be to secure the active participation of people with disabilities in all stages of treaty development and implementation. That requires, among other things, adequate resources for international and regional meetings and careful attention to a range of accessibility issues in connection to such gatherings.

B. Universality and International Human Rights Law

International human rights law demands respect for the full dignity of every human being. Part of the strength of an international treaty on the rights of people with disabilities will be derived from its universality. International standards make unequivocal the fact that the human rights of people with disabilities are not culturally bound and are in fact intrinsic to all nations (though culture is not irrelevant in the practice of human rights). The significance of this point should not be underestimated in an international environment in which law reform initiatives regarded as linked exclusively with American interests are viewed with distrust or even outright hostility. To be sure, future attempts to generate law reform, whether in the constitutional, fraud and corruption, criminal procedure, administrative law, or human rights spheres, need to be ever mindful of this and should therefore seek to work change through international channels. Moreover, international human rights treaties offer an appropriate vehicle for the wide dissemination and translation of international standards into local languages and are therefore of great practical significance to use as tools for national law and policy change.

The adoption of a treaty has much to commend it in terms of crafting a durable strategy for protecting the human rights of people with disabilities. The articulation of human rights principles for people with disabilities in a universally applicable treaty fully complements Irving Zola's persuasive call for the "universalization" of disability policy. Zola argued for "policies that recognize that the entire population is 'at risk' for the concomitants of chronic illness and disability," ⁽⁷⁹⁾ highlighting that "[t]he issue of disability for individuals ... is not whether but when, not so much which one, but how many and in what combination." ⁽⁸⁰⁾ In other words, the notion of universalism as it applies to disability policy calls for the broadest possible approach to inclusion and equality of opportunity, such that disability policies are understood to benefit all human beings across the vast range of human variation. This approach supports and is supported by the theory of universal design, which promotes changes in the built environment for the benefit of all. ⁽⁸¹⁾ An international human rights treaty, both in its development and application, has real potential to embody the goals of a universal disability policy.

In sum, the current initiative to draft an international convention on the rights of people with disabilities presents the opportunity to convey within the framework of international law that a core group of disability rights transcend any particular culture and society and are therefore of universal importance and concern. At the same time, a treaty provides the appropriate framework for incorporating principles of American disability law that have yet to find a secure place in the international legal system. Thus, although the principle of reasonable accommodation has been reflected in a General Comment of the International Covenant on Civil and Political Rights, it is not a principle that is explicitly referenced in any of the main international human rights documents. ⁽⁸²⁾ Little guidance exists in international law on the range of issues relating to accessibility that have a significant bearing on the enjoyment of so many fundamental human rights and freedoms. An international human rights treaty would be in keeping with legal and policy approaches that recognize the need to add specific content to well-established human rights principles that do not elaborate on their application to people with disabilities.

A. Transformative Participation in an International Human Rights Treaty-Making      Process

i. Raising Awareness about the Human Rights Condition of People with Disabilities

Whereas the provisions of an international human rights treaty for people with disabilities will serve to articulate specific rights and provide machinery for monitoring compliance with obligations, the transformative nature of the treaty-making process itself can generate an array of tangible benefits. These benefits include (i) raising the general public's awareness about the human rights of people with disabilities; (ii) highlighting abuses of those rights; (iii) further developing the knowledge-base of governmental and non-governmental participants; (iv) providing the impetus for extensive programmatic developments; (v) offering capacity-building opportunities for disability groups as a result of increased global focus on their issues; and (vi) providing data collection. ⁽⁸³⁾

The regional preparatory meetings and conferences typically associated with the treaty drafting process provide valuable opportunities for raising awareness of relevant issues among a variety of actors. ⁽⁸⁴⁾ Such fora serve to legitimize human rights issues and bring together unprecedented numbers of advocates, providing unique opportunities for information sharing, discussion of common concerns, and building relationships. The participation of disability organizations in the development of an international treaty on the human rights of people with disabilities will ensure their contribution to building the global knowledge base. ⁽⁸⁵⁾ The process will provide numerous avenues for NGOs to provide information about the nature and scope of human rights violations against people with disabilities, as well as to develop strategies for addressing these violations. NGOs have devised increasingly sophisticated and creative methods to use the preparatory and conference phases of the treaty-making process to further their goals. For instance, Disabled Peoples' International (DPI) Women's Programme initiated a campaign to voice their concerns regarding the increasing use of eugenic health policies and practices, such as forced abortion and sterilization, as a part of their participation in the Beijing process. A common strategy has also been the use of peoples' hearings and tribunals in which survivors of human rights abuses bear witness to their experiences. ⁽⁸⁶⁾ Additionally, conferences have provided the opportunity for NGOs to engage in media workshops in which participants learn to monitor the media and acquire media literacy skills. ⁽⁸⁷⁾ These and other activities serve as a potent catalyst for human rights advocacy at all levels and will provide unique and important occasions for disability organizations to raise awareness and build skills.

Through participation in the treaty-making process, engaged governments can be prompted to focus on disability issues, and the knowledge gained can be translated into action through law and policy reform, public-education programs, and other attitude-changing initiatives. A treaty process provides governments the chance to take stock and evaluate existing legal and policy approaches at the domestic level in addition to sharing with foreign counterparts their own domestic experience.

Similarly, intergovernmental organizations can be prompted by an international campaign to take action to gather and disseminate information on topics related to disability and to change their programming to better address disability issues. It is now standard within international organizations to provide some kind of institutional response in support of major international conferences on human rights issues. Thus, the World Bank expressed its institutional support for the 2001 World Conference against Racism by holding an event in the atrium of its main complex at headquarters, thereby contributing to the awareness-raising efforts about the impact of racism on poverty. Private actors, such as the media, can also be motivated in following the treaty-making process to portray the issues and affected populations in a manner that does not serve to buttress and reinforce inaccurate stereotypes. That is a matter of fundamental concern given the recognition by the disability community that the portrayal of people with disabilities in popular culture and the media supports myths of dependency and inability. ⁽⁸⁸⁾

An effective international human rights treaty will capitalize on the transformative benefits of the treaty-making process by implementing provisions that seek to maintain the momentum developed during that preparatory period. Past experience shows that treaties are an impetus for the development of human rights education materials. ⁽⁸⁹⁾ Education and awareness generated about disability and the human rights of people with disabilities will not and should not end with the adoption of an international treaty and may indeed be addressed in the text of an international convention on the human rights of people with disabilities. Thus, in international treaties relating to the protection of workers, education and training in relevant issue areas are addressed in treaty provisions. ⁽⁹⁰⁾ For example, the International Convention on the Elimination of All Forms of Racial Discrimination, a treaty to which the United States is a party, provides in Article 7 that States Parties "undertake to adopt immediate and effective measures, particularly in the fields of teaching, education, culture and information, with a view to combating prejudices which lead to racial discrimination and to promoting understanding, tolerance and friendship among nations and racial or ethnic groups, as well as to propagating the purposes and principles of the Charter of the United Nations, the Universal Declaration of Human Rights, the United Nations Declaration on the Elimination of All Forms of Racial Discrimination, and this Convention." ⁽⁹¹⁾ Similarly, many international environmental agreements now include provisions requiring States to improve public education and awareness on environmental matters and to give due publicity to matters of environmental importance. ⁽⁹²⁾ These are important precedents for those engaged in the drafting process for a treaty on the rights of people with disabilities given that education and awareness are core components of all disability advocacy.

Two main obstacles to raising awareness about the human rights condition of people with disabilities relates to the insufficient credible documentation on human rights abuses against people with disabilities and the dearth of statistical information and indicators about disability. The establishment of a strong treaty-monitoring body within the framework of a convention on the rights of people with disabilities mandated to review and act on State reports, individual and group complaints, and reports submitted by non-governmental organizations. A permanent, sufficiently resourced treaty-monitoring body will mark a new beginning in an important new area of human rights practice that requires strengthening.

In addition, a treaty provides the opportunity to set up a structure for more cost-effective and relevant data gathering and assessment of disability, which remains scarce, random, and inadequate for systematic analysis of disability issues. There is widespread consensus for the need to improve disability-related data collection and its use. ⁽⁹³⁾ The formulation of guidelines on data collection and assessment, or the establishment of a treaty-based body with related functions, can help strengthen the capacity of national and international efforts to collect and use data relating to disability in their decision-making and further facilitate the gathering of information. Such a function, though not familiar to human rights treaties, is well developed in other international law contexts.

Perhaps the best illustration in this context is provided in the international environmental law context, where reliable data collection and its use are critical to the success of environmental protection efforts. International environmental agreements have often established standing committees or scientific councils with the competence to provide recommendations on technical matters, necessary research, coordination of research, and evaluation of results and other specialized matters bearing on the implementation of the treaty. ⁽⁹⁴⁾ In addition, in some human rights contexts, the use of statistical indicators has served to inform governments and has served, in addition, to empower grassroots organizations to hold governments and other powerful actors accountable for the effects of their policies on human rights. ⁽⁹⁵⁾ Finally, given the tendency of statistical assessment in some instances to reinforce medical models of disability, the establishment of a data collection mechanism tied to a treaty that provides expressly for the participation of people with disabilities in data collection and assessment is compelling.

ii. Building Coalitions of People with Disabilities and their Allies Across Transnational      Civil Society and Capacity Building

International conferences where treaties or non-binding documents are adopted provide critical opportunities for networking and coalition-building among NGOs and other actors, quite apart from seeking to raise awareness and influence formal proceedings. An international treaty process provides opportunities to forge coalitions between disability organizations, across disability lines, and among non-disability-specific human rights and other governmental and non-governmental organizations. ⁽⁹⁶⁾ The process whereby the passage of the ADA was made possible serves as a salient example of how frequently disparate and disconnected groups may be brought together to work toward achieving a common goal. Joseph Shapiro explains the importance of these connections in No Pity: People with Disabilities Forging a New Civil Rights Movement:

There were groups representing all the major disabilities, including spinal cord injuries, deafness and visual handicaps, mental retardation and mental illness, as well as those for newer or less well-known conditions, such as AIDS, Tourette's Syndrome, and Chronic Fatigue Syndrome. To win passage of ADA disabled people had to forge historic alliances not only among different disability groups and politicians, but with the professionals who had cared for them so long. ⁽⁹⁷⁾

In the same way the ADA process was both educative and transformative, an international disability rights treaty process has the potential to build productive relationships between various actors. For the American disability community, the current effort is an opportunity to reinforce and strengthen their domestic advocacy in fundamental ways.

An international campaign for a treaty allows civil society groups to have a voice and work for social change over time. The participation of civil society in, for example, women's human rights, child rights, the use of landmines, or the rights of landmine survivors, is paradigmatic of how well-coordinated and informed groups can work in concert to strengthen international law and, therefore, make it relevant to people's lives. ⁽⁹⁸⁾ The experience of landmine survivors in the development of the Landmine Ban Treaty ⁽⁹⁹⁾ is a striking example of successful networking and effective coalition-building. ⁽¹⁰⁰⁾ Early drafts of the treaty were silent on the issue of assistance for those whose lives had been affected by the presence of landmines in their own communities. The well-orchestrated efforts of survivors themselves led to the inclusion of a provision in the treaty that requires States Parties to address assistance for survivors. ⁽¹⁰¹⁾ Absent the participation of landmine survivors in the treaty process, the resulting agreement would have remained focused on the weapons ban alone. The active participation of the disability community--and reliance on their experience and expertise by treaty drafters--in the adoption of a treaty on the rights of people with disabilities and, once it has entered into force, its implementation, will create important channels and focus for the linking of disability advocacy efforts at the local, national, and international levels.

There are interesting models from which the disability community may draw inspiration in seeking to build coalitions to participate in the drafting of a treaty and to oversee its long-term implementation. ⁽¹⁰²⁾ Most recently, particularly well-coordinated and successful international networks were established to steer civil society initiatives relating to child soldiers, climate change, and persistent organic pollutants. ⁽¹⁰³⁾ Experience in engaging with the international human rights mechanisms led organizations concerned with torture to form a coalition in which their commonality is recognized and varying approaches are seen to be complementary and mutually reinforcing. Thus, the Coalition of International Non-Governmental Organisations Against Torture (CINAT) brings together six groups, of which one is engaged in pursuing legal remedies for redress, ⁽¹⁰⁴⁾ two are engaged in individual work to provide direct assistance to torture survivors, ⁽¹⁰⁵⁾ one develops materials to aid the use of international mechanisms, ⁽¹⁰⁶⁾ and two are primarily concerned with campaigning and monitoring State violations. ⁽¹⁰⁷⁾

In addition to providing unique opportunities to ensure that the voices of people with disabilities and their allies are heard in the drafting of an international convention, the treaty process can fulfill an important capacity-building role for all those actors engaged in it. Until now, most disability NGOs have not developed the capacity to enable them fully to engage existing international human rights mechanisms. Nor have they taken full advantage of opportunities to contribute to monitoring, reporting, and other activities of human rights institutions that complement and enhance domestic advocacy. ⁽¹⁰⁸⁾ The treaty-making process constitutes a period of development for all actors (particularly NGOs) to expand their capabilities in a number of areas essential to their future work. The preparation period allows NGOs to learn human rights framework advocacy strategies and appreciate how the international human rights standards and mechanisms may be used to effect change at local, national, regional, and international levels. Equipped with this knowledge, organizations are then better prepared to participate in the following activities: (i) monitoring and surveillance of human rights problems; (ii) notification of emergency situations; (iii) human rights training and dissemination of information to their allies and the general public about human rights standards and their violations; (iv) reporting of human rights abuses to State and international bodies (treaty-monitoring and otherwise); (v) participation in international human rights litigation; and (vi) engaging in constructive dialogue with governments and international organizations. ⁽¹⁰⁹⁾ These activities both enhance and are enhanced by advocacy efforts already practiced by the disability community within the United States and elsewhere.

In sum, the process of developing an international human rights treaty for people with disabilities presents vital opportunities for stakeholders. These opportunities will be compromised, however, if the treaty-drafting process is unduly rushed. The doctrine adopted by the 1999 Interregional Seminar on International Standards on Disability in Hong Kong, supports the use of a fully participatory approach to developing a comprehensive treaty on the human rights of people with disabilities. ⁽¹¹⁰⁾ Haste in this important endeavor would not only compromise the form and content of the instrument itself but would also attenuate the capacity and coalition building afforded by the treaty-making process.

B. Promoting Institutional Shifts through the Adoption of an International Convention      on the Rights of People with Disabilities

People with disabilities are indeed entitled to the same human rights accorded to all human beings in the Universal Declaration of Human Rights, the International Covenants on Civil and Political Rights and Economic, Social and Cultural Rights, and other international instruments. ⁽¹¹¹⁾ The international institutions that stand to promote their rights and improve their lives, however, have not adequately integrated disability into their activities and programs. ⁽¹¹²⁾ That is so notwithstanding directives issued in such documents as the Vienna Declaration of the 1993 World Conference on Human Rights, which stresses that the rights of people with disabilities do indeed form part and parcel of modern international human rights law. ⁽¹¹³⁾ The persistent marginalization of disability as a human rights concern holds true for intergovernmental organizations within the United Nations system as well as for international non-governmental organizations, including human rights organizations. Experience in other human rights spheres demonstrates how effectively an international human rights convention, with adequate awareness raising and support, can prompt fundamental institutional shifts that integrate human rights concerns into policy guidelines and operations. The need for such institutional change in the context of disability is clear. The active participation of the disability community in the drafting and implementation of an international convention on the human rights of people with disabilities will help to make this change a reality.

i. The UN Human Rights System

Within the very international human rights system that is designed to promote and protect human rights for all, the rights of people with disabilities are relegated to the periphery where they receive inadequate attention and resources. For example, the UN Program on Disability is housed not in the UN human rights sphere proper, but in the social development sphere. Currently, fewer than five people are devoted to servicing the office, half the number allocated to the office at the height of the UN Decade on Disability. As a practical matter, disability is addressed by the Department for Economic and Social Affairs (DESA), Division for Social Policy and Development, ⁽¹¹⁴⁾ and the UN Program on Disability sits in New York. Thus, the main UN office concerned with the lives of people with disabilities is several thousand miles away from the core UN human rights machinery in Geneva, where the whole structure for servicing and monitoring human rights treaties is located and where human rights policy makers and core resource centers are based. No focal point on disability exists within the UN Human Rights Centre, and, in addition, within the Office of the High Commissioner for Human Rights, disability is only one among a number of thematic issues that is handled by one or two staff members on a regular basis, but only as part of a larger portfolio of work. ⁽¹¹⁵⁾

This institutional placement of disability outside the UN human rights framework has led to a marginalization, which is reflected in the work of UN treaty-monitoring bodies as well as other human rights mechanisms. The study shows that treaty-monitoring bodies, though mandated to take into account the extent to which specific treaty obligations are relevant for people with disabilities, have nonetheless failed to do so in any consistent and ongoing fashion. The situation is certainly not helped by the fact that disability organizations, unlike groups addressing the rights of women, racial minorities, torture survivors, children, and others, have not had the capacity-building experience of working within UN institutions through participation in the drafting and monitoring of a treaty specifically addressing their rights.

Past experience demonstrates that the centering of an issue within the UN human rights system draws attention to, and channels financial resources into, particular human rights initiatives. Absent such centering, governments, international organizations, and foundations have neglected to divert extensive resources to these initiatives. Leading up to and following major international conferences (Vienna and Beijing), major US foundation grants on projects relating to women's human rights and violence against women were increased from 11 totaling $241,000 in 1988 to 68 totaling $3,247,800 in 1993. ⁽¹¹⁶⁾ More fundamentally, the encapsulation of core human rights principles in one instrument will lessen the burden disability organizations face in having to selectively address their concerns within the disparate and decentralized treatment of disability in the current human rights system. That is not to say that instruments and mechanisms addressing disability should be ignored on the adoption of a new treaty, but that the treaty and its monitoring mechanisms will enhance the system so that disability receives a more focused and efficient treatment within the United Nations as a whole.

Furthermore, a specific treaty on international disability rights will establish a central institution for monitoring compliance with treaty obligations and channeling attention, expertise, funding, and time into compliance mechanisms. ⁽¹¹⁷⁾ The reporting mechanism created by an international treaty will establish an ongoing dialogue between governments, intergovernmental organizations, and civil society. Countries will be required to report on specific measures taken to comply with obligations, and disability organizations and human rights organizations will have the opportunity to present their own "shadow" or alternative reports that will expose weaknesses in State reporting or supplement reporting gaps. Human rights NGOs have created guidelines for alternative reporting to UN bodies that should inform disability advocacy strategies. ⁽¹¹⁸⁾ This State-reporting and parallel NGO shadow-reporting process is itself capacity building. Treaty-mandated meetings of the States Parties and regular meetings of specialized intergovernmental agencies within the UN human rights system will provide consistent and ongoing opportunities for disability organizations to draw attention to the issues they seek to influence and alter governments' perceptions of the costs and benefits associated with inaction.

ii. The UN Specialized Agencies and Development Institutions

The structural marginalization of disability within the United Nations is paralleled in its specialized agencies where disability tends to be treated as a "social protection" issue. A paradigmatic example of this institutional mischaracterization and frequent disregard of disability is provided by the International Fund for Agricultural Development (IFAD). ⁽¹¹⁹⁾ IFAD is the primary UN agency whose mission is to work with the poorest populations in rural areas of developing countries to eliminate hunger and poverty; enhance food security; raise productivity and incomes; and improve the quality of life through improved access to productive resources and empowerment. On its Web site is an informational page titled "Who are the Poor?" in which IFAD sets forth its categorization of the rural poor in its operational regions of the world and purports to provide an "overview of the location and types of poor people." Included are (i) displaced people; (ii) female-headed households; (iii) indigenous people; (iv) scheduled castes and tribes; (v) wage laborers and landless people; (vi) artisinal fishermen; (vii) pastoralists; (viii) small holder farmers; and (ix) rain-fed farmers. Notwithstanding its proclamation that "[k]nowing and understanding the poor is as important as understanding poverty," people with disabilities are excluded from IFAD's categorization of the rural poor. ⁽¹²⁰⁾ Significantly, gender concerns are a pivotal element of IFAD's poverty-alleviation strategy and agenda, signaling the impact of the international women's human rights movement in the operations of development institutions.

It should be noted that some international organizations have responded positively to disability awareness-raising initiatives. For example, in response to the Asian and Pacific Decade of Disabled Persons, ⁽¹²¹⁾ the Food and Agriculture Organization (FAO) introduced pilot programs in Thailand and Cambodia for disability-centered farming. ⁽¹²²⁾ Although such programs are encouraging, the lack of institutional commitment to disability inclusion, reflected on the policy level, means that these positive steps occur occasionally and sporadically.

Furthermore, even where disability does appear on the policy agenda consciousness of development organizations, implementation and practice may not reflect current thinking about disability and may serve to reinforce harmful stereotypes and inappropriate models of disability. Take, for example, the 1993 World Development Report of the World Bank that exposed a new effort to quantify the global burden of diseases and to develop a statistical measurement for the values of lives lived with a disability, all in support of an attempt to prioritize health needs. The measurement, Disability Adjusted Life Years (DALYs), focuses primarily on assessing the impact of disability in terms of years of burden and loss. Groce, Chamie, and Me characterize the effort as "dangerously out of step with current thinking about what constitutes a disability and what individuals with a disability have to contribute to society." ⁽¹²³⁾

At its core, DALYs defines the burden produced by a certain condition/disease as years lived with disability and years of life lost as a result of premature death. Disability is, under this narrow measurement, equated with ill-health. People with disabilities, therefore, represent a burden to their societies and enjoy a poor quality of life. In need of health care or rehabilitation, people with disabilities are a net drain on their societies. Additionally, Metts criticizes DALYs for failing to recognize that disability is also a function of social and environmental factors and for assuming that prevention of impairments is the exclusive strategy for addressing disability. ⁽¹²⁴⁾ Given this view of disability reflected in DALYs, it is not surprising to find development experts imagining that disability is a "special" issue, worthy of attention only when extra resources are available, after the development needs of others are met. Statistical measurements linked to disability do have a role to play in development policy, and people with disabilities should be included in devising such tools to ensure that concerns of the social model of disability are reflected in the resulting indicators.

If history is any indication, the introduction of an international treaty on the human rights of people with disabilities, and the concomitant highlighting of disability issues, should prompt organizational responses akin to those that followed international efforts relating to gender. UN agencies and organizations have intensified their focus on gender issues as a direct response to world conferences on women's human rights and the resulting media attention to human rights violations against women. Today, nearly every UN organization is involved in a process of "gender mainstreaming," according to which the organization either creates a gender focal point or integrates gender throughout all its programs. ⁽¹²⁵⁾ Whereas gender units and women's projects are still somewhat marginalized, understaffed, and underfunded, they are permanent features of both governmental and non-governm