Nothing About Us Without Us:
Human Rights and Disability
by Marta Russell
Citizenship can be seen as the realization of certain rights. When states can be held responsible for the treatment of their citizens, much can be gained. The United Nations has a role in setting global standards but so do disabled persons ourselves.
In June, a milestone effort culminated in New York at "The 2nd Ad Hoc Committee Meeting of the United Nations on a Comprehensive And Integral International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities" (June 16-27).
Delegates from approximately 100 nations and 42 nongovernmental organizations gathered for two weeks to decide whether the UN would proceed to draft a disability-thematic human rights treaty.
Physical, social, political, economic, and cultural barriers keep millions of disabled children and adults throughout the world excluded from fundamental citizenship. They often fall short of attaining or enjoying any human rights and remain absent from social and productive activities. Disabled persons face barriers to accessible education, employment, health care, transportation, public facilities and housing. Participation in social and political groups is limited or denied them. They are cut off from affectionate relationships and even denied the right to move. Possibilities that allow most persons to develop a desired style of life are out of reach due to the construction of societies in which they live.
All too often it remains the case that impairments are viewed as abnormalities and people who have them become devalued objects of the medical and social services establishment. Traditionally human rights have been applied to disabled persons as objects of rehabilitation and prevention, not as subjects considered fully human with comprehensive rights of citizenship.
All too often the medical model persists and ignorance of the social model of disablement dominates. The social model emphasizes that institutions -- the political, economic, social, cultural organization of society -- impose "disability" upon those who have impairments by segregating and excluding them from the rights others enjoy.
To rectify this situation, in the 1980s disabled people got together internationally and started demanding the recognition of their rights. It was then, that the slogan "Nothing About Us Without Us" became the rallying call to build the political power to do the work necessary to change world institutions to include us as full human beings - to undo disablist societies.
International organizations of disabled persons formed to press forward disability rights agendas including the World Federation of the Deaf, the World Blind Union, the World Federation of Deaf Blind, Disabled Peoples' International, Inclusion International, to name a few. The goal - a barrier free society for over 600 million disabled persons worldwide.
None of the equality clauses in any of the three United Nations human rights documents -- the Universal Declaration of Human Rights of 1948, the International Covenant of Civil and Political Rights of 1966, and the International Covenant on Economic, Social and Cultural Rights of 1966 -- mention disabled persons as a protected class with equal rights. When disability is raised it is only brought up in the context of social security and preventive health policies.
Worse, the World Bank uses a measure of the quality of life, Disability Adjusted Life Years, or DALYs, in which utilitarian concepts were adopted as a foundation for "cost-benefit" calculations. In DALY terms, impairment is a negative factor that detracts from the desired "healthy" life. It never seems to occur to the bean counters that World Bank policies might be creating the negative quality of life for people with impairments by perpetuating disabling environments.
Yet this is exactly what has happened to the 80% of the 600 million disabled persons who live in "developing" nations. As market rationales and restructuring created more poverty and greater inequality, the isolating and degrading circumstances under which disabled persons live has grown worse.
In the 1970s the UN explicitly classified disabled persons as subjects of human rights in the Declaration on the Rights of Mentally Retarded Persons (1971) and the Declaration on the Rights of Disabled Persons (1975). They were, however, still regarded as persons with medical problems requiring protection under the old social welfare state model, not in need of instruments that would assure access to the larger society, politically, socially, economically or culturally.
The General Assembly passed a number of resolutions on disablement that led to the 1982 World Program of Action Concerning Disabled Persons that became the primary document for the United Nations Decade of Disabled Persons 1982-93.
There was still no consensus for a disability-thematic legally binding treaty as had been granted women, children and migrant workers.
A half measure was adopted in 1993, "The Standard Rules on Equality of Opportunities for Persons with Disabilities." These rules have the implicit moral and political commitment of each state to adopt measures to assure equality of opportunities. There is a Special Rapporteur to monitor abuse, but the rules are not legally binding.
Data from Disability Awareness in Action shows that thirteen percent of over two million human rights abuses of disabled individuals result in death yet there is just one Rapporteur for the entire world!
On the second Tuesday of the Ad Hoc Committee session in New York, Committee Chair Luis Gallegos of Ecuador concluded that consensus was present amongst delegates to draft a treaty on human rights and disability. The work would move forward.
The next phase defined how the process should be structured --specifically the development of a Working Group to prepare a draft text for a treaty on human rights and disability. Disabled peoples organizations (DPOs) were holding out for twelve seats.
The member states approved the Working Group composition of twenty-seven member states and twelve representatives of DPOs to be selected among ourselves with transparency and taking into account geographical representation and diversity.
All around this was a historical and precedent setting Ad Hoc Committee meeting. We not only won a convention but we got seats at the table of power. This moves us a giant step closer to an international treaty though a struggle is certain in determining the details of tailoring a strong human rights treaty to disability.
DPOs would agree that a treaty should adopt a model that refers to all categories of human rights - civil, political, economic, social, and cultural that have been guaranteed to all people under international law but are not being fulfilled for disabled people.
There are 28 articles in the existing Declaration of Human Rights. Below are some rights DPOs are likely to put forth in a treaty:
* to be free from multiple forms of discrimination;
* to be free from torture and cruel, inhuman and degrading treatment or punishment, including violent and harmful medical practices such as caging developmentally disabled persons or chaining "mentally ill" persons to walls, beds, or involuntary psychiatric practices;
* to personal integrity, freedom from degrading, dehumanizing treatment such as involuntary institutionalization or abuse by caregivers;
* to equal employment, as opposed to lack of access to jobs and/or workplace harassment or exploitative labor or unequal wages;
* to an education, including the right of deaf, blind and deaf blind people to education in their native languages of sign and Braille;
* to be free from forced sterilization;
* to bodily and psychic integrity, including autonomy in decision-making;
* to equal access to the justice system such as sign language interpreters in the courts and accessible courtrooms;
* to family, including marriage;
* to life, as opposed to being chained to a public square and starved to death;
* to liberty and the security of the person;
* to health care;
* to assistive technology;
* to an adequate standard of living;
* to political participation, the right to vote.
The treaty must take measures to eliminate discrimination against disabled persons.
It must also include proactive measures to equalize opportunities and to guarantee accessible societies. Effective equality cannot be won by litigation alone. The United States model that ignores the economic system and power of entrenched interests to dominate government institutions has proved this.
Proactive measures are necessary such as the requirement to review existing member state laws and policies. Economies embedded with macroeconomic and microeconomic structures that keep disabled persons from work force participation must be confronted. Values must be readjusted so that exploitation of people's bodies is not the moving force of society.
Disabled persons who may ordinarily find the court system costly and inaccessible need alternatives. The treaty must also recognize the current limitations of Member States' justice systems and use Human Rights Commissions to play the role of resolving disputes alongside the conventional courts. Disability specific human rights monitoring bodies (preferably DPOs) will be necessary to achieve compliance.
Disabled peoples movements have much to add to the civilizing movements of the last three decades -- the Civil Rights Movement, the women's movement and the gay and lesbian movement. "Defect, Deformity, and Disfigurement" is an 18th century creation, it is not civilized, it is not even correct, and it is time to overturn it. Nothing short of a re -imaging and reconstruction of our social and economic institutions will do. This must be the century disabled people are accorded dignity through human rights.
Marta Russell is the author of Beyond Ramps: Disability at the End of the Social Contract and can be reached at firstname.lastname@example.org