Daily Summary related to Draft Article 14
RESPECT FOR PRIVACY, HOME AND THE FAMILY
Prepared by Landmine Survivors Network

Volume 3, #4
January 8, 2004

Afternoon Session

RIGHT TO RESPECT FOR PRIVACY, HOME, THE PROTECTION OF THE FAMILY, AND THE RIGHT TO MARRY

The Coordinator reminded the WG that Article 16 of the Chair Draft would be a framework for discussion and that there were other texts on this issue.

Inclusion International (II) discussed Article 15 of the Chair Draft as it did not have a chance to do so in the morning session. It reminded members that freedom of opinion is often neglected for those who have intellectual disabilities and that in institutions, where many reside; they are treated not as citizens but as patients. It noted the importance of guaranteeing this right irregardless of type of disability or the place in which the person resides. With respect to Article 16, he noted the lack of privacy in group homes and institutions and asked delegates to refer to Article 8 of the European Convention on Human Rights, which might be helpful in drafting this article. It criticized paragraph 3, as guardianship laws incapacitate PWD and suggested that it start with the term "legal assistance" as people with intellectual disabilities, especially in developing countries, might not receive this.

South Africa proposed that the "right to privacy" be a separate article, perhaps linked to Article 13 and 14, as Article 16 only focused on the domestic domain. She proposed the restructure of the "specific rights" section of the Chair Draft into four focus groups for the provisions: thematic; general; civil and political rights; and economic and social rights. The thematic group would contain articles 3, 9, 10, and 18 of the current text. The general group would contain articles 6, 8, part of 15 (part on access), 11, 21, 22c, 28, and 29. The civil and political group would contain articles 12, 13, 14, 15(part on freedom of expression), 16 (part on right to privacy), 17, and 19. The economic and social group would contain articles 20, 23, 24, 25, 26, 27, 28, and 16 (part on home, protection of family, right to marry). It stated that this structure would allow for a less complex document.

Coordinator said it would be helpful if the Chair could be provided copy of this framework and noted that he was simply using the Chair's text, as a framework for discussion of issues, not to prejudice the drafting in terms of structure. He said that structural issues would be discussed once the WG decided on what the content would be in each article.

The Inter-American Institute on Disability (IID) noted that Article 16 should refer to the rights of reproduction for women who have a disability as many women are convinced or told to avoid having children. It noted that is was sometimes the case for people who were deaf or blind. It commented that this should be eradicated.

Ireland said the article's content did not adequately elaborate all of the elements in the title. It suggested that the article be expanded or privacy be addressed in an article that was separate from an article on marriage, family, and relationships. It referred to Article 7(e), (f) of the EU Draft, which is based on the ICCPR and noted that the right to marriage was guaranteed in this instrument and that it was a right, and not a subset of another right. It called for further elaboration of EU Draft Article 7(f) and suggested that the approach taken in Article 16 of CEDAW might be useful as well as the wording in Standard Rule 9. It noted II's concern on guardianship law in paragraph 3 and questioned the appropriateness of quantifying financial issues in paragraph 4.

Coordinator interpreted paragraph 3 in light of CEDAW as saying that PWD had "equal rights to be guardian" and did not refer to a "guardian of them." He asked Ireland to read Rule 9 from the Standard Rules.

Ireland noted that the relevant part was in the second paragraph of Rule 9, where it talks about denial of opportunity.

WNUSP said it was unnecessary to single out parents who had intellectual or psychiatric disabilities in paragraph 4 as it could suggest/assume incapability without assistance with regard to these groups.

World Federation of the Deaf and Blind highlighted the perspective of this group with regard to privacy and relationships. It noted that many deaf/blind people are in institutions and may never know if they are alone or not, when they have privacy (i.e. they don't know the feeling of privacy). It raised questions on deaf/blind children who don't know issues of sexuality, especially in institutions. It noted also the importance of the principle "by law, they are having the right" because, he said "for us it feels like having that right."

Japan suggested that paragraph 3 be rewritten to make it specifically important to PWD and requested that paragraph 3 make clear that there are certain PWD who cannot achieve guardianship without assistance.

DPI noted that the international human rights framework does not explicitly link the right to family with PWD and that Standard Rule 9 addressed a range of these issues. It said it was essential that human rights law be strengthened so that PWD can enjoy that right. The delegate noted the situation of disabled women in her own country and the societal assumption that women with disabilities cannot make good mothers or wives and stated that existing human rights instruments do not try to remedy that assumption.

Germany concurred with Ireland that members look to Article 16 in CEDAW and Article 17 in the ICCPR for guidance on wording, as well as Standard Rule 9. She noted that the elements outlined in Standard Rule 9, were not addressed in CEDAW because it is not a general issue for women. It proposed that the issue of sexual violence be addressed in this Article (which is addressed in CRC Article 34), as women with disabilities are at particularly high risk. In this context, it noted that the article should address privacy issues for women. It also proposed better wording of the needs of disabled parents in paragraph 4.

The Coordinator pointed out the link between this article and Article 14 of the Chair's draft which deals with forced intervention.

Disability Australia Limited highlighted the discriminatory nature of family law in Asian states, in which legal discriminations are practiced with regards to certain groups' ability to engage in adoption, divorce, custody etc. It noted concern with paragraph 3 and 4 in that did not deal with deep-rooted practices and legal discriminations.

India commented that privacy was mentioned in the title of the Article but not in the body and called for mention of the concerns of privacy for women. It proposed that "in accordance to the policies in their countries" be added to paragraph 2.

China referred to Standard Rule 9 in the context of paragraph 2 and took note of India's statement on paragraph 2. It called for reference to specific conditions and policies of countries and said that the text should emphasize PWD as well as others, as having equal right to give birth, and said it could provide an alternative text to the Coordinator on this issue. It noted the prevalence of domestic violence against PWD and proposed this act be treated as a crime. It stated that it could provide text on this issue to the Coordinator.

The Coordinator noted that Canada and Morocco would intervene on Article 16 at the next session.

Volume 3, #5
January 9, 2004

Morning Session
Commenced: 10:30 AM
Adjourned: 1:04 PM

RIGHT TO RESPECT FOR PRIVACY, HOME, THE PROTECTION OF THE FAMILY, AND THE RIGHT TO MARRY (continued).

Canada noted the concept of individual privacy is insufficiently brought out. They were not aware of a right to sexuality per se; perhaps “a right to express one’s sexuality on an equal footing with others” with a qualification for children and minors would be more appropriate. Standard Rule 9 could be a basis for Paragraph 1. The reference to “substantial social support” “would have to be considered very carefully” given its resource implications, financial or otherwise. The Child Rights Convention (CRC) should be the basis for Paragraph 4. The last clause should specify that children would not be removed from their disabled parents “solely” on the basis of their disability, so as to balance with the commitments in Article 9, paragraph 1 of the CRC, which allows for children to be separated from their parents when it is in the best interests of the child. This Article of the CRC, on the rights of children with disabilities, should be referenced in this convention.

Morocco echoed Canada’s position on the right to sexuality, noted the sensitivity of this issue and countries’ differing views on it and proposed rewording of paragraph 1 with a reference to concepts in other human rights instruments.

Landmine Survivors Network (LSN) supported the view of the German delegation on the issue of sexual exploitation of PWD, which was presented in the last session. This article was linked to the article on freedom from torture, and Article 34 of the CRC could provide language that would also be useful in this article. The wording of the right to privacy should be clarified and offered an alternative text in this regard, which was not found in the compilation.

The World Network of Users and Survivors of Psychiatry (WNUSP) objected to Canada’s proposal to include the word “solely” in paragraph 4 because it implied that disability could be a factor in determining whether a child could be removed from the parent. The equivalent case would be in employment as if one were to say that one could not deprive a person of employment solely on the basis of disability. Regarding sexuality, this article needed to address this issue even if it was not a right, as deprivation of this choice happens in instances of adults living in institutions, or in other situations in which there is a high degree of caregiver influence on daily life. She reiterated that adults had a right to form intimate relations, and cautioned about focusing specifically on institutional settings, because that would imply that such institutions should be in existence.

Lebanon supported Morocco’s position and suggested wording that “all men and women with disabilities of a legal age, have the right to form a family.” It supported LSN’s proposal though noted that it might better be placed in the article on violence.

The World Federation of the Deaf (WFD) asked if the article covered the issue of forced sterilization of PWD which was a frequent practice in many countries. In the case of deaf girls parents are often advised to do this so as to avoid pregnancy, though the practice of rape and sexual abuse still goes on after the sterilization because there was no risk, then, of pregnancy. The Coordinator said that it was covered in paragraph 2 but that there could be provisions in other articles as well.

Sierra Leone noted that the right to sexuality was related to reproductive rights and the first sentence of paragraph one could be amended “PWD have the right to form and have sexual and other intimate relationships with anyone of their choice.”

New Zealand found the article to be lacking in terms of protection of privacy, especially in the home. It noted that home ownership was something to be considered in this regard, as so many PWD live in institutionalized accommodations, and the sense of ownership in those instances was with the institution and not with the person. It would like, then, to see reference to privacy in one’s own home. NZ wanted to ensure that the rights of the child are not used to justify removing one from a disabled parent and echoed the WNUSP position that this paragraph should not be weakened.

Inclusion International (II) agreed with the WFD that forced sterilization still occurs in many parts of the world and needed to be eliminated.

The Inter-American Institute on Disability (IID) followed up on its previous intervention on the right to reproduction and procreation by agreeing with the WFD that an explicit banning of forced sterilization due to disability should be referenced in the article.

Rehabilitation International (RI) suggested the WG reference General Comment 12 from CEDAW. He agreed that the privacy issue was critically important. In this regard, the language in the Biomedicine Convention of the Council of Europe, Article 11 and 12 on medical and genetic testing, related to the abuse of information on the grounds of genetic heritage, could be relevant for this convention, though not necessarily in this specific article.

WNUSP cautioned members that labeling something as having a “health purpose” does not necessarily mean it cannot be an abuse of information. WNUSP had provided text on nondisclosure of medical records in Article 26 of the Bangkok Draft. While this was in relation to the right to health they would recommend that this belongs in an article on the right to privacy. They also shared South Africa’s view that privacy in general may not be best dealt with in an article on family, sexuality etc as was reflected in the Chair’s draft. In relation to New Zealand’s intervention on the right to privacy in one’s own home, the WNUSP had provided text on this issue on page 125 of the Compilation, that included the right to choose caregivers, apart from the right to privacy.
Republic of Korea (ROK) supported RI and highlighted situations an additional situation in which the right to privacy was abused, when PWD in institutions are forced to share rooms together.

The Coordinator noted that discussion on this article was very thorough and that it would be possible to resolve the few differences that had surfaced among the delegates on the article and that proposed text on this article would be forthcoming.

Volume 3, #8
January 14, 2004

Morning Session
Commenced: 10:19 AM
Adjourned: 1:03 PM

PRIVACY, HOME, PROTECTION OF THE FAMILY AND THE RIGHT TO MARRY; THE RIGHT TO LIFE

The Coordinator referred members to Draft Text A/AC.265/2004/WG/CRP.3/Add.10 for this discussion.

Sierra Leone brought attention to “caregivers” in paragraph 3 and asked whether wonder “caregivers” was synonymous with “associates.” If so, could paragraph 3 be rephrased or redrafted to reflect what is meant by the concept.

The Coordinator said that he sensed that “associates” was a broader term than “caregivers”.

The Russian Federation wanted their definition of PWD to be reflected in the meeting. The Coordinator said the definition could be raised in the relevant small group session.

Japan proposed that 2(d) be changed to “the rights of persons with disabilities, with regard to guardianship, trusteeship, adoption of children, or similar institutions, where these concepts exist in national legislation in accordance with national appropriate law.”

Ireland asked Japan to explain its intention in making an amendment to 2(d).

The Coordinator said that he was not sure if this should be elaborated in the Convention, because how a State establishes national legislation is a matter of the State. It could lead to some confusion if 2(d) was qualified in this way. This was a drafting issue for the AHC.

Canada expressed concern on the wording in the last sentence in 2(e) and proposed that “solely on the basis of disability” be added. The addition of the worlds “directly” and “indirectly” creates uncertainty in what is meant by the clause. The clause means that children should not be separated from their parents solely on the basis of disability.

India proposed that “in accordance with policies of states” be inserted at the end of 2(c) and that “keeping in view available resources” be inserted at the end of the second sentence in 2(b). Many developing countries would have a problem keeping this commitment if 2(b) remained as is. Also, the last sentence in 2(e) is inappropriate because the failure of a parent to care for their children may in some cases be directly attributable to disability.

The World Network of Users and Survivors of Psychiatry (WNUSP) said that the first sentence in 2(e) gives the standard in international law. The intent of the last sentence in 2(e) is to say disability per se is not the issue but how well parent is taking care of the child. 2(e) should also consider whether assistance or technical devices could be provided to allow for a parent to take care of a child, because in many cases, these can make a big difference in the ability of a parent to take care of a child. Not taking care of a child is not directly related to disability because there is always human free will, whether one is disabled or not. Also, including the world “solely” in the paragraph would leave a lot at the discretion of the interpreter and he/she could easily find another reason to take a child away from a disabled parent. 2(e) should include general language but WNUSP would not object to the deleting “directly or indirectly.”

The Coordinator said the issue in 2(e) was a linguistic issue.

Sierra Leone supported India’s views and Canada’s proposed addition of the word “solely.” The word “arbitrarily” could also be added to 2(e) as an option to dealing with the issue.

Japan clarified that if 2(d) only referred to the guardianship of children, it would rescind its proposal for an amendment. If 2(d) was interpreted in a more general way (to include guardianship of mortgages and property for example, their amendment would be needed.

The Coordinator interpreted 2(d) as only referring to children.

Canada said it would be comfortable with a footnote to 2(e) indicating that some delegations wanted “solely” to be included, if “indirectly and directly” were kept in the clause.

Ireland referred members to the footnote for 2(c) as a means of resolving issues on this clause. The addition of language could be left to discussion at the AHC. All members agree that PWD should not be assumed to not be good parents. If children are to be removed from the parents, it should be on the basis of bad parenting and not because of disability. WNUSP’s clarification on the meaning of 2(e) could be helpful in expressing this element.

Coordinator said that the AHC could look at the language in 2(e) further and the WG could deal with the issue with a footnote. There is no issue of substance in 2(c). The issue is that PWD should not face more restrictions on family size than people without disabilities in any State. The objective is not to change national policies on family size but to address non-discrimination of PWD in this context.

South Africa recommended that “correspondence” be replaced with “communication” in the last sentence of paragraph 1 to ensure the privacy of PWD.

New Zealand said the last phrase in 2(e) could be phrased in a more positive way. The intent is to say that children should stay with parents when possible, including parents with disabilities. Assistance should be provided when necessary to ensure this is possible.

China said that India’s comments on 2(c) were valid. There is a consensus that the wording in the Chair’s text is based on some reference to CEDAW.

The Coordinator concurred with the reference to a consensus.

Ireland cautioned against comparing the language in 2(c) to the language in CEDAW because CEDAW was dealing with equal spacing of children for men and women.

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