May 2005
Occasional paper No. 8
People with mental illness and
The United Nations Disability Convention
by Chris Hansen
In August 2004 and January 2005 Chris Hansen and Mary O’Hagan were part of the New Zealand delegation to the United Nations in New York, at ad hoc meetings for the disability convention. This paper is written to inform New Zealanders of the process and development of the disability convention and to enlist ongoing support for its development.
About the United Nations
The United Nations (UN) was established in 1945 by 51 countries committed to preserving peace through international cooperation and collective security. Today the UN encompasses 191 nations and is founded on the principle of equality for all.
When countries become members of the UN they agree to accept the obligations of the UN Charter, an international treaty that sets out basic principles of international relations. The preamble to the charter affirms the dignity and worth of every human being and gives primary importance to the promotion of social justice.
The Universal Declaration of Human Rights, proclaimed by the General Assembly in 1948, sets out basic rights and freedoms to which everyone is entitled. They include the right to life, liberty and nationality; freedom of thought, conscience and religion; the right to work and to be educated; the right to food and housing; and the right to take part in government.
Two further human rights conventions have since been developed: the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights, which came into force in 1966. These two covenants develop and supplement the provisions of the universal declaration, and the three conventions together make up what has come to be known as the International Bill of Human Rights.
The 1948 universal declaration laid the groundwork for more than 80 conventions and declarations on human rights. There are conventions to eliminate racial discrimination and discrimination against women; conventions on the rights of the child, against torture and other degrading treatment or punishment; conventions on the status of refugees and the prevention and punishment of the crime of genocide. Declarations include those on the rights of persons belonging to national, ethnic, religious or linguistic minorities, the right to development, and the rights of human rights defenders. Together they form the most comprehensive international code of binding legal provisions in the area of human rights.
Persons with disabilities, including mental illness, are entitled to all the fundamental human rights upheld by the charter and other human rights conventions. The UN includes people with mental illness in their definition of disability.
New Zealand has traditionally taken its international human rights obligations seriously. The Bill of Rights and the Human Rights Act are both modelled on UN human rights conventions. A disability convention could have a big influence on policy and legislation in the future and that’s why it’s so important.
About disability
“Disability is not something individuals have. What individuals have are impairments. They may be physical, sensory, neurological, psychiatric, intellectual or other impairments. Disability is the process which happens when one group of people create barriers by designing a world only for their way of living, taking no account of the impairments other people have.” (NZ Disability Strategy).
The social model of disability states that we are not disabled because of a physical or mental extremity, it is society that disables us by its failure to include us, to cater for our difference, or to value our uniqueness. Aspects of life that most in society take for granted, such as freedom, housing, employment and free association are not as available to a significant proportion of disabled people.
There are over 600 million persons with disabilities worldwide, that’s 10 percent of the world’s population. Approximately two thirds live in developing countries. In certain developing countries nearly 20 percent of the general population is in some way disabled; if the impact on their families is taken into account, 50 percent of the population is affected.
Likewise, in the mental health arena, many people are diagnosed, medicated, hospitalised and marginalised. Mental illness is socially constructed, as are many of the barriers that people diagnosed with mental illness face. People with mental illness frequently face human rights violations and discrimination.
A disproportionate number of people with mental illness are locked up against their will, are homeless, unemployed, under-educated, socially isolated and lack adequate health care. They are too often dependent upon the small (if existent) welfare systems governments provide, and are excluded from the key choices and decisions that are made to define their lifestyles.
About the disability movement
"We want to unite all people with disabilities to work together and go forward. That, really, is independence. Our philosophy is to enjoy equal life, to have equal opportunities and full participation, like other people, in all aspects of life. We believe we should make our own choices. And we hope we are no longer passive participants or just recipients of services. We should be the active organizers." Karen Ngai, Rehabilitation Alliance, Hong Kong.
Over the last 30 years the user/survivor movement has developed from a few scattered self-help groups to a network of individuals and groups from around the world, to a human rights movement, which advocates for the dignity and humane treatment of the large group of people who experience mental illness.
The user/survivor movement has helped to create a visible shift in focus from a person’s disabilities to acknowledging their strengths and abilities. Like the wider disability movement, the user/survivor movement also demands a paradigm shift away from a medical model that diagnoses deficits in the individual and towards a social model that makes society accountable for providing supports and eliminating discrimination and honouring human rights.
Organisations of people with experience of mental illness, such as the World Network of Users and Survivors of Psychiatry (WNUSP) have ensured they maintain a strong presence within the disability community and that their unique needs, rights and challenges, particularly issues of forced treatment, are acknowledged, catered for and included in all aspects of disability work.
The purpose of the WNUSP is to be a global forum and voice of people with mental illness, to promote their rights and interests. Some the aims of the WNUSP are to:
· advocate for the advancement of human rights of people with mental illness
· provide international representation and consultation to influence matters that affect people with mental illness
· encourage the development of national people with mental illness organisations in each country
· facilitate effective information exchange among people with mental illness organisations around the world
· develop networking opportunities for individual people with mental illness throughout the world.
About the development of the convention - the process so far
The disability movement, through its lobbying of various governments, facilitated the development of a convention on the rights of disabled people. The UN General Assembly, in response to this, adopted a resolution in 2001 to establish an ad hoc committee:
"to consider proposals for a comprehensive and integral international convention to promote and protect the rights and dignity of persons with disabilities, based on the holistic approach in the work done in the fields of social development, human rights and non-discrimination.”
Ad hoc committee meetings take place between the 191 member nations (known as States). Initially, most state delegations were made up of diplomats. As a part of the resolution establishing the ad hoc committee, the General Assembly invited non-governmental organisations (NGOs) with an interest in the matter to contribute to the work of the committee. Many State delegations have taken on board the disability movement’s ‘nothing about us without us’ philosophy, and included people with disabilities in their delegations.
New Zealand was the first state delegation to include people who identify as having personal experience of mental illness (Hungary and Sweden have since followed suit).
WNUSP has been involved from the start. This NGO is held in extremely high esteem by state parties and NGOs alike, and is seen to be one of the movers and shakers in the process. This is due, largely, to the tireless efforts of US survivor and human rights lawyer Tina Minkowitz, who has worked on raising WNUSP profile and the issues that affect us as service users within the context of the disability convention.
WNUSP has ensured that the issue of forced treatment is taken seriously, and has raised the profile of this to become an issue to be debated. As a result, many believe that this is perhaps the most contentious issue within the convention.
The first meeting of the Ad Hoc Committee took place in 2002. At that meeting a majority of those attending preferred a human rights-based convention. Discussion at the meeting emphasised the need for effective monitoring for existing conventions and the proposed convention. It was agreed that monitoring should include feedback from NGOs and disabled people, as well as from governments.
The first meeting of the Ad Hoc Committee concluded with a resolution to proceed with developing a convention that was based on elaborating human rights already established. It specifically excluded the possibility of creating new human rights.
In May 2003 Government agreed that New Zealand was well placed to take an active role in the development of the convention and that the Office for Disability Issues would lead the New Zealand government’s engagement, in association with the Ministry of Foreign Affairs and Trade.
The ad hoc committee held its second meeting in June 2003 and New Zealand promoted a proposal, which was adopted, to establish a working group the would include organisations of disabled people as well as the states. It was agreed that the working group would prepare and present a draft text of the convention for negotiation in June 2004.
In December 2003 New Zealand was granted a place on the Working Group. New Zealand’s representative was Dr Jan Scown, Director, Office for Disability Issues.
Further sessions have been held in 2004 and 2005. The disability convention could be completed as soon as the end of 2005.
New Zealand is held in high regard for a number of reasons. First, New Zealand diplomat Don McKay chaired previous informal meetings and the working group with great success, according to many of the States and NGOs involved. Second, the New Zealand team has had a comparatively high number of delegates with disabilities, and an ability and willingness to incorporate the ‘nothing about us without us philosophy’ in a straightforward fashion.
Structure of the Convention
General principles:
The latest draft of the convention lays out some general principles:
a. dignity, individual autonomy including the freedom to make one's own choices, and independence of persons;
b. non-discrimination;
c. full inclusion of persons with disabilities as equal citizens and participants in all aspects of life;
d. respect for difference and acceptance of disability as part of human diversity and humanity;
e. equality of opportunity.
It then lists the general obligation of member states, including full realisation of human rights and freedoms for all, without discrimination. Member states are to do this by any measure, including legislative change. They are required to actively work to eliminate discrimination, and to ensure other public authorities, private organisations and individuals do the same.
And, in the development and implementation of policies and legislation to implement this convention, member states shall do so in close consultation with, and include the active involvement of, persons with disabilities and their representative organisations.
Monitoring
Any human rights convention is worthless without a process of monitoring and accountability.
The monitoring mechanism of the disability convention is one of the issues that has yet to be decided upon. It is widely believed that this should be similar to the monitoring mechanism for the six human rights treaties. This could involve a panel of experts and special rapporteur, as well as state reports, complaints mechanisms (individuals, groups and states), NGO involvement and investigation powers of the treaty monitoring body.
Important issues
Most of the issues people with mental illness might like to see in the convention are common to all disability groups, though some are not. Users and survivors are particularly concerned that the following issues are taken up in the convention:
Social model of disability
The medical model diagnoses, pathologises and focuses on deficits. The convention can require governments to implement programmes to encourage communities to be inclusive and celebrate our differences. There is a strong push among people with mental illness to get away from the medical model, which says you are sick and need treatment, towards the social model, which puts the responsibility on community to accept a person’s differences and uniqueness.
Self-determination and self-representation
This is an issue that people with mental illness have in common with other disability groups. The convention should ensure people with mental illness and other disabilities have the right to make their own decisions and speak for themselves.
Forced treatment
Most countries have legislation that allows for compulsory treatment so it is unlikely that the States will agree to oppose it in the convention. Forced treatment sets people with mental illness apart from other disability groups. There is growing support at the UN for
the elimination of forced treatment, especially among NGOs and some non-western States.
Guardianship
Guardianship removes a person’s right to make decisions about their own treatment, finances etc. The convention could require supported decision-making, where the person is supported to make decisions by someone they trust in a non-coercive way. Most guardianship laws allow only for substituted decision-making, where someone is appointed to make decisions on the disabled person’s behalf.
Discrimination
Discrimination marginalises and limits our opportunities. It contributes significantly to the ongoing, devastating and disproportionate poverty and decreased life expectancy of people with mental illness in our communities. One option is for the convention to require countries to undertake proactive programmes to disseminate anti-discrimination messages to the community.
Peer support
The effectiveness of peer support is well known to those who experience mental illness. The support and contribution to recovery that peers provide cannot be replicated by people who are paid to provide clinical or other services. The convention should recognise and promote peer support as an option supported by the State.