The present text has been adopted by the Annual General Assembly of the European Disability Forum that took place in Athens on the 23rd of May 2003. It is the EDF contribution for the second meeting of the Ad Hoc Committee in charge of considering proposals for a United Nations Convention to protect and promote the rights of persons with disabilities.
The European Disability Forum has obtained consultative status to this Ad Hoc Committee and is also awaiting a final response on its demand for consultative status to the ECOSOC of the UN.
EDF has been actively monitoring the process towards the UN Convention. It took an active part at the first Ad Hoc Committee meeting and has been monitoring the developments within the European Union, trying to ensure that the European Union supports the process.
EDF will be present at the second meeting of the Ad Hoc Committee meeting and also many of its national member organisations will be present through national UN Member States delegations.
The European Disability Forum closely co-operates with IDA, the International Disability Alliance, and supports also the statement issued by IDA at the meeting held in Almasa (Sweden) in March 2003.
It has to be a Convention
EDF strongly believes that what is needed and what has to be the outcome of the current process is a legally binding Convention.
While existing international human rights treaties do apply to persons with disabilities, they do not specifically state that they protect the rights of persons with disabilities, nor is there an international treaty which specifically addresses the rights of persons with disabilities.
The human rights of persons with disabilities deserve the same level of protection as the human rights of other disadvantaged or vulnerable groups, like women, children and ethnic minorities. Persons with disabilities are a marginalized group for whom existing generalized human rights standards have not worked and who therefore require explicit standards to address the discrimination they face in society and the range of rights violations to which they are subjected.
One of the main decisions we therefore expect from this meeting is a clear decision to change the mandate of the Ad Hoc Committee, which should from now on state that the Ad Hoc Committee will be in charge of drafting a United Nations Convention. It will also be important that a clear decision is taken on the drafting process and that sufficient resources are allocated to this process.
Objectives of the Convention.
What will be the real added value of a new thematic Convention.
The Convention would be the fourth thematic convention and as such would not add new rights, but would ensure that these rights are tailored so to ensure that disabled people can really fully enjoy them.
The main objective of the UN Convention should be to provide a positive contribution to the equal and effective enjoyment of all human rights by all persons with disabilities.
The objectives of a UN Convention on the Rights of Persons with Disabilities are two-fold: First, it will provide a binding statement of law with a mechanism for enforcement that ensures the equal and effective enjoyment of all human rights by people with disabilities. Second, it will assist in clarifying the content of the existing international instruments, both the mainstream human rights instruments as well as the disability specific UN instruments, in particular the UN Standard Rules on the Equalization of Opportunities for People with Disabilities and the World Programme of Action for People with Disabilities.
The process of developing a Convention will also contribute to the prioritization of the rights of persons with disabilities in national and international agendas, which will in turn stimulate awareness. This would also contribute to a shift in thinking about persons with disabilities as persons with human rights, like everyone else, and not as medical problems or objects of charity and pity. International agencies, including development banks, humanitarian organizations and many specialized agencies of the United Nations have devoted very little time and resources to the subject of disability. National bodies, such as human rights institutions, ministries of transportation, and ministries of education have often devoted very little resources to disability issues. A Convention will help direct attention to disability and can promote increased resources to disability programming.
Furthermore, the process of developing a new Convention is itself a transformative process which will provide opportunities for government, disability organizations and people with disabilities to build knowledge and develop coalitions to improve the lives of people with disabilities.
A new Convention will create a permanent monitoring mechanism and serve as a focal point for the implementation of human rights provisions.
Principles to be embodied in the Convention
EDF strongly supports the following recommendations made by the disability caucus which met throughout the first Ad Hoc Committee meeting in July-August 2002 in New York:
The Convention should also clearly state that no national or international legal instrument, provision of declarations or conventions or part of any such provision or any other legal text should be interpreted in a restrictive sense or in any other way that places persons with disabilities at a disadvantage in any context or offer them less protection than other persons.
Other principles on which the Convention should be based are those of integrity, liberty, social justice, self-determination and self-representation.
Scope of the Convention
The Convention should ensure the full and effective enjoyment of all human rights, that is, civil, political, economic, social and cultural for persons with disabilities.
The work undertaken at the expert meeting held in Mexico, based on an analysis from a disability point of view of the different human rights included in the International Covenant on Civil and Political Rights and the International Covenant on Economic, Cultural, and Social Rights is considered as a useful starting point for the work on the Convention.
The interdependence of human rights requires the future UN Convention to cover all rights. It will have an impact on the mainstreaming of disability, ensuring that all sectors of society feel responsible to ensure the full respect of human rights of people with disabilities.
The new United Nations Convention also needs to make a contribution to combat the violence disabled people continue to suffer.
Definition of disability
The definition of disability is a very complex issue and should not become an excuse for inaction. We therefore suggest not to deal with this issue at an early stage of the process. The new WHO classification International Classification of Functioning (ICF) is not a legal definition of disability and therefore not appropriate for a legal instrument.
EDF considers it as very important that:
Definition of discrimination
The definition of discrimination to be included in the Convention should broadly reflect the definition of discrimination used in the EC Directive on equal treatment in the workplace. Direct discrimination, indirect discrimination and harassment need to be considered as forms of discrimination. Moreover, it is vital to ensure that the failure to provide reasonable accommodation, has to be considered as a form of discrimination.
The definition of discrimination of the Inter-American Convention on the Elimination of All Forms of Discrimination against Persons with Disabilities might also provide some elements for the definition of discrimination. It states:
Positive action aiming to ensure real equal opportunities for disabled people should in no way be considered discrimination against non disabled people and should therefore be allowed and promoted.
Definition of equal opportunities
A definition of equal opportunities needs also to be included in the Convention. Any such definition should be based on the definition included in the UN Standard Rules.
The right for disabled people and their families, particularly in the case of people with complex dependency needs, to obtain the adequate governmental support (financial and in terms of assistive devices, services and time) is a key element to really ensure full access to all human rights.
Elements of the Convention
As stated above, the Convention must develop the existing legal protections to ensure that they address in concrete terms the specific issues that impact the human rights conditions of persons with disabilities.
The Charter of Fundamental Rights of the European Union, article 13 of the Amsterdam Treaty and the Madrid Declaration adopted in March 2002, provide a similar approach as to how to ensure equal opportunities for persons with disabilities.
The EU Charter of Fundamental Rights in its section on equality, combines an article that prohibits discrimination on several grounds including disability (article 21), with article 26 that acknowledges the right of persons with disabilities to benefit from measures to ensure their full participation.
Article 13 of the Amsterdam Treaty grants the European Community with the competence to “take appropriate action to combat discrimination based on sex, racial or ethnic origin, religion or belief, disability, age or sexual orientation”.
The Madrid Declaration stated that to achieve social inclusion of persons with disabilities, a combination of non discrimination legislation and positive action measures is needed.
Therefore, a twin-fold approach is required.
On the one hand, the UN Convention should provide legally enforceable rights to persons with disabilities and their representative organisations. The UN Convention should lead to world-wide anti discrimination legislation, based on existing good models in some countries like the United States, Australia and the United Kingdom. The EU already has precedent for this approach as evidenced by the adoption of the EC Directive on equal treatment in the workplace having as legal base Article 13.
Therefore, the Convention needs to include a clear prohibition of any form of discrimination on grounds of disability. Persons with disabilities need to be given the right to an effective remedy and protection against any discrimination.
Protection needs to be given against direct and indirect discrimination, as well as the failure to provide reasonable accommodation. The access of persons with disabilities to the full range of human rights is often prevented by a variety of barriers: physical, legal, attitudinal and communication barriers that need to be tackled by this type of anti-discrimination legislation.
Second, positive action measures are required to really achieve the objective which is to provide equal opportunities to persons with disabilities and to enhance their full participation. Therefore, the Convention needs to include obligations that require States to undertake these measures.
The following paragraphs outline some examples of how the twin-fold approach would apply to certain existing human rights.
In order to ensure an adequate respect for the diversity of persons with disabilities, references to specific provisions for certain groups of persons with disabilities need to be included in some provisions of the Convention. Such references would include the recognition of sign language, the use of Braille, the use of Easy to Read material and other forms of communication and information which need to be included specifically. The particular issues of people with psychological disabilities in certain areas (right to refuse medical treatment, for instance) need to be covered by the Convention.
Right to employment
The article on employment would need to include the following elements, among others:
Right to health
The article on the right to health would need to include the following elements, among others:
Right to vote
The article on the right to vote to include the following elements, among others:
There are many other important elements that will need to be included in the future Convention, but EDF would like at this stage to draw the attention on the following specific issues that represent areas requiring further development.
Right to life
Current developments in population demography, ethics and medical technology present increasing challenges to the right to life for disabled people. Prenatal diagnosis aiming to prevent the birth of persons with disabilities and dangerous developments in the field of euthanasia, will require a special attention in the future UN Convention.
Women with disabilities and other disabled people facing double or multiple discrimination
Special attention needs to be given to women and girls with disabilities, as well as older people with disabilities, immigrants with disabilities and disabled people from ethnic minorities.
Persons with disabilities in institutions
One of the most striking human rights violations is that suffered by persons with disabilities confined in large residential institutions, mostly people with psychological and people with intellectual disabilities.
The UN Convention must give particular attention to this group of persons with disabilities, by establishing a timeframe by which these large residential institutions must be replaced by alternative community based services.
During this process of establishment of alternative services, the human rights of persons with disabilities in these institutions should receive special attention in the form of monitoring systems.
Accessibility as a precondition to full enjoyment of human rights
The lack of accessibility is for many persons with disabilities one of the most relevant barriers to the full exercise of their human rights. A Convention needs to both prevent new barriers and progressively eliminate existing barriers, if it really is to ensure the equal enjoyment of opportunities for persons with disabilities.
Accessibility means different things for different groups and must therefore always be understood in a comprehensive way. It includes, among others:
The Convention needs to tackle these different barriers by:
Awareness raising and dissemination
Attitudinal barriers faced by many persons with disabilities can only partly be overcome through legal action.Thus, awareness raising of the general population as well as training to more targeted groups on the rights of persons with disabilities can play a major contribution to the removal of negative stereotypes and social stigma encountered by persons with disabilities.
The Convention should include a specific article, obliging States to undertake these actions in consultation with representative disability organisations.
The Importance of the role of disability organisations
Rule 18 of the UN Standard Rules foresees the right of persons with disabilities through their representative organisations to be involved in policy making processes.
Consistent with principles of due process and participation under international human rights law and the UN Standard Rules, the UN Convention must provide for the meaningful participation of people with disabilities.
In this regard, the Convention must provide for the involvement of persons with disabilities and their representative organisations in its implementation, and accordingly provide adequate support for this involvement.
Development co-operation and the Convention
The UN Convention shall undoubtedly influence the way development co-operation is provided.
Both donor governments and agencies and recipients of development co-operation funds, must ensure that these funds contribute to the enforcement of the UN Convention by:
Prevention of disability
While there is no doubt that Member States should undertake actions to prevent disability, including public health campaigns, road security and other measures, the proposed Convention addresses the rights of persons with disabilities, and is not the appropriate instrument to focus on prevention concerns.
Monitoring and Evaluation mechanism of the implementation of the Convention
The Convention should also provide for a monitoring and enforcement mechanism that is comparable to the existing human rights treaties. The new Convention shall not be a second class treaty, but should have monitoring mechanisms that represent the latest developments in international law.
A Treaty monitoring body, including a majority of persons with disabilities, will play a vital role in giving content to the Convention. The obligation for Member States to present periodic reports, as well as the possibility for individuals and representative NGOs to present individual complaints should be another feature of the Convention.
The establishment of technical bodies to provide guidance on certain issues might also be foreseen in the future Convention in the areas of, for example, accessibility to the built environment and information technologies.
Mode of negotiation of the Convention
EDF suggests the establishment of a working group which would receive a mandate of the Ad Hoc Committee to progress work on the content of the Convention in between Ad Hoc Committee meetings.
The working group would be composed by relevant experts, with direct experience in disability issues, appointed by UN Member States on the basis of equitable geographical representation, as well as representation from the NGOs representing a broad range of the major forms of disability. The working group would be the focal point for contributions from all stakeholders, including representative organisations of persons with disabilities like the International Disability Alliance (IDA) and the European Disability Forum (EDF). The working group would be chaired by one of the members of the Bureau of the Ad Hoc Committee and a maximum of transparency of its work should be ensured.
A sufficient budget would need to be allocated to allow for a minimum of four two day meetings of the working group between each Ad Hoc Committee meeting. The working group should also receive appropriate secretarial services.
A good balance needs to be found between a swift process and a good outcome and the allocation of resources in terms of finances and expertise is the basis to find such a balance.
Views on the complementarity between a new instrument and the existing international instruments
The relation between the future Convention and the current Conventions
The new Convention is not an alternative, but a needed addition to the current six human rights Treaties, which do not sufficiently cover the rights of disabled people. The new Convention will make disabled people visible in the UN human rights machinery.
The relevant treaty monitoring bodies are unlikely to be able to focus consistently on disability due to the pressure of their work. Even if they could, they lack any membership with expertise in the field.
For disability NGOs, usually lacking resources, they currently have to split their focus among six different treaties. And mainstream human rights NGOs, although some recent positive developments, take very little interest in this issue.
As stated by Quinn and Degener, “a disability-specific convention could prove to be the best possible catalyst for the mainstreaming of disability in the existing treaty monitoring machinery” and that “a convention is necessary and would underpin – and not undermine – the existing instruments in the field of disability”.
The new treaty will have a treaty monitoring body. This will provide for the first time space within the UN system for real human rights expertise in the field of disability. As this expertise grows in authority and credibility, the other human rights treaty monitoring bodies can be expected to pay much more attention to the issue. Something that has happened after the adoption of CEDAW.
The relation between the future Convention and the UN Standard Rules
As stated in the 1998/31 Resolution of the UN Human Rights Commission, “any violation of the fundamental principle of equality or any discrimination or other negative differential treatment of persons with disabilities inconsistent with the UN Standard Rules … is an infringement of the human rights of persons with disabilities."
It is vital that such acknowledgement be replicated and reinforced by adoption in the Convention on the human rights of persons with disabilities. Moreover, the proposal of the Special Rapporteur on Disability to the Commission on Social Development to modernize and supplement the UN Standard Rules should be supported by the EU.
 Recommendations for Final Report: Disability Caucus, UN Ad Hoc Committee, New York, July/August 2002.
 III B Principles for the draft of a future Convention. Report of the expert meeting on the future United Nations Convention to promote and protect the rights and dignity of people with disabilities (Mexico, from 11 to 14 of June 2002).
 Council Directive 2000/78/EC establishing a general framework for equal treatment in employment and occupation.
 The Madrid Declaration “Non discrimination plus positive action results in social inclusion” was adopted in March 2002 at a large European disability congress held in Madrid. http://www.madriddeclaration.org
 See footnote 3.
 Council Directive 2000/78/EC establishing a general framework for equal treatment in employment and occupation.
 Gerard Quinn and Theresa Degener, “Human Rights and Disability – the current use and future potential of United Nations human rights instruments in the context of disability” – February 2002 – UN Human Rights Commission.