The speech below was delivered by Bengt Lindqvist, Co-Director of D.R.P.I. and former U.N. Special Rapporteur on Disability, at the 2004 Disabled Peoples’ International World Summit: Diversity Within, held September 8 to 10 in Winnipeg, Manitoba, Canada. The text of this speech follows:

A new human rights paradigm has emerged in the disability field over the past twenty years. Persons with disabilities are increasingly viewed as full citizens entitled to enjoy all the rights and freedoms others take for granted. With the emergence of a human rights paradigm, it has finally been recognised that leaving children with disabilities without education, prohibiting young disabled people from exercising their family rights, their property rights, their full legal capacity, are nothing but serious human rights violations. These human rights violations cannot be defended by placing the blame on the existence of a disability.

The human rights approach to disability is now endorsed by the Member States of the United Nations as evidenced by historic resolutions at the U.N. Commission on Human Rights in 1998 and 2000. The Commission acknowledged that inequality or discrimination based on disability violates human rights and called for measures to strengthen the protection and monitoring of the human rights of persons with disabilities. In 2002, the Office of the High Commissioner for Human Rights published a report clarifying how the major U.N. human rights treaties are relevant to disability, reviewing how the system actually works in practice with respect to disability, and presenting options for the future. Currently, negotiations continue towards the adoption of a thematic convention on the rights and dignity of persons with disabilities. All these developments signal increasing opportunities for organizations of persons with disabilities, human rights advocates, and others to advance the rights of persons with disabilities internationally.

To take advantage of the new opportunities for disability rights advocacy, we must understand the history of this new human rights paradigm and we must be familiar with the key international instruments that will support advocacy efforts. Internationally accepted human rights standards, as found in international treaties and declarations, are useful tools for disability advocacy and for responding to injustice. It is extremely important to build capacity to make use of these tools and to effectively monitor and document the human rights situation of persons with disabilities. It is through monitoring that we will ensure that equal rights are implemented in practice.

New opportunities are now available to advance the rights of persons with disabilities because organizations of persons with disabilities promoted a human rights approach back in the late 1960s. They focused attention on how attitudes towards persons with disabilities and the design and structure of societies severely limited opportunities for persons with disabilities. The International Year of Disabled Persons in 1981 fueled this shift towards a human rights approach and in the following decades, the international community took many steps towards enabling the full participation of persons with disabilities in all spheres of society.

In 1993 the U.N. General Assembly adopted the Standard Rules on the Equalization of Opportunities for Persons with Disabilities. The Standard Rules provide national governments with concrete and direct advice on disability policy. The Rules were adopted to ensure that girls, boys, women and men with disabilities, as members of their societies, may exercise the same rights and obligations as others. The Standard Rules clearly state that national governments are responsible for taking action to identify and remove obstacles and must do so both by empowering persons with disabilities and by creating accessible societies. The Rules address a range of topics essential to equal opportunities for persons with disabilities, such as awareness-raising, medical care, support services, employment, education, social security, and family life.

While the Standard Rules were not compulsory when adopted in 1993, they have become an important authority in the interpretation of international human rights obligations. The U.N. Commission on Human Rights has recognised the Standard Rules as an evaluative instrument. The Commission adopted a resolution stating that inequality or discrimination inconsistent with the Rules amounts to a violation of human rights. The Standard Rules were also a leading source for one of the most important international human rights documents in the disability field: General Comment 5 of the Committee on Economic, Social and Cultural Rights, the body of independent experts that monitors the implementation of the International Covenant on Economic, Social and Cultural Rights. General Comment 5 is an important document because it is a rare detailed analysis of how international human rights guarantees apply to persons with disabilities. General Comment 5 is a unique and valuable tool for advocates advancing disability rights at the international level and in national courts and tribunals.

Three central concepts should be highlighted to emphasize the importance and usefulness of General Comment 5. First, in General Comment 5, the Committee on Economic, Social and Cultural Rights states that the Standard Rules are of major importance and constitute a particularly valuable reference guide in identifying more precisely the relevant obligations of States parties under the International Covenant on Economic, Social and Cultural Rights. By expressly linking the Standard Rules and the Covenant, the Committee confirmed that the many issues identified and addressed in the Rules are human rights issues and are relevant to the implementation of treaty rights.

Second, the General Comment explicitly indicates that the Covenant applies fully to all members of society, including persons with disabilities, and that discrimination on the basis of disability is prohibited by the non-discrimination article of the Covenant. The interpretation of the non-discrimination article is particularly useful. Of the seven major international human rights treaties, only the Convention on the Rights of the Child expressly prohibits discrimination on the basis of disability. With General Comment 5, disability is understood to be implicitly included as a prohibited ground of discrimination in all non-discrimination articles in international treaties. All human rights are to be exercised without discrimination of any kind, including discrimination on the basis of disability.

Further, the Committee requires States to take appropriate measures, to the maximum extent of available resources, to enable persons with disabilities to overcome any disadvantages flowing from their disabilities that inhibit the enjoyment of treaty rights. This creates a positive obligation on national governments to provide supports, services and aids necessary to facilitate social and economic integration, self-determination, and the realisation of treaty rights. Failure to take reasonable steps to accommodate a person’s disability in this way is clearly discrimination on the basis of disability and amounts to a human rights violation.

This brief overview highlights the key developments in the emergence of a human rights approach to disability over the past 20 years. These achievements have had an impact at the national level around the world. Growing awareness of the rights of persons with disabilities has strengthened disability rights advocacy. The dissemination and implementation of the Standard Rules has encouraged national legislative reform as well as the creation of structures for participatory policy development and social planning. The recent study on human rights and disability commissioned by the Office for the High Commissioner for Human Rights found that at least 39 States have adopted non-discrimination or equal opportunity legislation that applies to disability. National human rights institutions are also increasingly addressing disability discrimination.

It is important to use the momentum created in the last decade towards a human rights approach to disability. A twin-track approach, an idea supported by the Office of the High Commissioner for Human Rights and many governments, would promote the development of a thematic treaty on the rights and dignity of persons with disabilities while at the same time enhancing the disability dimension within the U.N. human rights treaty monitoring system. Relevant mainstreaming activities in the treaty system would include developing additional general comments on disability, developing the disability dimension in guidelines and questionnaires to States Parties, drafting special protocols, and undertaking thematic studies and similar activities on the subject of disability. The Standard Rules and General Comment 5 would serve as guides to interpreting and implementing international human rights treaties so as to respond to the situation of persons with disabilities.

However, the effectiveness of human rights protections for persons with disabilities must be measured in practice, at the local level. This involves monitoring the experiences of persons with disabilities using a human rights framework. International human rights standards are the benchmark to evaluate social and legal conditions and individual circumstances. Disability organizations and advocates must use the emerging opportunities effectively, including the monitoring mechanisms of the international human rights treaty system.

Monitoring activities are a central element in advancing human rights for persons with disabilities. The main purpose of monitoring is to credibly gather and process data to effect change, whether locally, nationally, or internationally. Monitoring data will reflect the current human rights status of persons with disabilities and will support advocacy for change.

Work to collect and document human rights abuses against persons with disabilities has been undertaken in recent years. In particular, Disability Awareness in Action has been collecting information on individual human rights abuses against persons with disabilities since 1999. Information from disability organizations, individuals, media reports, and various other documents is stored on a database. The D.A.A. Human Rights Database was the first of its kind and in its early development, the D.A.A. human rights documentation network tackled the many important issues related to collecting disability rights data, securing data, and issuing reports.

As part of the effort to gather global data and promote change, Disability Rights Promotion International, D.R.P.I., has been launched to develop effective tools for disability rights monitoring and to establish model monitoring sites in a number of countries. D.R.P.I. is a broad research and development project that was launched in 2002. A report on the project’s initial background research was published last year. This report summarises opportunities, methodologies, and training resources for disability rights monitoring. The resources identified provide much-needed context for discussion of how to facilitate international disability rights monitoring. D.R.P.I.‘s assessment of advocacy opportunities within the human rights system and of available monitoring tools and training resources has highlighted existing expertise, models, and methodologies. The research has also confirmed the lack of disability-specific resources and the need to link disability rights advocates with human rights mechanisms, which may provide support in reaching human rights goals.

To field-test disability rights monitoring, D.R.P.I. will work collaboratively with national and international organizations of persons with disabilities with the goal of establishing ongoing collaborations and sustainable monitoring projects in various locations internationally. The model monitoring sites will initially focus on capacity building, including intensive training about human rights instruments and disability rights as human rights. All training and monitoring activities will build on the strengths of established organizations of persons with disabilities who will take the lead in setting up local monitoring sites.

Capacity building will include practical monitoring skills. In collaboration with experienced human rights monitoring organizations and disability experts, D.R.P.I. is developing monitoring tools to be used to gather data. Monitors at the field-testing sites will participate in training, test the monitoring tools, and provide feedback for improving monitoring tools and techniques. The goal is to establish flexible yet reliable monitoring methods specific to disability and sensitive to cultural difference, gender, class, and race.

Disability rights training and monitoring activities will address important needs and issues in each country’s unique context. Local co-ordination will ensure that the monitoring activities, and resulting efforts to influence human rights standard setting, make a difference in the quality of life of persons with disabilities. Collaborations and partnerships will permit organizations and individuals to share expertise and build on past experience. Partnerships will also encourage the creation of networks to sustain monitoring activities in the long-term.

The model monitoring sites will develop the capacity to expose, report, and address disability rights violations. Initially, the monitoring sites will focus on individual human rights violations, but D.R.P.I. is developing information gathering networks for comprehensive monitoring. To capture the depth and scope of the discrimination faced by people with disabilities, D.R.P.I.‘s monitoring activities will have three areas of focus:

1. an individual violations focus: This is the fact finding with respect to alleged individual violations of the human rights of persons with disabilities.
2. a systems focus: By studying legislative frameworks, tracking case law before the courts and statutory human rights bodies, and by analysing government policies and programmes, the extent of human rights protections for persons with disabilities will be measured and systemic discrimination documented.
3. a media focus: The media has a powerful influence on the way disability is perceived and on the attitudes of the public towards persons with disabilities. D.R.P.I. will undertake to track media imagery and coverage of disability.

These areas of focus for monitoring were identified at an international seminar that was held in November 2000. Acting upon strong support from both the High Commissioner for Human Rights and the U.N. Commission on Human Rights, I invited a number of human rights experts and disability activists to draft plans and ideas for capacity building, both in the disability field and the human rights field. The seminar participants emhasised that monitoring in these areas of focus will provide a more comprehensive understanding of the human rights situation of persons with disabilities and will take advantage of the many ways these areas overlap. Disability is a complex social and human rights issue. Individual experiences of human rights violations are the result of a number of levels of discrimination in several areas. The areas of focus identified at the expert seminar and adopted by D.R.P.I. suggest that a global disability rights monitoring project must engage with a broad cross-section of collaborators, not only geographically, but in all relevant sectors of society.

Detailed data on the discrimination faced by persons with disabilities is essential to effective enforcement of human rights at international, national and local levels. D.R.P.I. also aims to provide information to assist disability advocates in engaging with the international and regional human rights treaty systems. International human rights law is a means to foster change. The use of international legal mechanisms, such as individual complaints and human rights reporting procedures, can highlight key issues and pressure States to improve laws, policies and practices. Monitoring disability rights will provide credible facts to support advocates in articulating disability issues and calling for democratic change and will also support governments in implementing human rights for persons with disabilities. Monitoring can also raise the awareness of courts, statutory human rights bodies, the media and all agents of democratic change in society.

In the disability field, we are now facing a new era – the human rights era. It will be an enormous task to teach the surrounding world about all the infringements and all the abuses that occur daily world-wide, but we now have authoritative human rights documents to support awareness-raising and advocacy. We must join forces to monitor and enforce human rights for persons with disabilities. Disability activists, human rights advocates, and all others who want to join this struggle can work together to create a world where all human beings can fully enjoy their human rights and fundamental freedoms.