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UN Convention on the Rights of People with Disabilities
Working Group Daily Summary
A service made possible by Landmine Survivors Network

Volume 3, #7
January 13, 2004

Morning Session

Commenced: 10:17 AM
Adjourned: 1:03 PM

RIGHTS TO SOCIAL SECURITY AND TO AN ADEQUATE STANDARD OF LIVING

Venezuela noted that although PWD live throughout the world, most live in developing nations, where they are among the poorest of the poor. In this regard, the Convention should include a right that most PWD do not possess today, that is, the right to social security without any tax restrictions or the requirement for prior contributions. Without this right, the majority of the PWD cannot obtain essential goods, including medicine and food, and important technical assistance and services such as wheelchairs, alternative transportation, etc. Social security is very important for particularly vulnerable PWD, such as those who are ill, unemployed, pregnant, or those with severe/multiple disabilities. Social security assistance is also important with regard to family care-givers who cannot work and contribute income to the household because they must stay home to care for or assist the PWD. In such cases, financial constraints also prevent families of PWD from participating fully in society. In this regard, only social security can provide for many of the needs of disabled people and their families. This is a matter of equality and an article on social security should ensure that legislation on this issue allows for equitable treatment and should reflect the other points made.

Landmine Survivors Network agreed with the EU's proposal that there should be a distinction between social security and a proper standard of living, as such a distinction is made in the CESCR.

Slovenia offered full support for paragraph 4 as it refers to the case of children and persons that are not in institutions, or being taken care of by their families. It should address the idea that families should receive assistance for not only disability-related expenses, but also for counseling. In any case, the best guarantee for independence and social security is employment.

China commented that as all PWD should have access to social security insurance. State Parties should adopt measures to guarantee that all PWD have access to this, even if they are employed, as employment can be inadequate. The measures should also provide favorable treatment for PWD, especially those who are unemployed, ill, elderly or pregnant. Social security should also guarantee that those PWD who cannot find employment, are able to enjoy a minimum standard of living.

RIGHT TO TAKE PART IN CULTURAL LIFE, RECREATION, AND LEISURE

World Federation of the Deaf generally supported the article because it gave possibilities for a person to develop personality and be part of society and included a paragraph that supported the language and culture for the deaf. Paragraph 3, should be elaborate to affirm that general cultural opportunities should be available to the deaf. In this context, deaf children who have yet to learn to read in right should also be able to access national sign language translation for videos and TV programming. National sign language interpretation should also be provided in general cultural activities. Allowing for both forms of access would allow deaf people to create their own cultural activities, but also be able to partake in general cultural opportunities that are available to the rest of society.

World Federation of the DeafBlind called this article important for the deaf-blind many of whom are natural artists. Beethoven wrote his most famous symphonies when he was deaf, and Monet painted some of his best paintings when he was visually impaired. Because the deafblind do not have much access to information from the outside, they instead develop inner-artistic talent and creativity. However in order to develop inner creativity, deafblind people also have to experience what others have done. They need to feel and touch the products that have resulted from the creativity of others. In this sense, museums should also be accessible to the deafblind.

Japan supported the article in principle but had one suggestion on paragraph 2. As copyright is not only protected by domestic law but also international law, the phrase "in accordance with international agreements" should be added to the end of the paragraph to avoid any misunderstanding in interpretation. For example, although Braille is a rather exceptional case, audio tapes are provided to both PWD and people without disabilities.

Although Ireland supported the general intent and thrust of the article, it referred the WG to Article 8e of the EU Draft because it had an issue with how the first part of the article was formulated. The article was related to accessibility and reasonable accommodation, the members should look at it in the context of what has been developed on those concepts. Ireland shared Japan's concern on paragraph 2, because though it agreed with the concept, "intellectual property rights are a minefield in international law." Another concern was that paragraph 3 might be better placed in an article on the recognition of diversity. With regard to paragraph 4, a great deal of sport/leisure activity is voluntary and independent from government, such as the Special Olympics. In this context, the wording of the paragraph should take account of other organizations and associations, not just government.

The World Network of Users and Survivors of Psychiatry (WNUSP) noted the relevance of 1(a) to those who have psycho-social disabilities as it can help them reach the stature of artist and allow for their contributions to be recognized. Scientific contributions are sometimes included in this area.

The Inter-American Institute on Disability (IID) said that this article is important to the integral development of PWD. As noted by WFDB, active participation in cultural opportunities is necessary for PWD to develop their own cultural identity and creativity. In order for this to happen, people with physical disabilities must have physical access to those opportunities, and those who are deaf and/or blind must be provided with interpretation, closed captioning, easy to read materials, and/or materials in Braille, such as Costa Rica has done by adopted legislation requiring disability access to national nature areas for PWD. As a result of the legislation, people with physical disabilities can visit volcanoes and blind people can fully enjoy historic and natural areas. With regard to sports, IID said that PWD should not only have access to competitions as a spectator but also sports in general, including equipment, trainers and facilities.

Colombia supported Ireland and IID and said that PWD must be able to participate in all sport activities. Columbia suggested that 1(b) would be better placed in Article 15 as it relates to accessibility to information in alternative formats. Similarly, the question of intellectual property should be addressed in Article 15.

Thailand echoed previous concerns on the issue of intellectual property, regardless of its placement the text. Copyright laws are meant to protect creators but it should not create a disadvantage for any group of people. In some cases, this law has been used and distorted in such a way that causes restrictions on PWD, who need access to literature in formats even if a text was meant to be published in only print. If there is a provision against modification in copyright laws, it could restrict the access to alternative formats. The US addressed this with an amendment to copyright law in 1996 stipulating that transferal to electronic text (so as to provide an alternative format), will receive copyright exemption. The convention will need to be very careful with regard to such legalities, but it should ensure that such laws not bring about unreasonable restrictions on PWD. Thailand also suggested that the word "tape" should be replaced with "multimedia" in 1(b) to take into account the needs of the dyslexic, illiterate, and blind. Concerning sport, although it is true that many organizations are independent, many receive subsidies from government. To this end, there is no reason not to mention these organizations in the article.

LSN said that the article was important to both PWD and those who did not have a disability and noted that for PWD in particular, sports can be "a fast track to rehabilitation". As a person who had participated in the 1996 Summer Paralympics in Atlanta, he noted that while the Olympic games are seen by millions, the Paralympics are seen only by a few hundred. LSN suggested that four points be considered on this issue. (1) International sport activities for the disabled and non-disabled should be merged; discrimination should not be justified by the fact that disabled athletes also compete among themselves. The national teams should be composed of both sectors in one tournament with separate events. This will help to raise awareness and help remove stereotyping regarding the capabilities of people with disabilities and helps promote the sports of people with disabilities. (2) Disabled children should not be prevented from participating in sports and cultural activities in school. (3) Countries should take positive measures to attract PWD to participate in sports. (4) Sport clubs should have special activities for the disabled, even if they cater to the non-disabled. There should not be separate clubs for the disabled and non-disabled.

Jamaica commented that the hospitality industry incorporates all factors of the hotel industry and tourist trade. Access to culture, recreation, and sport opportunities can create economic empowerment if necessary support is available to PWD. In this light, sporting activities for the disabled are important, if rehabilitation and incorporation into the larger society is to take place. International cooperation is important in this article and should not be limited to resource/financial support. International institutions (such as the International Olympic Committee, and the International Cricket Union) should have a role in developing sporting activities for PWD (irrespective of disability).

Canada concurred with the comments made by Japan and Ireland on intellectual property rights in paragraph 2 and said that both Colombia and Japan's suggestions could be a helpful first step in dealing with this issue. Also, because paragraph 4 is trying to capture the idea that PWD should have equal opportunity to participate in these activities; the phrase "equal access" should be added to 4(b) and 4(c). Provisions regarding how sporting organizations should be organized should be avoided, as this would go beyond the mandate. As a general comment, the use of the world "recognition" should be avoided because it could create unintended legal implications.

China said this article should ensure the equal footing of the disabled in these areas of activities and noted the positive effect of participation on self-image. In addition to emphasizing non-discrimination, the article should mandate that States ensure disabled participation in cultural life and leisure (ex. Special Olympics) and should provide support for such activities.

Inclusion International emphasized the talent of those who are intellectually disabled and their ability to enrich society with creativity. In this regard, cultural life should not be limited to academic and sophisticated topics. Though movements like the Special Olympics are necessary, people with intellectual disabilities should also participate with non-disabled people in order to learn new skills. To this end "segregated sports are fine" but the article should ensure that PWD can compete with the non-disabled as well.

WFD noted the importance of dealing with international copyright laws as this would also protect and cover professional artists with disabilities. Disabled people should have access to education so that they can pursue any profession, including in the arts. If facilities are provided to allow this, there are unlimited opportunities for PWD to pursue these careers, just as a deaf actor who received an Oscar has done. With regard to paragraph 3, the wording should be changed For example, some countries have a national deaf theater and national TV broadcasting companies and journalists who express themselves with sign language.

The Coordinator said the issue of copyrights clearly needed to be resolved, but as Ireland said, the WG does not have expertise in this field. The issue should be identified for the AHC to deal with.

Uganda commented that as many theaters and stadiums in developing countries are not accessible and the article on accessibility should also apply to these facilities. Issues of accessibility should also be considered when developing new facilities. The article should also do more than recognize that PWD should partake in such activities, but mandate that State Parties should promote these activities to the disabled. For example, in many countries, the government promotes national sport teams at a regional and international level. Disabled games and sports should receive equal funding and promotion.

Mexico said that the article should eliminate barriers and ensure equal access to these activities for PWD. It should also refer to culture, recreation, tourism, and sport. Sports also should be promoted at an early age for PWD. In this context, Mexico supported the use of incentives to reach high level of competition.

WFB raised the problem of the lack of commercial interest in technologies that would allow blind people enjoy movies in a language that they do not speak. These interests lie in copyright laws, which restrict the access of the blind to such information. The article should address this problem. WFB supported Thailand's position on the use of the word "multimedia." and reminded delegates of the existence of disabled sport organizations, such as the International Blind Sports Organization (IBSO), which are a good way for disabled people to take part in sports. More generally, the WFB commented that because many issues have been referred to the AHC, many NGOs will not have a chance to weigh in on the issues in which they have expertise.

Lebanon supported the proposals made by LSN and Mexico and suggested that the word "including" be replaced with "and" in paragraph 4, because sport activities are not only leisure activities.

Disability Australia Limited supported the views expressed by LSN and Lebanon and suggested that the chapeau of the article be elaborated to qualify the statement and apply the principles of non-discrimination and equality. With reference to sports, there has been experience of carrying out reasonable accommodations for PWD in this area, but the absence of standards of adjustments makes things difficult. For instance, many blind people play golf and different solutions have been developed to allow them to play. However, there is no exchange on these parameters/solutions, and the presence of different solutions to meet their needs prevents participation in main events and competitions, even at a national level. To this end, wording should be added to the text to reflect the intent of the paragraph on sports and "encourage the development of standards to allow for reasonable adjustments." A formal mechanism of international cooperation is needed to exchange knowledge and experience on the issue of adjustments for PWD in sports.

DEFINITIONS

The Coordinator noted that the previous decision to leave the definitions to the end was based on the prediction that many of the questions related to definitions would be addressed and resolved during discussion of the substantive articles, which, in fact, had been the case. For example, the definition of accessibility is largely dealt with on the article on accessibility and will be further clarified during the small group meeting at lunchtime. The next definition is "associate". The Coordinator suggested that this is a definition that could be referred to the Ad Hoc Committee (AHC), especially since this term does not appear in many places in the text.

Venezuela noted that the term "persons with disabilities" does not appear in the Chair's text and suggested that the following definition of this term (from Article 2 of the draft document Venezuela had submitted - p.35 of the Compendium) be added to the text: "Persons with disabilities" means persons with any form of physical, intellectual or sensory impairment, whether structural, functional or both, which constitutes permanent or temporary limitation, restriction, obstruction or dysfunction in respect of human beings' relationship to their environment that may be caused or aggravated by the economic and social environments."

The Coordinator noted that the Chair's text offers a definition of "disability" as do several other texts while others put forth definitions of "persons with disabilities".

Inclusion International stated that dealing only with "persons with disabilities" would be too limited and that the Chair's draft also refers to "associate[s]" and elaborates on the other people who are affected by disability as well as includes associates under the non-discrimination section.

Ireland drew attention to the EU comments on this subject (p. 28 of the Compendium) which assert that for the purpose of the convention it not necessary to define disability. The first reason is that numerous attempts have been made, which are all complex and not necessarily compatible. Secondly, an attempt to define disability may either lead to a very restrictive interpretation of the convention as a whole or else be so vague that it will be virtually impossible to implement on the part of governments.. In addition, in terms of implementation, different approaches to the concepts of disability may be necessary. In Ireland, a broad definition is appropriately and necessarily used in its legislation on equality. On the other hand, when dealing with assistance and entitlements, a more specific definition is essential. For all these reasons, refraining from defining disability in the convention seems the wise course.

World Network of Users and Survivors of Psychiatry stated that the most important thing is that the text ensure that people with all different types of disabilities, including people with psycho-social disabilities, are understood to enjoy the rights and be protected by all of the articles in the convention. The Venezuelan definition does not mention psycho-social disabilities, which are not the same as intellectual disabilities. The Standard Rules does cover people with psycho-social disabilities, although it does so under the term "people with mental illness" instead of the preferred "psycho-social disabilities". It would not be acceptable for this convention to contain less than the Standard Rules in this regard. WNUSP cautioned against defining disability using language that refers to "limitations on the ability to perform essential activities of daily life." This has been done in domestic disability law in the United States and has led to excessive litigation to determine whether or not a person is sufficiently disabled to actually benefit from the anti-discrimination legislation. This litigation has resulted in narrow interpretations of who is covered by this law and people with disabilities are being denied the protections to which they are entitled. This potential for poor or narrow interpretation must be avoided at all costs in the convention. Finally, if a definition is included, a social and human rights model of disability must be promoted instead the medical model.

Sierra Leone noted that it would be impossible to reach consensus on a definition of disability. Many forms of disability are already covered and explained in the various articles. The definition from the Chair's draft should be included in the text the Working Group (WG) submit to the Ad Hoc Committee (AHC), with a note urging the AHC to consider all types of disability in deciding on a definition.

The Coordinator supported that suggestion, especially in light of the fact that the AHC will undoubtedly make many changes to the text submitted by the WG. Therefore, striving to get the wording exactly right is a use of time that may be in vain and the WG might better dedicate its discussion to ensuring that the many critical issues related to definitions (including whether or not the convention should contain a definition of disability) are fully and clearly identified in the document that it submits to the AHC.

Columbia drew the attention of the WG to the World Health Organization's recently revised and adopted International Classification of Functioning of Disability and Health (ICF). Revised after extensive international research and analysis, the ICF contains several domains that describe body functions and structures, activities and participation and incorporates social and environmental factors. The ICF was used in the development of the definition of disability in the Bangkok text. The WG could place the definition of disability within the context, or the purview, of the WHO or simply mention that the definition of disability should be focused on this international instrument.

The Coordinator noted that the Bangkok draft offers three options for a definition of disability, which highlights the complexity of the topic and the difficulty the WG faces in arriving at a definition at this meeting.

World Federation of the Deaf supported the EU recommendation that no definition be included in the convention. Focusing on the limitations and deficiencies of the disabled person is in conflict with the purpose of the convention since the convention should address and attempt to rectify the social and environmental factors that inhibit persons with disabilities from claiming their rights in society. In discussing a definition, the ICF approach is a good one because it concentrates not on the disabled person himself or herself but on the environment and how to make it accessible. However, it is hundreds of pages and is very complex and it is difficult to see how it would be useful to the convention except as a reference. In conclusion, the articles of the convention cover the relevant issues and including a definition is not necessary and may, in fact, create problems in the convention.

World Federation of the DeafBlind supported the proposal that no definition be included in the convention but that the ICF be referenced.

Japan urged caution in developing a definition, believing that the Chair's draft may be too wide in scope. For instance, how is "temporary" to be interpreted with respect to disability? Japan noted, however, that it is not opposed in principle to including a definition in the convention.

Jamaica expressed that it had a different view from previous speakers and believed that the convention needs a baseline definition to serve as a guide for the document. Certainly, it should be made clear to States that the definition cited is not restrictive. When drafting legislation, States can refer to definitions of other States or those developed by organizations. However, it would be very difficult to rationalize drafting a convention without any kind of baseline definition.

The Coordinator noted the wide range of views and the need to develop draft language for the report that reflects the different options for addressing the definition of disability and the arguments behind them. This language will be circulated to ensure it addresses everyone's concerns.

The Coordinator referred back to the question of the word "associate", which has come up several times in discussion and which Inclusion International has indicated should not be ignored. This concept does not appear to be addressed in the draft language on Equality and Non-Discrimination, but perhaps should be included in that.

Thailand supported keeping "associates" in the definition of discrimination itself, even if this term does not otherwise appear in the body of the convention. "Associates" could be applied to people who are related in one way or another to persons with disabilities, and such an inclusive term could help avoid elaborating a long list of people. It is also a neutral term that does not have custodial or demeaning connotations.

Uganda noted that the reason to define a term in this kind of document is to avoid having to reiterate its meaning it every time it is used. Therefore, defining it or not depends on how often it is used in the text.

The Coordinator suggested that Inclusion International's point regarding this issue was less about the definitional or technical drafting point and more related to the substantive issue of addressing potential discrimination against associates of people with disabilities. The Coordinator recommended including a footnote on this in the text on Equality and Non-Discrimination indicating that this point needs to be addressed subsequently.

Inclusion International indicated support for this suggestion.

Disabled People's International suggested extending substantive point regarding associates to include parents of children with disabilities. The Coordinator said that he understood "associate" to include parents and intended that the AHC take up the issue of associates in the broadest sense.

Morocco asserted that the convention should include both a definition of "disability" and a definition of "persons with disabilities" in the convention and offered to submit suggestions for each in writing to the Secretariat.

World Federation of the DeafBlind noted semantic inconsistencies among the various options for defining disability as a clear indication that much more work is needed on this issue.

Ireland commented that the convention should focus firmly persons with disabilities. Others who may help or otherwise be related to persons with disabilities may be mentioned but we need to be very careful about extending the scope of the convention too far. The definition of communication also is somewhat unclear in terms of referring to the act of communicating or modes of communication.

China stated that general issues that appear repeatedly should be defined in the convention but certain technical issues could be left aside.

Noted that, regarding Ireland's point on communication, we should focus on modes or means of communication, since communication itself undoubtedly has a well-established and accepted definition. In the detailed list of modes of communication, tactile sign language should be added as it is important for deafblind people.

The Coordinator observed that communication is also covered in the substantive articles in the Text Proposed by the Coordinator on Freedom of Opinion and Expression and Access to Information (found in CRP3/Add 5) but not defined in them. He recommended that the discussion on the definition of communication be deferred until the second reading of CRP3/Add5 in the early afternoon.

The Coordinator noted many terms in the definitions section are addressed and clarified in various revised articles contained in Texts Proposed by the Coordinator and that the discussion on definitions could be concluding, understanding that there notes on certain issues would be included in the documents submitted to the AHC.

Afternoon Session

Commenced: 3.17 pm
Adjourned: 6.00 pm

Two Texts Proposed by the Coordinator were circulated as Conference Room Papers on topics that had already been through a first reading in the Working Group Plenary and discussed in thematic small groups. Mexico contributed the text of a new draft Article on eliminating stereotypes. The Preamble, which the WG had agreed to leave until the end of the sessions, was discussed for the first time using the Chair's Draft text as the framework, which was circulated that day, as well as the Preambles of the EU and other country drafts.

FREEDOM OF EXPRESSION AND OPINION, AND ACCESS TO INFORMATION

The Text Proposed by the Coordinator A/AC.265/2004/WG/CRP.3/Add.5 framed this discussion. Footnotes reflecting concerns or disagreements that were raised in the WG discussions will remain in the draft article to be submitted to the AHC. There will therefore be limited comment focusing on the more difficult issues permitted at this time, that could be covered in a further footnote.

South Africa proposed consideration of the role of the media, which plays "a pivotal role" in changing stereotypes. Article 8 (c) of the Mexican draft, on page 100 of the Compilation, alludes to the encouragement of mass media to play an integral role in awareness raising through information campaigns.

Inter-American Institute on Disability (IID) agreed with the concerns expressed by South Africa. The role of the media in creating change and "facilitating access of PWD to information" was missing from the Coordinator's Text. This is important in promoting a socio-cultural environment free from discrimination, especially in education.

Thailand proposed adding a sub-paragraph, which would enhance further access to information and bolster freedom of expression for PWD. The following language could be included at the end of Article 10: "establishing a system in each country to train and dispatch sign language interpreters, Braille transcribers, Finger Braille interpreters, and human readers and to encourage their employment." The delegate also raised the issue of copyright law in this context. The Coordinator noted that the question of copyright legislation is going to be referred to the thematic consultation on Article 21 (Accessibility).

India suggested that augmentative and alternative communication (AAC), used by people with Cerebral Palsy, should be included in the chapeau of this article among the modes of communication.

WNUSP suggested modification with respect to (e) of the text. Instead of "format for persons with disabilities" in the third line of this provision, the language "formats for persons with all types of disabilities" was preferred. The addition of "all types" in front of disabilities follows up with language in (a) taking into account all types of disabilities. As there may not be a single format available for everyone, it is crucial to pluralize format. There are people with autism who use alternative forms of communication similar to the one referred to by India. The WG should be open to including additional forms of communication as people with various disabilities make their needs known.

The Coordinator pointed to the wording "of their choice" in the WG text noting that these other forms are to some extent covered by this language. The WFDB suggested introducing the term "tactile" communication in order to include a more comprehensive category than "Finger Braille".

New Zealand noted the need for training around captioning and note-taking.

Jamaica supported the addition proposed by Thailand, as it is important to have individuals who are well-trained in their respective areas. In developing countries, often people are not well-trained. As such, even if the private sector wants to do something that is inclusive, there is a cost factor which those involved have to take into account. From an economic perspective, having more well-trained professionals will contribute to lowering general costs.

Ireland, speaking on its own behalf, noted that (a) of the Coordinator's text is intended to refer to a point made by Ireland regarding the provision of information following requests based on the freedom of information. Furthermore, the language "without additional cost" is ambiguous, as under the Irish Freedom of Information Act, people are required to pay for this service. The Coordinator clarified that this provision did not mean that information should be provided for free, but rather that it should be provided without "additional" cost to the person requesting information. The words "accessible, appropriate and usable" in reference to formats had overlapping meanings and could be simplified. Para (b) about PWD using alternative modes of communication with officialdom could be misinterpreted to mean that officialdom should be communicating internally in the same way as well. It was not clear whether para (c) meant that PWD will be provided with education in alternative formats, or whether they will be taught to use alternative formats? The meaning of para (d) was not clear.

With regard to (a), Canada presumed that the term "additional cost" was meant as with compared to other non-disabled users. The representative agreed that there is ambiguity with respect to (c) that might be alleviated with a drafting amendment. Point (d) was also unclear for Canada. In addition, Canada expressed preference for including Thailand's suggestion as a note in the draft, rather than as a provision. The representative underlined, on the one hand, that Thailand's suggestion does address some of the difficulties that PWD have, and on the other, that government-training programs are often geared to evolving needs. In other words, some training programs are adequate until technical advances render them outdated. Regarding the word "dispatch" in Thailand's proposed language, Canada questioned whether this program is intended to address needs in the public or private sector. It would be useful to have the sentiment and the object encapsulated in a footnote, as well as to formulate the idea in away that would elucidate the underlining objective.

China asserted that this article is mainly concerned with the right to freedom of expression and opinion and that the suggestion made by Thailand did not belong in this article.

Thailand clarified that the word "dispatch" indicates that after completing the program, trainees would be made available wherever they are needed. To "encourage their employment" means that they will not do work for free. Thailand reiterated the point made on (a) that no "additional cost" simply means as compared to the cost entailed in hiring other people.

THE ROLE OF THE MEDIA

Text of the new proposed article on the "Elimination of Stereotypes and Prejudices," was introduced by Mexico. Mexico had recognized the need for a more detailed provision on increased awareness and the role of other actors with respect to non-discrimination. This article obligates States Parties to adopt "immediate and effective measures" (reflecting language taken from CERD and CEDAW) to implement 3 objectives: 1. to create awareness throughout society regarding disability and PWD; 2. to combat stereotypes and prejudices against PWD; 3. to promote an image of PWD as full and capable members of society sharing the same rights and freedoms in a manner consistent with the purposes of the Convention. The measures include: (a). public awareness campaigning; (b). increasing awareness of children; (c). increasing the participation of PWD.

Ireland highlighted the intention behind the 3rd objective, as going beyond a vague commitment to "positive images" and get specific as to what these images might be. As regards measures, sensitizing children at early age is crucial, as attitudes learned by children are pursued well into adult life. Lastly, the use of the word "encourage" with respect to the media takes into account that states are limited in what they can ask the media to do. States should certainly "encourage" the media to follow through on their demands, but states cannot create obligations of the media in this respect.

Inclusion International (II) explored the question of who can change society, and stressed that it is PWD themselves who will change society by saying 'you do not treat people the way you did before.' II underlined that too often in past, it has been the non-disabled world that has tried to change "our perspective."

WFDB indicated that the article seemed appropriate, but requested time later in the WG to discuss it. Particularly the 9 blind people in the WG should have an opportunity to read it.

The Coordinator deemed this article consistent with the sentiment in the room and proposed to re-issue it as a revised document.

IID noted that in provision (b) of the proposed text IID preferred the wording "to generate awareness" instead of "sensitizing."

Ireland and Mexico underlined their fruitful collaboration. In addition, Mexico noted valuable contributions, with respect to language in the article, from Landmine Survivors Network and Rehabilitation International.

PREAMBLE

DPI noted that at the minimum, the Preamble should make a clear link between binding and nonbinding human rights documents such as the UNSR and reflecting prior developments in international law. None of the Preamble drafts refer to the paradigm shift in thinking about disability, which are "at the root of our discussions here." There should be clear reference to the shift away from the medical / charity models.

Inclusion International called the Preamble the right place to stress our vision - that persons with all types of disability should be accepted as "full citizens of their countries with equal rights and opportunities" and the need to eliminate discrimination globally.

WNUSP was "strongly opposed" to any reference to previous medical model UN documents that have not been accepted by the relevant DPOs, or have been in fact rejected for their "substandard protections", such as the Principles on the Protection of Persons with Mental Illness. While the Preamble is not binding, it can be a guide to the spirit of the convention particularly by a treaty monitoring body, and in this respect should cite some relevant human rights documents that are "in keeping with our vision".

The Inter-American Institute on Disability suggested 2 preliminary proposals on draft text: 1. "Recognising that conditions of poverty seriously affect PWD, especially in developing countries"; 2. "Recognising the importance of international cooperation as an appropriate means for achieving the full enjoyment of human rights and fundamental freedoms for PWD, in particular those living in developing countries."

Ireland supported the Preamble put forward by the EU (pg 9 Compilation) and provided a brief comparative analysis between the EU (numbered) and Chair's text (lower case letters). 1. generally corresponded with the link back to the UN Charter in (a); 2. the concept of universality is emphasized in the EU text; listing the types of discrimination as (b) does is too specific at this point; 2 and 3. in keeping with the EU's approach to the convention overall, to ensure effective enjoyment of existing rights by emphasizing measures of implementation and avoiding mention of new rights, it specifies the 6 major human rights instruments in more detail than (d) and cites the example of the CRC; 4. echoing the position of the WNUSP, the EU text did not wish to cite the list of UN instruments, that have now been superseded; 5. the UNSR is highlighted as in (d), but with an action orientation, specifying its call for measures; 6. the EU's text here 'shares the sentiment' of (e) on continuing violations; 7. the concept of diversity has been demonstrated at these meetings, that the problems of PWD are not the same; 8. and 9. the EU again avoids listing the types of discrimination, as in (i) but did feel that the situation of women with disabilities deserved particular mention; 10. the EU believes that, as has been reiterated, poverty is both a cause and effect, and situations of armed conflict (not dealt with at all in the Chair's text) inhibit the enjoyment of rights; 11. the question of accessibility is a major issue in the enjoyment of rights. Ireland would be happy to see any of these provisions incorporated into an overall draft to the AHC.

EDF said that the Preamble should be used to present a picture of the ideal society, and the policies that have to be put in place.to help PWD get there.

WFDB hoped that the Preamble will reflect "all our negative experiences," as this provides the rationale for this document. These experiences are "where this all started".

Japan called for para (f) be worded in a more positive manner. When there is a better sense of self determination as discussed after small group discussions, (g) could be amended accordingly. It was not clear to them that there was a connection between disability and the "eradication of poverty" as asserted in Article (h). Para (i) is too prescriptive, and establishes a hierarchy of suffering between people with different kinds of disability.

Canada advised that if language in (g) on self determination is to be retained then it would be advisable to await the results of small group discussions. The last 2 paras in the EU's text could benefit this Preamble, capturing expressions of concern from NGOs on the special challenges faced by developing countries on the question of poverty and the all important concept of accessibility.

RI anticipated a more positive and continuing role for the UNSR rather than "the backward glance" that is reflected in the current language of para (d). A rewording should reflect how the UNSR could function "in partnership with and in tandem with" this convention. In order to honor PWD choices and autonomy, "self determination" as mentioned in (g) could be followed by or replaced with "independent living" or "living independently." Finally, as stated by Canada, there is language in the EU text in the last 2 paragraphs that should be reflected here, on poverty and armed conflict and accessibility.

LSN proposed 4 amendments / additions to the Chair's text.

  1. Recognizing that all human rights, civil, political, economic, cultural and social, are universal, indivisible, and interdependent and interrelated
  2. Emphasizing the valuable contribution of persons with disabilities, disabled peoples' organizations and other members of civil society to furthering the equal and effective enjoyment of human rights and fundamental freedoms by persons with disabilities, and the vital importance of their participation in national, regional and international efforts to this end;
  3. Recognizing that the human rights of persons with disabilities remain unfulfilled on a global scale as a result of pervasive discrimination, and that the exclusion from society of persons with disabilities negatively affects all components of the social, economic and cultural environment, and that these issues need to be addressed at all levels of society in a spirit of common responsibility and with the highest level of international cooperation
  4. Supporting our colleagues from Disabled Peoples' International and Canada with regard to the need to include mention of the social model and rights based approach to disability.

Republic of Korea suggested including the concept of independent living, not as a model but as an overarchjng goal.

Sweden added the following to the Chair's draft: (c) does not reflect the discussions in the WG on the topic of discrimination; (g) is a substantive right that should be dealt with in obligations; the deeply negative message in (f) about PWD was of concern.

Germany supported the EU proposal for the Preamble because in encapsulated the main moral values at stake. Equality, universality, effective enjoyment of human rights and accessibility are all dealt with here. The gender perspective wording is strongly recommended, as this is distinct from other forms of discrimination. The para on poverty reflects the many studies demonstrating that poverty and disability cannot be separated.

WNUSP supported the inclusion of the content of (g) with the understanding that the small group discussion had come to some resolution on "self determination".

Mali wanted the word "development" to follow "freedom, justice and peace" in (a); (f) should be amended to say: "the principal purpose of this Convention is to ensure that PWD fully enjoy their fundamental human rights and freedoms and participate on a full fledged basis in the economies of their societies". (j) should be amended to say: "Underlining the need of a convention dealing specifically with the human rights of PWD in order to significantly contribute to redressing ...."

South Africa suggested an amendment to (f) that reflected Sweden's concerns which they were in agreement with. "We do not need to keep reminding ourselves of these negative perceptions" and in this regard only the first half of this paragraph should remain, until "stereotypes".

China called for insertion of its draft convention text's language into the Preamble (pg 8 of the Compilation). In addition, elements of international cooperation, as has been brought up in this forum, are very important, and they have precedents elsewhere.

Lebanon supports insertion of the EU text's penultimate paragraph on poverty and armed conflict. The preamble should include a broad definition of disability were this not to be included in the body of the Convention, provided that this would reflect the rights based social model approach.

Sierra Leone described the structure of a Preamble generally: 1. reference to the existing instruments that highlight the progression of the disability and human rights issue, for example the declaration on the human rights of PWD which has not yet been mentioned. 2. recognition of issues, including armed conflict, gender, etc; 3. expression of concerns and regret that explains the rationale; 4. emphasis - "underlining" the main point; 5. implicit reference to the aim -"believing" where it could make a contribution (eg para (j); 6. a linkage between the preamble and the rest of the convention.

Serbia Montenegro supported the EU draft and suggested that this be combined with the Chair;s draft, in particular the EU's paras on the CRC and the UNSR, keeping in mind the comments from RI. Canada's proposal to add the last 2 paras to the Chair's draft was supported. Reflecting the sentiments of NGO members, the Preamble could incorporate language on mainstreaming and equality of opportunity.

Thailand supported China's suggestion on the right to development as well as international corporation, which is also mentioned in BKK draft (q). Para (h) in the Chair's draft is important and should be retained. Echoing the recommnedations of other members, the EU language on accessibility and poverty should be integrated into the Chair's draft.

India stated its reservations to the use of "self determination" in (g) in the context of discussion in these meetings. Attempts to include "independent living" in this para are also not acceptable, as in the subcontinent the extended family remains the norm for persons with or without disabilities. With regard to the last 2 paras of the EU draft currently proposed for integration, the second is acceptable as is, but India has reservations to the first, because of its reference to armed conflict".

Disability Australia Limited recommended using wording from the section of GA Resolution 168 that describes "the condition in which 600 million PWD are denied their rights and therefore the need to elaborate a convention to promote their rights." This captures "the contest" in which this convention has come to be. The 1975 Declaration on the Rights of PWD set out standards that have serious limitations and were compromised; like the MI Principles, this referencing this text should be avoided.

Morocco endorsed the proposals for introducing into the Preamble the Millenium Development Goals, accessibility, international cooperation and ICT.

Venezuela cited text from its draft convention (pg 12 Compilation), specifically subparas (l) and (n), on equality of opportunity and poverty and disability to be included in the Chair's draft.

RIGHT TO LIFE

Inclusion International asserted that the lives of all future PWD, especially those with intellectual disabilities, are at risk because of developments in bioethics and prenatal testing for disability. For most persons with an intellectual disability, the disability is present before birth. Underlying these developments is an intolerance towards diversity which constitutes a denial of the right to be different. Society might soon be making a distinction between lives worth living and those not worth living. This is not an argument about a women's right to choice, it is about "our right" to be born and to be to be different. The presence of a disability must not be allowed to become a justification for the termination of life, nor must a disability justify changing the genetic make-up of a person. A strong statement advocating the right to life for PWD should recognize the richness and diversity that PWD bring to the lives of their family and community.

Firstly, LSN suggested that the draft text use the same language as Article 6 of the Convention on the Rights of the Child (CRC). This formulation includes the right to life, survival and development, which is particularly relevant to the disability context. The second point relates to the right to life, but may be better placed under a section on groups at risk. This is the situation of PWD in armed conflict. PWDs are typically the last to be evacuated in conflict situations and when they are evacuated their rights are seldom addressed in centers for refugees and internally displaced persons. LSN drew attention to Article 38 of the CRC, which links international humanitarian law to human rights law. Based on this model, LSN affirmed a need to include a provision on the promotion and protection of the rights of PWD in armed conflict.

The South African Human Rights Commission (SAHRC) preferred to retain this article but with as unambiguous and simplified a formulation as possible. To the sentence "Every person with a disability has the inherent right to life and survival" should be added "irrespective of his/her disability." The second sentence stipulating that "This right shall be protected by law" is redundant and should be deleted since by definition all rights in this convention are protected by law.

DPI affirmed that the right to life is the most basic right and noted that the Chair's draft as drawn from the Bangkok text includes the right to life. DPI further specified that the Bangkok text does not address specific infringements on the right to life, such as forced or coerced abortions or practices of euthanasia. The representative urged WG members to consider more focused references to the issues faced by PWD in this area.

WNUSP supported the inclusion of this article if it could be done in a way that would not compromise women's reproductive rights. WNUSP also pointed to the phenomenon of non-disabled persons justifying killing of PWD because of the extent of their suffering. Another justification is that parents could not cope with the situation. Whether or not the WG would call attention to this specifically, it is necessary to be aware that states have an obligation to protect PWD's right to survival and to protect people from these atrocities. The lives of PWD as well their dignity and autonomy are being tacitly assumed to be less worthy than the lives of others.

India noted that the right to life as drafted in the Chair's text (Article 12) is based on Article 6.1 of ICCPR. India would like the third and last sentence of the article, "No one shall be arbitrarily deprived of his or her life," qualified with the language "because of disability and/or gender."

Colombia stressed the importance of an article, or perhaps something within the same article, on genetic discrimination. In Colombia, abortion is banned. It would not be appropriate to promote abortions based on possible disabilities. If there were any kind of genetic treatment used, for example if a couple is attempting to have a child through some sort of enhanced genetic intervention, or on the contrary, if one wants to do away with the fetus, this is a polemic discussion.

Ireland noted that the EU draft does not have an article dealing with the right to life, because the EU was not convinced that the inclusion of such an article would add to existing human rights law. The EU is opposed, from the outset, to the repetition of existing rights simply for the sake of repeating them. Our view is that everyone person has exactly the same rights as any other person. The need to protect the right to life of the unborn is a concept that Ireland has considerable sympathy with nationally, however international human rights begin at birth. With respect to rights before birth, there is no consensus in the international community. Furthermore, the Chair's text omits an important component of the right to life, which is protection against the death penalty. The EU undertakes demarches in many countries against the death penalty and in favor of people who may be suffering mental illness and mental disability. In conclusion, Ireland noted that at this stage the international consensus in relation to the right to life is insufficiently advanced for the WG to include a useful article. The EU concluded that it is best not to include an article on the right to life in this text

Sierra Leone shared the view of the EU that there was no need to have a separate article on the right to life. This could instead be recognized in the preamble. If the right to life does constitute a separate article, state obligations that flow from it should be included as well, but this might be too controversial.

New Zealand asserted that the article needs more detail. There is a need, as Sierra Leone affirmed, to talk about what states should do. One area of focus should be around education. Medical professionals need to know what the lives of PWD are like and to understand the right of PWDs to life. Furthermore, these efforts could be broadened beyond just medical staff. When women are debating over abortion, there is a lot of material stipulating that the lives of PWD are better unborn. In relation to the point made by Colombia, the text could prohibit the promotion of abortion on the grounds of disability. This is a useful formulation, as it does not suggest that women do not have the right to choose.

Rehabilitation International (RI) found the text of Article12 of the Chair's text to be finely balanced as drafted. If there is to be something specific to be included in order to add value to the right to life in this context, RI suggested that it might take the lines of a specific prohibition against eugenic laws and policies directed against PWD. Colombia stressed that some way should be found to effectively guard against discrimination on the basis of genetic information. RI concurred, but suggested that it more appropriately falls under the non-discrimination heading rather than that of the right to life. There might be some basis for adding, either to the right to health, or to the right to life, something along the lines that states would ensure that biomedical advancement, including genetic advances would be tied to the advancement of the rights of PWDs.

WFD noted that in many cases there are recommendations given to parents to abort for economical reasons, since the child with disabilities will bear additional costs, and that life for a PWD is a "sad misery." There are no factual grounds for these recommendations, yet it is based on these that parents agree to abort their child with disabilities. WFD expressed the view that abortion based on disability should be prohibited. It also supported the suggestion that bioethics and technology should be closely linked with rights of PWD.

The Philippines supported retaining Article 12, but also concurred with the suggestion to delete the second sentence and the amendment by India. In contrast, the representative did not see the merit of "downgrading" this article to the preamble.

Serbia and Montenegro supported the views expressed by the EU. The controversial nature of this article might impede a key goal in drafting the convention, to have it accepted by as many countries as possible. The representative reiterated that PWD have equal right to life and that there could be no moral justification for taking away the life of a PWD which has been born.


The Disability Negotiations Daily Summaries are published by the Landmine Survivors Network, a US based international organization with amputee support networks in six mine affected / developing countries. They cover the intergovernmental proceedings of the Ad Hoc Committee on the human rights of people with disabilities. Reporters covering the Working Group meetings are Elizabeth Kissam, Jennifer Perry and Zahabia Adamaly and Joelle Balfe (editors). The Summaries are posted on line by noon the following day at www.worldenable.net and www.rightsforall.org They are translated into Japanese by the Japanese Society for Rehabilitation of Persons with Disabilities (dinf-j@dinf.ne.jp) and Spanish by the Inter American Institute on Disability (iidisab@aol.com) If you are interested in translating and disseminating the Summaries over the course of the Working Group meetings, and would like your contact information to be distributed, or have comments / questions, please write to Zahabia@landminesurvivors.org