HUMAN RIGHTS COUNCIL ADVISORY COMMITTEE DISCUSSES ELIMINATION OF DISCRIMINATION AGAINST PERSONS AFFECTED BY LEPROSY

The Human Rights Council Advisory Committee this afternoon continued its discussion on the draft principles and guidelines for the elimination of discrimination against persons affected by leprosy and their families, which comes under item three of its agenda, namely requests to the Advisory Committee by the Human Rights Council. It also discussed its revised agenda and programme of work before adopting it.

In the context of the discussion on drafting a set of principles and guidelines for the elimination of discrimination against all persons suffering from leprosy and their families, speakers raised, among other issues, the importance of expanding the scope of the principles and guidelines to all the relevant stakeholders. In this regard, while the guidelines seemed to be addressed at States in particular, there was also a need to involve and appeal to non-state actors. A number of Committee Experts mentioned that something had been lost in the translation texts of the draft. Principles and guidelines should be straightforward and not have explanatory footnotes that could be interpreted differently by different people. In this type of text, it was always advisable, when finalising it, to review each section individually and in order, not least as this purported to be a legal document.

Speakers added that the principles and guidelines should be practicable and implementable by as many actors as possible, including Governments, and thus should not be too detailed, inviting ever more comments. The main purpose of the draft was to raise awareness, on behalf of all members of society, that having leprosy, or having a family member affected by the disease, was not a ground for discrimination. It was also important to use correct terminology, particularly with regard to a disease such as leprosy, which carried a stigma. Governments should change their legislation and official texts to remove discrimination against persons affected by leprosy. The Committee agreed to conclude this agenda item on Thursday, 5 August, and the Chairperson suggested that the working group meet later today or tomorrow morning to go over the text, with the view of presenting a final draft by no later than Thursday at noon.

The Committee also discussed the revised programme of work and agenda before adopting it. There was some confusion over the word “procedural” and some of the Committee Experts felt that the proposed programme was not feasible given the amount of work that needed to be done. There was simply not enough time to fully address other mandates such as the right to peace, international solidarity and human rights and also the enhancement of international cooperation. It was therefore suggested that informal working groups be established and meet to further the discussions that take place within the Advisory Committee. In addition, the Committee decided to prepare a draft letter for the High Commissioner for Human Rights by tomorrow afternoon. This letter would ask for more information on why the nomination of Chinsung Chung as a Committee representative was refused by the Office of the High Commissioner for Human Rights for a meeting on the rights of older people.

Speaking this afternoon were Mona Zulficar, Emmanuel Decaux, Dheerujlall Seetulsingh, José Antonia Bengoa Cabello, Purificacion V. Quisumbing, Shigeki Sakamoto and Halima Embarek Warzazi.

Also speaking were Japan and Mexico.

The next meeting of the Advisory Committee will be on Tuesday, 3 August at 10 a.m., when the Committee will take up the issue of missing persons.

Discussion on Revised Principles and Guidelines for the Elimination of Discrimination Against Persons Affected by Leprosy

MONA ZULFICAR, Advisory Committee Expert, said she hoped this would be the final version of the text. She had a language issue, as well as an issue with footnotes. In guideline 3, on women, children and the vulnerable, she suggested that the text be changed to be made consistent with the rest of the text, and the same change for 3.2.. The second comment was regarding the discussion on footnotes - she agreed that in general, in principles and guidelines, it was not common to have explanatory footnotes, and that explanations should be contained within the body text, as this was where any explanation should be included in order to give the right message and ensure that principles were appropriately observed and respected. On medical grounds for the position that was unanimously adopted by the Advisory Committee and all international organizations and non-governmental organizations, which was that leprosy victims and their families should enjoy all human rights without any discrimination, the idea of whether this could cause any damage to others because it was previously an infectious and contagious disease, then a sentence to the effect that this was no longer the case should be included in the text. The Advisory Committee needed to raise awareness that this was now a curable disease and not a public health issue. All footnotes should be deleted, and this concept of curing should be made prominent in the guidelines text.

EMMANUEL DECAUX, Advisory Committee Expert, thanked Professor Sakamoto and pointed out that, in this particular mandate, he had been working on his own and deserved special praise for his efforts. He hoped that there would be some time to address some of the French translation issues, whilst remaining committed to agreeing on a final draft very soon. Mr. Decaux addressed several issues with the French translation and asked for certain clarifications. In one example, he raised the point listing principles as “ought to be” was not strong enough language and should be replaced with “should be” or “need to be” to communicate importance and urgency. Moreover, while the guidelines seemed to be addressed at States, there was also a need to expand these principles to non-state actors and to reach out to all stakeholders involved.

DHEERUJLALL SEETULSINGH, Advisory Committee Vice-Chairperson, said from what had been seen so far, there was something that had been lost in translation in each draft - it was difficult to express ideas in other languages at times. After this morning's meeting, Mr. Seetulsingh said he had spoken to Mr. Sakamoto, and the latter had agreed to remove the footnotes, as they could give rise to difficulties, as they could give rise to different interpretations. Principles and guidelines should be straightforward and not have explanatory footnotes that could be interpreted differently by different people. There should be no introductory paragraph to the text - it should be included in the presentation of the paper. If there was any discussion, then it should go principle by principle and guideline by guideline, although this perhaps could take a certain amount of time. In this type of text, it was always advisable, when finalising it, to review each section individually and in order, not least as this purported to be a legal document. On the principle of equality - in certain places in the text, it was said "persons affected by leprosy should have the same rights as everyone else", but in other places, it said "persons affected by leprosy should have an equal right to serve the public", which implied an equal right among themselves. Equality had to be equality on a comparative basis. The Convention on Persons with Disabilities used the term "equality on an equal basis with others", and this should be used in the draft principles and guidelines. Guideline number ten should be changed to "participation in public activities". Finally, Mr. Seetulsingh volunteered his services to aid Mr. Sakamoto further.

JOSE ANTONIO BENGOA CABELLO, Advisory Committee Expert, agreed that it might be useful to set up a sub-committee, devoted to the task of tidying up the text. He agreed that one of the footnotes needed to be moved into the body of the text in order to give it more importance. Leprosy was a disease that affected the world’s poorest countries and the sufferers did not have access to treatments or were unaware of how to obtain them. There were two major problems with leprosy today. One was the need to ensure that one hundred percent of those infected with the disease were given immediate treatment. Secondly, there was an important need to deal with those still living in leprosy centres and clinics. States needed to have eradication programmes for former leprosy hospitals and homes and all efforts should be made to close them down. The very least that could be said was that States had an obligation to deal with this disease and to shut down leprosy hospitals.

AKIO ISOMATA (Japan) said Japan was pleased to see that sincere and serious efforts were being made again on the drafting of the principles and guidelines for the elimination of discrimination against persons affected by leprosy and their families, and that their finalisation was approaching. Human Rights Council resolution 12/7 of October 2009 was a sincere attempt to ensure greater procedural transparency, introducing the views of Governments and stakeholders, while taking into account that this draft was the result of careful discussion and consideration by the Committee. Japan was grateful for the hard work and dedication of Professor Sakamoto and that of the Committee's Experts over the last few years, and the opportunities given to a wide range of stakeholders to express their views. The final product duly reflected the comments made by the Committee and by those stakeholders. The principles and guidelines should be practicable and implementable by as many actors as possible, including Governments, and thus should not be too detailed, inviting ever more comments. The main purpose of the draft was to raise awareness, on behalf of all members of society, that having leprosy, or having a family member affected by the disease, was not a ground for discrimination. Japan planned to submit a resolution to the Human Rights Council on the draft principles and guidelines at the upcoming September session.

PURIFICACION V. QUISUMBING, Advisory Committee Chairperson, responded to some of the questions and comments posed by the Committee. In her opinion, the Advisory Committee needed to make sure that the document was considered as a legal one and the language should reflect this. On the question of language, certain terms needed to be more binding. Stronger words like “must” or “should” could be used to strengthen the impact of the draft principles and guidelines. Also, in terms of style, she suggested that there was a need to spend more time to ensure that the draft text was coherent, smooth and easily read.

SHIGEKI SAKAMOTO, Advisory Committee Expert, said that it would be best to go through the text paragraph by paragraph on Thursday afternoon. However, he wished to respond to some questions raised by colleagues. With regard to the suggestion that the draft was currently a legal document, and should use more flexible terminology, he had changed the use of "shall" to "should", as some Member States of the Human Rights Council were not parties to the relevant international human rights instruments, such as the International Covenant on Civil and Political Rights. It was important to use correct terminology, particularly with regard to a disease such as leprosy, which carried a stigma. Governments should change their legislation and official texts to remove discrimination against persons affected by leprosy.

HALIMA EMBAREK WARZAZI, Advisory Committee Expert, said that she felt that the word “must” should be removed in the text and should be replaced with “shall” or “should”. She was also pleased to note that three experts had agreed to meet with Mr. Sakamoto to address some of the language and style changes that were needed. However, the proposal that they meet on Thursday seemed too far away and she suggested that they meet instead tomorrow morning in order to clean up the text.

SALVADOR TINAJERO ESQUIVEL (Mexico) said Mexico believed that the draft was in line with the existing human rights instruments, reaffirming the right to equality and promoting the elimination of discrimination, and was in line with the Mexican legal framework, and this was why Mexico in principle supported the draft and its current approach. It was a good idea for the draft to have a broad approach in achieving the human rights for persons affected by leprosy. The Spanish language version could be improved, however. On the principles, during the discussion, an effort had been made to avoid creating special rights for specific groups of people, as human rights were universal, and special rights did not create substantive rights for a group as a whole. "Persons affected by leprosy and their family members", as a term, could be improved, as they were entitled to all human rights in the Universal Declaration of Human Rights and the International Covenant on Civil and Political Rights. In the same way, Mexico would prefer the deletion of the sentence "in conformity with the States' obligations"- there should be much broader human rights language here. On point three in the guidelines, on women, children, and the vulnerable, the latter term should be replaced by "persons in a vulnerable situation". With regard to education, Mexico had no problem in encouraging equal access to education for persons affected by leprosy, but this was not appropriate in the draft, as everybody should have access to education, regardless of their medical status.


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AC10/013E