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 

202-272-2004 Voice 

202-272-2074 TTY 

202-272-2022 Fax 

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


i 
ii

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. 

iii 
iv

Contents


I. Executive Summary ...................................................... 1


II.	 Introduction ............................................................ 5


A. The Global Human Rights Condition of People with Disabilities ............. 5


B. Purpose of the Paper .............................................. 13


III. Background ........................................................... 15


A. Disability Law in the United States ................................... 15


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


System ......................................................... 17


i. The Emergence of International Human Rights Law ..................... 17


ii. Addressing the Human Rights of Specific Populations .................... 19


iii. International Human Rights Law for People with Disabilities .............. 20


iv. 	 Proposals for an International Human Rights Treaty for People


with Disabilities .................................................. 24


IV.	 Addressing the Human Rights of People with Disabilities ....................... 27


A. A Paradigm Shift: Transforming “Needs” into Rights .................... 27


i. Traditional vs. Contemporary Models of Disability ...................... 27


ii. Rights-based Approaches to Disability ................................ 30


B. Universality and International Human Rights Law ....................... 32


V. An International Convention on the Rights of People with Disabilities ............. 35


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


Process ......................................................... 35


i.	 Raising Awareness about the Human Rights Condition of People


with Disabilities ................................................. 35


ii.	 Building Coalitions of People with Disabilities and their Allies Across


Transnational Civil Society and Capacity Building ....................... 40


B.	 Promoting Institutional Shifts through the Adoption of an International


Convention on the Rights of People with Disabilities ..................... 44


i. The UN Human Rights System ...................................... 45


ii. The UN Specialized Agencies and Development Institutions ............... 47


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


Organizations .................................................... 51


C. The Role of Legally Binding Obligations .............................. 52


i. Creating Legal Accountability ....................................... 52


ii. Reflecting Latest Developments in Disability Law and Policy .............. 54


iii. Prompting Shifts in National Laws and Policies ......................... 55


v 
VI.	 Adopting an International Convention: Issues and Concerns ..................... 57


A. Strengthening the Advocacy Capacity of People with Disabilities and 


their Allies ...................................................... 57


B. Ensuring Constructive US Participation ............................... 59


C. Combating Treaty Fatigue .......................................... 61


VII. Recommendations and Future Directions .................................... 63


A. Principles for Participation in the Process of Drafting an International 


Convention on the Rights of People with Disabilities ..................... 63


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


Policy Initiatives ................................................. 64


C. Raising Awareness and Building the Capacity of Actors to Address the Human


Rights of People with Disabilities .................................... 64


D. Principles to Support Full Participation in Society by People 


with Disabilities .................................................. 65


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


with Disabilities .................................................. 66


F. A Strong Treaty-Monitoring Mechanism .............................. 67


G. Future Directions in Coalition-Building ............................... 67


VIII. Conclusion ............................................................ 69


Appendix 

Glossary of International Law Terms (recommended pre-reading for those who do not


have a background in international law) ..................................... 71


Mission of the National Council on Disability ................................ 77


vi 
I. Executive Summary 

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 nondiscrimination, 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 

1 
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 

2 
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, 

3 
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. 

4 
II. Introduction 

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 renfrrta theoc

R
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 nondisabled population, and they are less likely to have savings and other assets. ...The 

3

 C. Kelly, M -H Kea ny & Ro bert L. Glue ckauf, Disability and Value Change: An Overview and Reanalysis of 

Acceptance of Loss Th eory, 139; and Ruth Torkelson L ynch & K enneth R. T homas, People with Disabilities as 

Victims: Changing an Ill-Advised Paradigm, 212, in THE PSYCHOLOGICAL & SOCIAL IMPACT OF DISABILITY (Robert 

P. Marinelli & Arther E. Dell Orto eds., Springer Publishing Company 1999). 

4 See generally NANCY MAIRS, WAIST-HIGH IN THE WORLD: A LIFE AMONG THE DISABLED (Beacon Press 1997); 

ROBERT MURPHY, THE BODY SILENT (Henry H olt 1987); C ONNIE PANZARINO, THE ME IN THE MIRROR (Seal Press 

1994); R UTH SIENKIEWICZ-MERCER & STEVEN B. KAPLAN, I RAISE MY EYES TO SAY YES (Whole Health Books 

1989); DONNA WILLIAMS, NOBODY, NOWHERE: THE EX TRAO RDINA RY A UTOB IOGRA PHY O F AN A UTISTIC (Avon 

Books 199 2); DONNA WILLIAMS, SOMEBODY SOMEWHERE: BREAKING FREE FROM THE WO RLD OF AUTISM (Times 

Books 1994 ); IRVING KENNETH ZOLA, MISSING PIECES: A CHRONICLE OF LIVING WITH A DISABILITY (Temple Univ. 

Press 1983). 

5

 See, e.g., H. JACKINS, THE RECLAIMING OF POWER (1983); D. HUTCHINSON & C. TENNYSON, TRANSITION TO 

ADULTHOOD (Further Education Unit, 1986) (discussing disability oppression in the context of childhood); G. 

Pheterson, Alliance Between Women: Overcom ing Internalized Oppression and Internalized Domination, in BRIDGES 

OF POWER: WOMEN ’S MULTICULTURAL ALLIANCES (A. Albrecht & R.M. Brew er, eds., New Society Publishers 

1990). See also INTERNATIONAL COUNCIL ON HUMAN RIGHTS POLICY, THE PERSISTENCE AND MUTATION OF RACISM 

20-21 (2000) (discussing the ways in which those oppressed by racism respond to their marginalization in society). 

6 
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 

6

 Ann Elw an, Poverty and Disability: A Surve y of Literature, WORLD BANK SOCIAL PROTECTION DISCUSSION PAPER 

NO. 9932, iv (Dec. 18, 1999). 

7

 DISABILITY RIGHTS ADVOCATES , DISABILITY WATCH: THE STATUS OF PEOPLE WITH DISABILITIES IN THE UNITED 

STATES 26 (1997). 

8 Id. It has been reported that “of the changes made by hundreds of businesses [in the United States] to create a more 

user-friendly environment for disabled people, it was found that well over half of the adjustments cost less than US 

$100 each.” DISABILITY RIGHTS ADVOCATES , STATUS OF THE HUMAN RIGHTS OF PEOPLE WITH DISABILIT IES IN 

CENTRAL EUROPE 5 (2001). 

9

 DISABILITY RIGHTS ADVOCATES , supra note 8, at 2. 

7 
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. 

10 Elwan, supra note 6, at 11. 

11 ESCA P, Hidden Sisters: Women and Girls with Disabilities in the Asian and Pacific Region, U.N. Doc. 

ST/ESCAP/1548 (1995), available at: <http://www.unescap.org/decade/wwd1.htm>. 

12 NATIONAL COUNCIL ON DISABILITY, LIFT EVERY VOICE: MODERNIZING DISABILITY POLICIES AND PROGRAMS TO 

SERVE A DIVERSE NATION 27 (Dec. 1, 1999). 

13 DISABILITY AWARENESS IN ACTION, DISABLED WOMEN 5 (1997). 

14 TINA SINGLETON ET AL., GENDER AND DISABILITY: A SURVEY OF INTERACTION MEMBER AGENCIES ix (Mobility 

International USA 2001). 

8 
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 

sterilization15 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 

15 According to the February 2000 US State Department Human Rights Report, in 1997, the Government of Japan 

acknowledged that some 16,500 women with disabilities were sterilized without their consent between 1949 and 

1992. The Government rejected calls by the disability community for compensation on the basis that the procedures 

were legal according to domestic law. Report available at: <http://www.state.gov>. 

16 See NATIONAL COUNCIL ON DISABILITY, FROM PRIVILEGES TO RIGHTS: PEOPLE LABELED WITH PSYCH IATRIC 

DISABILITIES SPEAK FOR THEMSELVES, 12 (Jan. 20, 2000). (Stating that nearly two-thirds of the states have passed 

involuntary outpatient commitment [IOC] laws that involve court-ordered treatment [almost always medication] for 

people who are not physica lly dangerous to themselves or others. A s a result, more people who find these 

medica tions debilitating are being forced to take them under court o rder.) 

17 As noted by Degener and Quinn, people with disabilities who are institutionalized are often unable to protect 

themselves against abuse or seek appropriate redress. They are often unaware of their rights, and even if they are 

aware, the y are freque ntly isolated from those in a position to a ssist them. T HERESIA DEGENER & GERARD QUINN ET 

ET AL., HUMAN RIGHTS ARE FOR ALL: A STUDY ON THE CURRENT USE AND FUTURE POTENTIAL OF THE UN HUMAN 

RIGHTS INSTRUMENTS IN THE CONTEXT OF DISABILITY §6.1 (draft Feb. 20 02). See also Arlene S. K anter, Abandoned 

but not Forgotten: The Illegal Confinement of Elderly People in State Psychiatric Institutions, 19 N.Y.U.REV. L. & 

SOC. CHANGE 273 (1991/92). 

18 MENTAL DISABILITY RIGHTS INTERNATIONAL, NOT ON THE AGENDA: HUMAN RIGHTS OF PEOPLE WITH MENTAL 

DISABILITIES IN KOSOVO (in press, Spring 2002). The gross mistreatment of women in institutions is widespread and 

includes the practice of forced sterilization and abortion, rampant sexual abuse by staff and patients, arbitrary denial 

of parental righ ts and an array of coercive tre atments. See also Eric Rose nthal, International H uman R ights 

Protections for Institutionalized People with Disabilities: An Agenda for International Action, in LET THE WORLD 

KNOW: A REPORT OF A SEMINAR ON HUMAN RIGHTS AND DISABILITY 68, 70 (Marcia Rioux, ed., Almåsa, Sweden, 

November 5-9, 2000). For a more detailed description of human rights abuses against women with disabilities, see 

MENTAL DISABILITY RIGHTS INTERNATIONAL, VIOLENCE, WOMEN AND MENTAL DISABILITY (1998) availa ble at: 

<http://www.MDRI.org>. 

9 
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 

19 See generally MENTAL DISABILITY RIGHTS INTERNATIONAL, HUMAN RIGHTS & MENTAL HEALTH: MEXICO (2000), 

CHILDRf9 0 .11214 0 TN IUMAN RHUMAN 

HMUMAN RHMRH, 
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 

23 Id. at 31. In this particular instance, a portable voting booth was available, but it had been configured for 

demonstration purposes only, so that “George Washington” and “John Adams” were listed as the presidential 

candidates. 

24 Id. at 51. 

25 Id. For instance, at a Bloomington polling station, polling staff required that two staff (one from each party) be 

present in the voting booth of one disabled voter requiring assistance, and no effort was made to preserve the voter’s 

privacy. 

26 DEGENER & QUINN, supra note 17, §4.6. 

27 Metts, supra note 1, at 29. 

11 
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 

28 Nobel lectu re given by the 2001 Nob el Peace P rize Laure ate, Kofi A . Annan, O slo, Decem ber 10, 2001, a vailable 

at <http://www.nobel.no/eng_lect_2001b.html>. 

29 Theresia D egener & Gerald Q uinn, A Survey of International, Com parative and Regional Law Reform , DREDF 

CONFERENCE PAPER, 10, fn. 37, available at <http://www.dredf.org>. 

12 
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 longneglected 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. 

13 
14

III. Background 

A. Disability Law in the United States 

Enacted in 1990, the Americans with Disabilities Act (ADA) was the result of broadbased 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 

30 See, e.g., the Rehabilitation Act, 29 U.S.C. § 791 et. seq. (1973), particularly § 504. 

31 “Reasonable accommodation” is defined in the ADA as the following: 

(9) REASONABL E ACCOM MODA TION.--The term "reasonable accommodation" may include­

(A) making existing facilities used by employees readily accessible to and usable by individ uals with 

disabilities; and 

(B) job restructuring , part-time or m odified wor k schedules, re assignme nt to a vacant position, 

acquisition or modification of equipment or devices, appropriate adjustment or modifications of 

examinations, training materials or policies, the provision of qualified readers or interpreters, and other 

similar accomm odations for individuals with disabilities. 

Americans with Disabilities Act, 42 U.S.C. § 12111(9) (1990). 

32 NEW FREEDOM INITIATIVE, FORWARD BY PRESIDENT GEORGE W. BUSH (February 2001). 

15 
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. 

33 DORIS ZAMES FLEISCHER & FREIDA ZAMES, THE DISABILITY RIGHTS MOVEMENT xvi (Temple U niversity Press 

2001). 

34 Reed A belson, Employers Increasingly Face Disability-Based Cases, N.Y.TIMES, Nov. 20, 2001, at C. 

35 Id. 

36 RICHARD K. SCOTCH, FROM GOOD WILL TO CIVIL RIGHTS: TRANSFORMING FEDERAL DISABILITY POLICY 178 

(Temple University Press, 2d ed., 2001). 

16 
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 

37 G.A. Res. 217A (III), U.N. Doc. A/810 at 71 (1948). 

38 Universal Declaration of Human Rights, Dec. 10, 1948, art. 1, G.A. Res. 217A (III), at 71, U.N. Doc A/810 

(1948). 

39 Id. 

17 
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 

40 G.A. Res. 2200A, 21 U.N. GA OR, Supp. No. 16, at 52, U.N. Doc. A/6316 (1966). 

41 G.A. Res. 2200A, 21 U.N. GA OR, Supp. No. 16, at 49, U.N. Doc. A/6316 (1966). 

42 The UDH R makes only one reference to disability. Article 25 provides that: “[E]veryone has the right to a 

standard of living adequate for the health and well-being of himself and his family, ... and the right to security in the 

event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond 

his control.” Specific mention of disability appears in some international human rights treaties, such as the following: 

Convention on the Rights of the Child, G.A. Res. 44/25, annex, 44 U.N. GAOR Supp. (No. 49) at 167, U.N. Doc. 

A/44/49 (19 89), entered into force 2 Sept. 1990, Articles 2(1) and 23; African [Banjul] Charter on Human and 

Peoples' Righ ts, adopted June 27, 1981, entered into force Oct. 21 1986, OAU Doc. CAB/LEG/67/3 rev. 5, 21 I.L.M. 

58 (1982), Article 18(4); and the Additional Protocol to the American Convention on Human R ights in the Area of 

Econom ic, Social and C ultural Rights, O .A.S. Tre aty Series N o. 69 (1988), sign ed Nove mber 17 , 1988, reprinted in 

Basic Documents Pertaining to Human Rights in the Inter-American System, OEA/Ser.L.V/II.82 doc.6 rev.1 at 67 

(1992), Article 18. More recently, the Inter-American human rights system adopted the Inter-American Convention 

on the Elimination of All Forms of Discrimination Against People with Disabilities, although it is limited in scope 

and suffered from inadequate participation by the disability community. Inter-American Convention on the 

Elimination of All Forms of Discrimination Against People with Disabilities, 7 June 1999, A-65, AG/RES. 1608 

(XXIX-0/99), available at <http://www.oas.org/juridico/english/ga-res99/eres1608.htm >. 

43 Theresia D egener, Disabled Persons and H uman Rights: The L egal Framew ork, in HUMAN RIGHTS AND DISABLED 

PERSONS: ESSAYS AND RELEVANT HUMAN RIGHTS INSTRUMENTS 94 (Theresia Degener & Yolan Koster-Dreese, 

eds., 1995). 

18 
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 

44 660 U.N .T.S. 195, reprinted in 5 I.L.M. 352 (1966). 

45 G.A. Re s. 34/180, 34 U .N. GA OR, Sup p. No. 46, U .N. Doc. A /34/46 at 193 (19 79), reprinted in 19 I.L.M. 33 

(1980). 

46 G.A. Re s. 44/25, 44 U.N . GAO R, Supp. N o. 49, U.N . Doc. A/4 4/49 at 167 (198 9), reprinted in 28 I.L.M. 1448 

(1989). 

19 
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 Persons49 and the Declaration on the 

Rights of Disabled Persons50 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 

47 I.L.O. 27 June 1989, Convention 169, I.L.O. Conventions 169, LXX11 I.L.O. Official Bull., Ser. A, No. 2 at 63 

(1989), entered into force 5 Sept. 1991. 

48 G.A. Re s. 45/158, reprinted in 30 I.L.M. 1517 (1991). 

49 Declaration on the Rights of Mentally Retarded Persons, G.A. Res. 2856 (XXVI), 26 U.N . GAOR Supp. (No. 29) 

at 93, U.N. Doc. A/8429 (1971). 

50 Declaration on the Rights of Disabled Persons, G.A. Res. 3447 (XXX), 30 U.N. GAOR Supp. (No. 34) at 88, U.N. 

Doc. A/10034 (1975). 

20 
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 Persons53 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 199155 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 

51 Declaratio n on the Rights o f Mentally Retarded P ersons, supra note 49. 

52 Id. 

53 G.A. Res. 37/52 (1982). Published by the Division of Economic and Social Information and the Centre for Social 

Development and Hum anitarian Affairs (Nov. 1983, DESI.S97). 

54 UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities, 85th Plenary Meeting, 20 

Dec. 1993, ¶ 1, Part IV, A/Res/48/96. The Special Rapporteur is mandated to consult with a panel of experts and 

presents States with questions concerning their implementation of the Rules. The Special Rapporteur also provides 

advisory services and engages in constructive dialogue with governments and disability organizations regarding the 

implementation of the R ules. 

55 G.A. Res. 119, U.N. GAO R, 46th Sess., Supp. No. 49, Annex at 188-192, U.N. Doc. A/46/49 (1991). 

56 For mor e on the M I Principles, see Eric Rose nthal & L eonard S. R ubenstein, International H uman R ights 

Advocac y under the ‘P rinciples for the P rotection of Pe rsons with M ental Illness,’ 16 INT’L J. L. & PSYCHIATRY 257 

21 
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.59A notable 

(1993). 

57 Customary international law is that law that “results from a general and consistent practice of states followed by 

them from a sense of lega l obligation.” Re statemen t of the Law (Third) § 102 (2). See also Article 38(1), I.C.J. 

Statute, which provides that the International Court of Justice “shall apply ... international custom, as evidence of a 

general practice accepted as law.” In other words, a practice can become binding international law if enough States 

participate in the practice and do so because they feel they are legally obliged to uphold the practice. Although not 

every State n eeds to uphold the practice for it to become law, “once a practice has acquired the sta tus of law, it is 

obligatory for all states that have not objected to it.” THOMAS BUERGENTHAL & HAROLD G. MAIER, PUBLIC 

INTERNATIONAL LAW 24 (West 2nd ed., 1990). 

58 Rosenthal, supra note 18, at 70-71. 

59 See DEGENER & QUINN, supra note 17. 

22 
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, wellmeaning 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 

60 General Comm ent No. 5 issued by the Committee on Economic, Social and Cultural Rights is a notable exception 

to the general rule that treaty-monitoring bodies have not given adequate attention to how disability relates to the 

specific protections provided in the relevant treaties. General Comment No. 5 does provide interpretative guidelines 

of the application of economic, social and cultural rights to people with disabilities. ICESCR Committee, General 

Comm ent 5, Persons with Disabilities, Eleventh Session, U.N. Doc. E/1995/22 (1994). For an excellent analysis of 

General Comment No. 5 and how disability organizations can use this work and the machinery of the Committee, see 

DEGENER & QUINN, supra note 17, §5.5. 

61 Mental Disability Rights International (MDRI) reports that in numerous countries it has observed how some of the 

most widely respected humanitarian relief programs, including programs funded by the US government, support and 

reinforce segregated models of social services for people with disabilities that would be contrary to public policy or 

civil rights law in the United States. Frequently, foreign assistance funding is used to rebuild old buildings and 

provide shelter , social support, an d medica l care exclusive ly within institutions— ignoring the eff orts of disability 

activists who are desperately seeking funding for programs that would support people in the community or keep them 

out of institutions. Eric Rosenthal, et. al., Implem enting the Righ t to Comm unity Integration fo r Children w ith 

Disabilities in Russia: A Human Rights Framework for International Action, 4 HEALTH & HUMAN RIGHTS 83, 89 

(1999). 

23 
 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, participants62 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 decisionmaking 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 

62 Participants included Disabled Peoples’ International, Inclusion International, Rehabilitation International, the 

World Blind Union, and the World Federation of the Deaf, as well as various national non-governmental 

organizations. 

63 Beijing Declaration on the Rights of People with Disabilities in the New Century, adopted on 12 March 2000 at the 

World NGO Summit on Disability, ¶ 7, available at <http://www.unescap.org/decade/beijdeclarfin.htm>. It should be 

noted that other d isability NGO s have issued sim ilar declarations , including calls for a n international hu man rights 

treaty for peop le with disabilities. Fo r instance, Rehabilitation International similarly called for a “UN Convention on 

the Rights of People with Disabilities” in its Charter for the Third Millenium, issued in September of 1999 and 

available at <http://www.rehab-international.org/charter.html>. 

64 Beijing Declaration supra note 63, ¶ 8. 

24 
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 nondiscrimination.”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. 

65 Comprehensive and Integral International Convention to Promote and Protect the Rights and Dignity of Persons 

with Disabilities, supra note 1. 

66 See Summ ary Repor t of a Conferen ce on the The me: “T owards a U nited Nations C onvention on the Hum an Rights 

of Persons w ith Disabilities,” organized by the Depar tment of F oreign Aff airs of Ireland, the National D isability 

Authority and the Irish Human Rights Commission, Royal Hospital Kilmainham, Dublin, Ireland, February 26, 2002, 

summarizing, among other things, the successive efforts by Ireland to support developing an international human 

rights treaty for pe ople with disab ilities. 

25 
26

IV. Addressing the Human Rights of People with Disabilities 

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 

67 For mor e on traditional m odels of disability, see Gareth W illiams, Theorizing D isability, in HANDBOOK OF 

DISABILITY STUDIES 123 (Gary L. Albrecht, Katherine D. Seelman & M ichael Bury eds., Sage Publications 2001). 

27 
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 

68 SIMI LINTON, CLAIMING DISABILITY: KNOWLEDGE AND IDENTITY 11 (New York University Press 1998). 

69 Irving K. Z ola, Toward the Necessary Universalizing of a Disability Policy, 67 MILBANK Q. 401, 406 (1989). 

70 For some of the leading work in the field of disability studies reflecting the social model of disability, see 

especially, M ICHAEL OLIVER, THE POLITICS OF DISABLEMENT (Macmillan and St. Martin’s Press 1990); LINTON, 

supra note 68; KENNY FRIES, ED., STARING BACK: THE DISABILITY EXPERIENCE FROM THE INSIDE OUT (Plume 1997); 

BENEDICTE INGSTAD, & SUSAN REYNOLDS WHYTE, EDS., DISABILITY AND CULTURE (Uni. Calif. 19 95); VICTOR 

FINKEL STEIN , ATTITUDES AND DISABLED PEOPLE (1980). 

71 NORA GROCE, EVERYONE HERE SPOKE SIGN LANGUAGE (Harvard Uni. Press 1985). 

28 
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 

72 Ida Nicolaise n, Persons and Nonpersons: Disability and Personhood among the Punan Bah of Central Borneo, 38; 

and Aud T alle, A Child is a Child: Disability and Equality among the Kenya Maasai, 56 in DISABILITY AND 

CULTURE (Benedicte Ingstad & Susan Reynolds White, eds., 1995). 

73 This notion is perhaps captured most succinctly by Bickenbach, who states the following: 

Disability advocates were thus able to argue tha t disability law and policy should not be a matter of 

charity, professional ne ed, comp ensation, or eco nomic ne cessity but instead must be gro unded in 

human rights. The social model of disability plays a vital role in making the human rights approach 

plausible. On the social model, a person’s inability to perform certain actions or to participate fully 

in social roles such as parent, student, or employee is, in part, a consequence of social attitudes and 

policies that create barrie rs. It makes little sense to say that one has a right, of any sort, not to have 

functional impairments because many impairments are outcomes of aging and other natural process 

that are unavoidable. It does makes [sic] sense to insist that one has a basic human right to be treated 

29 
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 

as an equal when one adds that social institutions and attitudes are responsible for creating disabling 

barriers that limit a perso n’s participation in life activities. The socia l model an d the hum an rights 

approach, in short, are mutually reinforcing. 

Jerome E. Bicken bach, Disability Hu man Rig hts, Law and Policy, in HANDBOOK OF DISABILITY STUDIES 565, 567 

(Albrecht et al., eds., Sage Publications 2001). 

74 HANDBOOK OF DISABILITY STUDIES 511 (Albrecht et al. eds., Sage Publications 2001). 

30 
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 antiapartheid 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 

75 For a comprehensive study that advocates a participatory approach to disability and development and is informed 

by a social model of disability see PETER COLERIDGE, DISABILITY, LIBERATION AND DEVELOPMENT (Oxfam 1993). 

76 The legal connotations of the social model of disability are straightforward and have been well expressed by 

Leandro Despouy: 

In a word, persons with disabilities, as persons like ourselves, have the right to live with us and as we 

do. From the legal point of view, there are three dimensions to this statement: (a) the recognition that 

persons with disabilities have specific rights; (b) respect for these and all their rights; and (c) the 

obligation to do what is ne cessary to ena ble persons w ith disabilities to enjoy the effective exercise 

of all their hum an rights on an e qual footing w ith others. 

Leandro Despouy, Special Rapporteur of the Sub-Commission on Prevention of Discrimination and Protection of 

Minorities, Human Rights and Disabled Persons ¶ 7 (1993). 

77 For a particularly good account of how the women’s human rights movement succeeded in focusing attention on 

violence against women through a human rights approach, see MARGARET E. KECK & KATHRYN SIKKINK, ACTIVISTS 

BEYOND BORDERS 165-198 (Cornell University Press 1998). 

78 One regular participant, a sitting judge, invoked both the International Covenant on Civil and Political Rights and 

the European Convention on Civil and Political Rights, to find in support of an indigent person who had been 

sentenced to a long prison term without the assista nce of coun sel. R. Keigh tley, International Human Rights Norms 

in a New South Africa, SOUTH AFRICAN J. ON HUM. RTS. 171 (1992). The case in question was S. v. Khanyile, 1988 

(3) SA 795 (N) at p. 801. 

31 
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 
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 

79 Zola, supra note 69, at 405. 

80 Irving K. Z ola, Disability Statistics: What We Count and What it Tells Us, 4 J. OF DISABILITY POL. STUD. 9, 18 

(1993). 

81 For discussions of the theory of universal design, see Ronald L. Mace, Graeme J. Hardie & Jaine P. Place, 

Accessible Environments: Toward Universal Design, in DESIGN INTERVENTION: TOWARD A MORE HUMAN 

ARCHITECTURE 155-75 (W.E. Preiser et al., eds., Van Nostrand Reinhold 1991); F. S. STORY, J. L. MUELLER & R. L. 

MACE , THE UNIVERSAL DESIGN FILE: DESIGNING FOR PEOPLE OF ALL AGES AND ABILITIES (North Ca rolina State 

University 19 98); Metts, supra note 1, at 38-40. 

33 
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 wellestablished human rights principles that do not elaborate on their application to people with 

disabilities. 

82 Eric Rose nthal & C larence Su ndram, The Role o f International H uman R ights in Dom estic Menta l Health 

Legislation, WHO REPORT [to be released in Spring 2002]. 

34 
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 

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 

83 At this point, it ma y be useful to brie fly describe the compon ents of the treaty-making p rocess. In esse nce, it 

involves the meeting of governments with a view to producing a legally binding document. The drafting of a human 

rights treaty under the auspices of the United N ations typically begins with a preparatory phase of regiona l meetings, 

which provides non-governmental organizations (NGOs) with a valuable opportunity to provide their input through 

either formal or informal channels. The preparatory phase is followed by a “conference of states parties,” during 

which time the text of the treaty is usually finalized. NGOs ma y typically participate in both preparatory meetings 

and the treaty conference either as members of government delegations or as non-voting observers, in accordance 

with applicable rules of procedure. Those governments who wish to be bound by the terms of the treaty usually sign 

and then ratify the document within a particular deadline. Those countries that join after the deadline do so through a 

process know n as “acces sion,” which serves the sam e purpose as s ignature and r atification. Som e treaties perm it 

countries to make “reservations,” “declarations,” and “understandings,” which will allow a country to exclude, 

modify, or clarify the legal effect of certain treaty provisions. 

35 
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 

84 World co nferences h ave been e xtremely useful for raising awarene ss about wo men’s righ ts issues. See, e.g., Julie 

Mertus & Pamela Goldberg , A Perspective on Women and International Human Rights After the Vienna 

Declaration: The Inside/Outside Construct, 26 N.Y.U.J. INT’L L. & POL. 201 (1994). Examples of awareness-raising 

initiatives can be found in International Women’s Tribune Centre, Claiming O ur Rights , 51 THE TRIBUNE—A 

WOMEN AND DEVELOPMENT Q. (March 1994); International Women’s Tribune Centre, Get Ready! Connecting 

Beijing to Action at Home, 52 THE TRIBUNE—A WOMEN AND DEVELOPMENT Q. (November 1994); International 

Women’s Tribune Centre, Get Set! NGO’s Worldwide Prepare for Beijing, 53 THE TRIBUNE—A WOMEN AND 

DEVELOPMENT Q. (July 1995). 

85 For a detailed a ccount of the p rocess of draf ting the UN Convention on the Rights of the Child and th e central role 

NGO s played in that pro cess and now play in imple menting the treaty, see Cy nthia Price C ohen, Drafting of the 

United Na tions Conven tion on the Righ ts of the Child: Ch allenges and A chievem ents, in UNDERSTANDING 

CHILDREN’S RIGHTS: COLLECTED PAPERS PRESENTED AT THE FIRST INTERNATIONAL INTERDISCIPLINARY COURSE ON 

CHILDREN’S RIGHTS (Eugeen Verhellen ed., University of Ghent, 1996). 

86 Witness, for example, the use of these methods at the 2001 World Conference Against Racism where m embers of 

racial mino rities, including grou ps of Afro-L atinos, Dalits, and Roma , who had n ever before had the oppor tunity to 

share their stories of abuse and discrimination were able to participate in public hearings in an international forum. 

Gay McDougal, International Human Rights Law Group, Panel Presentation, “World Conference Against Racism,” 

96th American Society of International Law Annual Meeting, Thursday, March 12, 2001. 

36 
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 

87 Further activities include photographic and video exhibitions, art and dram a programs, cam paigns and petitions, 

poster displays, electronic networking, and human rights education and community-organizing workshops, all of 

which serve to highlight the work of N GOs and crea te opportunities for sharing information and strategies. 

International Women’s Tribune Centre, Get Ready! Connecting Beijing to Action at Home, 52 THE TRIBUNE—A 

WOMEN AND DEVELOPMENT Q. 34-41 (November 1994); International Women’s Tribune Centre, Get Set! NGO’s 

Worldwide Prepare for Beijing, 53 THE TRIBUNE—A WOMEN AND DEVELOPMENT Q. 8-25 (July 1995). 

88 For a discussion of the portrayal of people with disabilities in popular culture and the media, see JOSEPH P. 

SHAPIRO, NO PITY: PEOPLE WITH DISABILITIES FORGING A NEW CIVIL RIGHTS MOVEMENT 32-39 (Random House, 

1994); OLIVER, supra note 70. 

37 
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 

89 Examples of hum an rights ma terials that have g rown out of specific hum an rights treaties inc lude: SAVE THE 

CHILDREN, CHILDREN’S RIGHTS: EQUAL RIGHTS? (2000); JULIE MERTUS, NANCY FLOWERS & MALLIKA DUTT, 

LOCAL ACTION GLOBAL CHANGE: LEARNING ABOUT THE HUMAN RIGHTS OF WOMEN AND GIRLS (UNIFEM, 1999); 

WOMEN LAW AND DEVELOPMENT INTERNATIONAL & HUMAN RIGHTS WATCH, WOMEN ’S HUMAN RIGHTS STEP-BYSTEP (1997). While there are certainly som e materials which highlight the hum an rights of people with disabilities, 

the scope of these materials has yet to achieve the same coverage as that of materials relating to other areas of human 

rights, such as those referenced above. Existin g materials in clude: NORWEGIAN ASSOCIATION FOR DEVELOPMENTAL 

DISABILITY, MY RIGHTS: A BOOKLET TO ACCOMPANY VIDEO ON THE EQUAL HUMAN RIGHTS OF PEOPLE WITH 

MENTAL DISABILITIES; SAVE THE CHILDREN SWEDEN , DISABLED CHILDREN’S RIGHTS—A PRACTICAL GUIDE (Save 

the Children, 2 001); RODRIGO JIMÉNEZ SANDOVAL, ELIMINADO BARRERAS CONSTRUYENDO OPORTUNIDADES 

(Disabled P eoples’ Intern ational, Justicia & Genero, & ILAN UD, 199 7); RODRIGO JIMÉNEZ SANDOVAL, 

CONOCIENDO DERECHOS Y CUMPLIENDO CON OBLIGATIONS (Disabled Peoples’ International & ILAN UD, 1999). 

90 See, e.g., Asbestos C onvention, I.L .O. 4 June 19 86, Conven tion 162, I.L.O . Convention s 162, eTj

03 onvention 
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 

92 See, e.g., Montrea l Protocol on S ubstances tha t Deplete the O zone Lay er, 16 Sept. 198 7, entered into force 1 Jan. 

1989, reprinted in U.K.T.S. 19 (1990); Cm. 977; 26 I.L.M. (1987) 1550; 17 E.P.L. (1987) 256, Article 9(2); Basel 

Convention , 22 Mar. 19 89, entered into force 5 May 19 92, reprinted in 28 I.L.M. 657, Article 10(4); United Nations 

Frame work Co nvention on C limate Ch ange, 9 M ay 1992, entered into force 24 Marc h 1994, reprinted in 31 I.L.M. 

849 (1992), Article 4(1)(i). 

93 Zola, supra note 80, at 9; Nora E llen Groce , Mary C hamie, & Angela M e, Measuring the Quality of Life: 

Rethinking the World Ba nk’s Disability Adjusted Life Years , 3 DISABILITY WORLD (June-July 2000). 

39 
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 

94 See, e.g., Article 9, U nited Nations Frame work Co nvention on C limate Ch ange, 9 M ay 1992, entered into force 24 

March 1994, reprinted in 31 I.L.M. 849 (1992); Article XV, Convention on the Conservation of Antarctic Marine 

Living Re sources, 20 M ay 1980, entered into force 7 April 1982, 19 I.L.M. 849 (1980); Article 14, Convention on 

the Conserv ation of Euro pean W ildlife and Na tural Habitats, 19 Septem ber 1979, entered into force 1 June 1982, 

U.K.T.S. 56 (1982); Article VIII, Convention on the Conservation of Migratory Species of Wild Animals, 23 June 

1979, entered into force 1 Novem ber 1983, reprinted in 19 I.L.M. 15 (1980). 

95 Sarah Za idi, Using Indicators to Guide Advocates, 2 HUM. RTS. DIALOGUE 17 (Spring/Summer 2001). 

96 In the context of the Landmine Ban Treaty, the “success of the landmine campaign can be attributed in broad 

measure to the strength and cohesiveness of the [International Campaign to Ban Landmines] ICBL, the [International 

Comm ittee of the Red Cross] ICR C, the core gr oup of States, the UN, and to the strategic coo rdination of their 

respective ef forts.” Don H ubert, The Landmine Ban: A Case Study in Humanitarian Advocacy, THE THOMAS J. 

WATSON JR. INSTITUTE FOR INTERNATIONAL STUDIES OCCASIONAL PAPER NO. 42, 59 (2000). 

40 
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 FatigueSyndrome. 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 Treaty99 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 

97 SHAPIRO, supra note 88, at 127. 

98 For more on the successful ingredients of international campaigns, see MICHAEL EDWARDS & JOHN GAVENTA , 

EDS., GLOBAL CITIZEN ACTION (2001); KECK & SIKKINK, supra note 77. 

99 Convention on the Prohibition of the Use, Stockpiling, Production and Transfer of Anti-personnel Mines and on 

Their De struction, 18 Sep t. 1997, entered into force 1 Mar. 1999. 

100 Hubert, supra note 96, at 59. 

41 
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 

101 Article 6(3) of the Landmine Ban Treaty states the following: 

Each State Party in a position to do so shall provide assistance for the care and rehabilitation, and 

social and economic reintegration, of mine victims and for mine awareness programs. Such assistance 

may be provided, inte r alia, through the United Nations system, international, regional or national 

organizations or institutions, the International Committee of the Red Cross, national Red Cross and 

Red Crescent societies and their International Federation, non-governmental organizations, or on a 

bilateral basis. 

102 Degener & Quinn endorse the call for strengthening civil society in the form of disability-focused coalitions. 

DEGENER & QUINN, supra note 17, §12.6. 

103 See, e.g., International Persistent Organic Pollutants Elimination Network <http://www.ipen.org>, Climate Action 

Network <http://www.climatenetwork.org>, Coalition to Stop the Use of Child Soldiers <http://www.childsoldiers.org>. 

104 Redress— Seeking R eparation for T orture Surviv ors, at <http://ww w.redress.o rg>. 

42 
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 (treatymonitoring and otherwise); (v) participation in international human rights litigation; and (vi) 

105 International R ehabilitation Co uncil for Tortu re Victim s (IRCT ) at <http://ww w.irct.org> , and Wor ld 

Organisation Against Torture (OMCT) at <http://www.omct.org>. 

106 Association for the Prevention of Torture (APT), at <http://www.apt.ch>. 

107 Amnesty International (AI) and the International Federation of Action by Christians for the Abolition of Torture


(FiACAT).


108 DEGENER & QUINN, supra note 17, §12.6. Spec ial Rapporteu r on Disability, B engt Lindqv ist, has stated that “to


develop a disability dimension in the present monitoring system is a project that could be started with short notice


and bring results fairly soon.” Summary Report of a Conference on the Theme: “Towards a United Nations


Convention on the Hum an Rights of P ersons with D isabilities,” organized by the Department of Foreign Affairs of


Ireland, the National Disability Authority and the Irish Human Rights Commission, Royal Hospital Kilmainham,


Dublin, Ireland, February 26, 2002, at 30. (The Web site of the Special Rapporteur is available at


<http//:ww w.disability-rap porteur.org> .)


43 
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 

109 Julie Mertu s, From Legal Transplants to Transformative Justice: Human Rights and the Promise of Transnational 

Civil Society , 14 AM. U. J. INT’L L. & POL’Y 1335 (1999). 

110 See Theresia D egener, International Disability Law—A New L egal Subject on the Rise: The Interregional Expert’s 

Meeting in Hong Kong, 14 BERKELEY J. INT’L L. 180-195 (1999); Report of the Interregional Seminar and 

Symposium on International Norms and Standards Relating to Disability, Hong Kong, China, 13-17 Dec. 1999 

(draft). 

111 Universal D eclaration of H uman R ights, supra note 38; International Covenant on Economic, Social and Cultural 

Rights, supra note 41; Interna tional Coven ant on Civil and Political Rights, supra note 40. All three documents are 

available from the University of Minnesota Human Rights Library, at 

<http://www1.umn.edu/humanrts/instree/auob.htm>. 

112 For recommendations regarding the mainstreaming of disability, see DEGENER & QUINN, supra note 17, §12.1-

12.4. 

44 
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 

113 The Vienna Declaration provides that “all human rights and fundamental freedoms are universal and thus 

unreserved ly include perso ns with disabilities” and goes on to state that The W orld Confer ence on H uman R ights 

calls on governments, where necessary, to adopt or adjust legislation to ensure access to these (life, welfare, 

education, work, living independently, and active participation in all aspects of society) and other rights for disabled 

people. Vienna Declaration and Program of Action, World Conference on Human Rights, Vienna, 14-25 June 1993, 
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 

115 The study by Degener & Quinn recommends, among other things, that at least one staff person should be assigned 

to work on disability in human rights issues in a full-time position within the Office of the High Commissioner of 

Human Rights. D EGENER & QUINN, supra note 17, §12.3. 

116 KECK & SIKKINK, supra note 77. 

46 
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 

117 Monitoring of the implementation of the UN Standard Rules relies upon the use of a Special Rapporteur, who 

reports to the Comm ission on Social Developm ent. The Special Rappo rteur is appointed every three years and so 

there is a ma rked lack of p ermane ncy in this particula r monitoring model. A dditionally, there is no mandato ry State 

reporting system in place. 

118 See, e.g., Association for the Prevention of Torture (APT), APT G uidelines for National NGOs on Alternative 

Reporting to UN Bodies, Including the Committee Against Torture (APT, 2000), available at 

<http://www.apt.ch/cat/guidelines.html> 

119 One of four hits in a disability word search on the W eb page included reference s to the disability not of persons, 

but of sloping agricultural land. In a word search for both “women” and “gender,” there were more than the 

47 
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 

wa j
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 

123 Groce et. al., supra note 93. 

124 Metts, supra note 1, at 1-2. 

49 
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-governmental international organizations. 

Likewise, the adoption of a treaty on the rights of people with disabilities might 

encourage the inclusion of a disability perspective in national foreign policy and assistance 

programs. At present, there are often no requirements that people with disabilities be included in 

programming or that any form of disability impact assessment be performed in relation to 

program design and implementation.126 The incongruence of foreign assistance programming 

with national disability policies is a stark reminder of the fact that government agencies with 

special roles to play in allocating foreign assistance have yet to figure disability issues into their 

work in any consistent fashion. Although the UN Standard Rules embraces the concept of 

conditioning development aid programs to the achievement of equality goals, the message has 

not yet been received. 

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

Organizations 

The work of human rights organizations has not served generally to raise awareness about 

the human rights condition of people with disabilities, notwithstanding the application and 

125 JULIE A. MERTUS, WAR’S OFFENSIVE ON WOMEN 103-110 (Kumarian Press 2000). 

126 It should be noted that the United States Age ncy for Intern ational Dev elopmen t (USA ID) has artic ulated in its 

Policy Paper on Disability, a “commitment to pursue advocacy for, outreach to, and inclusion of people with physical 

and cognitive disabilities, to the maximum extent feasible, in the design and implementation of USAID 

programming.” USAID Policy Paper on Disability, Sept. 12, 1997, available at 

<http://www.usaid.gov/about/disability/DISABPOL.FIN.html >. Specifically, it said the following: 

USAID's policy on disability is as follows: To avoid discrimination against people with disabilities 

in programs which USAID funds and to stimulate an engagem ent of host country counterparts, 

governments, implementing organizations and other donors in promoting a climate of 

nondiscrimination against and equal opportunity for people with disabilities. The USAID policy on 

disability is to promote the inclusion of people with disabilities both within USAID programs and 

in host countries where US AID has progra ms. 

Policy Paper on Disability, Sept. 12, 1997, §1. The Policy Paper describes the USAID disability policy as “in part an 

effort to extend the spirit of ADA in areas beyond the jurisdiction of U.S. law,” for the ADA does not apply to the 

non-US beneficiaries o f USA ID progra ms, ma king adhere nce to the policy essentially volunta ry. Id. 

50 
relevance to people with disabilities of the human rights principles that inform the work of 

human rights groups. Their advocacy remains largely irrelevant with specific respect to disability 

as a human rights issue. Several factors are likely contributors to the neglect of people with 

disabilities from the work of non-governmental human rights organizations. 

Staffing arrangements within such organizations do not include leadership roles for 

people with disabilities. Expertise regarding disability is largely insufficient. In addition, a 

survey of the main international human rights texts used in American law schools and 

international relations curricula do not address disability.127 As an example, in the second edition 

of Henry J. Steiner and Philip Alston’s leading textbook, International Human Rights in Context, 

“disability,” “people with disabilities,” and related terms are not in the index, in contrast to 

multiple entries for women, children, racial and ethnic minorities, and indigenous peoples, all of 

whom have chapters or major sections devoted to their specific human rights issues. The citation 

listing for the same text includes a reference to the 1975 Declaration on the Rights of Disabled 

Persons, but omits all subsequent international instruments on disability, including the 1993 UN 

Standard Rules. These patterns are repeated throughout the literature and in electronic resources 

on international human rights law and policy and no doubt contribute to the lack of capacity 

within human rights organizations to address disability in any ongoing and consistent manner. 

The adoption of a treaty specifically addressing the rights of people with disabilities will 

secure a place for disability as a human rights issue to be considered by all major human rights 

organizations in their work. Although it will take time for disability to be successfully integrated 

into the work of human rights groups, such groups may be expected (and should be encouraged) 

to follow closely developments in the drafting process of an international treaty on disability 

rights and to participate in coordination with disability organizations. This involvement should 

prompt reappraisals of how disability as a human rights issue is addressed in the highly 

influential monitoring and reporting work of human rights organizations. For example, Amnesty 

International and Human Rights Watch use a methodology and produce reports that are widely 

127 See, e.g., HENRY J. STEINER & PHILIP ALSTON, INTERNATIONAL HUMAN RIGHTS IN CONTEXT: LAW, POLITICS & 

MORALS (Oxford U ni. Press, 2d ed., 20 00); LOUIS HENKIN , ET AL., HUMAN RIGHTS (Foundation Press 1999); F RANK 

NEWMAN AND DAVID WEISSBRODT, INTERNATIONAL HUMAN RIGHTS: LAW, POLICY AND PROCESS (Anderson, 2d 

ed., 1996); and THOMAS BUERGENTHAL, INTERNATIONAL HUMAN RIGHTS IN A NUTSHELL (West, 2d e d., 1995). 

51 
regarded as credible and thus have the power to inform human rights policies of governments, 

including the United States, which routinely cites to and relies upon their work in its own human 

rights reporting. In addition, the adoption of a legally binding treaty on the rights of people with 

disabilities will prompt coverage in international human rights literature, training, and curricula, 

which has tended not to be the case with regard to non-binding instruments on the rights of 

specific minorities. This should, over time, strengthen the internal capacity of non-disabilityfocused human rights groups to consider how their work relates to the rights of people with 

disabilities and, ideally, encourage a commitment to that focus through the hiring of disabled 

people. Such developments would be in keeping with the organizational and programmatic shifts 

that occurred as a result of international advocacy on other human rights issues.128 

C. The Role of Legally Binding Obligations 

A treaty would be significant in establishing beyond question that persons with 

disabilities are indeed subjects of international rights and protection. Whereas the human rights 

of people with disabilities are accounted for in scattered provisions of treaties and in more 

concentrated non-binding declarations and other instruments, they have not been unified and 

elaborated on in any unified international law treaty. 

i. Creating Legal Accountability 

The UN Standard Rules are not currently regarded as having attained binding legal force. 

They were drafted as statements of intent—guidelines to be followed where possible—but may 

attain the status of customary international law where a sufficient number of States both follow 

the Rules in their practice and come to regard them as legally binding. Their content does 

represent a significant departure from earlier instruments addressing the rights of people with 

128 For a study tha t details the incorpo ration of gende r policies and gu idelines into the ope rational and pro gramm atic 

work of such aid institutions as UNHCR, CARE, and Catholic Relief, see MERTUS, supra note 125, at 103-110. 

52 
disabilities in their embrace of a social model of disability. Still, they remain aspirational and 

have no binding force in respect of the governments that adopted them.129 

The advantage of a treaty setting forth obligations on the rights of people with disabilities 

is that it will establish concrete obligations for government conduct that specifically address 

disability. A treaty will serve to define the specific application of human rights concepts to 

people with disabilities and assist governments by providing an anchor for and informing the 

interpretation of general human rights principles. In addition, a treaty will set concrete standards 

for government conduct according to which States will guarantee specific human rights for 

persons with disabilities and undertake to bring internal legislation and policies in line with 

applicable human rights standards. Where such obligations are not met, the treaty constitutes an 

invaluable tool for disability advocates to push for change. When advocates in their home 

countries face obstacles in their advocacy efforts, international standards can support them and 

may be used to demonstrate that governments have already committed to recognizing certain 

rights. The extent to which international human rights standards can serve to support and 

strengthen grassroots advocacy initiatives will depend, of course, on the ability of the 

international human rights system to engage grassroots groups and demonstrate the relevance of 

human rights standards and mechanisms to their work on the ground. A concerted effort must be 

made, therefore, to convey the application of a wide range of international human rights practices 

to domestic advocacy initiatives. 

129 Oscar Schachter has stated the following: 

Implementation and accountability are now regarded as essential elements of norm ative declarations, 

whether soft or hard law. Reporting, monitoring, transparency are emphasized by governments and 

international organizations. This indicates that institutional implementation rather than eventual 

customary law is the significant practical outcome of the non-binding normative resolutions. 

Governmental conduct is more likely to be influenced by the implementation procedures than by the 

claim that the norm has become customary law. The latter claim may assume some importance in a 

case before the International Court or another tribunal; but, outside of litigation, it would be very 

marginal to a governm ent’s decision on whether it should comply with a resolution of a non-binding 

character. 

Oscar Schachter , Recent Trends in International Law Making, 12 A.Y.I.L . 1, 12-15 (1992 ), cited in Mac Darrow, 

International Human Rights Law and Disability: Time for an Internationa l Convention on the Hum an Rights of P eople 

with Disabilities? 3(1) AUSTL. J. HUM. RTS. 69, 88-89 (1996). 

53 
ii. Reflecting Latest Developments in Disability Law and Policy 

The existing disability-specific human rights instruments do not reflect the full range of 

human rights protections applicable to people with disabilities. The UN Standard Rules did not, 

even at the time they were drafted, incorporate all existing human rights principles applicable to 

people with disabilities. As an example, the UN Standard Rules do not contain a nondiscrimination clause, nor do they address other core civil and political rights that are reflected in 

American constitutional and disability law and that have also attained the force of international 

customary law. The UN Standard Rules contain no provisions on the prohibition against torture 

and other forms of ill treatment, the prohibition against slavery and other forms of exploitative 

labor practices, or the right to life, human rights protections of profound relevance and 

importance to people with disabilities. While due process protections may be read into certain 

provisions of the UN Standard Rules, no explicit due process guarantees are expressed. Thus, the 

UN Standard Rules do not establish guidelines on the need for sign language interpreters in 

courts, nor do the Rules enumerate due process guarantees for the institutionalization of people 

with disabilities.130 Furthermore, the UN Standard Rules do not explicitly address (i) multiple 

forms of discrimination facing particular groups of disabled people (such as women, religious 

and ethnic minorities, sexual minorities, and people living in poverty) and particular human 

rights concerns for those specific groups; (ii) children with disabilities; (iii) refugees and 

internally displaced people, particularly in crisis situations; (iv) the enforcement of human rights 

standards for people with disabilities within hospitals and institutions; and (v) people with 

HIV/AIDS. It should be noted that an international human rights treaty for people with 

disabilities would not replace wholesale the UN Standard Rules. Rather, such a treaty would 

instead act to complement and reinforce the Rules, providing greater opportunity for their 

application. 

A treaty specifically addressing the rights of people with disabilities provides an 

opportunity to identify specific practices that endanger the well-being and enjoyment of human 

130 For example, in many instances, people with disabilities are often institutionalized without the benefit of any legal 

process to protect them against arbitrary detention. In cases where the law does provide for civil commitment or 

similar proc edures, those la ws are fre quently ignore d to the extent that the individual is arbitrarily deprived of a ll 

powers of decision-m aking. Rose nthal, supra note 18, at 69. 

54 
rights by persons with disabilities. In the same way the 1995 World Conference on Human 

Rights recognized violence against women as a war crime, a treaty can serve to identify 

egregious practices against people with disabilities that have not attracted the attention of the 

international community. These practices include, for example, the institutionalization of people 

with disabilities in degrading and dehumanizing conditions, involuntary psychiatric procedures, 

and domestic violence against people with disabilities.

131 This lack of attention to egregious 

practices is significant given the virtual disappearance of people with disabilities from current 

human rights monitoring. A treaty on the rights of people with disabilities will provide a legal, as 

well as moral and political, basis for the wider recognition and protection of the rights of people 

with disabilities, thereby increasing the likelihood of the development of methodologies and 

indicators for measuring human rights violations, something that has not occurred with regard to 

the UN Standard Rules and other instruments relating to disability.132 

iii. Prompting Shifts in National Laws and Policies 

In accordance with their obligations, States must ensure that the principles embodied in 

treaties to which they are parties are given effect within the domestic legal order, and this can 

prompt the development of new legislation. Thus, for example, the US Endangered Species Act 

was enacted to implement provisions of the Convention on the International Trade in Endangered 

Species of Wild Fauna and Flora (CITES).133 To give domestic effect to the provisions of an 

international treaty for the human rights of people with disabilities, a variety of methods exist by 

131 For an acc ount of internation al human rights reporting co ncerning invo luntary psychia tric procedure s, see Wor ld 

Network of Users of Psychiatry, Vancouver, Canada, (July, 2001), available at 

<http://www.wnusp.org/docs/hrposition.html>. 

132 See, e.g., Limberg Principles on the Interpretation of the International Covenant on Economic, Social and Cultural 

Rights, U.N . Doc. E/C N.4/1987/1 7, Annex, reprinted in 9 HUM. RTS. Q. 122-135 (1987). 

133 The Endangered Species Act was intended to be responsive to CITES, as well as other international treaties 

relating to the protection of endangered plants and animals. Endangered Species Act, 16 U.S.C. § 1531 et. seq. 

(1973). 

55 
which international legal obligations may be implemented, including, but not limited to, the 

enactment of legislative measures.134 

In addition to contributing to the development of domestic legislation, an international 

treaty can inform the work of domestic courts. The provisions of the treaty can not only serve as 

a guide in the interpretation of any specific implementing legislation, but the principles 

embodied in the treaty can also encourage the judicial development of other areas of domestic 

law. An international treaty on the human rights of people with disabilities might, for instance, 

provide the basis for invoking international law in a disability case before a national court. 

International law is cited with increasing frequency and effect in national courts, both in the 

United States and abroad. The United States has a significant body of case law wherein 

international standards have been either expressly invoked by individuals seeking a remedy for 

human rights violations or relied on to guide the interpretation of both state and federal laws.135 

In other instances, international standards may be used as a gap-filling device where domestic 

law is imprecise or undeveloped. 

134 The method of translating international legal obligations into national law is dependent on the nature of the 

domestic legal system. For a straightforward account of this process, see Report of the United Nations Consultative 

Expert G roup Mee ting on Internation al Norms a nd Standards re lating to Disability , Berkeley, California, pp. 20-24 

(December 8-12, 1998). 

135 See, e.g., Filartiga v. Pena-Irala, 630 F.2d 876 (United States Court of Appeals, Second Circuit, 1980); Lareau v. 

Manson, 507 F. Supp. 1177, 1193 n. 18 (D. Conn. 1980) (using the UN Standard Minimum Rules for the Treatment 

of Prisoners as a guide to the interpretation of US law). For more on the role of international law in US courts, see 

generally JORDAN J. PAUST, INTERNATIONAL LAW AS LAW OF THE UNITED STATES (Carolina Academic Press 1996); 

Ralph Stein hardt, Recove ring the Charm ing Betsy P rinciple, 94 AM. SOC’Y. INT’L L. PROC. 49 (2000); Ralph 

Steinhardt, Fulfilling the Promise of Filartiga: Litigating Human Rights Claims Against the Estate of Ferdinand 

Marcos, 20 YALE J. INT’L L. 65 (1995). 

56 
VI. Adopting an International Convention on the Rights of People 

with Disabilities: Issues and Concerns 

The current effort to secure the adoption of an international treaty on the rights of people 

with disabilities has much to offer. As discussed above, 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. There are, however, challenges associated with launching yet another treaty 

initiative. These challenges include (i) strengthening the capacity and political will of people 

with disabilities and their representatives to participate fully and effectively in what is sure to be 

a lengthy coalition-building effort and international negotiation process; (ii) ensuring the 

constructive participation of the United States in international negotiations for a treaty; and (iii) 

overcoming growing “treaty fatigue” among governments and other actors with regard to 

multilateral treaty initiatives. 

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

Previous efforts to advance the human rights of people with disabilities through the 

adoption of a human rights treaty have failed not only partially on account of governmental 

disinterest but also as a result of the lack of mobilization and awareness-raising by people with 

57 
disabilities to build support for such a proposal.136 A strong and fully mobilized coalition 

representative of the full range of people with disabilities and disability organizations is 

necessary in order to secure the adoption of a treaty that advances the human rights of all people 

with disabilities, including the most marginalized and oppressed sub-groups. In addition, without 

creating a well-coordinated global coalition with strong leadership by people with disabilities, it 

will be difficult for the disability community to take full advantage of their participatory role in 

the treaty process, which is, in itself, an immensely educative and galvanizing process for all 

involved. Risks are therefore associated with having an international process that is not fully 

participatory or one in which only some disability groups or mainstream human rights 

organizations purport to speak for all people with disabilities. 

An additional risk to be assessed in the context of engaging in a treaty process is the 

relative degree of consensus within the broad disability community as to the key elements of a 

coherent and focused international campaign. Absent consensus on some core components of the 

treaty among a broad-based coalition of the global disability community, the effectiveness of 

non-governmental participation would be compromised by division and the resulting agreement 

may disappoint. Even assuming consensus regarding major issues, it will be crucial for the nongovernmental community to be highly coordinated and to develop effective tools with which to 

advocate for acceptable treaty language and strong institutional mechanisms for compliance. In 

this regard, the highly developed participatory strategies of earlier successful campaigns will 

serve as useful models for the disability community.137 

136 There w ere two ea rly efforts within the United N ations to build supp ort for the drafting of an internation al treaty 

on the rights of people with disabilities. In 1987, the Global Meeting of Experts to review the Implementation of the 

World Programme of A ction concerning Disabled Persons was convened at the mid-point of the UN Decade of 

Disabled Persons and recommended that the UN General Assembly convene a conference to draft an international 

convention on the elimination of all forms of discrimination against persons with disabilities. Draft agreements were 

in fact prepared by Italy (U.N. Doc. A/C.3/42/SR.16 (1987)) and Sweden (U.N. Doc. A/C.3/44/SR.16 (1989)) but 

were reje cted by the U N Gen eral Assem bly at its forty-secon d and forty-fo urth sessions, resp ectively, ma inly 

because of disinterest and trea ty fatigue. For m ore on these e fforts, see gene rally Bengt L indqvist, Standard R ules in 

the Disability F ield, in HUMAN RIGHTS AND DISABLED PERSONS: ESSAYS AND RELEVANT HUMAN RIGHTS 

INSTRUMENTS 64-65 (The resia Dege ner & Y olan Koster-Dreese, e ds., 1995). 

137 For some excellent examples of practical tools used by other international campaigns to guide their effective 

participation in international treaty and conference processes, see SHARYLE PATTON AND KAREN PERRY, A MANUAL 

FOR NGO PARTICIPANTS IN THE PERSISTENT ORGANIC POLLUTANTS (POPS) INTERGOVERNMENTA L NEGOTIATING 

COMMITTEE (INC) PROCESS (1999); International Women’s Tribune Centre, Get Ready! Connecting Beijing to Action 

58 
B. Ensuring Constructive U.S. Participation 

Of major concern to disability organizations worldwide will be securing the constructive 

participation of the United States in negotiations for the adoption of an international treaty on the 

rights of people with disabilities and, thereafter, ensuring signature and ratification of the treaty 

by the United States. Regrettably, the United States has the poorest record of ratification of 

human rights treaties among all industrialized nations, having ratified only 3 of 26 international 

human rights treaties. This history bears the unmistakable imprint of resistance to the domestic 

application of human rights treaties in US courts during the 1950s, when many states had in 

place overtly discriminatory and racist laws.138 Although the United States started out in a 

position of international leadership in the early international human rights movement, which 

included the participation of Eleanor Roosevelt and other Americans, Senator John W. Bricker of 

Ohio brought an abrupt end to this pioneering role in the early 1950s.139 

During the early 1950s, Senator Bricker proposed an amendment to the US Constitution 

that would have made all treaties non-self-executing, meaning, among other things, that 

individuals would be unable invoke treaty provisions in US courts absent implementing 

legislation. The amendment would have made it extremely difficult for the United States to join 

at Home, 52 THE TRIBUNE—A WOMEN AND DEVELOPMENT Q. (November 1994). For some useful discussions of 

international campaign strategies and the activities of transnational advocacy networks respectively, see EDWARDS & 

GAVENTA , supra note 98; KECK & SIKKINK, supra note 77. 

138 See BUERGENTHAL, supra note 127; VERNON VAN DYKE, HUMAN RIGHTS, THE UNITED STATES AND WORLD 

COMMUNITY vi, 131-134 (1970). 

139 Indeed, from the early days of the American Republic, and continuing throughout our constitutional history, there 

have been numerous invocations of human rights concepts by American jurists and policymakers, expressed 

variously as the “rights of man,” “rights of mankind,” and “human rights.” Alexander Hamilton stated in 1779 that 

“the sacred rights of mankind ... are written, as with a sunbeam, in the whole volume of human nature ... and can 

never be erased or obscured by mortal power.” ALEXANDER HAMILTON, THE FARMER REFUTED (N.Y. 177 5), quoted 

in PAUST, supra note 135, at 167. 

59 
human rights treaties, thus helping to preserve racist state legislation.140 Fortunately, President 

Eisenhower was successful in defeating the Senator’s amendment, but success came at a cost. In 

order to defeat the amendment, the administration promised not to accede to any international 

human rights treaties.141 This policy of non-accession was dropped by successive administrations, 

and most have long since forgotten Senator Bricker’s successful campaign to ward off US 

participation in international human rights treaties and its overt connection to racist law and 

policies that stood to be set aside by international standards of non-discrimination.142 

Bricker’s legacy remains, though, and may still be discerned in well-worn and oddly 

unquestioned justifications for US non-participation in human rights treaties based on the 

complexities of our federal system, the notion that human rights are an exclusive concern of 

domestic jurisdiction, and the fact that the US Constitution does not permit the use of the treaty 

power for regulation of such matters, the potential for conflict between treaty obligations and the 

Constitution, and the like. As inaccurate as these now reflexive responses are in the opinion of a 

host of highly respected international law scholars and practitioners,

143 they remain serious 

obstacles in securing the participation of the United States in virtually any multilateral treaty 

effort, and human rights treaties in particular. The fact remains, however, that the rest of the 

world has much to gain by the meaningful participation of American disability groups and policy 

makers in supporting a human rights treaty that will help foster domestic law changes around the 

140 The most important language in the amendment stated that “A treaty shall become effective in the United States 

only through legislation which would be valid in the absence of treaty." In other words, under the amendment 

Congress would not be able to use a treaty to implement legislation that it would normally be powerless to introduce. 

Louis He nkin, U.S. Ratification of Human Rights Conventions: The Ghost of Senator Bricker, 89 AM. J. INT'L L. 341, 

348 (1995). 

141 Id. at 348-49. 

142 See D. TANANBAUM, THE BRICKER AMENDMENT CONTROVERSY : A TEST OF EISENHOWER’S POLITICAL 

LEADE RSHIP (1988); Ka ufman & Whitem an, Opposition to Human Rights Treaties in the United States Senate: The 

Legacy of the Bricker Amendment, 10 HUM. RTS. Q. 309 (1988). 

143 See, e.g., BUERGENTHAL, supra note 127, at 284-298; Louis He nkin, The Constitution, Treaties and International 

Huma n Rights , U. PA. L. REV. 1012 (1968); Remarks of Professor Louis B. Sohn before the 1979 Senate Hearings on 

International Human Rights Treaties (S. Comm. For. Rel., 96th Cong., 1 st Sess.), where Professor Sohn stated that the 

“fears [of the United States regarding human rights treaties] have been exaggerated and that it is simply part of the 

general feeling that the United States knows better about various things and therefore should not be subject to other 

peoples’ judgments.” STEINER & ALSTON, supra note 127, at 1037. 

60 
world similar to what the ADA has done to shape disability law and policy in the United States. 

The American disability community likewise has much to gain by participating in the rich, 

educative process to draft a treaty on the rights of people with disabilities. The challenge will be 

to ensure that the United States remains constructively engaged throughout the process to draft a 

treaty and works in close partnership with disabled people and their representative organizations. 

C. Combating Treaty Fatigue 

The prospect of securing the meaningful and universal participation of States in another 

international human rights treaty may seem especially daunting at a time when many speak of 

“treaty fatigue” and “treaty congestion.” To be sure, there are challenges associated with any 

proposal for a new international agreement. The national reporting mechanisms (requiring States 

Parties to report on their implementation of obligations) frequently receive reports that are 

inaccurate, incomplete, or late. In many instances, the reports are not submitted at all. Even when 

adequate reports are received, under-resourced treaty-monitoring bodies may be forced into hasty 

and superficial reviews of the reports. The increase in the number of treaties with reporting 

requirements in the human rights treaty context (and international environmental realm) have led 

to concerns about the increasingly burdensome proliferation of reporting requirements, hence the 

term “treaty fatigue.” With some countries unable to cope with existing reporting requirements 

for the treaties to which they are party, the prospect of securing their meaningful participation in 

additional treaty mechanisms may seem remote. 

Notwithstanding such challenges associated with participation in international human 

rights agreements, devices are available to promote timely reporting and procedures to enhance 

the review of State reports from which lessons can be drawn. In an effort to respond to 

difficulties with meeting reporting requirements, international environmental regimes have 

introduced more specific reporting guidelines, providing precise reporting deadlines, permitting 

the consideration of non-official sources of information (in the event that a State fails to meet its 

deadline), and providing financial and technical assistance to States in the preparation of their 

61 
reports.144 Some human rights treaty-monitoring bodies have likewise introduced guidelines to 

enhance the effectiveness of reporting.145 By using such procedures, a human rights treaty for 

people with disabilities could ensure that the benefits of reporting mechanisms are gained, 

without placing undue burden upon States Parties. 

One final response to concerns about growing treaty fatigue is that the process of 

adopting a convention on the rights of people with disabilities will generate an increase in 

knowledge and understanding of disability as a human rights issue that no current institutional 

structure has been able to provide. A treaty specifically addressing the rights of people with 

disabilities stands to contribute to the diversity of knowledge within international human rights 

institutions, as well as other settings, in a way that has not yet occurred in the context of 

disability. In turn, disability organizations will forge alliances and understand their mission 

within the larger context of human rights. Given the size and breadth of the human rights 

concerns of people with disabilities, the case for a separate treaty is especially compelling. 

144 For exam ple, the Mo ntreal Protoco l provides spec ific reporting tim elines for States Parties, and it also p ermits 

“Member States of a regional economic integration organization” to provide some of the reports on a regional 

organization basis, rather than individually (Art. 7). Montreal Protocol on Substances that Deplete the Ozone Layer, 

16 Septem ber 1987, U .K.T.S. 19 (1990); Cm . 977; 26 I.L.M . (1987) 1550; 1 7 E.P.L. (1 987) 256. T he Conve ntion to 

Combat Desertification also permits States Parties to provide “a joint communication on measures taken at the 

subregional and/or regional levels,” (Art. 26(4)), and in addition it provides for the provision of technical and 

financial support to developing countries, to better enable them to meet their reporting requirements (Art. 26(7)). 

Convention to Comb at Desertifica tion in Those C ountries Exp eriencing D rought and/or D esertification, Pa rticularly 

in Africa, 17 June 1994, 33 I.L.M. (1994) 1332-82. 

145 See, e.g., Committee Against Torture, guidelines regarding the form and content of periodic reports to be 

submitted b y States Partie s under Ar ticle 19, paragra ph 1 of the Co nvention, adop ted by the Co mmitte e at its 85th 

meeting (sixth session), on 30 April 1991, and revised at its 318th meeting (twentieth session), on 18 May 1998, 

U.N. Doc. A/53/44, Annex VI, 16 Sept. 1998, available at < http://www.unhchr.ch/tbs/doc.nsf >; Revised General 

Guidelines Regarding the Form and Contents of Reports to be Submitted by States Parties Under Articles 16 and 17 

of the International Covenant on Economic, Social and Cultural Rights, U.N. Doc. E/C.12/1991/1, 17 June 1991, 

available at < http://www.unhchr.ch/tbs/doc.nsf>. 

62 
VII. Recommendations and Future Directions 

Policy makers and disability organizations should be prepared for sustained action over a 

long period of time to bring about durable improvements in the human rights condition of people 

with disabilities throughout the world. International and domestic polices on disability must aim 

to break down the barriers to full participation in society by people with disabilities through work 

at different levels using complementary approaches. An effective strategy must address, at a 

minimum, the following issue areas. 

A. Principles for Participation in the Process of Drafting an International 

Convention on the Rights of People with Disabilities 

International law and practice support the participation of people in all decision-making 

processes in which their interests are affected. Unfortunately, many of the past efforts in 

international law and policy-making concerning people with disabilities have not adequately 

provided for the meaningful participation of people with disabilities. The following principles 

must drive the current initiative to draft an international convention on the rights of people with 

disabilities: 

C� The process of drafting any new treaty needs to be open-ended, inclusive, and 

representative of the interests of people with disabilities, including the most 

marginalized sectors of the disability community. 

C� People with disabilities must be principal participants in the drafting of any new 

treaty at all stages in the negotiation process. 

C� All expert meetings associated with the development of international law and 

policy must be organized to include the participation of architects, lawyers, policy 

analysts, engineers, and other relevant professionals with direct personal 

experience with disability. 

63 
The process by which a convention on the rights of people with disabilities is drafted 

should be broadly participatory throughout the preparatory and conference phases, ensuring 

meaningful representation of the disability community, including the most marginalized groups 

of people with disabilities. The conference and preparatory phases of an international 

convention should be coordinated in Geneva, where the UN human rights system is based. 

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

Policy Initiatives 

Actors should be sure to participate in self-evaluation to ensure that their own policies 

and initiatives do not inadvertently serve to perpetuate the oppression and discrimination of 

people with disabilities. Accordingly, the insights of the social model of disability must be 

considered. This applies to all actors (governmental, non-governmental, and individual) engaged 

in disability policy decision-making. 

Any law and policy initiative that addresses the human rights of people with disabilities, 

whether national or international, should reflect the social model of disability that now frames 

current thinking about disability. 

C. Raising Awareness and Building the Capacity of Actors to Address the 

Human Rights of People with Disabilities 

Potential participants in a treaty-making process must recognize and capitalize on the 

opportunities for capacity-building and awareness-raising concerning disability as a human rights 

issue. Failure to do so will result in (i) the continued under-use by the disability community of 

existing human rights mechanisms and inadequate use and development of mechanisms 

established by a new treaty; and (ii) under-use by decision-makers of the disability community as 

a source of critical input on issues that affect people with disabilities. Participants should resist 

the urge to rush the treaty process. The following activities, inter alia, should be regarded as 

central to any human rights strategy embarked on by disability organizations: 

64 
C Promoting public education and awareness about the human rights condition of people 

with physical and mental disabilities. 

C Use of existing UN human rights treaty processes. 

C Engagement by disability organizations with regional human rights systems. 

C Monitoring of, and reporting on, human rights violations against people with disabilities. 

C Encouraging governments to support human rights education programs for people with 

disabilities as a part of their response to the UN Decade for Human Rights Education. 

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

The participation of people with disabilities in decisions that concern them, and in bodies 

that are relevant to their lives, is a fundamental principle that must be reflected in international 

law and policy. People with disabilities, as is common to many minority groups, are often 

politically invisible. People with disabilities must be politically represented within public 

institutions, and their representatives should be accountable to people with disabilities, 

empowered to represent their interests and competent to communicate their interests effectively. 

The following principles, among others, need to be recognized and reflected in the development 

of new national and international instruments: 

•The treaty should embody the principle of non-discrimination and should recognize and 

seek to counter multiple forms of discrimination against people with disabilities. 

C Political representation and participation in decision-making by people with disabilities 

should feature prominently in an international treaty. 

C Due process protections for people with disabilities, not featured at all in the UN 

Standard Rules, should receive explicit and detailed coverage. 

Consistent with principles of due process and participation under international human 

rights law and the UN Standard Rules, all governmental and non-governmental discussions 

concerning human rights must provide for the meaningful participation of people with 

disabilities. Moreover, any fora in which international human rights experts or other 

65 
professionals are brought together to discuss the rights of people with disabilities must include 

the participation of professionals who themselves have personal experience with disability. 

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

with Disabilities 

International human rights principles found in existing treaties must be read along with 

other international human rights documents to identify the full range of human rights to which 

people with disabilities are entitled under existing international human rights law. In addition, 

models of national disability legislation, including, but certainly not limited to, the Americans 

with Disabilities Act, should be consulted to identify areas in which existing international human 

rights law on disability might be further developed. The following human rights principles and 

spheres of human rights protection, reflected in international human rights law, must receive 

coverage in any treaty to be developed on the human rights of people with disabilities: 

C Non-discrimination


C Stereotyping of groups


C Participation


C Right to life


C Freedom from torture and other forms of ill-treatment


C Slavery, servitude, and forced labor


C Survivor assistance


C Equality before the law


C Due process protections


C Rights of peaceful assembly and association


C Freedom of thought/opinion and information


C Political and public life


C Accessibility (to the built and natural environments, technology)


C Medical care/health/rehabilitation


C Employment/social security/income maintenance


66 
C Education 

C Culture and religion 

C Recreation and sports 

C Nationality/freedom of movement/refugees/internally displaced persons 

Reference should be made to the full repository of international human rights standards 

in the development of an international convention. 

F. A Strong Treaty-Monitoring Mechanism 

The key to the successful implementation of a convention on the human rights of people 

with disabilities is the establishment within the framework of the convention of a strong 

monitoring mechanism. A committee that is adequately resourced and that consists of people 

with disabilities with relevant expertise is critical to the credibility, legitimacy, and efficacy of 

the treaty. The committee should be mandated to receive and act upon State reports on treaty 

implementation measures. In addition, the committee should be authorized to receive information 

from non-governmental organizations that are an important supplemental source of information 

regarding State implementation measures. Finally, a committee should have the power to receive 

and act upon State-to-State complaints as well as complaints originating from individuals or 

groups competent to represent people with disabilities. 

G. Future Directions in Coalition-Building 

Disability and human rights groups worldwide should work to raise awareness and 

support for the strengthening of existing human rights mechanisms and their capacity to 

acknowledge and address the human rights of people with disabilities. In addition, such groups 

should work collectively to promote the adoption of an international convention on the human 

rights of people with disabilities, so that all stakeholders are consulted. These efforts should 

include, at a minimum, the following: 

67 
C Coordination of efforts to engage with existing human rights treaty-monitoring bodies 

and other international and regional human rights processes. 

C Development of consensus on core principles to be included in the treaty. 

C Development of a tool-kit and other materials for outreach and education to be followed 

by wide dissemination in cooperation with disability organizations, for which there are 

ready models for adaptation from other international human rights contexts. 

68 
VIII. Conclusion 

Although there exists a robust global human rights system, people with disabilities 

throughout the world still face substantial obstacles to the full enjoyment of their human rights 

and confront human rights abuses on a daily basis. An international convention on the human 

rights of people with disabilities would not only add much-needed content to the existing 

framework of international human rights law, but would also establish an institutional framework 

to monitor the global human rights condition of people with disabilities. In addition, there are 

positive transformative effects to be gained from the treaty-drafting process. Constructive 

engagement by the United States and the American disability and human rights communities will 

ensure that those engaged in promoting the human rights of people with disabilities possess the 

necessary capacity to further the human rights vision embodied in the treaty and the human rights 

system as a whole. 

69 
70

Appendix 

Glossary of International Law Terms 

To assist readers of this paper who may not be familiar with the terms of international law, the 

following is a brief glossary that explains some of the terms commonly referenced in 

international law. For a clear, accessible guide to international law and a more extensive 

discussion of some of the terms commonly used, see THOMAS BUERGENTHAL & HAROLD G. 

MAIER, PUBLIC INTERNATIONAL LAW 24 (West 2nd ed. 1990). For an additional widely 

referenced but more extensive treatise on international law, see MALCOLM N. SHAW, 

INTERNATIONAL LAW (Cambridge, 4th ed. 1997). 

Accession—there will usually be a specified period of time during which States can become 

parties to a treaty/convention through a process of “signing” and “ratification.” After this period 

of time has ended, States can typically become parties to a treaty/convention through a process of 

“accession,” whereby they pledge to be bound to the terms of the treaty/convention, subject to 

any “RUDs” that they may have filed at the same time. 

Adoption—once the text of an international document has been agreed on, it is said to have been 

“adopted.” The legal significance of this adoption will depend on the nature of the document in 

question. Thus, non-binding UN General Assembly resolutions are “adopted,” and binding 

treaties are likewise “adopted” following the end of a treaty negotiating process. 

Convention/Treaty—see “Treaty,” below. (For additional sources of law, see “Sources of law,” 

below.) 

Customary international law—customary international law refers to a rule or principle that is 

reflected in the practice or behavior of States and is accepted by them (expressly or tacitly) as 

being legally binding as a matter of international law. Thus, in order to identify whether a given 

71 
practice is indeed a rule of customary international law, one must examine whether the particular 

practice of States is general and consistent and occurs because States believe they are acting as a 

result of a legal obligation, as opposed to comity or courtesy. Although not all States need to 

engage in the practice before it is considered legally binding, there should be a uniformity of 

practice across the international community. States that have not engaged in the practice and 

have persistently (and consistently) objected (i.e., persistent objectors) to it since its emergence 

as a customary rule will not be bound by it. Conversely, States that do not engage in the practice 

but have failed to issue objections (i.e., become persistent objectors) will be bound by any rule of 

international customary law that develops. (For additional sources of law, see “Sources of law,” 

below.) 

Declaration— an “instrument” such as the Universal Declaration of Human Rights constitutes 

an aspirational document that sets forth assertions by a State (or States). Because of its 

aspirational nature, a “declaration” is not considered binding under international law unless its 

provisions become incorporated into customary international law, as has been the case with many 

of the provisions of the Universal Declaration of Human Rights. (See “customary law,” above.) 

Entry into force— mere “adoption” of a treaty/convention is not sufficient for the terms of that 

document to be fully binding on any States Parties. Instead, the treaty/convention becomes fully 

enforceable on States Parties once the treaty has “entered into force.” Typically, a 

treaty/convention will specify how many States must become members before the 

treaty/convention “enters into force.” If the specified number of States Parties is never reached, 

then the treaty/convention will never enter into force and be given full effect as a matter of 

international law. 

General principles of law—general principles of law recognized by or common to the world’s 

major legal systems are a source of international law. They are now relied on less frequently than 

other sources of international law, but may serve as important gap-filling devices, especially in 

cases related to procedural matters and problems of international judicial administration. In order 

72 
to determine the existence of a “general principle” of international law, a court will typically look 

to the laws that are included within States’ municipal systems. (For additional sources of law, see 

“Sources of law,” below.) 

Instrument—this is a generic term frequently used to refer to an international document. The 

“instrument” in question may be either of a binding or non-binding character. 

International Bill of Rights—this is the name given to the trio of documents that form the core 

of general human rights provisions. The “Bill” consists of the Universal Declaration of Human 

Rights, the International Covenant on Civil and Political Rights, and the International Covenant 

on Economic, Social and Cultural Rights. While the two Covenants are legally binding 

international treaties/conventions, the Universal Declaration was adopted as a General Assembly 

Resolution and was therefore considered a non-binding, aspirational document at the time. It is 

now widely regarded as having attained the status of customary international law, in whole or at 

least in respect of some of its provisions. 

International Covenant on Economic, Social and Cultural Rights—see “International Bill of 

Rights,” above. 

International Covenant on Economic and Social Rights—see “International Bill of Rights,” 

above. 

Jus cogens—this is a fundamental, peremptory norm of international law that is binding on all 

States, even if they object to it. An example of international laws that are regarded as jus cogens 

include the international prohibitions against torture, genocide, and the slave trade. These are 

crimes for which there is no defense, and that all States must undertake to prevent and punish. 

(For additional sources of law, see “Sources of law,” below.) 

73 
Object and purpose—this constitutes the essential character of a document and it can typically 

be discerned from the title of the document and any preambular text. It is this “object and 

purpose” that States Parties must always ensure that they do not violate and that signatory States 

must respect unless/until they declare that they do not wish to “ratify” the treaty/convention and 

become full States Parties. In more recent times, the United States has adopted the unusual—and 

in one case rather dubious—practice of “unsigning” treaties. 

Ratification—ratification constitutes the second and final stage at which a state typically 

becomes a member or “States Party” to a treaty/convention. Unless a process of “accession” is 

used to attain membership, a State will usually sign the treaty/convention and then send the 

document to its governing legislature for consideration. The actual process of ratification is 

governed by domestic laws, and so is different in each country. In the United States, a treaty is 

ratified by the President with the advice and consent of 2/3 of the Senate. 

Reservations, understandings and declarations (RUDs)—although some treaties/conventions 

do not permit the filing of RUDs (ILO treaties typically do not permit such filings), most 

treaties/conventions will permit States to file RUDs at the time they ratify or accede to a treaty. 

RUDs are tools used by States to limit the scope of application of a treaty or to make clear how a 

State interprets some aspect of the treaty. For example, if a provision of a treaty will violate a 

State’s domestic constitutional provisions, that State will usually file a “reservation” to the 

provision, so that the specified provision does not apply to the State and cannot be enforced 

against it. It should be noted that if the “reservation” contravenes the essential “object and 

purpose” of a treaty/convention, then the “reservation” will be invalid and the treaty/convention 

provision in question will usually still apply to the State. Whereas “understandings” and 

“declarations” do not exempt the application of treaty/convention provisions to a State, they do 

provide States with an opportunity to clarify how they believe a particular provision should be 

interpreted. 

74 
Resolution—this is a non-binding instrument that expresses the common interest of a group of 

States and is usually adopted under the auspices of an organ that is part of an international 

organization, such as the UN General Assembly. In most cases, there is no legal obligation to 

implement the terms of a resolution, but in some cases “resolutions” may have a quasi-legislative 

effect. Resolutions may, however, aid in the development of international law and may, over 

time, become part of “customary international law.” 

Signature—“signature” constitutes the first step for a State to become a party to a treaty. At this 

stage, the State is not bound to abide by all the specific provisions of the treaty/convention, even 

if the treaty/convention has “entered into force.” Instead, the State is bound to abide by the 

“object and purpose” of the treaty. This level of obligation is maintained until the State either 

“ratifies” the treaty/convention (causing it to assume responsibility for all of the provisions for 

which it has not filed a “reservation”) or sends notice that it is rejecting the treaty and has no 

intention of ever “ratifying” it (thus releasing it from any obligation to abide by the 

treaty/convention). The United States has recently “unsigned” two treaties that it had previously 

signed but not ratified. 

Sources of law—Article 38(1) of the Statute of the International Court of Justice is perhaps the 

most authoritative statement of the sources of international law. The Article lists the following as 

the sources: 

•International conventions, whether general or particular, establishing rules 

expressly recognized by the contesting states. 

•International custom, as evidence of a general practice accepted as law. 

•The general principles of law recognized by civilized nations subject to the provisions of 

Article 59, judicial decisions, and the teachings of the most highly qualified publicists of 

the various nations, as subsidiary means for the determination of rules of law. 

For definitions and discussion of the sources listed by the ICJ Statute, see infra. 

75 
Standards—“standards” provide a guide for how States should act under certain circumstances. 

“Standards” may be expressed in non-binding instruments (such as the UN Standard Rules on the 

Equalization of Opportunities for Persons with Disabilities) or in binding instruments, such as 

treaties/conventions. 

States Parties—this is a term used to denote a State that is a member of (or party to) a particular 

document or organization. 

Treaty/Convention—the law of treaties is governed primarily by the 1969 Vienna Convention 

on the Law of Treaties (which came into force in 1980), as well as by customary law. Under 

Article 2 of the Vienna Convention, a “treaty means an international agreement concluded 

between States in written form and governed by international law, whether embodied in a single 

instrument or in two or more related instruments and whatever its particular designation.” The 

fundamental characteristic of a treaty is that it is binding on the parties to it, and the terms of the 

treaty must be performed in good faith. Typically, States will become “States Parties” to a treaty 

by “signing” and “ratifying” the document. Alternatively, States may “accede” to the treaty 

through a process known as “accession.” It should be noted that States will sometimes file 

“RUDs” at the time they join a treaty, which will serve to affect how the treaty is applied to that 

State. The treaty will usually specify how many States need to have become States Parties before 

the treaty “comes into force” and the terms of the treaty become enforceable. Binding, written 

international agreements may be referred to by numerous names, including treaty, convention, 

agreement, protocol, covenant, charter, statute, etc. (For additional sources of law, see “Sources 

of law,” above.) 

Universal Declaration of Human Rights—see “International Bill of Rights,” above. 

76 
Mission of the National Council on Disability 

Overview and Purpose 

The National Council on Disability (NCD) is an independent federal agency with 15 members 

appointed by the President of the United States and confirmed by the US Senate. The overall 

purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal 

opportunity for all individuals with disabilities, regardless of the nature or significance of the 

disability, and to empower individuals with disabilities to achieve economic self-sufficiency, 

independent living, and inclusion and integration into all aspects of society. 

Specific Duties 

The current statutory mandate of NCD includes the following: 

•	 Reviewing and evaluating, on a continuing basis, policies, programs, practices, and 

procedures concerning individuals with disabilities conducted or assisted by federal 

departments and agencies, including programs established or assisted under the 

Rehabilitation Act of 1973, as amended, or under the Developmental Disabilities 

Assistance and Bill of Rights Act, as well as all statutes and regulations pertaining to 

federal programs that assist such individuals with disabilities, in order to assess the 

effectiveness of such policies, programs, practices, procedures, statutes, and regulations 

in meeting the needs of individuals with disabilities. 

•	 Reviewing and evaluating, on a continuing basis, new and emerging disability policy 

issues affecting individuals with disabilities at the federal, state, and local levels and in 

the private sector, including the need for and coordination of adult services, access to 

personal assistance services, school reform efforts, and the impact of such efforts on 

individuals with disabilities, access to health care, and policies that act as disincentives 

for individuals to seek and retain employment. 

•	 Making recommendations to the President, Congress, the Secretary of Education, the 

director of the National Institute on Disability and Rehabilitation Research, and other 

77 
officials of federal agencies about ways to better promote equal opportunity, economic 

self-sufficiency, independent living, and inclusion and integration into all aspects of 

society for Americans with disabilities. 

•	 Providing Congress, on a continuing basis, with advice, recommendations, legislative 

proposals, and any additional information that NCD or Congress deems appropriate. 

•	 Gathering information about the implementation, effectiveness, and impact of the 

Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.). 

•	 Advising the President, Congress, the commissioner of the Rehabilitation Services 

Administration, the Assistant Secretary for Special Education and Rehabilitative Services 

within the Department of Education, and the director of the National Institute on 

Disability and Rehabilitation Research on the development of the programs to be carried 

out under the Rehabilitation Act of 1973, as amended. 

•	 Providing advice to the commissioner of the Rehabilitation Services Administration with 

respect to the policies and conduct of the administration. 

•	 Making recommendations to the director of the National Institute on Disability and 

Rehabilitation Research on ways to improve research, service, administration, and the 

collection, dissemination, and implementation of research findings affecting persons with 

disabilities. 

•	 Providing advice regarding priorities for the activities of the Interagency Disability 

Coordinating Council and reviewing the recommendations of this council for legislative 

and administrative changes to ensure that such recommendations are consistent with 

NCD’s purpose of promoting the full integration, independence, and productivity of 

individuals with disabilities. 

•	 Preparing and submitting to the President and Congress an annual report titled National 

Disability Policy: A Progress Report. 

78 
International 

In 1995, NCD was designated by the Department of State to be the US government’s official 

contact point for disability issues. Specifically, NCD interacts with the Special Rapporteur of the 

United Nations Commission for Social Development on disability matters. 

Consumers Served and Current Activities 

Although many government agencies deal with issues and programs affecting people with 

disabilities, NCD is the only federal agency charged with addressing, analyzing, and making 

recommendations on issues of public policy that affect people with disabilities regardless of age, 

disability type, perceived employment potential, economic need, specific functional ability, 

veteran status, or other individual circumstance. NCD recognizes its unique opportunity to 

facilitate independent living, community integration, and employment opportunities for people 

with disabilities by ensuring an informed and coordinated approach to addressing the concerns of 

people with disabilities and eliminating barriers to their active participation in community and 

family life. 

NCD plays a major role in developing disability policy in America. In fact, NCD originally 

proposed what eventually became the Americans with Disabilities Act. NCD’s present list of key 

issues includes improving personal assistance services, promoting health care reform, including 

students with disabilities in high-quality programs in typical neighborhood schools, promoting 

equal employment and community housing opportunities, monitoring the implementation of the 

ADA, improving assistive technology, and ensuring that those persons with disabilities who are 

members of diverse cultures fully participate in society. 

Statutory History 

NCD was initially established in 1978 as an advisory board within the Department of Education 

(P.L. 95-602). The Rehabilitation Act Amendments of 1984 (P.L. 98-221) transformed NCD into 

an independent agency. 

79