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A White Paper
Understanding the Role of an International Convention
on the Human Rights of People with Disabilities
An analysis of the legal, social, and practical
implications for policy makers
and disability and human rights advocates in the United States
National Council on Disability
June 12, 2002
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
Understanding the Role of an International Convention
on the Human Rights of People with Disabilities
This report is also available in alternative formats
and on NCD's award-winning Web site (www.ncd.gov).
Publication date: June 12, 2002
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The views contained in the report do not necessarily
represent those of the Administration as this and all NCD documents
are not subject to the A-19 Executive Branch review process.
National
Council on Disability
Members and Staff
Members
Marca Bristo, Chairperson
Kate Pew Wolters, First Vice Chairperson
Hughey Walker, Second Vice Chairperson
Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel-Diaz
Debra Robinson
Ela Yazzie-King
Staff
Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Martin Gould, Ed.D., Director of Research
Kathleen A. Blank, Attorney/Advisor
Gerrie Drake Hawkins, Ph.D., Program Specialist
Pamela O'Leary, Interpreter
Allan W. Holland, Chief Financial Officer
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Automation Clerk
Joan M. Durocher, Esq., Fellow
Acknowledgments
The National Council on Disability (NCD) wishes to
express its appreciation to Janet E. Lord, legal counsel and coordinator
of Human Rights Programs at Landmines Survivors Network, who was
commissioned by NCD to conduct research and to author this report.
NCD would also like to acknowledge the contributions of participating
individuals and organizations in the NCD International Convention
Educational Project, including Rosangela Berman-Bieler, president
of the United States International Council on Disabilities, and
Jerry White, executive director of Landmines Survivors Network.
Eric Rosenthal, executive director of Mental Disability Rights International,
provided invaluable overall guidance and advice in addition to reviewing
and providing commentary on drafts.
The NCD International Watch Advisory Committee coordinated
the development of this project: Joelle Balfe, consultant at NCD,
and Kathleen Blank, attorney advisor at NCD, contributed significantly
to the development of the manuscript and followed its completion
from beginning to end. Jeffrey Rosen, general counsel and policy
director at NCD, provided support and guidance at all stages of
the project. Katherine N. Guernsey, international law consultant
for Landmine Survivors Network, provided essential editorial assistance
and research.
Numerous individuals provided substantial feedback
on the complete manuscript or parts of it: Yerker Andersson, Ph.D.,
NCD International Watch facilitator; Zahabia Adamaly, Landmine Survivors
Network; Elaine Belmear, Landmine Survivors Network; Sylvia Caras,
People Who; Theresia Degener, professor of international law; Nancy
Flowers, human rights consultant; David Hawk, consultant; Diane
Richler, president-elect, Inclusion International; Javier Vasquez,
Pan American Health Organization; William Kennedy Smith, M.D., Center
for International Rehabilitation; Michael Sharpston, human rights
consultant; and Erica Shapiro Taylor, publications consultant. The
report is much stronger and more informed as a result of their comments.
Finally, NCD would like to express its appreciation for the participation
of all those present at its April 8, 2001, Summit on Human Rights
and Disability. The dialogue and specific feedback provided at that
meeting served to inform the content of this report in significant
ways.
Contents
I. Executive Summary
II. Introduction
A. The Global Human Rights Condition of People with
Disabilities
B. Purpose of the Paper
III. Background
A. Disability Law in the United States
B. Human Rights for People with Disabilities and
the International Human Rights System
i. The Emergence of International Human Rights
Law
ii. Addressing the Human Rights of Specific Populations
iii. International Human Rights Law for People
with Disabilities
iv. Proposals for an International Human Rights
Treaty for People with Disabilities
IV. Addressing the Human Rights of People
with Disabilities
A. A Paradigm Shift: Transforming "Needs" into Rights
i. Traditional vs. Contemporary Models of Disability
ii. Rights-based Approaches to Disability
B. Universality and International Human Rights Law
V. An International Convention on the
Rights of People with Disabilities
A. Transformative Participation in an International
Human Rights Treaty-Making Process
i. Raising Awareness about the Human Rights Condition
of People with Disabilities
ii. Building Coalitions of People with Disabilities
and their Allies Across Transnational Civil Society and Capacity
Building
B. Promoting Institutional Shifts through the Adoption
of an International Convention on the Rights of People with Disabilities
i. The UN Human Rights System
ii. The UN Specialized Agencies and Development
Institutions
iii. The Human Rights of People with Disabilities
within Human Rights Organizations
C. The Role of Legally Binding Obligations
i. Creating Legal Accountability
ii. Reflecting Latest Developments in Disability
Law and Policy
iii. Prompting Shifts in National Laws and Policies
VI. Adopting an International Convention:
Issues and Concerns
A. Strengthening the Advocacy Capacity of People
with Disabilities and their Allies
B. Ensuring Constructive US Participation
C. Combating Treaty Fatigue
VII. Recommendations and Future Directions
A. Principles for Participation in the Process of
Drafting an International Convention on the Rights of People with
Disabilities
B. Addressing Attitudes and Perceptions of People
with Disabilities in Law and Policy Initiatives
C. Raising Awareness and Building the Capacity of
Actors to Address the Human Rights of People with Disabilities
D. Principles to Support Full Participation in Society
by People with Disabilities
E. Human Rights Principles and Spheres of Human
Rights Protection for People with Disabilities
F. A Strong Treaty-Monitoring Mechanism
G. Future Directions in Coalition-Building
VIII. Conclusion
Appendix
Glossary of International Law Terms (recommended
pre-reading for those who do not have a background in international
law)
Mission of the National Council on Disability
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 non-discrimination,
people with disabilities are commonly the subjects of de jure and
de facto discrimination on a daily basis. This discrimination occurs
in a range of arenas, including the workplace, schools, health care
facilities, government, recreational facilities, and many more societal
contexts. As a result of discrimination, segregation from society,
economic marginalization, and a broad range of other human rights
violations, people with disabilities have consistently been excluded
from the decision-making fora where positive changes in law and
policy can be developed and implemented. While some governments
and societies have adopted a social inclusion and a rights-based
approach to disability issues, many more rely on charity models
of assistance or a narrow medical model that focuses on finding
medical "solutions" to limitations caused by a disability and ignores
the need to address the vast array of limitations created and imposed
by discrimination, exclusion, and ignorance.
Existing Protections
Although such domestic legislation as the Americans
with Disabilities Act (ADA) does indeed expand legal protections
for people with disabilities and open up opportunities for their
full participation in society, the promise of the ADA remains unfulfilled.
In his launching of the New Freedom Initiative in February 2001,
President George W. Bush acknowledged his commitment to "tearing
down the remaining barriers to equality that face Americans with
disabilities today" and recognized that "significant challenges
remain for Americans with disabilities in realizing the dream of
equal access to full participation in American society" to create
"a nation where no one is dismissed or forgotten." In the international
human rights legal framework, people with disabilities are, for
all practical purposes, invisible, despite the fact that all human
beings are entitled to the full panoply of human rights protections.
Disability is persistently marginalized as a human rights issue
within the United Nations system and in the work of international
non-governmental organizations, including human rights organizations.
Although disability has been specifically addressed in some existing
human rights documents that do add content to the human rights field,
such provisions are for the most part not housed in a treaty, nor
are they widely regarded as having attained the status of binding
law. Moreover, these documents have not effected integration of
disability into the program areas of most international institutions.
In countries where national legislation to protect the rights of
people with disabilities is particularly weak, or even non-existent,
self-advocacy efforts are further complicated by the lack of a globally
recognized set of standards.
Arguments in Favor of a Convention
The current effort to secure the adoption of an international
convention on the human rights of people with disabilities has much
to offer. The most significant advantages include (i) providing
an immediate statement of international legal accountability regarding
disability rights; (ii) clarifying the content of human rights principles
and their application to people with disabilities; (iii) providing
an authoritative and global reference point for domestic law and
policy initiatives; (iv) providing mechanisms for more effective
monitoring, including reporting on the enforcement of the convention
by governments and non-governmental organizations, supervision by
a body of experts mandated by the convention, and possibly the consideration
of individual or group complaints under a mechanism to be created
by the convention; (v) establishing a useful framework for international
cooperation; (vi) providing a fair and common standard of assessment
and achievement across cultures and levels of economic development;
and (vii) providing transformative educative benefits for all participants
engaged in the preparatory and formal negotiation phases and for
the public as countries consider ratification of the convention.
Whereas the provisions of an international human rights
convention for people with disabilities will serve to articulate
specific rights and provide machinery for monitoring compliance
with obligations, the transformative nature of the treaty-making
process itself can also generate an array of important benefits.
These benefits include raising the general public's awareness about
the human rights of people with disabilities; highlighting abuses
of those rights; further developing the knowledge-base of governmental
and non-governmental participants; providing the stimulus for extensive
programmatic developments; offering capacity-building opportunities
for disability groups as a result of increased global focus on their
issues; and improving data collection.
Future Directions
The momentum for the development of an international
convention on the human rights of people with disabilities already
exists, having been given impetus by the adoption of a UN General
Assembly resolution, initiated by Mexico, calling for "a comprehensive
and integral international convention to protect and promote the
rights and dignity of persons with disabilities." That step builds
on significant efforts undertaken in recent years by Ireland in
support of such a convention. For a convention to be truly effective,
it must represent the aspiration and experience of the people it
seeks to protect. Consistent with the United Nations "Standard Rules
on the Equalization of Opportunities for People with Disabilities,"
people with disabilities should be recognized as having a right
to participate in drafting legal standards that will affect their
human rights. For the momentum
generated by the United Nations General Assembly to be productively
maintained and used, the process by which the convention is developed
must be fully participatory and inclusive of people with disabilities,
including the most marginalized groups. Different disability groups
have somewhat different experiences and legal needs, and the full
participation of a broad array of consumer-led disabilities groups--including
organizations of people with mental, physical, and sensory disabilities--is
essential at the international level. People with disabilities must
ensure that the provisions of a treaty consist not of vague non-discrimination
concepts but of clear principles that seek to recognize and counter
multiple forms of discrimination and empower people with disabilities
in such areas as public life and political representation; participation
in decision-making in all areas, including, but not limited to,
legal and administrative contexts; and access to education, health
care, and sport and culture. Members of the global disability community
have much to gain from the active participation of their American
counterparts, and, in turn, Americans stand to benefit from lending
their voice to the convention dialogue.
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 disenfranchised and economically disadvantaged
groups, people with disabilities generally have little or no influence
in the public policy process or the decisions that affect their
daily struggle for survival.
Driving the legal and political decisions that result
in this human rights crisis is the underlying attitude that people
with disabilities have intrinsically less value because of their
disabilities. That attitude is a double-edged sword. Not only does
it influence the social and legal structures that affect--and often
disempower--people with disabilities, but it has a direct impact
on the people with disabilities themselves. Social psychologists
have documented the manner in which oppressed groups who have been
systematically denied power and influence in society often internalize
negative messages about their abilities and come to accept them
as their "truth." (3) Members of
the disability community have illustrated the impact of this cycle
in compelling personal accounts of disability oppression.
(4) Internalized oppression works in combination with
economic and social contexts and serves to restrict options that
people generally perceive as open to them and legitimate for them.
(5)
Ann Elwan, in her World Bank-sponsored study on poverty
and disability, estimates that people with disabilities may account
for one out of every five of the world's poorest people. She finds
the following:
Disabled people have lower education and
income levels than the rest of the population. They are more likely
to have incomes below poverty level than the non-disabled population,
and they are less likely to have savings and other assets. ...The
links between poverty and disability go two ways--not only does
disability add to the risk of poverty, but conditions of poverty
add to the risk of disability. (6)
Because discrimination, lack of access to the built
environment, and other factors frequently exclude people with disabilities
from the workforce, they are unable to contribute to their own financial
security, and that puts them in danger of becoming impoverished,
if they do not live in poverty already. In all nations, people with
disabilities earn less from paid employment than their counterparts,
but even in countries with legal protections against employment
discrimination, most people with disabilities are unemployed. In
the United States, workplace harassment of people with disabilities
is commonplace, and biases can be particularly severe with regard
to people with "hidden disabilities," such as mental disabilities.
(7) Pervasive ignorance among employers frequently leads
to people with disabilities being rejected for employment because
potential employers mistakenly assume these potential employees
will not be able to fulfill job requirements or reasonable accommodations
will be extensive and costly. (8)
Because people who are unemployed cannot contribute tax revenues
to the government, this situation reinforces the stereotype of people
with disabilities as a burden on society. Consequently, programs
to support people with disabilities, where they exist at all, are
commonly based on the "charity" model of assistance over more empowering
and positive models that can help to break, rather than reinforce,
the cycle of poverty and dependence. (9)
A person with a disability who is also member of another
disadvantaged group will frequently find himself/herself subject
to discrimination on multiple levels. For example, studies show
that people with disabilities are less likely than others to receive
education and often leave school with fewer skills and qualifications.
(10) For disabled women and girls, however, as research
undertaken by the Economic and Social Commission for Asia and the
Pacific (ESCAP) indicates, gender discrimination presents additional
obstacles to educational opportunities. (11)
The problem of compound discrimination for people with disabilities
can be found in every country of the world regardless of its economic
or political situation. Lift Every Voice, a report by the
National Council on Disability on issues that affect people with
disabilities from diverse racial and cultural backgrounds in the
United States, reported that "people with disabilities from diverse
cultural communities not only experience poverty and disability
at a disproportionately higher rate, they also face language, cultural
and attitudinal barriers that significantly impede their access
to resources and accommodations." (12)
In developing nations, the problem is rooted as much in the actions
of developed nations as in local conditions and attitudes. Despite
the fact that 51 percent of people with disabilities are women,
"international development programmes rarely address the needs of
disabled women or include them in community development ventures."
(13) A report by Mobility International USA on gender
and disability found that "most [development] organizations do not
collect data showing the extent to which people with disabilities,
in particular women and girls with disabilities, participate in
the development assistance process." (14)
The lack of interest in these issues by leading institutions funded
and led by developed nations sets a poor example for countries that
rely on the aid of developed nations, especially emerging democracies
and societies struggling to rebuild their social structure in a
post-conflict setting.
The status of people with disabilities is marked not
only by exclusion and lack of equal access to resources--in other
words, the absence of attention to their rights--but also by deliberate
and active measures taken against them. Some such measures are legally
supported elements of a strategy to "deal" with disability, such
as involuntary institutionalization. People with disabilities are
subject to a variety of human rights abuses, including forced abortion
and sterilization (15) and psychiatric
drugging. (16) Other actions are
tolerated or overlooked despite being illegal, such as physical
and mental abuse and gross neglect. Violence against people with
mental disabilities in institutions insulated from public scrutiny
often goes unaddressed. (17) For
example, in Kosovo, Mental Disability Rights International (MDRI)
found that despite extensive international funding for civil society
and human rights, no program has been established to protect the
rights of women or other vulnerable groups from sexual and physical
abuse in institutions. (18) Other
reports issued by MDRI describe the "inhuman and degrading conditions"
of people in institutions in Uruguay, Hungary, Russia, and Mexico.
(19) In Mexico, MDRI cites the "unhygienic conditions
of detention"; the excessive use of "physical restraints"; the lack
of adequate food, water, clothing, and medical care; the "lack of
privacy and dignity" for patients; and even instances of patients
freezing to death. (20) To be sure,
such conditions are by no means limited to the countries cited in
these referenced reports.
An improvement in the human rights condition of people
with mental, physical, and sensory disabilities is urgently needed
in all nations, not only developing nations or nations devastated
by years of conflict. Even in the most technologically advanced
nations, people with disabilities confront the most basic violations
of their rights in attempting to exercise their right to vote. In
the 2000 elections in the United States, in at least 18 states,
disabled voters found inaccessible polling places, confusing ballots,
and a lack of privacy and independence in voting.
(21) For instance, at a polling station in New York, disabled
voters found access ramps "locked and unavailable,"
(22) while in California, a lack of portable voting booths
forced one disabled voter to have his personal care assistant vote
on his behalf, thus depriving him of his right to independence and
privacy. (23) In other cases, inadequate
training of polling staff led to violations of disabled voters'
rights. Some staff denied the existence of voter accessibility laws
(saying instead that disabled voters could use the absentee voting
process), (24) and others made no
attempt to preserve the privacy of voters they assisted.
(25) Whereas an increasing number of nations now promise
equality of opportunity for people with disabilities, very few,
if any, come close to delivering it. This failure severely restricts
the ability of some 500 million people around the world to contribute
fully to the civil, political, economic, social, and cultural lives
of their communities.
Legal mechanisms, both national and international,
to protect and promote the rights of people with disabilities, are
generally inadequate. Worldwide, people with disabilities continue
to receive disparate treatment at the hands of the law. Of 189 UN
Member States, only some 40 have any form of anti-discrimination
law for persons with disabilities, (26)
and in those that do, much work remains to be done to implement
and enforce the provisions on the books. (27)
Where national laws and policies have sought to address the concerns
of people with disabilities, all too often the language and approaches
adopted have served to further reinforce stereotypical perceptions
of people with disabilities as passive, sick, dependent, and in
need of medical cures and charity.
The human rights condition of people with disabilities
has real application and relevance to all citizens, not only the
international community, scholars, or those already familiar with
international law and policy. The affirmation and implementation
of human rights principles for all minority groups form the foundation
of a just society, both here in the United States and in countries
around the world. In fact, these principles are vital to the peace
and prosperity of every society. It has become increasingly apparent
that human rights issues of concern to people with disabilities
play a critical part in the quest to achieve international peace
and security and the promotion of democracy. Enhancing the status
of disenfranchised minorities, of which people with disabilities
constitute a large group, will contribute to the realization of
the three pillars of Secretary General Kofi Annan's vision for the
UN in the next century, namely, (i) eradicating poverty; (ii) preventing
deadly conflict; and (iii) promoting democracy.
(28) These three concepts are also at the core of US foreign
policy. Put simply, the eradication of poverty will not be achieved
absent a concerted effort to reach all vulnerable groups;
the prevention of deadly conflict cannot happen without the full
participation of war-wounded citizens and people with disabilities;
and the promotion of democracy will be incomplete without the full
inclusion of all human beings with rights, irrespective of their
minority status.
Unfortunately, interested governments and the collective
voice of people with disabilities have had very limited success
in placing disability rights onto the international human rights
agenda. This contrasts with other specified groups, such as racial
or ethnic minorities, women, children, and indigenous peoples, who
have succeeded in so doing, thereby drawing attention and responses
to human rights abuses specific to them at the national and international
levels. Clearly, the absence of any international treaty specifically
addressing the rights of persons with disabilities has contributed
to the invisibility of disability issues and disability rights on
the agenda of international institutions and programs. As a result
of that absence, efforts to leverage resources and draw attention
to the rights of people with disabilities have been largely
ineffective.(29)
Despite their marginalized and disempowered status,
people with disabilities and their grassroots organizations are
engaging in the struggle for their inclusion in society and participation
in decision-making arenas. People with disabilities in both the
developed and developing world are themselves advocating for equal
access to employment, health care, transport, housing, education,
and culture and are reporting long untold stories of violence and
abuse. On the international level, the current effort within the
United Nations to draft an international convention on the rights
of people with disabilities has the potential to focus attention
on the lives of people with disabilities across the globe. Moreover,
that effort can reveal the scope of a widespread human rights crisis
and the valuable contributions the disability community has to offer
both the convention process and global society. The treaty development
process and the resulting legal standards can bring to the forefront
of international policy a long-neglected area of human rights practice.
B. Purpose of the Paper
The purpose of this paper is to analyze how the support
and participation of American policy makers and organizations representing
people with disabilities in the drafting of an international human
rights treaty specifically addressing disability rights will serve
disabled people and their allies around the globe. This paper considers
the important role that the United States and American disability
organizations have to play in advancing the human rights of people
with disabilities through participation in any forthcoming international
human rights treaty process. At the same time, issues of concern
regarding the challenges associated with any international human
rights treaty process are recognized and addressed. The paper concludes
with some suggested next steps and recommendations for consideration
as the effort within the United Nations to draft a treaty on the
rights of people with disabilities gets underway.
III.
Background A. Disability Law in the United
States
Enacted in 1990, the Americans with Disabilities Act
(ADA) was the result of broad-based advocacy efforts by members
of the disability community and supporting members of Congress.
It constitutes the federalization of the legal rights of people
with disabilities, which had previously been included (to the extent
that they were addressed at all) in state legislation and limited
federal legislation. (30) Whereas
previous legislation tended to focus on institutions that received
government funding, the ADA extended the legal coverage to private
entities, thus greatly expanding the legal protection of people
with disabilities, as well as opening up many more opportunities
for them in such environments as the workplace. The ADA is particularly
notable for its inclusion of certain innovative concepts, such as
the principle of "reasonable accommodation," which requires an employer
to accommodate a qualified employee, unless doing so would cause
significant difficulty or expense. (31)
In his launching of the New Freedom Initiative in
February 2001, President George W. Bush acknowledged his commitment
to "tearing down the remaining barriers to equality that face Americans
with disabilities today" and recognized that "significant challenges
remain for Americans with disabilities in realizing the dream of
equal access to full participation in American society" to create
"a nation where no one is dismissed or forgotten."
(32) Thus, despite the successful passage of the ADA,
its incorporation into the US legal system as well as public consciousness
has not been without problems. The results of a 1998 study reveal
that only 54 percent of American adults with disabilities have heard
of the ADA. Notwithstanding the social and legal benefits achieved
as a result of the work of disability advocates in the United States,
the need to continue efforts to raise awareness and educate is tremendous.
(33)
Even with the passage of this path-breaking legislation,
lawsuits brought under the ADA have been difficult to win. Employers
prevailed in 93 percent of cases reaching the trial court level
from 1992 to1998 and 84 percent of the time on appeal.
(34) According to the Equal Employment Opportunity Commission
(EEOC), disability-based harassment ranks among the fourth most
frequent cause for claims behind sexual harassment, racial harassment,
and harassment claims based on national origin.
(35) Thus, while the ADA has been a crucial catalyst for
social change, much remains to be done, according to Richard Scotch:
[I]n the first decade of implementation
ADA appears to have fallen short of its optimistic goal to change
fundamentally the lives of most Americans with disabilities. In
the aggregate, people with disabilities are still as disproportionately
underemployed as before ADA's enactment, and their incomes are still
significantly below those of people without disabilities. While
survey data implies that most Americans are supportive of ADA's
goal of inclusion and non-discrimination, ample anecdotal evidence
suggests that physical barriers, individual attitudes, and restrictive
institutional processes continue to constrain most Americans with
disabilities. (36)
In other words, there are active forms of discrimination,
as well as "neutral barriers," that inhibit disabled people's enjoyment
of their human rights.
The process of developing, implementing, and monitoring
an international convention on the human rights of people with disabilities
will serve to engage a wide variety of actors in analyzing and identifying
the shortcomings of national law models. Both the development of
a treaty and its implementation provide opportunities for stakeholders
to assess valuable domestic models of disability law and policy,
including, but not limited to, the ADA. As a result of their national
experience, people with disabilities and disability advocates in
the United States have much to contribute to the international treaty-making
process and can help their counterparts in other countries to achieve
their national vision, which in many cases is inspired by the promise
of the ADA. The failure of the American disability community to
engage in this process will come at a heavy cost: not only will
others miss the benefit of their experience, but also the community
will be left out of a process that has great potential to support
advocacy efforts related to the ADA. In sum, engagement in the process
stands to support and invigorate US domestic initiatives that will
strengthen ADA-focused advocacy. The American disability community
ignores the international human rights process at its peril.
B. Human Rights for People with Disabilities and the
International Human Rights System
i. The Emergence of International Human Rights Law
The Universal Declaration of Human Rights (UDHR),
adopted by the United Nations General Assembly in 1948, signaled
the emergence of modern international human rights law.
(37) In its expression of general human rights principles
in the area of civil, political, economic, social, and cultural
rights, the UDHR emphasizes its applicability to all people, underscoring
that "[a]ll human beings are born free and equal in dignity and
rights, (38) ... [a]ll are equal
before the law, and [all] are entitled without any discrimination
to equal protection of the law." (39)
Although the UDHR is a declaration and not an international treaty,
it is now widely recognized as part of customary international law
and therefore possesses legal force.
The adoption of the UDHR was followed by the drafting
of two international treaties that, together with the UDHR, make
up the International Bill of Human Rights and the core of modern
international human rights law. In 1996, the UN General Assembly
opened for signature the International Covenant on Civil and Political
Rights (ICCPR) (40) and the International
Covenant on Economic, Social and Cultural Rights (ICESCR).
(41) These treaties, ratified as of February 2002 by 148
and 145 Member States respectively, legally oblige States Parties
to implement their provisions subject to any qualifying reservations.
While the International Bill of Rights provides protections applicable
to all people, no explicit mention is made of discrimination on
the grounds of disability in these instruments.
(42) As Professor Theresia Degener has emphasized, where
disability is addressed in the International Bill of Rights, "it
is only in connection with social security and preventive health
policy," (43) and not as a comprehensive
human rights issue.
Thus, all human beings, regardless of what physical,
sensory, or mental abilities they may have, are entitled to the
same human rights as a matter of international law, yet people with
disabilities have remained largely invisible in human rights law
and practice and violations and egregious abuses against them all
too often go unnoticed, unreported, and, consequently, unaddressed.
Although the International Bill of Rights and other international
human rights instruments proclaim that all human beings are born
free and equal in dignity and rights, millions of people with disabilities
face daily assaults on their freedoms and suffer indignities that
violate their most basic human rights.
ii. Addressing the Human Rights of Specific Populations
Early developments in international human rights law
served to bolster the concept that human rights standards and the
violation of those rights by a State against its own nationals are
indeed a matter of international concern, thereby discrediting claims
to the contrary. It was soon discovered, however, that additional
legal measures were required in order to address human rights abuses
experienced throughout the world by individuals belonging to particular
social, ethnic, religious, and other groups. Beginning in the mid-1960s,
the United Nations began to recognize the vulnerability of certain
populations to human rights abuses that were not addressed with
any degree of specificity in existing international human rights
law. Well-coordinated international campaigns led to the adoption
of a number of specialized human rights instruments to address gaps
in the law and establish permanent mechanisms for more effective
monitoring of violations. These instruments include, among others,
the UN Convention on the Elimination of All Forms of Racial Discrimination,
(44) the UN Convention on the Elimination of All Forms
of Discrimination Against Women, (45)
the UN Convention on the Rights of the Child,
(46) the International Labour Organization Convention
Concerning Indigenous and Tribal Peoples in Independent Countries,
(47) and the International Convention on the Protection
of the Rights of All Migrant Workers. (48)
These treaties create legal protections that address
in concrete terms the social, political, and cultural circumstances
that impact the human rights conditions of these populations. Most
significantly, they frequently provide for the establishment of
permanent treaty-monitoring bodies composed of recognized experts
in the field of human rights and endowed with the authority to scrutinize
and promote compliance with treaty provisions. The process of drafting
these focused conventions has served to raise awareness and build
capacity among both governments and non-governmental organizations
concerned with the human rights issues pertaining to these various
populations. Once the treaties have entered into force, they provide
a forum for the consideration of human rights issues insofar as
they pertain to the treaty and serve as a focal point for the human
rights initiatives of governments and non-governmental organizations,
spurring developments in national laws and highlighting best and
worst practices.
iii. International Human Rights Law for People with
Disabilities
The evolution of international human rights law as
it applies to people with disabilities has proceeded along an entirely
separate and, unfortunately, less progressive course. During the
1970s, the Declaration on the Rights of Mentally Retarded Persons
(49) and the Declaration on the Rights of Disabled Persons
(50) were the first international human rights instruments
to embody human rights principles relating specifically to people
with disabilities. These were significant steps in terms of raising
awareness about the human rights of people with disabilities. They
came under heavy criticism by the disability community, however,
for their expression of outmoded medical and charity models of disability
that serve to reinforce paternalistic attitudes about people with
disabilities. Thus, for example, the 1971 Declaration on the Rights
of Mentally Retarded Persons was criticized for qualifying the scope
of rights for people with intellectual disabilities both in providing
that "the mentally retarded person has, to the maximum degree of
feasibility, the same rights as other human beings"
(51) and in terms of its goal for societies, which is
to promote "their integration as far as possible in normal life."
(52)
Although further progress was made in the development
of international standards relating to disability, these efforts
did not culminate in legally binding measures. These efforts included
the United Nations Decade of Disabled Persons (1982-1993), during
which the World Programme of Action Concerning Disabled Persons
(53) and two new international human rights instruments
pertaining to disability were adopted by the UN General Assembly.
In 1993, the UN Standard Rules on the Equalization of Opportunities
for Persons with Disabilities were adopted as a blueprint for policy-making
and provided a basis for technical and economic cooperation among
States. The UN Standard Rules establish a monitoring mechanism through
the appointment of a Special Rapporteur who reports to the Commission
on Social Development. (54) The
Principles for the Protection of Persons with Mental Illnesses and
the Improvement of Mental Health Care (MI Principles) were adopted
in 1991 (55) and set forth principles
that can serve as a common standard for the evaluation of the implementation
of human rights practices in national mental health systems.
(56) These documents add content to existing human rights
provisions housed in the general instruments. Nonetheless, the documents
are not housed in a treaty, nor are they widely regarded as having
attained the status of customary international law.
(57) Most significantly, the UN Standard Rules and the
MI Principles do not establish permanent bodies to monitor compliance
with their provisions. Thus, in spite of the progress made, governments
and non-governmental organizations are left without any permanent
and adequately resourced human rights body devoted to monitoring
human rights violations against people with disabilities and without
effective means to promote further developments in both national
and international law.
The prevailing opinion of professionals working in
the fields of disability and international human rights law is that
the current international human rights framework is, in the context
of disability, deficient in two fundamental respects. First, without
specific attention and language devoted to the most common practices
leading to the violation of human rights for people with disabilities
in any single international human rights treaty, many governments
remain unaware of their legal obligations.
(58) Consequently, the international human rights framework
rarely is used to protect people with disabilities. Second, as a
recent study demonstrates with persuasive force, the existing human
rights treaty-monitoring bodies established by a variety of international
human rights treaties only marginally address, if at all, the routine
human rights violations to which people with disabilities are subjected.
(59)A notable lack of jurisprudence on the rights of people
with disabilities exists as a matter of international human rights
law. (60)
An additional factor that reinforces the failure of
existing human rights mechanisms to address the human rights of
people with disabilities is the lack of capacity among international
human rights organizations and the disability community to use the
human rights machinery in advocacy for disability rights. Organizations
devoted to the protection of human rights have generally failed
to focus on abuses against people with disabilities or to develop
the capacity to investigate and report on disability-based human
rights violations. In some instances, well-meaning humanitarian
assistance organizations have unwittingly perpetuated human rights
abuses against people with disabilities through "charity" programs
that serve to perpetuate discriminatory programs that ultimately
disempower people with disabilities. (61)
Against this background, new proposals for the adoption
of an international treaty addressing the rights of people with
disabilities are currently underway. The effort is not to secure
special privileges or to reinforce a segregated treatment of people
with disabilities through the establishment of a separate treaty.
Rather, the aim is to secure unequivocal protection for the fundamental
human rights and freedoms of people with disabilities and to acknowledge
their legitimate membership in the international human rights system.
iv. Proposals for an International Human Rights Treaty
for People with Disabilities
Support for an international human rights treaty for
people with disabilities is evidenced by the numerous calls for
such an instrument by actors within the global disability community.
During March 2000, participants (62)
at the World NGO Summit on Disability convened in Beijing to discuss
a possible treaty delineating the human rights of people with disabilities.
The declaration that issued from that meeting urged "all heads of
state and government, public administrators, local authorities,
members of the United Nations system, people with disabilities,
civic organizations that participate in the development process,
and socially responsible private sector organizations, to immediately
initiate the process for an international convention."
(63)
In calling for such a treaty, the participants highlighted
the following as areas of specific concern to be addressed by the
treaty:
(a) Improvement of the overall quality of life of
people with diverse disabilities and their upliftment from deprivation,
hardship, and poverty.
(b) Education, training, remunerative work, and
participation in decision-making processes at all levels.
(c) Elimination of discriminatory attitudes and
practices, as well as information, legal, and infrastructural
barriers.
(d) Increased allocations of resources to ensure
the equal participation of people with disabilities.
(64)
The momentum for a treaty was continued when, on November
28, 2001, the UN General Assembly adopted by consensus a resolution
initiated by Mexico calling for the establishment of an Ad Hoc Committee
mandated to elaborate "a comprehensive and integral international
convention to protect and promote the rights and dignity of persons
with disabilities, based on the holistic approach in the work done
in the field of social development, human rights and non-discrimination."
(65) This step builds on the efforts of other countries
in recent years, most notably Ireland, to develop support within
the United Nations for a treaty on the rights of people with disabilities.
(66)
The ensuing process presents both challenges and opportunities
that can lead to the adoption of a comprehensive convention on the
rights of people with disabilities in a fully participatory process
that reflects latest developments in international law and policy
and establishes effective machinery for monitoring compliance with
human rights obligations. The failure of the American disability
community to engage in the development of international human rights
law concerning people with disabilities will jeopardize the success
of the current treaty-initiative and compromise future implementation
efforts. Members of the global disability community have much to
gain from the active participation of their American counterparts
and, in turn, Americans stand to benefit from lending their voice
to the convention dialogue.
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 it a personal matter and "treat" the condition and the person
with the condition rather than "treating" the social processes and
policies that constrict disabled people's lives.
(68)
These models ignore the fact that the problems reside
not in the individual, but in the "social, attitudinal, architectural,
medical, economic, and political environment"
(69) in which he or she lives. Furthermore, such models
do not adequately define the important and appropriate role of the
medical community, which is to promote human health for all people
and to provide rehabilitation and support services in the best interests--and
with the participation and informed consent--of the individual.
Largely because of activism of people with disabilities
themselves, society has increasingly realized that disability is
not an unusual or tragic situation that happens to a pitiable few.
Scholarship in the field of disability studies has further supported
the paradigm shift away from the medical model of disability wherein
disabled people are sick and in need of a cure. Disability, under
the new model, is seen as a social construction according to which
society, not the person with a disability, requires
adaptation. (70) The push for a
cultural shift in thinking about disability, promoted by American
consumer-based disability organizations as well as international
disability organizations, has led to the documentation of interesting
examples of societal inclusion or adaptation in response to disability.
Thus, in Nora Groce's leading study, Everyone Here Spoke Sign
Language, (71) the community
in Martha's Vineyard, Massachusetts, learned sign language to communicate
with deaf members, thereby creating adaptation and accommodation.
For indigenous communities, such as the Punan Bah of Sarawak and
the Maasai of Kenya, people with disabilities are regarded as full
participants in their societies and enjoy acceptance, as opposed
to stigma and marginalization. (72)
The social model of disability captures the insight
that full participation in society for people with disabilities
will be achieved not by "fixing" people, but by breaking down the
barriers that prevent realization of equal opportunity, full participation,
and respect for difference. Under this view, empowerment requires
the undoing of negative social constructions in such a way that
people with disabilities see themselves as having the capacity and
the right to participate fully in society and influence decision-making.
In turn, others in society will likewise regard them as so endowed.
Reframing disability in terms of social processes under the social
model requires a broadened understanding of the sources of challenges
faced by people with disabilities and a more balanced perception
of how medicine, rehabilitation, and general health care fit into
the equation, a perspective that many physicians and other health
service providers do indeed understand. This reframing requires
close scrutiny of all actors and processes, leading to a complete
reorientation of the interaction between people with disabilities
and society.
The insights provided by the social model of disability
are now being applied to practical issues facing disabled people
in terms of public policy, law, and community inclusion. As the
UN Standard Rules have embraced the social model of disability,
so too should an international convention on the rights of people
with disabilities. A human rights framework that embraces a social
model of disability has a greater capacity to identify and resolve
those fundamental aspects of society that continue to oppress and
exclude. (73)
ii. Rights-Based Approaches to Disability
The American civil rights movement involved a claiming
of basic human rights that should be accorded to all people--the
right to a decent education; the right to vote; the right to due
process; the right to participate in the life of the community,
whether through eating at a restaurant or attending a movie theater,
without the threat of violence or harassment. The movement was not
seeking "special rights," only basic rights grounded in the concepts
of equality, non-discrimination, and human dignity.
The disability movement, both within the United States
and internationally, is grounded in the same fundamental concepts
and asks not for "special rights," but instead moves to embrace
rights already enjoyed and to a large extent secured by non-disabled
people. It emphasizes that "[w]e are all targets for inequitable
and unjust treatment--disabled people often to a greater degree
than others. Still, the struggle for people with disabilities is
of the same nature as for all those who do not have the access to
social goods that is their due." (74)
The current call for attention to the human rights of people with
disabilities is a natural continuation of the civil rights tradition
and has emerged to challenge existing notions of human rights that
have frequently trivialized and ignored the lives of people with
disabilities.
A human rights approach has the power to transform
the needs of people with disabilities into rights they can claim.
Grounded in basic concepts of justice and human dignity, human rights
enable people to reconceive their basic needs as a matter of rights
to claim, rather than charity to receive. Furthermore, rights-based
concepts stand to inform our thinking beyond strictly legal applications.
As an example, in the development context, Peter Coleridge has emphasized
how traditional models of development have often characterized people
living in poverty as passive victims and recipients of aid and charity.
A rights-based awareness of disability, by contrast, compels significant
shifts in thinking about disability and development.
(75) In reorienting the focus from needs to rights, people
with disabilities may be recognized as active rights-bearing individuals
who are participants in their own development and who should be
consulted accordingly in development decision-making.
(76)
The adoption of a human rights-based approach has
already led to tangible results for many other disenfranchised groups.
The American civil rights movement, the South African anti-apartheid
movement, and the international women's rights movement have all
framed their claims in rights-based language, securing significant
success in national legal reform initiatives.
(77) During the last decade of apartheid in South Africa
for example, human rights organizations initiated a human rights-based
public education program in order to encourage the development of
new legal strategies to challenge existing apartheid laws. Training
in international human rights law was implemented for judges and
lawyers. This training led to the invocation of international human
rights treaty standards in the national legal system.
(78) Ultimately, both activists and legal scholars sought
to challenge the apartheid legal order on the basis that it violated
international human rights treaty standards. This new culture of
human rights led to the incorporation of international human rights
norms into legislation, the Interim Constitution of 1993, and the
1996 Constitution. Thus, the use of human rights norms in South
Africa culminated in the comprehensive incorporation of international
human rights standards into domestic law and policy.
The framework of human rights is not only useful in
efforts to lobby for legislative and policy changes but also provides
an important tool for grassroots groups to organize around disability
issues. Fundamental human rights principles accorded to each and
every person provide disabled people with a vocabulary for describing
violations of those rights as well as for describing impediments
to the full realization of those rights. By framing their concerns
in human rights terms, disability advocates gain access to important
decision-makers within the international human rights system, as
well as to national and local officials. Thus, an international
convention on the rights of people with disabilities would help
give the global disability community a tool with which to recognize
and advocate for their rights and would press for consistency in
law and policies both locally and nationally. A major challenge
for governments initiating the call for an international treaty
on the rights of people with disabilities will be to secure the
active participation of people with disabilities in all stages of
treaty development and implementation. That requires, among other
things, adequate resources for international and regional meetings
and careful attention to a range of accessibility issues in connection
to such gatherings.
B. Universality and International Human Rights Law
International human rights law demands respect for
the full dignity of every human being. Part of the strength of an
international treaty on the rights of people with disabilities will
be derived from its universality. International standards make unequivocal
the fact that the human rights of people with disabilities are not
culturally bound and are in fact intrinsic to all nations (though
culture is not irrelevant in the practice of human rights).
The significance of this point should not be underestimated in an
international environment in which law reform initiatives regarded
as linked exclusively with American interests are viewed with distrust
or even outright hostility. To be sure, future attempts to generate
law reform, whether in the constitutional, fraud and corruption,
criminal procedure, administrative law, or human rights spheres,
need to be ever mindful of this and should therefore seek to work
change through international channels. Moreover, international human
rights treaties offer an appropriate vehicle for the wide dissemination
and translation of international standards into local languages
and are therefore of great practical significance to use as tools
for national law and policy change.
The adoption of a treaty has much to commend it in
terms of crafting a durable strategy for protecting the human rights
of people with disabilities. The articulation of human rights principles
for people with disabilities in a universally applicable treaty
fully complements Irving Zola's persuasive call for the "universalization"
of disability policy. Zola argued for "policies that recognize that
the entire population is 'at risk' for the concomitants of chronic
illness and disability," (79) highlighting
that "[t]he issue of disability for individuals ... is not whether
but when, not so much which one, but how many and in what combination."
(80) In other words, the notion of universalism as it
applies to disability policy calls for the broadest possible approach
to inclusion and equality of opportunity, such that disability policies
are understood to benefit all human beings across the vast
range of human variation. This approach supports and is supported
by the theory of universal design, which promotes changes in the
built environment for the benefit of all.
(81) An international human rights treaty, both in its
development and application, has real potential to embody the goals
of a universal disability policy.
In sum, the current initiative to draft an international
convention on the rights of people with disabilities presents the
opportunity to convey within the framework of international law
that a core group of disability rights transcend any particular
culture and society and are therefore of universal importance and
concern. At the same time, a treaty provides the appropriate framework
for incorporating principles of American disability law that have
yet to find a secure place in the international legal system. Thus,
although the principle of reasonable accommodation has been reflected
in a General Comment of the International Covenant on Civil and
Political Rights, it is not a principle that is explicitly referenced
in any of the main international human rights documents.
(82) Little guidance exists in international law on the
range of issues relating to accessibility that have a significant
bearing on the enjoyment of so many fundamental human rights and
freedoms. An international human rights treaty would be in keeping
with legal and policy approaches that recognize the need to add
specific content to well-established human rights principles that
do not elaborate on their application to people with disabilities.
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 variety
of actors. (84) Such fora serve
to legitimize human rights issues and bring together unprecedented
numbers of advocates, providing unique opportunities for information
sharing, discussion of common concerns, and building relationships.
The participation of disability organizations in the development
of an international treaty on the human rights of people with disabilities
will ensure their contribution to building the global knowledge
base. (85) The process will provide
numerous avenues for NGOs to provide information about the nature
and scope of human rights violations against people with disabilities,
as well as to develop strategies for addressing these violations.
NGOs have devised increasingly sophisticated and creative methods
to use the preparatory and conference phases of the treaty-making
process to further their goals. For instance, Disabled Peoples'
International (DPI) Women's Programme initiated a campaign to voice
their concerns regarding the increasing use of eugenic health policies
and practices, such as forced abortion and sterilization, as a part
of their participation in the Beijing process. A common strategy
has also been the use of peoples' hearings and tribunals in which
survivors of human rights abuses bear witness to their experiences.
(86) Additionally, conferences have provided the opportunity
for NGOs to engage in media workshops in which participants learn
to monitor the media and acquire media literacy skills.
(87) These and other activities serve as a potent catalyst
for human rights advocacy at all levels and will provide unique
and important occasions for disability organizations to raise awareness
and build skills.
Through participation in the treaty-making process,
engaged governments can be prompted to focus on disability issues,
and the knowledge gained can be translated into action through law
and policy reform, public-education programs, and other attitude-changing
initiatives. A treaty process provides governments the chance to
take stock and evaluate existing legal and policy approaches at
the domestic level in addition to sharing with foreign counterparts
their own domestic experience.
Similarly, intergovernmental organizations can be
prompted by an international campaign to take action to gather and
disseminate information on topics related to disability and to change
their programming to better address disability issues. It is now
standard within international organizations to provide some kind
of institutional response in support of major international conferences
on human rights issues. Thus, the World Bank expressed its institutional
support for the 2001 World Conference against Racism by holding
an event in the atrium of its main complex at headquarters, thereby
contributing to the awareness-raising efforts about the impact of
racism on poverty. Private actors, such as the media, can also be
motivated in following the treaty-making process to portray the
issues and affected populations in a manner that does not serve
to buttress and reinforce inaccurate stereotypes. That is a matter
of fundamental concern given the recognition by the disability community
that the portrayal of people with disabilities in popular culture
and the media supports myths of dependency and inability.
(88)
An effective international human rights treaty will
capitalize on the transformative benefits of the treaty-making process
by implementing provisions that seek to maintain the momentum developed
during that preparatory period. Past experience shows that treaties
are an impetus for the development of human rights education materials.
(89) Education and awareness generated about disability
and the human rights of people with disabilities will not and should
not end with the adoption of an international treaty and may indeed
be addressed in the text of an international convention on the human
rights of people with disabilities. Thus, in international treaties
relating to the protection of workers, education and training in
relevant issue areas are addressed in treaty provisions.
(90) For example, the International Convention on the
Elimination of All Forms of Racial Discrimination, a treaty to which
the United States is a party, provides in Article 7 that States
Parties "undertake to adopt immediate and effective measures, particularly
in the fields of teaching, education, culture and information, with
a view to combating prejudices which lead to racial discrimination
and to promoting understanding, tolerance and friendship among nations
and racial or ethnic groups, as well as to propagating the purposes
and principles of the Charter of the United Nations, the Universal
Declaration of Human Rights, the United Nations Declaration on the
Elimination of All Forms of Racial Discrimination, and this Convention."
(91) Similarly, many international environmental agreements
now include provisions requiring States to improve public education
and awareness on environmental matters and to give due publicity
to matters of environmental importance. (92)
These are important precedents for those engaged in the drafting
process for a treaty on the rights of people with disabilities given
that education and awareness are core components of all disability
advocacy.
Two main obstacles to raising awareness about the
human rights condition of people with disabilities relates to the
insufficient credible documentation on human rights abuses against
people with disabilities and the dearth of statistical information
and indicators about disability. The establishment of a strong treaty-monitoring
body within the framework of a convention on the rights of people
with disabilities mandated to review and act on State reports, individual
and group complaints, and reports submitted by non-governmental
organizations. A permanent, sufficiently resourced treaty-monitoring
body will mark a new beginning in an important new area of human
rights practice that requires strengthening.
In addition, a treaty provides the opportunity to
set up a structure for more cost-effective and relevant data gathering
and assessment of disability, which remains scarce, random, and
inadequate for systematic analysis of disability issues. There is
widespread consensus for the need to improve disability-related
data collection and its use. (93)
The formulation of guidelines on data collection and assessment,
or the establishment of a treaty-based body with related functions,
can help strengthen the capacity of national and international efforts
to collect and use data relating to disability in their decision-making
and further facilitate the gathering of information. Such a function,
though not familiar to human rights treaties, is well developed
in other international law contexts.
Perhaps the best illustration in this context is provided
in the international environmental law context, where reliable data
collection and its use are critical to the success of environmental
protection efforts. International environmental agreements have
often established standing committees or scientific councils with
the competence to provide recommendations on technical matters,
necessary research, coordination of research, and evaluation of
results and other specialized matters bearing on the implementation
of the treaty. (94) In addition,
in some human rights contexts, the use of statistical indicators
has served to inform governments and has served, in addition, to
empower grassroots organizations to hold governments and other powerful
actors accountable for the effects of their policies on human rights.
(95) Finally, given the tendency of statistical assessment
in some instances to reinforce medical models of disability, the
establishment of a data collection mechanism tied to a treaty that
provides expressly for the participation of people with disabilities
in data collection and assessment is compelling.
ii. Building Coalitions of People with Disabilities
and their Allies Across Transnational Civil
Society and Capacity Building
International conferences where treaties or non-binding
documents are adopted provide critical opportunities for networking
and coalition-building among NGOs and other actors, quite apart
from seeking to raise awareness and influence formal proceedings.
An international treaty process provides opportunities to forge
coalitions between disability organizations, across disability lines,
and among non-disability-specific human rights and other governmental
and non-governmental organizations. (96)
The process whereby the passage of the ADA was made possible serves
as a salient example of how frequently disparate and disconnected
groups may be brought together to work toward achieving a common
goal. Joseph Shapiro explains the importance of these connections
in No Pity: People with Disabilities Forging a New Civil Rights
Movement:
There were groups representing all the major
disabilities, including spinal cord injuries, deafness and visual
handicaps, mental retardation and mental illness, as well as those
for newer or less well-known conditions, such as AIDS, Tourette's
Syndrome, and Chronic Fatigue Syndrome. To win passage of ADA disabled
people had to forge historic alliances not only among different
disability groups and politicians, but with the professionals who
had cared for them so long. (97)
In the same way the ADA process was both educative
and transformative, an international disability rights treaty process
has the potential to build productive relationships between various
actors. For the American disability community, the current effort
is an opportunity to reinforce and strengthen their domestic advocacy
in fundamental ways.
An international campaign for a treaty allows civil
society groups to have a voice and work for social change over time.
The participation of civil society in, for example, women's human
rights, child rights, the use of landmines, or the rights of landmine
survivors, is paradigmatic of how well-coordinated and informed
groups can work in concert to strengthen international law and,
therefore, make it relevant to people's lives.
(98) The experience of landmine survivors in the development
of the Landmine Ban Treaty (99)
is a striking example of successful networking and effective coalition-building.
(100) Early drafts of the treaty were silent on the issue
of assistance for those whose lives had been affected by the presence
of landmines in their own communities. The well-orchestrated efforts
of survivors themselves led to the inclusion of a provision in the
treaty that requires States Parties to address assistance for survivors.
(101) Absent the participation of landmine survivors in
the treaty process, the resulting agreement would have remained
focused on the weapons ban alone. The active participation of the
disability community--and reliance on their experience and expertise
by treaty drafters--in the adoption of a treaty on the rights of
people with disabilities and, once it has entered into force, its
implementation, will create important channels and focus for the
linking of disability advocacy efforts at the local, national, and
international levels.
There are interesting models from which the disability
community may draw inspiration in seeking to build coalitions to
participate in the drafting of a treaty and to oversee its long-term
implementation. (102) Most recently,
particularly well-coordinated and successful international networks
were established to steer civil society initiatives relating to
child soldiers, climate change, and persistent organic pollutants.
(103) Experience in engaging with the international human
rights mechanisms led organizations concerned with torture to form
a coalition in which their commonality is recognized and varying
approaches are seen to be complementary and mutually reinforcing.
Thus, the Coalition of International Non-Governmental Organisations
Against Torture (CINAT) brings together six groups, of which one
is engaged in pursuing legal remedies for redress,
(104) two are engaged in individual work to provide direct
assistance to torture survivors, (105)
one develops materials to aid the use of international mechanisms,
(106) and two are primarily concerned with campaigning
and monitoring State violations. (107)
In addition to providing unique opportunities to ensure
that the voices of people with disabilities and their allies are
heard in the drafting of an international convention, the treaty
process can fulfill an important capacity-building role for all
those actors engaged in it. Until now, most disability NGOs have
not developed the capacity to enable them fully to engage existing
international human rights mechanisms. Nor have they taken full
advantage of opportunities to contribute to monitoring, reporting,
and other activities of human rights institutions that complement
and enhance domestic advocacy. (108)
The treaty-making process constitutes a period of development for
all actors (particularly NGOs) to expand their capabilities in a
number of areas essential to their future work. The preparation
period allows NGOs to learn human rights framework advocacy strategies
and appreciate how the international human rights standards and
mechanisms may be used to effect change at local, national, regional,
and international levels. Equipped with this knowledge, organizations
are then better prepared to participate in the following activities:
(i) monitoring and surveillance of human rights problems; (ii) notification
of emergency situations; (iii) human rights training and dissemination
of information to their allies and the general public about human
rights standards and their violations; (iv) reporting of human rights
abuses to State and international bodies (treaty-monitoring and
otherwise); (v) participation in international human rights litigation;
and (vi) engaging in constructive dialogue with governments and
international organizations. (109)
These activities both enhance and are enhanced by advocacy efforts
already practiced by the disability community within the United
States and elsewhere.
In sum, the process of developing an international
human rights treaty for people with disabilities presents vital
opportunities for stakeholders. These opportunities will be compromised,
however, if the treaty-drafting process is unduly rushed. The doctrine
adopted by the 1999 Interregional Seminar on International Standards
on Disability in Hong Kong, supports the use of a fully participatory
approach to developing a comprehensive treaty on the human rights
of people with disabilities. (110)
Haste in this important endeavor would not only compromise the form
and content of the instrument itself but would also attenuate the
capacity and coalition building afforded by the treaty-making process.
B. Promoting Institutional Shifts through the Adoption
of an International Convention on
the Rights of People with Disabilities
People with disabilities are indeed entitled to the
same human rights accorded to all human beings in the Universal
Declaration of Human Rights, the International Covenants on Civil
and Political Rights and Economic, Social and Cultural Rights, and
other international instruments. (111)
The international institutions that stand to promote their rights
and improve their lives, however, have not adequately integrated
disability into their activities and programs.
(112) That is so notwithstanding directives issued in
such documents as the Vienna Declaration of the 1993 World Conference
on Human Rights, which stresses that the rights of people with disabilities
do indeed form part and parcel of modern international human rights
law. (113) The persistent marginalization
of disability as a human rights concern holds true for intergovernmental
organizations within the United Nations system as well as for international
non-governmental organizations, including human rights organizations.
Experience in other human rights spheres demonstrates how effectively
an international human rights convention, with adequate awareness
raising and support, can prompt fundamental institutional shifts
that integrate human rights concerns into policy guidelines and
operations. The need for such institutional change in the context
of disability is clear. The active participation of the disability
community in the drafting and implementation of an international
convention on the human rights of people with disabilities will
help to make this change a reality.
i. The UN Human Rights System
Within the very international human rights system
that is designed to promote and protect human rights for all, the
rights of people with disabilities are relegated to the periphery
where they receive inadequate attention and resources. For example,
the UN Program on Disability is housed not in the UN human
rights sphere proper, but in the social development sphere. Currently,
fewer than five people are devoted to servicing the office, half
the number allocated to the office at the height of the UN Decade
on Disability. As a practical matter, disability is addressed by
the Department for Economic and Social Affairs (DESA), Division
for Social Policy and Development, (114)
and the UN Program on Disability sits in New York. Thus, the
main UN office concerned with the lives of people with disabilities
is several thousand miles away from the core UN human rights machinery
in Geneva, where the whole structure for servicing and monitoring
human rights treaties is located and where human rights policy makers
and core resource centers are based. No focal point on disability
exists within the UN Human Rights Centre, and, in addition, within
the Office of the High Commissioner for Human Rights, disability
is only one among a number of thematic issues that is handled by
one or two staff members on a regular basis, but only as part of
a larger portfolio of work. (115)
This institutional placement of disability outside
the UN human rights framework has led to a marginalization, which
is reflected in the work of UN treaty-monitoring bodies as well
as other human rights mechanisms. The study shows that treaty-monitoring
bodies, though mandated to take into account the extent to which
specific treaty obligations are relevant for people with disabilities,
have nonetheless failed to do so in any consistent and ongoing fashion.
The situation is certainly not helped by the fact that disability
organizations, unlike groups addressing the rights of women, racial
minorities, torture survivors, children, and others, have not had
the capacity-building experience of working within UN institutions
through participation in the drafting and monitoring of a treaty
specifically addressing their rights.
Past experience demonstrates that the centering of
an issue within the UN human rights system draws attention to, and
channels financial resources into, particular human rights initiatives.
Absent such centering, governments, international organizations,
and foundations have neglected to divert extensive resources to
these initiatives. Leading up to and following major international
conferences (Vienna and Beijing), major US foundation grants on
projects relating to women's human rights and violence against women
were increased from 11 totaling $241,000 in 1988 to 68 totaling
$3,247,800 in 1993. (116) More
fundamentally, the encapsulation of core human rights principles
in one instrument will lessen the burden disability organizations
face in having to selectively address their concerns within the
disparate and decentralized treatment of disability in the current
human rights system. That is not to say that instruments and mechanisms
addressing disability should be ignored on the adoption of a new
treaty, but that the treaty and its monitoring mechanisms will enhance
the system so that disability receives a more focused and efficient
treatment within the United Nations as a whole.
Furthermore, a specific treaty on international disability
rights will establish a central institution for monitoring compliance
with treaty obligations and channeling attention, expertise, funding,
and time into compliance mechanisms. (117)
The reporting mechanism created by an international treaty will
establish an ongoing dialogue between governments, intergovernmental
organizations, and civil society. Countries will be required to
report on specific measures taken to comply with obligations, and
disability organizations and human rights organizations will have
the opportunity to present their own "shadow" or alternative reports
that will expose weaknesses in State reporting or supplement reporting
gaps. Human rights NGOs have created guidelines for alternative
reporting to UN bodies that should inform disability advocacy strategies.
(118) This State-reporting and parallel NGO shadow-reporting
process is itself capacity building. Treaty-mandated meetings of
the States Parties and regular meetings of specialized intergovernmental
agencies within the UN human rights system will provide consistent
and ongoing opportunities for disability organizations to draw attention
to the issues they seek to influence and alter governments' perceptions
of the costs and benefits associated with inaction.
ii. The UN Specialized Agencies and Development Institutions
The structural marginalization of disability within
the United Nations is paralleled in its specialized agencies where
disability tends to be treated as a "social protection" issue. A
paradigmatic example of this institutional mischaracterization and
frequent disregard of disability is provided by the International
Fund for Agricultural Development (IFAD).
(119) IFAD is the primary UN agency whose mission is to
work with the poorest populations in rural areas of developing countries
to eliminate hunger and poverty; enhance food security; raise productivity
and incomes; and improve the quality of life through improved access
to productive resources and empowerment. On its Web site is an informational
page titled "Who are the Poor?" in which IFAD sets forth its categorization
of the rural poor in its operational regions of the world and purports
to provide an "overview of the location and types of poor people."
Included are (i) displaced people; (ii) female-headed households;
(iii) indigenous people; (iv) scheduled castes and tribes; (v) wage
laborers and landless people; (vi) artisinal fishermen; (vii) pastoralists;
(viii) small holder farmers; and (ix) rain-fed farmers. Notwithstanding
its proclamation that "[k]nowing and understanding the poor is as
important as understanding poverty," people with disabilities are
excluded from IFAD's categorization of the rural poor.
(120) Significantly, gender concerns are a pivotal element
of IFAD's poverty-alleviation strategy and agenda, signaling the
impact of the international women's human rights movement in the
operations of development institutions.
It should be noted that some international organizations
have responded positively to disability awareness-raising initiatives.
For example, in response to the Asian and Pacific Decade of Disabled
Persons, (121) the Food and Agriculture
Organization (FAO) introduced pilot programs in Thailand and Cambodia
for disability-centered farming. (122)
Although such programs are encouraging, the lack of institutional
commitment to disability inclusion, reflected on the policy level,
means that these positive steps occur occasionally and sporadically.
Furthermore, even where disability does appear on
the policy agenda consciousness of development organizations, implementation
and practice may not reflect current thinking about disability and
may serve to reinforce harmful stereotypes and inappropriate models
of disability. Take, for example, the 1993 World Development Report
of the World Bank that exposed a new effort to quantify the global
burden of diseases and to develop a statistical measurement for
the values of lives lived with a disability, all in support of an
attempt to prioritize health needs. The measurement, Disability
Adjusted Life Years (DALYs), focuses primarily on assessing the
impact of disability in terms of years of burden and loss. Groce,
Chamie, and Me characterize the effort as "dangerously out of step
with current thinking about what constitutes a disability and what
individuals with a disability have to contribute to society."
(123)
At its core, DALYs defines the burden produced by
a certain condition/disease as years lived with disability and years
of life lost as a result of premature death. Disability is, under
this narrow measurement, equated with ill-health. People with disabilities,
therefore, represent a burden to their societies and enjoy a poor
quality of life. In need of health care or rehabilitation, people
with disabilities are a net drain on their societies. Additionally,
Metts criticizes DALYs for failing to recognize that disability
is also a function of social and environmental factors and for assuming
that prevention of impairments is the exclusive strategy for addressing
disability. (124) Given this view
of disability reflected in DALYs, it is not surprising to find development
experts imagining that disability is a "special" issue, worthy of
attention only when extra resources are available, after the development
needs of others are met. Statistical measurements linked to disability
do have a role to play in development policy, and people with disabilities
should be included in devising such tools to ensure that concerns
of the social model of disability are reflected in the resulting
indicators.
If history is any indication, the introduction of
an international treaty on the human rights of people with disabilities,
and the concomitant highlighting of disability issues, should prompt
organizational responses akin to those that followed international
efforts relating to gender. UN agencies and organizations have intensified
their focus on gender issues as a direct response to world conferences
on women's human rights and the resulting media attention to human
rights violations against women. Today, nearly every UN organization
is involved in a process of "gender mainstreaming," according to
which the organization either creates a gender focal point or integrates
gender throughout all its programs. (125)
Whereas gender units and women's projects are still somewhat marginalized,
understaffed, and underfunded, they are permanent features of both
governmental and non-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 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 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-disability-focused 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 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.
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 non-discrimination 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 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 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.
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 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 non-governmental 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)
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 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 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 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.
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:
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.
People with disabilities must be principal participants
in the drafting of any new treaty at all stages in the negotiation
process.
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.
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:
Promoting public education and awareness about
the human rights condition of people with physical and mental
disabilities.
Use of existing UN human rights treaty processes.
Engagement by disability organizations with regional
human rights systems.
Monitoring of, and reporting on, human rights violations
against people with disabilities.
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.
- Political representation and participation in decision-making
by people with disabilities should feature prominently in an international
treaty.
- 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 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:
Non-discrimination
Stereotyping of groups
Participation
Right to life
Freedom from torture and other forms of ill-treatment
Slavery, servitude, and forced labor
Survivor assistance
Equality before the law
Due process protections
Rights of peaceful assembly and association
Freedom of thought/opinion and information
Political and public life
Accessibility (to the built and natural environments, technology)
Medical care/health/rehabilitation
Employment/social security/income maintenance
Education
Culture and religion
Recreation and sports
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:
Coordination of efforts to engage with existing
human rights treaty-monitoring bodies and other international
and regional human rights processes.
Development of consensus on core principles to
be included in the treaty.
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.
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.
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 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 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.)
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.
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.
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.
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 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.
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.
Notes
1. Comprehensive and Integral
International Convention to Promote and Protect the Rights and Dignity
of Persons with Disabilities, Third Committee, 56 Sess., Agenda
Item 119(b), U.N. Doc. A/C.3/56/L.67/Rev.1 (28 Nov. 2001). Existing
disability data is woefully inadequate, with published estimates
of national, regional, and global populations of people with disabilities
being highly speculative. The United States Agency for International
Development (USAID) estimates the global population of people with
disabilities to be 10 percent or more, and the Roeher Institute
in Toronto, Canada, estimates the global population to be 13 to
20 percent. See Robert L. Metts, Disability Issues, Trends
and Recommendations for the World Bank, Discussion Paper No.
0007, 6 (Feb. 2000); Marcia Roux, Enabling the Well-Being of Persons
with Disabilities 2 (Roeher Institute 1998).
2. Leandro Despouy, Special Rapporteur,
Final Report, ¶ 3, U.N. Doc. E/C4/Sub2/1991/31 (12 July 1991).
3. C. Kelly, M-H Keany & Robert
L. Glueckauf, Disability and Value Change: An Overview and Reanalysis
of Acceptance of Loss Theory, 139; and Ruth Torkelson Lynch
& Kenneth R. Thomas, 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 Holt 1987); Connie
Panzarino, The Me in the Mirror (Seal Press 1994); Ruth Sienkiewicz-Mercer
& Steven B. Kaplan, I Raise My Eyes to Say Yes (Whole Health
Books 1989); Donna Williams, Nobody, Nowhere: The extraordinary
autobiography of an autistic (Avon Books 1992); Donna Williams,
Somebody Somewhere: Breaking free from the world 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: Overcoming Internalized Oppression and
Internalized Domination, in Bridges of Power: Women's
Multicultural Alliances (A. Albrecht & R.M. Brewer, 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. Ann Elwan, Poverty and Disability:
A Survey 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 Disabilities in Central Europe 5
(2001).
9. Disability Rights Advocates,
supra note 8, at 2.
10. Elwan, supra note 6,
at 11.
11. ESCAP, 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).
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 Psychiatric
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 physically dangerous to
themselves or others. As a result, more people who find these medications
debilitating are being forced to take them under court order.)
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,
they are frequently isolated from those in a position to assist
them. Theresia 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. 2002). See also Arlene S. Kanter, 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 rights and an array of coercive treatments.
See also Eric Rosenthal, International Human Rights 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) available at: <http://www.MDRI.org>.
19. See generally Mental
Disability Rights International, Human Rights & Mental Health:
Mexico (2000), Children in Russia's Institutions: Human Rights and
Opportunities for Reform (1999), Human Rights & Mental Health:
Hungary (1997), Human Rights & Mental Health: Uruguay (1995).
These reports, as well as a pending report on the human rights of
people with disabilities in Kosovo, are available at <http://www.MDRI.org>.
20. Human Rights and Mental Health:
Mexico, supra note 19, at 13-41. For example, MDRI found
that nearly half the people in a ward in Sayago were left tied to
their wheelchairs, because staff shortages left them with insufficient
personnel to supervise the residents. As a result, residents were
not only treated without dignity, but they were also placed in real
danger of developing extensive muscle atrophy (aggravating their
existing disabilities) and life-threatening bedsores. Id.
at 19.
21. Kay Schriner, USA: Votes
of Disabled People among 'Epidemic of Disappearing Votes', Disability
World, Issue No. 10 (Sept-Oct. 2001). Voters in Lee County, Iowa,
found every one of its 23 polling stations inaccessible to disabled
voters. Democratic Investigative Staff, House Committee on the Judiciary,
How to Make Over One Million Votes Disappear: Electoral Slight
of Hand in the 2000 Presidential Election 53 (Aug. 20 2001), available
at <http://www.house.gov/judiciary_democrats/electionreport.pdf>.
Accessibility to polling places and ballot secrecy has been prioritized
in President Bush's New Freedom Initiative. The Initiative recognizes
that "20,000 of the Nation's more than 120,000 polling places are
inaccessible to people with disabilities." New Freedom Initiative
22 (February 2001). In addition to addressing voting technology,
there are a vast range of other challenges posed by Electronic and
Information Technology (E&IT) as well as documented in a report
issued by the National Council on Disability. National Council on
Disability, The Accessible Future (June 21, 2001).
22. Democratic Investigative Staff,
supra note 21, at 6. In Colorado, some disabled voters found
the access ramps blocked by cones used to direct able-bodied voters.
Id. at 32.
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.
28. Nobel lecture given by the
2001 Nobel Peace Prize Laureate, Kofi A. Annan, Oslo, December 10,
2001, available at <http://www.nobel.no/eng_lect_2001b.html>.
29. Theresia Degener & Gerald
Quinn, A Survey of International, Comparative and Regional Law
Reform, DREDF Conference Paper, 10, fn. 37, available at <http://www.dredf.org>.
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) REASONABLE ACCOMMODATION.--The term "reasonable
accommodation" may include-
(A) making existing facilities used by employees
readily accessible to and usable by individuals with disabilities;
and
(B) job restructuring, part-time or modified work
schedules, reassignment 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 accommodations
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).
33. Doris Zames Fleischer &
Freida Zames, The Disability Rights Movement xvi (Temple University
Press 2001).
34. Reed Abelson, 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).
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.
40. G.A. Res. 2200A, 21 U.N. GAOR,
Supp. No. 16, at 52, U.N. Doc. A/6316 (1966).
41. G.A. Res. 2200A, 21 U.N. GAOR,
Supp. No. 16, at 49, U.N. Doc. A/6316 (1966).
42. The UDHR 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 (1989), entered into force 2 Sept. 1990,
Articles 2(1) and 23; African [Banjul] Charter on Human and Peoples'
Rights, 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 Rights in the Area of Economic, Social and Cultural Rights,
O.A.S. Treaty Series No. 69 (1988), signed November 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 Degener, Disabled
Persons and Human Rights: The Legal Framework, in Human
Rights and Disabled Persons: Essays and Relevant Human Rights Instruments
94 (Theresia Degener & Yolan Koster-Dreese, eds., 1995).
44. 660 U.N.T.S. 195, reprinted
in 5 I.L.M. 352 (1966).
45. G.A. Res. 34/180, 34 U.N.
GAOR, Supp. No. 46, U.N. Doc. A/34/46 at 193 (1979), reprinted
in 19 I.L.M. 33 (1980).
46. G.A. Res. 44/25, 44 U.N. GAOR,
Supp. No. 49, U.N. Doc. A/44/49 at 167 (1989), reprinted in
28 I.L.M. 1448 (1989).
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. Res. 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).
51. Declaration on the Rights
of Mentally Retarded Persons, 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 Humanitarian 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 Rules.
55. G.A. Res. 119, U.N. GAOR,
46th Sess., Supp. No. 49, Annex at 188-192, U.N. Doc.
A/46/49 (1991).
56. For more on the MI Principles,
see Eric Rosenthal & Leonard S. Rubenstein, International
Human Rights Advocacy under the 'Principles for the Protection of
Persons with Mental Illness,' 16 Int'l J. L. & Psychiatry
257 (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 legal obligation." Restatement
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 needs to uphold the practice
for it to become law, "once a practice has acquired the status 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.
60. General Comment 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 Comment 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, and medical care exclusively
within institutions--ignoring the efforts 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., Implementing the Right to Community Integration for
Children with Disabilities in Russia: A Human Rights Framework for
International Action, 4 Health & Human Rights 83, 89 (1999).
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 disability NGOs have issued similar declarations,
including calls for an international human rights treaty for people
with disabilities. For 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.
65. Comprehensive and Integral
International Convention to Promote and Protect the Rights and Dignity
of Persons with Disabilities, supra note 1.
66. See Summary Report
of a Conference on the Theme: "Towards a United Nations Convention
on the Human Rights of Persons with Disabilities," 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, summarizing, among
other things, the successive efforts by Ireland to support developing
an international human rights treaty for people with disabilities.
67. For more on traditional models
of disability, see Gareth Williams, Theorizing Disability,
in Handbook of Disability Studies 123 (Gary L. Albrecht,
Katherine D. Seelman & Michael Bury eds., Sage Publications
2001).
68. Simi Linton, Claiming Disability:
Knowledge and Identity 11 (New York University Press 1998).
69. Irving K. Zola, 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, Michael 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. 1995); Victor
Finkelstein, Attitudes and Disabled People (1980).
71. Nora Groce, Everyone Here
Spoke Sign Language (Harvard Uni. Press 1985).
72. Ida Nicolaisen, Persons
and Nonpersons: Disability and Personhood among the Punan Bah of
Central Borneo, 38; and Aud Talle, 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
that disability law and policy should not be a matter of charity,
professional need, compensation, or economic necessity but instead
must be grounded 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 barriers. 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 as an equal when one adds
that social institutions and attitudes are responsible for creating
disabling barriers that limit a person's participation in life activities.
The social model and the human rights approach, in short, are mutually
reinforcing.
Jerome E. Bickenbach, Disability Human Rights,
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).
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 necessary to enable persons
with disabilities to enjoy the effective exercise of all their human
rights on an equal footing with 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 assistance of counsel. R. Keightley,
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.
79. Zola, supra note 69,
at 405.
80. Irving K. Zola, 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 Carolina
State University 1998); Metts, supra note 1, at 38-40.
82. Eric Rosenthal & Clarence
Sundram, The Role of International Human Rights in Domestic Mental
Health Legislation, WHO Report [to be released in Spring 2002].
83. At this point, it may be useful
to briefly describe the components of the treaty-making process.
In essence, 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 Nations typically begins
with a preparatory phase of regional 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 may 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 known as "accession,"
which serves the same purpose as signature and ratification. Some
treaties permit countries to make "reservations," "declarations,"
and "understandings," which will allow a country to exclude, modify,
or clarify the legal effect of certain treaty provisions.
84. World conferences have been
extremely useful for raising awareness about women's rights 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 Our 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 account of
the process of drafting the UN Convention on the Rights of the Child
and the central role NGOs played in that process and now play in
implementing the treaty, see Cynthia Price Cohen, Drafting of
the United Nations Convention on the Rights of the Child: Challenges
and Achievements, 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 members of racial minorities, including groups of Afro-Latinos,
Dalits, and Roma, who had never before had the opportunity 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.
87. Further activities include
photographic and video exhibitions, art and drama programs, campaigns
and petitions, poster displays, electronic networking, and human
rights education and community-organizing workshops, all of which
serve to highlight the work of NGOs and create 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.
89. Examples of human rights materials
that have grown out of specific human rights treaties include: 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-by-Step (1997). While there are certainly some
materials which highlight the human 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. Existing materials include: 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, 2001); Rodrigo Jiménez
Sandoval, Eliminado Barreras Construyendo Oportunidades (Disabled
Peoples' International, Justicia & Genero, & ILANUD, 1997);
Rodrigo Jiménez Sandoval, Conociendo Derechos y Cumpliendo
con Obligations (Disabled Peoples' International & ILANUD, 1999).
90. See, e.g., Asbestos
Convention, I.L.O. 4 June 1986, Convention 162, I.L.O. Conventions
162, entered into force 16 June 1989, Article 22 (regarding
education on the hazards of asbestos and methods of prevention and
control); Safety and Health in Construction Convention, I.L.O. 1
June 1988, Convention 167, I.L.O. Conventions 167, entered into
force 11 Jan. 1991, Article 33 (regarding education and training
of workers in workplace hazards and methods of prevention).
91. International Convention on
the Elimination of All Forms of Racial Discrimination, G.A. Res.
2106 A(XX).
92. See, e.g., Montreal
Protocol on Substances that Deplete the Ozone Layer, 16 Sept. 1987,
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. 1989, entered into force
5 May 1992, reprinted in 28 I.L.M. 657, Article 10(4); United
Nations Framework Convention on Climate Change, 9 May 1992, entered
into force 24 March 1994, reprinted in 31 I.L.M. 849
(1992), Article 4(1)(i).
93. Zola, supra note 80,
at 9; Nora Ellen Groce, Mary Chamie, & Angela Me, Measuring
the Quality of Life: Rethinking the World Bank's Disability Adjusted
Life Years, 3 Disability World (June-July 2000).
94. See, e.g., Article
9, United Nations Framework Convention on Climate Change, 9 May
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 Resources, 20 May 1980, entered into
force 7 April 1982, 19 I.L.M. 849 (1980); Article 14, Convention
on the Conservation of European Wildlife and Natural Habitats, 19
September 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 November 1983, reprinted in 19 I.L.M. 15 (1980).
95. Sarah Zaidi, 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 Committee of
the Red Cross] ICRC, the core group of States, the UN, and to the
strategic coordination of their respective efforts." Don Hubert,
The Landmine Ban: A Case Study in Humanitarian Advocacy,
The Thomas J. Watson Jr. Institute for International Studies
Occasional Paper No. 42, 59 (2000).
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 Destruction, 18 Sept. 1997, entered into force
1 Mar. 1999.
100. Hubert, supra note
96, at 59.
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, inter 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.child-soldiers.org>.
104. Redress--Seeking Reparation
for Torture Survivors, at <http://www.redress.org>.
105. International Rehabilitation
Council for Torture Victims (IRCT) at <http://www.irct.org>,
and World 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. Special Rapporteur on Disability, Bengt Lindqvist,
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 Human
Rights of Persons with Disabilities," 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//:www.disability-rapporteur.org>.)
109. Julie Mertus, 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 Degener,
International Disability Law--A New Legal 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 Declaration of
Human Rights, supra note 38; International Covenant on Economic,
Social and Cultural Rights, supra note 41; International
Covenant 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.
113. The Vienna Declaration provides
that "all human rights and fundamental freedoms are universal and
thus unreservedly include persons with disabilities" and goes on
to state that The World Conference on Human Rights 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, ¶ 63, U.N.
Doc. A/CONF.157/24.
114. For information on this
program, see <http://www.un.org/esa/socdev/enable>.
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. Degener & Quinn, supra note 17, §12.3.
116. Keck & Sikkink, supra
note 77.
117. Monitoring of the implementation
of the UN Standard Rules relies upon the use of a Special Rapporteur,
who reports to the Commission on Social Development. The Special
Rapporteur is appointed every three years and so there is a marked
lack of permanency in this particular monitoring model. Additionally,
there is no mandatory State reporting system in place.
118. See, e.g., Association
for the Prevention of Torture (APT), APT Guidelines 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 Web page included references 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 maximum
of 200 hits for each term. See <http://www.ifad.org>.
120. IFAD's definition of the
poor is discussed in IFAD, Rural Poverty Report 2001: The Challenge
of Ending Rural Poverty 22 (Oxford 2001). The report is also available
at <http://www.ifad.org/poverty/index.htm>.
121. For information regarding
the Decade, see <http://unescap.org/decade/index.htm>.
122. For information detailing
FAO's activities in this regard, see
<http://www.fao.org/waicent/faoinfo/sustdev/PPdirect/PPre0035.htm>.
123. Groce et. al., supra
note 93.
124. Metts, supra note
1, at 1-2.
125. Julie A. Mertus, War's Offensive
on Women 103-110 (Kumarian Press 2000).
126. It should be noted that
the United States Agency for International Development (USAID) has
articulated 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 engagement 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 USAID has programs.
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
of USAID programs, making adherence to the policy essentially voluntary.
Id.
127. See, e.g., Henry
J. Steiner & Philip Alston, International Human Rights in Context:
Law, Politics & Morals (Oxford Uni. Press, 2d ed., 2000); Louis
Henkin, et al., Human Rights (Foundation Press 1999); Frank 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 ed., 1995).
128. For a study that details
the incorporation of gender policies and guidelines into the operational
and programmatic work of such aid institutions as UNHCR, CARE, and
Catholic Relief, see Mertus, supra note 125, at 103-110.
129. Oscar Schachter has stated
the following:
Implementation and accountability are now
regarded as essential elements of normative 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 government'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 International Convention on the Human Rights of People with Disabilities?
3(1) Austl. J. Hum. Rts. 69, 88-89 (1996).
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
procedures, those laws are frequently ignored to the extent that
the individual is arbitrarily deprived of all powers of decision-making.
Rosenthal, supra note 18, at 69.
131. For an account of international
human rights reporting concerning involuntary psychiatric procedures,
see World 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/CN.4/1987/17,
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).
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 Group Meeting on International Norms and Standards relating
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 Steinhardt, Recovering the Charming
Betsy Principle, 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).
136. There were two early efforts
within the United Nations to build support for the drafting of an
international treaty on the rights of people with disabilities.
In 1987, the Global Meeting of Experts to review the Implementation
of the World Programme of Action 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 rejected by
the UN General Assembly at its forty-second and forty-fourth sessions,
respectively, mainly because of disinterest and treaty fatigue.
For more on these efforts, see generally Bengt Lindqvist, Standard
Rules in the Disability Field, in Human Rights and Disabled
Persons: Essays and Relevant Human Rights Instruments 64-65 (Theresia
Degener & Yolan Koster-Dreese, eds., 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) Intergovernmental
Negotiating Committee (INC) Process (1999); International Women's
Tribune Centre, Get Ready! Connecting Beijing to Action 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. 1775), quoted in Paust,
supra note 135, at 167.
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 Henkin, 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
Leadership (1988); Kaufman & Whiteman, 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 Henkin, The Constitution,
Treaties and International Human 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., 1st 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.
144. For example, the Montreal
Protocol provides specific reporting timelines for States Parties,
and it also permits "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 September 1987, U.K.T.S. 19 (1990);
Cm. 977; 26 I.L.M. (1987) 1550; 17 E.P.L. (1987) 256. The Convention
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 Combat Desertification in Those Countries
Experiencing Drought and/or Desertification, Particularly 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 by States Parties under Article 19, paragraph
1 of the Convention, adopted by the Committee 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>.
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