ADHOC COMMITTEE ON
AN INTERNATIONAL CONVENTION

Necessity for a Convention

People with disabilities need a human rights treaty to systematize and highlight the guarantees of our equal human rights. At the present time, despite the recognition of disability as a prohibited category of discrimination for the purposes of other treaties, this has not been sufficient to secure adequate implementation. Furthermore, there still exist international instruments and national laws that explicitly derogate certain human rights on the basis of disability. A convention developed with the participation of people with disabilities will make it possible to highlight actual human rights violations and discrimination.

Principles

While the convention must deal with the obligations of states as well as necessary social and systemic changes, the focal point must be the rights of people with disabilities and their exercise under conditions of equality, self-determination (in the sense of making one's own decisions) and social solidarity.

Preamble

WNUSP is concerned about the naming of instruments containing outdated or paternalistic norms, which might cause confusion in the interpretation of this convention. The World Programme of Action on Disability and the Standard Rules, as well as the Inter-American Convention on Disability and relevant ILO conventions, should be recognized as antecedents of this human rights convention on the rights of people with disabilities.

Basic Articles: Overarching Provisions

The Convention should ensure that it supersedes outdated instruments, by means of a paragraph such as the following (which was included in the document "What Rights Should the Treaty Contain?" that was developed at the Expert Group Meeting in Mexico City):

Any international or national legal provision and/or administrative arrangement or decision in contravention with or derogation of the provisions of this convention shall be deemed void ab initio.

Basic Articles: Who is covered

It is important to characterize this as a human rights and non-discrimination convention, and thus to protect everyone from discrimination on the basis of disability. It is important to define discrimination on the basis of disability for that reason. Based on the definitions in the Inter-American Convention on the Elimination of All Forms of Discrimination Against Persons with Disabilities, the International Convention on the Elimination of All Forms of Racial Discrimination, the Convention on the Elimination of All Forms of Discrimination Against Women, and the contributions made by participants in the Quito seminar, we propose the following the definition:

Discrimination against persons with disabilities

1. The term "discrimination against persons with disabilities" means any distinction, exclusion, or restriction based on disability, record of disability, condition resulting from a previous disability, or perception of disability, whether present or past, which has the effect or objective of impairing or nullifying the recognition, enjoyment, or exercise - in conditions of equality - by a person with a disability of his or her human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field.
2. Failure to eliminate environmental and attitudinal barriers or establishment of new barriers which impair access to desired services and full participation in the activities of civil, cultural, economic, political and social life also constitutes discrimination.
3. Anyone subjected to discrimination as defined in a or b above shall have recourse to remedies under this Convention.

Definition of persons with disabilities, or of disability itself, may be necessary at some point in the process of developing the convention. However, we think it is premature at this time and needs further discussion among Disabled Peoples Organizations and between those organizations and government representatives.

Our primary concern about such a definition is that all people with disabilities, and all forms of disability, be covered. It would also be desirable to obtain a definition that is comfortable both for people with disabilities who identify with medical terminology and diagnosis, and for those who reject medical terminology and identify with disability as a social and political category only.

It is also important that any definition of disability not give rise to extensive litigation, for example by naming the extent of functional limitation that constitutes disability.

Basic Articles: What are state obligations?

The convention must require states to adopt anti-discrimination laws and repeal all laws which themselves perpetuate discrimination.

The rights guaranteed by the convention must give rise to enforceable remedies in national tribunals, and states must also accept an obligation to protect against violation of rights by non-governmental agents. Such provisions are essential in a human rights treaty and comparable to obligations already undertaken in other treaties.

Basic Articles: What affirmative or compensatory policies need to be implemented?

a. Concern over particular focus on "people with disabilities in situations of particular vulnerability"

Many people have expressed concern about the inclusion of a provision for special protection of people with disabilities in situations of vulnerability. This must not become an excuse for separate and inferior human rights standards to be applied to particular segments of the population of people with disabilities.

On the other hand, the intersection of discrimination on the basis of race, gender, age, and similar factors, with disability, should be addressed as a focus of concern.

b. What is an affirmative or compensatory measure?

The concept of permanent affirmative or compensatory measures is problematic because it suggests that people with disabilities can never be fully included in society. We would suggest that systemic changes such as universal design, requiring reasonable accommodation of people with disabilities, and mainstreaming of disability in all aspects of policymaking, be substituted for the concept of permanent affirmative or compensatory measures. This requires a shift in focus from disability as an individual condition to disability as a social condition.

The concept of universal design should be extended to policymaking in general so that society in all respects is equally accessible to people with and without disabilities.

The right to assistive services and devices also does not need to be seen as compensatory. The Universal Declaration of Human Rights already provides that "everyone… is entitled to realization… of the economic, social and cultural rights indispensable for his [sic] dignity and the free development of his [sic] personality." A convention on the rights of people with disabilities will clarify the nature of states' obligations in this respect, with the benefit of the expertise of disabled people ourselves.

States' obligations should not be understood in any way that conflicts with the self-determination (right to make one's own choices) of people with disabilities.

Specialized Articles

The right to remain at liberty without discrimination based on disability is crucial to ensuring equal access to participation in society. Imprisonment in institutions or hospitals or in our families' homes is the most extreme form of exclusion.

The right to autonomy of mind and body, to reject unwanted treatments, is equally crucial. The right to say "No" is central to the preservation of mental and bodily integrity. The Special Rapporteur has recognized these rights in the proposed supplement to the Standard Rules, in the following language:

States should recognize that persons with disabilities have the same right to self-determination as other citizens, including the right to accept or refuse treatment.

States should ensure that medical facilities and personnel inform people with disabilities of their right to self-determination, including the requirement of informed consent, the right to refuse treatment and the right not to comply with forced admission to institutional facilities. States should also prevent unwanted medical and related interventions and/or corrective surgeries from being imposed on persons with disabilities.

• A convention on the rights of people with disabilities should prohibit unwanted medical and related interventions as a form of torture or cruel, inhuman or degrading treatment or punishment. Medical and related interventions performed on persons with disabilities for the purposes of interrogation, coercion, intimidation, punishment, or for reasons based on discrimination of any kind should also be specifically named and prohibited.
• The convention should prohibit any kind of confinement or internment based in whole or in part on disability.
• The right to decide whether to accept or refuse any treatment or service must also be recognized in articles on health care and social services. This right must be supported by ensuring provision of the information necessary to make the decision, and by an adequate availability of the types of services that people with disabilities find beneficial to themselves.
• In crafting language on the right to health care and rehabilitation, the language needs to be broader than medical; it should be wellness oriented, allowing all kinds of healing and wellbeing choices.
• The convention should contain an article on the right of people with disabilities to form and sustain their families, and an article on the right to privacy of records kept about the person with a disability.
• Employment rights of people with disabilities should include reasonable accommodation, non-discrimination in all aspects of employment and the requirement of equal pay for equal work. The approach taken should be inclusion and mainstreaming of economic participation rather than segregated work opportunities that underestimate and stereotype people's abilities.
• Housing must be made physically, legally, socially and economically accessible to people with disabilities. In some countries certain groups of people with disabilities are excluded from eligibility for public housing. This is an example of a legal barrier. In many countries, the cost of housing is prohibitive for a large proportion of people with disabilities, forcing them to live in other people's households or in institutions, or on the streets. Social discrimination also interferes with our ability to obtain housing. The convention should specifically address the need for housing, as well as access to other basic necessities of life, for all people with disabilities. Institutional placements and similar segregated facilities should not be treated as acceptable housing alternatives.

Implementation and Monitoring

WNUSP advocates a comprehensive monitoring mechanism to include state reports, complaint mechanisms (collective and individual), participation by NGO's, and investigatory powers for the treaty body, as well as a special rapporteur and panel of experts. We also believe that a conference of states parties for the purpose of cooperation in mainstreaming disability in their development and policymaking could be beneficial so long as people with disabilities are involved through their NGOs and otherwise. These are all measures which have been proven useful in monitoring and implementation of other instruments.

The monitoring committee should be composed of a diverse group of experts to be chosen from among people with disabilities who are leaders of national disability organizations or have otherwise demonstrated their competence in the promotion and protection of the rights of people with disabilities.

People with disabilities will also need to be centrally and influentially involved in national institutions overseeing monitoring and implementation of the convention.

Organizational Information

World Network of Users and Survivors of Psychiatry is an international organization of users and survivors of psychiatry. WNUSP advocates for the human rights of users and survivors, speaks internationally for users and survivors, promotes the user/survivor movement in every nation, and links user/survivor organizations and individuals throughout the world.

A user or survivor of psychiatry is self-defined as a person who has experienced madness and/or mental health problems and/or has used or survived psychiatry / mental health services. We say "survive" in recognition that the experience of confinement and imposition of forced treatments is harmful and life-threatening.

WNUSP grew out of users' and survivors' demands for recognition and representation. Originally meeting at the biennial World Federation for Mental Health conferences, the network is now a permanent international organization.

WNUSP was first established in 1991 as the World Federation of Psychiatric Users at the World Federation of Mental Health conference in Mexico. In 1997 the name was changed to its current form. In 1999 WNUSP received initial core funding from the International Disability Foundation to plan an international meeting in Santiago, Chile. In 2000 the Secretariat of the organization was established in Odense, Denmark, and in 2001 we held the first General Assembly in Vancouver, with 34 groups from 12 countries, and adopted the WNUSP statutes.

We currently have over 70 organizational members, based in 30 countries. We also have individual memberships and maintain an open email list and a website (http://www.wnusp.org).

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