ADVISORY COMMITTEE DISCUSSES DISCRIMINATION AGAINST PERSONS AFFECTED BY LEPROSY, AND RULES OF PROCEDURE AND METHODS OF WORK
The Human Rights Council Advisory Committee this afternoon continued its consideration of two items on its agenda, namely draft guidelines and principles on the elimination of discrimination against persons affected by leprosy and members of their family, and draft rules of procedure and methods of work.
With regards to the elimination of discrimination against persons affected by leprosy and their family members, the Committee Expert in charge of developing the draft principles and guidelines, Shigeki Sakamoto, said the most important thing was that all actors, regardless of being public sector or private sector actors, would have to stand together as one to eradicate stigma and discrimination against persons affected by leprosy. The concept of inclusion formed an undercurrent of the principles and guidelines. Professor Sakamoto hoped that the Advisory Committee would adopt the draft, in order to comply with the mandate set by the Human Rights Council.
Commenting further on the principles and guidelines, Committee Experts said the legislative history of segregation was of importance. The text could be made clearer if the content of the wording was examined. The need to make the text more inclusive and to avoid making a general approach and then dealing only with specificities was also pointed out. Consistent changes should be made to paragraphs in the text to add women and children to be considered as part of the vulnerable groups. Any isolation should be in the context of public health considerations; any compulsory treatment was illegal, unless there was a risk for public heath. The principle of non-segregation was obvious - what differentiated old policies from today was that the ill persons did not necessarily have to end their days in a leper colony. However, for public health reasons, there were times when the affected person should be in relative separation and isolation, as was the case for other infectious diseases.
On rules of procedure and methods of work, Experts discussed the working document containing the proposed rules and methods of work that was prepared by Committee Expert Latif Huseynov. Among the issues raised was precedence among Committee Experts, which caused considerable controversy due to proposals that it might be determined by the age of the individual Experts. The articles of the text were agreed upon one by one.
Speaking this afternoon in the discussion on discrimination were Dheerujlall Seetulsingh; Miguel Alfonso Martinez; Mona Zulficar; Latif Huseynov; and José Antonio Bengoa Cabello.
The next meeting of the Committee will be at 10 a.m. on Wednesday, 5 August, when it is scheduled to consider the right to food and disappeared persons.
Draft Guidelines on Eliminating Discrimination against Persons Affected by Leprosy and their Family Members
SHIGEKI SAKAMOTO, Advisory Committee Expert, who drafted the working paper on the draft principles and guidelines, said there had been disagreement regarding the maintenance of the term "segregation" in the principles. In 1897, the First International Leprosy Congress had recommended control by segregation of patients, and this was reaffirmed in 1909. Under such circumstances, many States enacted the compulsory segregation law. In this way, leprosy was intricately linked with segregation, and thus Professor Sakamoto had added a sentence saying "Any isolation during treatment should be temporary and should be conducted in the context of public health consideration". He had decided, as he did not know what research had been done with regard to indigenous peoples and minorities with regard to leprosy, to leave the section "women and children affected by leprosy" as it stood, but had added a new sentence to the effect that States should research the actual state of vulnerable groups including indigenous peoples and minorities affected by leprosy.
Two sentences had also been added to the effect that States should establish early detention programmes. The most important thing was that all actors, regardless of public sector or private sector actors, would have to stand together as one to eradicate stigma and discrimination against persons affected by leprosy. The concept of inclusion also formed an undercurrent of the principles and guidelines. The draft set of principles and guidelines was not perfect - in a short time such as a one-year assignment, it could not be perfectible. However, Professor Sakamoto hoped that the Advisory Committee would adopt the draft, in order to comply with the mandate set by the Human Rights Council.
DHEERUJLALL SEETULSINGH, Advisory Committee Expert, said one point he wanted to be clarified pertained to paragraph 94, where Mr. Sakamoto had made corrections to the text, and where now the text noted that, “leprosy was a curable disease that was not highly infectious”, and “it was neither highly infectious nor hereditary”. He said this might be confusing and suggested the removal of the latter reference to “highly infectious”, because this could be misleading.
MIGUEL ALFONSO MARTINEZ, Advisory Committee Expert, said several Experts had raised the issue of segregation, not just himself. He welcomed the change in paragraph 92 referring to principles - the new wording was appreciated, particularly the addition of the last sentence. This led to a better understanding. However, the legislative history of segregation was of importance. He called himself a pre-post-modernist, as he was not particularly informed about post-modernity, and what he did know did not agree with him. The text could be made clearer if the content of the wording was examined. The final sentence was also a problem - the word segregation should be deleted entirely, emphasising the need for protection, as this was the primary aim. The sentence should be as followed: "persons affected by leprosy and their family members should not be deprived of their basic freedoms against their will or by force. Any isolation during the treatment should be temporary and conducted in the interests of public health." If the word segregation was removed, the use of the term isolation covered the situation. With regards to the guidelines, there was a section entitled equality and non-discrimination, and another entitled women and children affected by leprosy. Mr. Martinez did not believe in making a general approach and then dealing only with specificities, and suggested a change to the title to women, children, and other vulnerable population groups affected by leprosy. This made the text more inclusive.
MONA ZULFICAR, Advisory Committee Expert, said she supported the viewpoint of Mr. Martinez, to get the issue of segregation off the table. With regard to compulsory segregation and isolation in the context of discriminatory laws, she said some countries had discriminatory laws which were very much alive. Therefore, States should be encouraged to abolish legislation that had the old dimension of segregation in it. The other suggestion made by Mr. Martinez which she supported pertained to the comment on women and children. She said consistent changes should be made to paragraphs in the text to add women and children to be considered as part of the vulnerable groups.
LATIF HUSEYNOV, Advisory Committee Rapporteur, thanked Professor Sakamoto for taking on board some of his suggestions. He had two points: first, he saw his suggestion that the article in the International Covenant on Civil and Political Rights on the right not to be tortured be included in the chapter on the International Covenant had not been taken on board, and he would like an explanation for this. It was important to include this specifically, as the guidelines referred to inhuman treatment elsewhere. Relating to the phrase "persons being deprived of basic freedoms against their will or by force", this phrase was inserted with regards to segregation, and the idea was to express this main principle. Instead of using the term "isolation", the term "segregation" should be used. It was difficult to determine how a person could be deprived of their basic freedoms by use of force. Any isolation should be in the context of public health considerations. Any compulsory treatment was illegal, unless there was a risk for public heath. Any other isolation was illegal per se.
JOSE ANTONIO BENGOA CABELLO, Advisory Committee Vice-Chairperson, said he did not know whether they were all clear in their minds on the social health issues raised by the document. He had the opportunity to visit certain parts of the world in the context of combating poverty, and this was something that was touched on in the document. It was something that had to be raised and addressed; it was one of the most complex topics. In Brazil, there were many people afflicted by leprosy - Rio de Janeiro had one of the biggest colonies of leprosy and the living conditions were some of the worst seen. They were talking about thousands of people who could not live any other way, and because of their physical appearance would be discriminated against. People still had many misgivings and fears regarding leprosy. What was the future of leprosy settlements? This was one objective that had to be tackled. The silence in countries also had to be flagged up here. It was mentioned in the text that with the first vaccination the disease was less transmittable; however, what had been seen in many parts of the world was that these people did not have access to proper treatment and the treatment only started when the disease manifested itself. During the preliminary stages of the disease people were frightened to seek help and or there was no treatment available. The Committee had to careful with the words they used. Health services should be able to intervene very rapidly and people should obviously receive treatment – this disease could spread very rapidly. Thus the Committee had a responsibility to be clear on what they were talking about. Furthermore, what was clear was if someone was infected their right to decide whether they would ask for health care was a fairly restricted right.
MIGUEL ALFONSO MARTINEZ, Advisory Committee Expert, said he wished to thank colleagues who supported his suggestions. He wished to underscore the importance he attached to what was said by Ms. Zulficar, Mr. Huseynov, and Mr. Bengoa. The solution to what had been said to date, bearing in mind the original text and its modification, was to merge principles two and three in paragraph 92. He proposed the following text: "Persons affected by leprosy or Hansen's Disease and their family members should not be discriminated against or deprived of their basic freedoms on the grounds of having or having had leprosy or Hansen's Disease. Any isolation imposed on them either before, during or after treatment should be temporary and should be conducted in the context of public health considerations." This would avoid attack on rights and include basic freedoms such as the freedom of movement.
DHEERUJLALL SEETULSINGH, Advisory Committee Expert, said he had difficulty with the drafting and order of the text. There was a repetition with regard to the section on participation in public life; the same instruments were mentioned in two parts of the text. He suggested there should be some tidying up with regard to the repetition of instruments mentioned. He also asked Mr. Sakamoto if he would consider adding the idea of segregation, to the principles section of the text as it was not mentioned, but had been used in the guidelines section.
MONA ZULFICAR, Advisory Committee Expert, said she supported the redraft proposed by Mr. Martinez with respect to Principles 2 and 3. She had made a similar suggestion earlier. The text spoke of abolishing existing rules and practices that discriminated against those affected and their families - that was the intent of the text. In order to not enter into endless debates about this, Ms. Zulficar suggested adding the sentence beginning "any isolation", as this emphasised the public health issue, which should be the criteria for consideration in this context.
MIGUEL ALFONSO MARTINEZ, Advisory Committee Expert, said when there was change to one part of the text it was impossible to predict the impact on certain paragraphs, not the ones being changed, but those which would have a knock-off effect. It was important to be consistent. With regard to the changes proposed on principles 1-3 in paragraph 94, these could have a knock-off effect on the rest of the text.
JOSE ANTONIO BENGOA CABELLO, Advisory Committee Vice-Chairperson, said the principle was clear, but as had been said, the details needed to be looked at. The principle of non-segregation was obvious - what differentiated old policies from today was that the ill persons did not necessarily have to end their days in a leper colony. On that principle he agreed with Mr. Sakamoto, and thought this should be made clear. However, for public health reasons, there were times when the affected persons should be in relative separation and isolation, as was the case for other infectious diseases. This should be a principle. The only guideline that really emerged was on page 26. The State needed to know what it had to do with respect to the guidelines, and how to implement them, i.e. whether it needed to close down leper hospitals. If this were to be a practical guide, then practical issues needed to be considered. What the Advisory Committee was saying reflected the basic principles and guidelines, Mr. Bengoa repeated. He wanted the paper to be a truly useful document and something that would help protect human rights.
HALIMA EMBAREK WARZAZI, Advisory Committee Chairperson, said they had to be realistic, and add a part to put the obligation on States to take care of people affected by leprosy. Going even further, she said the health ministries of countries who were dealing with this disease should adopt preventative policies.
SHIGEKI SAKAMOTO, Advisory Committee Chairperson, said he would like to reflect on today’s suggestions, and would take into consideration what was suggested in order to redraft some parts of the principles and guidelines sections.
MONA ZULFICAR, Advisory Committee Expert, said that Mr. Sakamoto had agreed to certain changes and incorporations. Every day there were new infections and diseases - swine flu, TB returning from the dead, and they were all contagious, and related in one way or another to poverty and bad living conditions, no environmental conditions taken into account in housing, the lack of food, etc. This was just one of the diseases, and those affected by leprosy should be treated in the context of public health and should not be excluded or rejected or treated as second-class citizens. What the paper was saying was that leprosy was a curable disease, and in a few generations, if Governments did what they had to do, and civil society raised consciousness, and there were proper national health care plans covering it, then there should be no leprosy or stigma thereon. States should provide for the accommodation of the ill, and they should choose where to go.
For use of the information media; not an official record
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