Disability Negotiations Daily Summary Volume 2, #6 June 23, 2003

Morning session

Commenced: 10:15

Adjourned: 10:45

Agenda Item 7(d) Complementarity between a new instrument and existing instruments

The Chairperson announced that he did not have a list of state speakers, only representatives of NGOs. He began the session with a call to the delegates, if any one wanted to take the floor. 3 countries volunteered to speak.

Greece reaffirmed the view of the EU that "the new Convention on the enjoyment of all human rights by PWD should develop certain provisions of existing human rights (HR) treaties with a view to tailoring them, where relevant, to specific circumstances faced by PWD. It thus followed that the Committee's work should be based on such existing treaties, in particular, the six core HR treaties, and be fully consistent with their provisions. The new Convention should neither undermine, nor simply duplicate the provisions of other HR instruments." Greece further elaborated that "the European Union regards the UN Standard Rules (SR) as an instrument for policy making and action." However, it agreed that these rules are in need of refinement and updating and emphasized that the letter process should not be delayed by the elaboration of the new Convention on the enjoyment of all human rights by PWD. In this context, "policies and programs are called for, which should be inclusive, supportive of communities and families and ensure equal access to services and programs for all." Greece concluded by emphasizing that the "EU also strongly believes that the process of elaborating a Convention should take place in parallel with concrete efforts to mainstream the disability perspective into the monitoring mechanisms of the six core UN human rights treaties." "It is through such combined and concerted action, that we shall ensure equal and effective enjoyment of all human rights by PWD."

Canada encouraged the Ad Hoc Committee to "consider a question of complementarity from two perspectives. First, there was a question of complementarity between a new Convention and existing treaties and non-binding instruments related to the HR of PWD. Secondly, there was the question of complementarity between monitoring mechanisms set up under these different instruments." Canada announced that they had supported various efforts adopted by the UN in the past to promote the HR of PWD, and urged that the new Convention be carefully designed to provide a comprehensive framework for the effective protection of the rights and dignity of PWD by filling in the gaps in the existing instruments. However, they warned that "we must remain attentive to issues of potential overlap and the need to maintain consistency across the various instruments in question. At the same time, however, Canada believes that the Standard Rules can continue to play a useful role in complementing any legally binding instruments." They concluded by announcing that they "would welcome creative proposals as to how monitoring of a new Convention would interact with existing treaty monitoring mechanisms as well as those established under the Standard Rules and the World Programme of Action."

Australia announced that they "considered the report prepared for the UN High Commissioner is an important resource for work on the proposed instrument." They supported many of the conclusions in the Report, particularly, the recommendation that "any new instrument should complement and not undermine existing human rights instruments." Australia agreed with the Report's recommendation that "treaty bodies should place greater emphasis on disability issues; that in their reports State parties should be encouraged to think of disability as a human rights issue rather than as a welfare or medical issue, and that treaty bodies and state parties should promote NGO participation in treaty processes." Australia concluded by expressing their belief that "the development of a new instrument should be accompanied by further efforts to ensure that the protection provided by existing instruments to PWD is fully recognized and clarified."

Agenda Item 7(d) NGO Interventions

The International Disability Alliance and Inclusion International intervened on behalf of their 7 member network inclusive of all forms of disability; including intellectual and psychiatric. "People first" is also their belief, however reality for PWDs in many countries remains that of an "underdog" status. They support an international Convention protecting the value of PWD as persons, valued for "who they are, what they are and what they bring to their communities." Help is needed in overcoming barriers, and ameliorating suffering from abuse, neglect and degrading treatment. As some PWD are "locked up in cages, barely fed, and have no contact with family or the outside world," the urgency of the situation was apparent. They expressed that even when PWDs are "not badly treated," they are "still not equally treated as other citizens." The real situation is that often special laws "instead of protecting ... take rights away." Old-fashioned guardianship laws have "caused much suffering; even if made with the best intentions" and are used to restrict where and how PWDs live, especially those suffering with intellectual or psychiatric disabilities. They request that all parties "join in drafting an international Convention." Their goal remains to assist people in all parts of the world in treating PWDs with the same equal rights as non-disabled citizens. The representative voiced his personal conviction that a plain English document fully accessible to all people, and easily read by "average people" would be the best draft format. Also expressed was the position that writing a Convention without the participation of PWD would devalue them as persons. "Nothing about us without us," was reiterated, as PWDs "have great knowledge of the role of disability as they live in it every day of their lives."

The World Federation of the Deaf, speaking on behalf of the International Disability Convention Caucus mentioned past discussions regarding whether a thematic Convention would undermine the mainstreaming of disability in the current HR machinery. As it this was not the case for racial and gender discrimination, nor the Convention on the Rights of the Child, this would not be problematic with the present thematic Convention. Since PWD are often "the forgotten ones ... invisible citizens," a thematic Convention will make the disabled "visible to society." WFD and IDC's position that a thematic Convention is no contradiction within current UN HR machinery was echoed in the Office of HR Commissioner's Report accelerating the mainstreaming of disability in the six existing instruments. This was not at the cost of excluding disability from existing HR instruments, but quite the opposite. The new Convention's treaty monitoring body would provide, for the first time, space within the human rights system for real expertise on disability. As this expertise grows in authority and credibility, the other monitoring bodies can be expected to pay more attention to the issue. Such a pattern has emerged after the adoption of CEDAW. In addition, as stated in 1998/31 of the HR Commission any inconsistency with the UNSR would be an infringement of the existing rights of PWD. Finally it was vital for PWD recognition that the Convention modernize and supplement existing UN Standard Rules. In summary they supported the "multi-track approach. Nothing about us without us."

World Network of Users and Survivors of Psychiatry (WNUSP) addressed the complementarity issue by highlighting their strong belief that the international Bill of HR "did not address or misaddressed the promotion of rights for persons with psychiatric labels." Related disability issues mentioned included the following: 1) basic rights are taken away from psychiatric survivors, including forced institutionalization, often for life 2) treatment issues may be involved 3) there is prevention of the expression of PWD rights to peacefully assemble, marry, vote and others 4) a similar situation exists in areas of social, economic and cultural rights 5) slavery in so-called "sheltered workshops" or mental institutions occurs 6) mistreatment is broad-based, affecting children, women and ethnic minorities as well 7) cruel, inhumane and degrading treatment has been reported by governmental organizations (GOs), non-governmental organizations (NGOs) and grassroots disability groups in a great number of countries. WNUSP firmly put forth the position that the "existing bill of HR, has not sufficiently proven" itself effective in this area. Highlighted examples included those with psychiatric labels being forced into institutions, as well as the lack of enforcement of HR within these hospitals and other institutions. WUNSP expressed their belief that adoption of the outdated medical model would continue to engender a patronizing attitude, and serve as the legal basis for involuntary committment. WUNSP remained "deeply convinced that no solution outside a ...comprehensive legally binding treaty" could be effective. They stressed that other existing documents * should be recognized as the antecedent of this new emerging Convention, with monitoring mechanisms incorporated that will enhance UN committees. Proper implementation of monitoring would involve meaningful involvement of PWD and NGOs in existing HR bodies.

Afternoon Session

Commenced: 3:15 PM

Adjourned: 6:03 PM

The Chair called on States to make their "best effort to reach consensus on a legally binding instrument." He called the Committee's readiness to elaborate on a Convention, a "historic decision" that commits states to a negotiating process that is both transparent and inclusive of views of all member states as well as above all those belonging to "this important group" of organizations of people with disabilities. He announced that a document will be posted on the Internet and encourages participants to add their views and criticisms, in order to have an integrated document that will facilitate knowledge for everyone. He assured that as President he will always be ready to seek prompt clarification in order to maintain the transparency of the process. He noted that he will not allow the use of tactics or "private agendas" that will create obstacles to the decisions of the majority of member states.

Panel discussion on "new and emerging approaches to definitions of disability: conceptual frameworks, varying contexts of definition, and implications for the promotion of the rights of PWD."

The Chair noted that the purpose of this exploration was not so much to derive a definition of who is covered under a definition of disability but to aid in the determination of the scope of a convention.

Mr. Scott Brown, of the U.S. Department of Education, qualified his presentation as his own and a result of his work with the UN, and not the view of the US Government. He congratulated the panel for saving this discussion for the second week of proceedings because meetings often start with technical, clinical, and medical discussions of disability and "issues of equal opportunity and access sometimes get pushed to the back of the conference." He discussed the "New Universe" of disability and how many conditions (AIDS, aging populations) that lead to disability now would not have been part of the discussion twenty years ago, emphasizing that unlike in the case of the women's and children's convention, the "view of who is disabled may change over time." If the Convention is to be a "living and breathing international document" it must allow for fluctuation and change.

Brown illustrated his arguments by raising the definition used by DPI: "Disability is the loss or limitation of opportunities to take part in normal life of the community on an equal level with others due to physical and social barriers." This has been a useful definition for advocacy purposes. If adopted in the context of a convention it might cause a problem because the disability is defined almost as the violation of human rights itself. Disability = denial of opportunity according to the DPI definition and this parallels a notion that "a woman is not a woman until she is discriminated against due to gender". Brown suggested that disability be thought of as "a situation" involving persons who have functional conditions who may be "at risk" for the loss or limitation of opportunities to take part in the normal life of the community.

Brown highlighted the need to consider definitions of access because if PWD are "denied basic rights to access, they cannot exercise their rights in other areas." He offered a definition of access that could be considered: "access is not an act or a state, but a liberty to enter, to approach, to communicate with, to pass to or from, or make use of a situation." Disability needs to be looked at in situational terms with specific attention to issues of access to human rights. He offered seven elements of access that could be considered in the Convention: (1) orientation or exchange of information; (2) independence or choice; (3) mobility; (4) occupation of time; (5) social integration; (6) economic self-sufficiency; and (7) transition (to the next stages of life).

Catherine Barral, an expert on international classification of impairments and disability from France and Chief Editor of the journal "Handicap" posited three major conditions required for a convention: 1) incorporation of a human rights perspective into the relationship society constructs with PWD; 2) existence of the political will for implementation; and 3) reliance on participatory democracy and the active role and judgment of PWD organizations. Society builds "specific relationships" with PWD over time, and the dynamic tandem of inclusion-exclusion relates to the type of relation built. It is necessary to determine who, how, and to what degree a PWD is affected by inclusion-exclusion at various times and across different social groupings. There are different ways of approaching and understanding "loss of opportunities". She referred to social science researchers, Henri-Jacques Stiker and Jean-Francois Ravaud, who have elaborated the typologies of exclusion of PWD: 1) elimination (e.g., genetic screening for medical 'cures' and forced sterilizations, though the "most radical form" of elimination is death); 2) abandonment and deprivation of care (e.g., transfer of parental authority); 3) segregation, i.e., different shades of inclusion (e.g., transfer to special institutions that are intended to be short-term but end up being a "detour that does not come back around"); 4) exclusion via assistance or "conditional inclusion"; 5) marginalization (i.e., inclusion through normalization, the attempt to reduce "deviations" from the norm); 6) discrimination, i.e., the act of treating equal persons inequitably. She called the need for equalization of conditions for PWD part of the central code of values of modern societies governed by the equality of citizens before the law.

Professor Kofi Marfo made a slide presentation based on two assumptions: (1) the process of drafting a convention faces the same challenges that those in disability services face all around the world and that finding "universal processes" can help their cause tremendously; and (2) recognizing and respecting the reality of profound cultural differences makes it difficult to "bring about a document." He highlighted the need to understand disability in a broad context, and the need to look at both local and global concepts when discussing the question of worldwide effective implementation of a Convention.

He discussed how the definition of disability has evolved over time and how it is no longer seen simply in terms of biology (disorders, disease, impairments, disabilities, and handicaps) but is defined in terms of "how impairments may restrict activity of an individual" and highlights how activity affects participation.

The global community must address local conceptions of disability and how traditions, principles, belief systems, metaphysical roots impact definitions of disability, which has to be understood within a socio-cultural context. In particular, Marfo highlighted the importance of families and community in the responsibility for caring for PWD in developing nations, and cautioned against replacing these structures with governmental processes, which could "eat away" at those mechanisms in place at the local level. Marfo also highlighted how local conceptions of disability can be different from national conceptions of disability and how this must be addressed to ensure a Convention would be put to use effectively in all parts of the world.

In discussing those differences, he highlighted how differences can be approached at both a cultural level and a psychological level. Drawing from University of Chicago Professor Richard Shweder's cultural differences model, he said how differences can be approached from three perspectives: (1) universal; (2) evolutionary; and (3) relativist. The perspective we use impacts on the model of discourse we choose, on the nature of disability and rehabilitation or another approach. There is a need, he argues, to understand the local context with regard to implementing programming. These difference issues, he argues can also be approached at a psychological level. Disability can be seen as residing in the individual or as a "manifestation of interaction between person/level and contextual factors."

Question and Answer Period

Benin reaffirmed Professor Marfo's statement on the need to have different approaches to disability according to need. He asked Marfo to explain the local conceptions of disability and handicaps in Ghana. Marfo said that any discussion must also integrate an analysis of language because in African society, no one label captures disability. He highlighted the impact that social, family, and communal responsibility have on how people in Ghana approach disability. He surmised that how a given society, especially in developing nations, thinks of responsibility, cannot be seen just in terms of cultural values because social and economic factors interact with those values and determines their impact.

Greece, on behalf of the EU, took the position that it is inappropriate to focus on definitions of disability at such an early stage in the process, as was outlined in their background paper. The delegate asked: (1) Is the definition of disability essential to the production of a Convention? (2) Can that definition be translated to a state level, especially with regard to the difference between disability and discrimination? (3) If a definition is appropriate and achievable, how did the panel view the timing of the discussion on this issue? Marfo answered the first question by saying it was not as important to come up with a definition as it was to understand some of the contextual values that affect how a Convention could be implemented on a universal level, and not only in places with a particular belief system. Brown answered the second question by saying he doubted a definition could be translated into state legal frameworks at this time; it did not mean a discussion of these issues should not occur because issues of heterogeneity and diversity are important in developing a Convention. Ms. Barral doubted the need for a convention and questioned whether it could be applied universally and reiterated the importance of seeing disability as a result of the relationship between the individual and the society that he/she lives in; it is the "fruit or outcome of a situation." Mr. Brown said the panel agreed a definition is not achievable at this time, in response to the EU's third question.

Thailand reaffirmed that accessibility has to be "defined, described, and incorporated in the Convention" regardless of a definition of disability and argued that any Convention has to address not only differences in local conceptions on disability bit also the complexity of needs of all disability groups.

South Africa made its hesitation about coming to a definition of disability clear, and asked Mr. Brown whether the ICF describes functioning within a particular environment and asked for him to clarify how that could be applied to the Convention. Brown said there is an important distinction between functioning and access because functioning is "something you do" and access is "something you have." He recommended that the focus stay on defining access rather than disability, given that access is what human rights is about. He highlighted how it was impossible for a Convention to address each situation and emphasized the need to look at the global situation, and development issues. He called "fashioning a global document that takes into account local and national pieces" a "difficult task" but emphasized the need for a balanced approach. The Convention must be broad enough to encompass the disability experience, the social and economic context, and the solutions to the experience without being too broad, as it is a human rights document. Ms. Barral said that she was not convinced the ICF classification model was applicable but it deserved closer attention. She called for attention to a variety of variables which impact definitions of disability in various environments.

Jamaica noted its "support" of the elaboration of a convention despite its earlier absence. The delegate expressed his "disgust" at the use of the term "handicap" in light of the knowledge that environmental factors create the so-called handicap; yet PWD are sometimes referred to as handicapped people. He noted a paradox, referring to the E.U.'s discussion of the definition of disability: the "brightest of minds" have been "grappling" with definitional questions for years, one "can't expect us to come up with [a definition] in three hours", yet it is "pertinent" to "look briefly at some issues" so that "those engaged in drafting understand the perspectives" of different regions and countries.

Brazil referred to the Inter-American Convention (the "Guatemalan Convention") of 1999, which has the following definition at Art. 1: The term disability means a physical, mental, or sensory impairment whether permanent or temporary that limits the capacity to perform one or more essential activities of daily life and which can be caused or aggravated by the economic and social environment. The delegate asked for responses to the definition from the panelists. Marfo reiterated the need to understand local variables and conditions external to an individual's 'impairment'. The Chair asked the delegate for a couple of repetitions of the definition. Brown noted that "the heart of the definition" is disability as 'impairment'. Barral expressed that she "deeply" disagreed with the definition and said she "would not retain" it. Marfo said one of his fears is an either/or mentality, noting that the definition was "certainly an incomplete [one]", but noted impairment is "one component" and that those who wrote the definition "may have been aware of endemic environmental conditions that contribute to impairment".

Mali appreciated the clarity and relevance of the points raised by the panel, yet asked for "descriptive elements" as the panelists seemed to be "questioning their own definitions", as well as a follow-up from Ms. Barral regarding the distinction between segregation and discrimination. Barral explained that segregation is structural (the "whole system" of institutionalization) whereas discrimination is an act of singling-out and identifying someone as being different, though she noted "the limit between segregation and discrimination is not very obvious".

New Zealand reiterated its position that a convention should be broad and inclusive; consistent with a rights-based approach; and that there is need for clarity between the "experience of impairment" and the "process of disability". The delegate illustrated by referring to the New York subway system and the difficulties of access if one does not read; maneuver stairs; possess the manual dexterity to swipe the farecard; or if one experiences either anxiety in crowded/dark spaces or is "made to feel that they are in the way". The delegate acknowledged that there was not a specific question for the panel.

The Chair instructed the ILO representative, in light of the fact that their statement was available in written form, to synthesize the statement into a question. While the ILO definition of a disabled person as one whose 'prospects of securing, retaining and advancing in suitable employment are substantially reduced as a result of a duly recognized physical, sensory, intellectual or mental impairment" deals "specifically with employment" it could "form the basis of a more specialized definition".

IDA proposed that the discussion of definition be "postponed" to the last item of consideration. The Chair thanked IDA for its "short statement". Landmine Survivors Network noted the multiple facets and factors relating to disability and remarked that in many countries, landmine survivors are perceived as PWD, and are therefore excluded and denied rights. DPI noted that disability, while a widely-used term is "differently understood" across cultures and that DPI has not had a "working definition". The Disability Caucus found the sociological view presented by the panel to be "very useful" and advocated that any definition be kept "simple and broad" and accurately reflect the "lived realities" of PWD.

The Disability Negotiations Daily Summaries are published by the Landmine Survivors Network, a US based international organization with amputee support networks in 6 mine affected / developing countries. Reporters include Jagdish Chander, Margaret Holt, Jennifer Perry, Marshall Traster and Zahabia Adamaly (editor) The Summaries are posted on line by noon the following day at www.rightsforall.org and www.worldenable.net and translated into Spanish, French (Handicap International), and Japanese (Japanese Society for Rehabilitation of Persons with Disabilities). For questions, write to Zahabiaadamaly@hotmail.com.