ADVISORY COMMITTEE DISCUSSES ELIMINATION OF DISCRIMINATION AGAINST PERSONS AFFECTED BY LEPROSY, HUMAN RIGHTS EDUCATION AND TRAINING

Human Rights Council Advisory Committee
MORNING

28 January 2009


The Human Rights Council Advisory Committee this morning discussed a draft working paper on a set of principles and guidelines to eliminate discrimination against persons affected by leprosy and their family members, and the work of the drafting group on human rights education and training.

Introducing the draft working paper on the elimination of discrimination against persons affected by leprosy and their family members, Shigeki Sakamoto, Advisory Committee Expert, said that applying a specific rights based approach was necessary in order to address the stigma faced by persons with leprosy and their family members. The promotion of dignity for persons affected by leprosy was vital. Following the discussions, the working paper principles and guidelines recommended among other things that States should abolish all policies and practices that discriminated directly or indirectly against persons affected by leprosy, and that States should formulate policies and action plans to eliminate discrimination against persons affected by leprosy through public awareness strategies and health care campaigns. He stressed that health and human rights complimented and reinforced each other in any context and in particular in the context of the elimination of discrimination against persons affected by leprosy and their family members. The final draft of the working paper was scheduled for completion in June 2009.

Introducing the working paper on human rights education and training, Emmanuel Decaux, Rapporteur of the Working Group on the subject, said that the Working Group had been in contact with civil society and had held fruitful discussions. He had also been invited by the United Nations Educational, Scientific and Cultural Organization (UNESCO) to take part in the closing ceremony of a panel discussion in December 2008. He underlined that UNESCO was a very important partner for the Committee. Other UN agencies, such as the Office of the High Commissioner for Human Rights, had also replied to the questionnaire that had been sent out, as well as about 30 States. It was very satisfactory to see so many answers but also to see the high quality of the answers. After a first analysis, some first trends and target groups would be identified and a consolidated document would be prepared in a few months time. Given the great interest in the consultative process, the deadline for participation would be extended to March.

In the general debate on the elimination of discrimination against persons affected by leprosy and their family members, Committee Experts said that the objective of the study should be the eradication of the illness, and establishing guidelines of non-discrimination would be a major step in that direction. With regard to timelines set for completion of the Committee’s work, Experts said that the Human Rights Council should also be aware that the Committee was only working for two short sessions per year and that it was impossible for the Committee to fulfill its mandates in such a short period of time. On changing attitudes in society, Experts welcomed the addition of best practices in the working paper, among other things.

Regarding the draft declaration on human rights education and training, Committee Experts said that the consultation process was impressive, and such a wide process was important as a method of work and the Committee should always use it before preparing such a declaration as it enhanced the changes they were seeking because participants would be motivated to rethink their programmes. The declaration needed to be exhaustive as the area of education was broad. It should target students, adults, the police and all the segments of the population who not only needed to know about human rights, but were also involved in the implementation of human rights.

Advisory Committee Experts speaking in the general debate included Shigeki Sakamoto, Halima Embarek Warzazi, Vladimir Kartashkin, Emmanuel Decaux, Shiqiu Chen, Wolfgang Stefan Heinz, Purificacion V. Quisumbing, Chinsung Chung, Bernards Andrews Nyamwaya Mudho, Miguel Alfonso Martinez, Dheerujlall Seetulsingh and Mona Zulficar.

Also speaking were representatives of Venezuela and Indonesia, and the non-governmental organizations Soka Gakkai International, Pax Romana and IODEL in a joint statement, and the Indian Movement Tupaj Amaru.

The Advisory Committee is scheduled to meet again in public at 4:30 p.m. this afternoon when it will continue its discussion on the work of the drafting group on human rights education and training and begin its debate on the right to food. Time allowing, the Committee will also discuss the implementation of section III of the Human Rights Council resolution 5/1 on rules of procedures and methods of work of the Advisory Committee.

Document

The Advisory Committee has before it A/HRC/AC2/CRP.5, a working paper by Committee Expert Shigeki Sakamoto on the elimination of discrimination against persons affected by leprosy and their family members. The document states that the Human Rights Council has requested the Advisory Committee to formulate a draft of set principles and guidelines for the elimination of discrimination against persons affected by leprosy and their family members. In response to this request, the Advisory Committee has conducted a discussion on the matter. The Office of the High Commissioner for Human Rights has been collecting information about the anti-discrimination measures taken by individual countries. Judging from the submissions, people affected by leprosy are forcibly quarantined, under the law, in isolated hospitals, sanatoria or colonies in some countries even today. Many submissions demonstrated the fact that stigma against people affected by leprosy is very severe in many countries. The WHO statistics in 2007 show that there are over 250,000 people affected by leprosy. In a discussion in the open-ended consultation, a social approach instead of a purely medical approach was discussed. Furthermore, particular treatment and protection should be provided to women and children affected by leprosy. Leprosy is one of the oldest diseases known to humankind. In order to eradicate this most deep-rooted prejudice against this disease that causes discrimination, the cooperation of the human rights experts is essential. The principles and guidelines for elimination of discrimination against persons affected by leprosy and their family members to end the stigma and discrimination against them should be completed with the cooperation possible of the members of the Advisory Committee. The draft will be ready by the end of May.

General Discussion on Elimination of Discrimination against Persons Affected by Leprosy and their Family Members

SHIGEKI SAKAMOTO, Advisory Committee Expert, said that an interactive dialogue with relevant actors was important, as it would help realize the stigma faced by persons affected by leprosy in concrete terms before preparing the draft principles and guidelines. The Human Rights Council requested that Office of the High Commissioner for Human Rights to collect information on the measures that Governments were taking to eliminate discrimination against persons affected by leprosy and their families and to hold a meeting to exchange views among relevant actors and to transmit a report to the Human Rights Council and the Advisory Committee. The Council also requested the Advisory Committee to examine the report, when available, and to formulate a draft set of principles and guidelines to eliminate discrimination against persons affected by leprosy and their family members, and to submit it to the Council for its consideration by September 2009.

In response, at the first session of the Advisory Committee it adopted recommendation 1/5 on the elimination of discrimination against persons affected by leprosy and their family members. Mr. Sakamoto said he was invited to participate in the consultation organized on the issue by the Office of the High Commissioner for Human Rights on 15 January 2009. Following participation in the consultation, he had drafted a working paper. He thanked the countries and non-governmental organizations which had submitted information that contributed to the formulation of the working paper on the eliminate discrimination against persons affected by leprosy and their family members. Applying a specific rights based approach was necessary in order to address the stigma faced by persons with leprosy and their family members. The issue of terminology was raised in the discussions that took place. Some people preferred to use the word leprosy, while others preferred to call it Hansen’s disease. The word leprosy, some believed, implied that the disease was incurable and easily transmitted, contributing further to stigma faced by persons affected. In formulating the principles and guidelines, both words had been used interchangeably throughout the working paper.

Mr. Sakamoto said that the promotion of dignity for persons affected by leprosy was vital. A social approach to addressing this issue was also recommended, as only a social approach could truly eliminate the discrimination that persons affected by leprosy experienced. The guidelines recommended that States should abolish all policies and practices that discriminated directly or indirectly against persons affected by leprosy; States should provide support services for persons affected by leprosy; States should formulate policies and action plans to eliminate discrimination against persons affected by leprosy through public awareness strategies and health care campaigns; and States should provide effective and adequate compensation for persons affected by leprosy who had suffered losses as a result of compulsory segregation. In addition, particular treatment and protection should be provided to women and children affected by leprosy. For example, in Japan, abortions were forced for women affected by leprosy. Furthermore, children affected by leprosy should be provided with adequate access to education and ample opportunities to develop skills.

Only a human rights perspective could ensure the rights and dignity of everyone, said Mr. Sakamoto. Health and human rights complimented and reinforced each other in any context and in particular in the context of the elimination of discrimination against persons affected by leprosy and their family members. This disease primarily affected people living in the poorest areas in the world. In contrast to other diseases, leprosy affected the visual appearance of persons, and as a result persons affected by the disease suffered from disfigurement, and therefore persons affected by leprosy even after treatment remained stigmatized. Further, human rights education was required and necessary to develop people’s awareness of the stigma attached to persons affected with leprosy. Moreover, the principles and guidelines for persons affected by leprosy should be completed with the cooperation of all the Committee Experts if possible. The final draft was scheduled for completion in June 2009.

HALIMA EMBAREK WARZAZI, Advisory Committee Expert, said that it was extraordinary to see the passion that Mr. Sakamoto had demonstrated. The problem he had presented was close to their hearts. It was true that discrimination had to be eliminated for victims of leprosy and their families, but the elimination of leprosy itself had to be stressed in particular. Not enough importance had been given to this aspect. First of all, the disease had to be eliminated and then the discrimination againist people affected by leprosy. A close cooperation with Japan would be very useful in this regard, since Japan had demonstrated its willingness to distribute medication for leprosy for free.

VLADIMIR KARTASHKIN, Advisory Committee Expert, said that in the excellent working paper presented by Mr. Sakamoto many recommendations had been made already. This working paper was a good basis to establish the guidelines. The subject had already been discussed in the Sub-Commission and was now being discussed in the Advisory Committee. The objective of the study should be the eradication of the illness. Establishing guidelines of non-discrimination would be a major step in that direction. Mr. Kartashkin urged members of the Committee to be more attentive in allocating time and giving deadlines in order to give members the possibility to produce exhaustive documents. The Human Rights Council should also be aware that the Advisory Committee was only working for two short sessions per year and could not do all the work that was entrusted to them.

EMMANUEL DECAUX, Advisory Committee Expert, said that he supported the suggestion of the President of the Advisory Committee regarding the limits imposed on the Committee by the Human Rights Council. The sessions should at least last eight days in order to carry out translations and such in time. The timelines indicated by the Council for the completion of the Committee’s work were virtually impossible. He thanked Mr. Sakamoto for carrying out the work he did on the elimination of discrimination against persons affected by leprosy and their family members, as this was a very important topic. Resolution 8/13 of the Human Rights Council on the preparation of draft principles and guidelines was useful as it was important to have tangible results on the elimination of discrimination against persons affected by leprosy and their family members. It was very important to include work on health as a complimentary dimension that was missing in the work of the Advisory Committee, and this dimension helped to further the implementation of the Committee’s mandates.

CHEN SHIQIU, Advisory Committee Expert, said that he had participated in the consultation organized by Mr. Sakamoto in January. A representative of the World Health Organization (WHO) had said at that meeting that leprosy did not receive enough attention from the international community. This was a very important issue. The statements of many experts in the field in developing countries had touched all participants of the meeting. Patients and people who had recovered from leprosy from Brazil, India and Philippines had spoken about the support they had gotten from the United Nations and how this had changed their lives. However, they appealed to the participants to not forget the illness. Leprosy was dealt with in the health domain, but now it was elevated into the human rights domain. This did not mean that WHO was relieved of its responsibility but that a close collaboration had to be established. A complete elimination of the disease should be regarded as an international responsibility, since leprosy was found in poor countries and not in the developed world. Mr. Chen agreed with Mr. Kartashkin that it was impossible for the Committee to fulfil all seven mandates that were given to the Committee by the Council.

WOLFGANG HEINZ, Advisory Committee Expert, said that this issue was a new issue for him. The paper’s focus on States’ policies and practices was important; however, on changing attitudes in society, more ideas were welcomed and they needed to be more comprehensive. From a human rights perspective, the paper should have included a section designated to a human rights perspective, including examples on best practices, which added to the strength of the already great paper.

PURIFICACION V. QUISUMBING, Advisory Committee Expert, said that a lesson could be learned from Mr. Sakamoto’s experience. His paper had benefited from the consultative meeting that was held in January in Geneva with non-governmental organizations. Some countries had passed legislation on leprosy that should be shared with other governments to give incentive for policy change. She agreed that it was important to change attitudes and public opinion. Ms. Quisumbing stressed that young children had to be free from ideas as those that were found for example in the Bible that depicted lepers as people affected by an incurable disease who were excluded from society.

CHUNG CHINSUNG, Advisory Committee Expert, said that there were several law suits pending in Japanese courts involving cases on the segregation and discrimination of persons affected by leprosy. She suggested that findings from those cases should be included in the working paper with respect to best practices, and the laws and social movements involving persons affected by leprosy in Japan should also be included.

BERNARD MUDHO, Advisory Committee Expert, thanked Mr. Sakamoto for his excellent work. He concurred with the suggestions that had been made before him, especially with the issue of the deadlines. The Advisory Committee could not be expected to produce quality work with the deadlines given by the Council.

MIGUEL ALFONSO MARTINEZ, Advisory Committee Chairperson, said that with respect to the work done on the elimination of discrimination against persons affected by leprosy and their family members, it was important to take note of the work done by the World Health Organization and the Pan American Health Organization in this area. This work had yielded results that would certainly contribute to the draft working paper. He reminded the Committee that there were a number of experienced and talented individuals who were available to assist the Committee in fulfilling its mandates. Mr. Martinez recalled an example in Cuba where there was a tradition with respect to how the country dealt with the phenomenon of leprosy which dated back to the last century; and an example of an approach to consider. The Havana situation he spoke of was about a choreographer that put together all the artistic shows in Cuba from the 1940’s into the early 1960’s, he was affected by leprosy, but was able to make a contribution to the artistic world. Further, this was a wonderful example of what a person suffering from Hansen’s disease contributed. Therefore, if persons affected by the disease continued to be marginalized it meant a loss of this talent and contribution.

Document

The Advisory Committee has before it A/HRC/AC/2/CRP.1, a working paper on the draft Declaration on Human Rights Education and Training, presented by the Rapporteur of the Working Group on the subject, Emmanuel Decaux, which states that regarding human rights education and training, the Working Group that was established at the Human Rights Council Advisory Committee’s first session has started its preparatory work. Official consultations with governments, national human rights institutions, intergovernmental and regional organizations and non-governmental organizations had been opened in November 2008. A contact with UNESCO has also been established and has led to an involvement of one Expert in a round table discussion concerning the implementation of human rights education. During the ninth session of the Human Rights Council in September 2008, several countries expressed their interest in human rights education and formation, such as Pakistan on behalf of the Organization of the Islamic Conference, Egypt on behalf of the African Group, Japan, Chile, Nigeria and Azerbaijan. The initiators, Switzerland, Costa-Rica, Italy and Morocco emphasized that the group will take into account different point of views, especially those of NGOs and national human rights institutions.

General Discussion on Human Rights Education and Training

EMMANUEL DECAUX, Advisory Committee Expert, welcomed that Mr. Dheerujlall Seetulsingh had joined the Working Group on human rights education and training. During the previous days, the Working Group had been in contact with civil society and had held fruitful discussions. Mr. Decaux had also been invited by UNESCO to take part in the closing ceremony of a panel discussion in December 2008. He underlined that UNESCO was a very important partner for the Committee. Other UN agencies, such as the Office of the High Commissioner for Human Rights, had also replied to the questionnaire that had been sent out, as well as about 30 States. It was very satisfactory to see so many answers but also to see the high quality of the answers. After a first analysis, some first trends and target groups would be identified and a consolidated document would be prepared in a few months time. Given the great interest in the consultative process, the deadline for participation would be extended to March. To encourage participation and transparency, the answers would be made public online.

In addition, informal meetings would allow discussing ideas between members of the Committee and external experts. The Committee hoped that the sponsors of this draft declaration on human rights education and training would take the initiative to organise such an informal meeting. Regarding an interim report to the Council, Mr. Decaux said that deadlines for the consultative process had to be extended in order to integrate the views of various United Nations Committees, such as the Committee on the Rights of the Child for example. The Council had asked the Committee to submit a conceptual framework. Mr. Decaux emphasized that the message had to be strong and contribute to change. The framework should be adaptable to different circumstances. Education was an ongoing process, it was life-long learning, and therefore informal education should also be covered. Non-discrimination had to be stressed, special care taken of the inclusion of women and girls and the education within the family itself. Vulnerable groups had to be taken into account, such as the disabled. Mr. Decaux concluded by saying that illiteracy, extreme poverty, national minorities and members of indigenous groups had to be addressed as well.

MIGUEL ALFONSO MARTINEZ, Advisory Committee Chairperson, said that this year there was a total absence of representatives of the United Nations agencies and bodies from the meetings of the Advisory Committee. It would have been extremely useful to have had the presence of those agencies and their contributions to the work of the Committee. He urged the Committee Experts to appeal to all relevant actors to participate in relevant discussions taking place in the Committee.

KATUNARI FUJI, of Soka Gakkai International in a joint statement with International Organization for the Development of Freedom of Education (OIDEL), and Pax Romana, drew the Committee’s attention to the non-exhaustive definition of human rights education. It should remain non-exhaustive so that when specific human rights were conceptually developed and a new human right was recognized, it was also comprehended within the definition of human rights education set forth in the declaration. Further, the declaration should clarify who bore the duty to implement and who was to benefit from human rights education and training. To the maximum degree feasible, the declaration should provide for monitoring to ensure implementation. Also, the declaration could stipulate the responsibility of governments to include human rights education and training in annual national budgetary planning.

MARIA AUXILIADORA GUILARTE CALLES (Venezuela) congratulated the Advisory Committee for its work during this session and the work of the drafting groups. With regard to human rights education and training, Venezuela fully supported this topic. The informal and formal areas were pedagogical areas for human rights training. This training should be ongoing both for obligations and responsibilities involved. It was important to emphasize the aspect of literacy; to educate people in the area of human rights they had to be literate. Human rights training should be a fundamental, social and political aspect of society. Venezuela had engaged in an international cooperation effort with Cuba to combat illiteracy, and as a result of this campaign was declared by the United Nations Educational, Scientific and Cultural Organization as an illiterate-free area.

DEERUJLALL SEETULSINGH, Advisory Committee Expert, noted that numerous United Nations agencies had contributed in the consultative process. He regretted that the national representative of his country in Geneva had not been informed by national institutions of the deliberations of the Committee. He reiterated that the representative of Switzerland had emphasized earlier that the declaration should be concise. A timeframe should be suggested to the Council. Mr. Seetulsingh said that monitoring was very important. As was said earlier by Italy in the consultative process, the issue of human rights education should be taken up in the Universal Periodic Review. The Universal Periodic Review would be one means to check if a country had taken measures in that regard.

PURIFICACION V. QUISUMBING, Advisory Committee Expert, said that as a member of the drafting group, she wanted to thank Mr. Decaux for his tremendous contribution to the drafting group’s work on human rights education and training. A total of 16 responses were received from national institutions, but of those only 12 were accredited with “A” status from the International Criminal Court. Worldwide there were 62 national institutions. On the regional distribution representation, regrettably, the Philippines and France had not yet responded. The European Group was under represented, and surprisingly, the Asia Pacific group was well represented. In late March 2009 a meeting of national institutions was scheduled in Geneva, and this would be a good opportunity for the Committee to consult with those institutions.

LAZARO PARY, of the Indian Movement Tupaj Amaru, asked the Secretariat not to obstruct the work of the Indian Movement Tupaj Amaru in the Advisory Committee. It should be able to express itself freely and to not be subject to discriminatory treatment. It was the family core that provided for children’s involvement in school. Globalization had been underway for many years and schools had been privatized. What about the poor people? If they did not have the means, they did not have access to education anymore. Education had worsened significantly. That was due to privatization of education. It was not true that in order to eliminate racism people had to be educated. Instead, the educators had to be educated and society had to be transformed to eliminate racism. Further, the new technologies had to support education instead of impeding it. The civilizations of the indigenous had made many contributions which should be acknowledged. The world was extremely important to have this ancestral knowledge. His country, Bolivia, had been declared to be free of illiteracy which was thanks to Cuban people. The Cuban people were characterized by international solidarity.

INDAH NURIA SAVITRI (Indonesia) thanked the Working Group for the work they had done on the subject of human rights education and training. She said that in relation to the draft declaration on human rights education and training, input from the Government of Indonesia had just been received, and it would be transmitted to the Working Group to be included in the draft declaration on human rights education and training and any ongoing efforts.

MONA ZULFICAR, Advisory Committee Expert, said that the consultation process was impressive. Such a wide process of consultation was important as a method of work and the Committee should always use it before preparing such a declaration. The consultation process enhanced the changes they were seeking because participants would be motivated to rethink their programmes. This helped the process of human rights culture in general. Also, if governments participated in the process, implementation would be much easier since they would see suggestions that they had made in the declaration.

VLADIMIR KARTASHKIN, Advisory Committee Expert, said that as a member of the Working Group, he thanked Mr. Emmanuel Decaux and Ms. Halima Embarek Warzazi for gathering and preparing the substantive segments needed to draft the document before the Committee. The declaration needed to be exhaustive as the area of education was broad. It should target students, adults, the police and all the segments of the population who not only needed to know about human rights, but were also involved in the implementation of human rights. The Committee should not be too hasty in trying to conclude the work just yet. Only 31 answers had been received from States, despite the fact that there were 192 States in the United Nations system. The Office of the High Commissioner for Human Rights and the Human Rights Council were called on to assist in facilitating the involvement of missing relevant actors in fulfilling the Committee’s mandates. The Committee should carry on with its work and take steps to involve inter-governmental agencies, specialized agencies, and non-governmental organisations to complete this work in a comprehensive way. The draft declaration was a very important document that needed to take into account all the views expressed and should be elaborated in great detail. It should bear in mind the importance of this topic for the international community.

CHEN SHIQIU, Advisory Committee Expert, thanked the Working Group for the work that had been done. This was a very important subject and human rights education had a very broad scope. It was the responsibility of governments and they should invest more in human rights education. Non-governmental organizations should play a supportive role. In China, the Human Rights Society also played a very important role in human rights education, for example by developing curricula. However, these efforts in China faced a shortage of funds. Bilateral cooperation could be carried out between two States or between human rights institutions and non-governmental organizations. Mr. Chen said he had been involved in training prison staff. The United Nations had launched the decade of human rights education, but this was not sufficient. Training, to a certain extent, was maybe more realistic than education. The people who would play a key role as for example in law enforcement were a more realistic target. There should be a rational allocation of funds and cooperation with governments, especially of developing countries.
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