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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

DOCUMENT: Discrimination Takes Many Forms

Need for greater awareness, and establishment of principles and guidelines

The following is excerpted from the text of the Written Statement submitted to the Sixth Session of the United Nations Human Rights Council by The Nippon Foundation, an NGO in Consultative Status on the Roster, on August 31, 2007. The full text can be found on the UNHRC website.

People affected by leprosy are denied the basic human rights, as proclaimed in the International Covenant on Economic, Social and Cultural Rights, to which all human beings are entitled. These include:

- Self-determination (Article 1): In the case of leprosy-affected people, they do not determine the course of their lives; instead, they are defined by a disease that places severe social and economic constraints on them.

- Right to work (Article 6): Attitudes toward leprosy make it harder for someone affected by the disease to find work, and a diagnosis of leprosy can result in dismissal.

- Just and favorable conditions of work (Article 7): Wage abuse is a serious problem. People who are desperate for a mouthful of food do not have the leverage to fight back, especially when stigmatized by leprosy.

- Protection for the family (Article 10): Leprosy can tear families apart, even today. Moreover, finding a marriage partner can be difficult for those affected by the disease, and even for their family members, depriving them of the opportunity to start families of their own.

- Adequate living standards (Article 11): In any given country, people in leprosy villages, colonies, or sanatoria face financial difficulties because of the lack of job opportunities open to them, forcing them to endure substandard living conditions.

Dr. P.K Gopal reads from the Oral Statement to the Sixth Session of the Human Rights Council on September 24, 2007: "Tens of millions of people cured of leprosy and their families are marginalized from society, suffering from stigma and social discrimination."

- Physical and mental health (Article 12): Social rejection, lack of education and financial constraints make good health difficult to attain. Frequently, people affected by leprosy and their family members are seized by feelings of shame, thus adding "selfstigmatization" to the burden they must bear.

- Education (Article 13): Schools will often deny access to children affected by leprosy, or to the children of a parent affected by the disease. Further, lack of income and the remote location of leprosy villages also erect barriers to being educated.

- Right to take part in cultural life (Article 15a): A person affected by leprosy's geographical as well as social isolation denies him or her access to culture.

... [W] e would like to call upon the Human Rights Council to:
- build on the work of the [UN] Sub-Commission [on the Promotion and Protection of Human Rights] and take up leprosy and human rights as an issue of discrimination, studying the subject as a distinct and separate item;

- appoint a Special Rapporteur to make factfinding visits to countries concerned and investigate the condition and circumstances of individuals and groups affected by leprosy, interviewing not only residents of sanatoria and colonies, but also those living in the community, as well as persons working on their behalf;

- organize seminars to which all stakeholders, particularly representatives of persons affected by leprosy, are invited, and mobilize stakeholders to create a platform to formulate principles and guidelines ending leprosyrelated discrimination; and

- issue a set of principles and guidelines that can be applied by all stakeholders, including governments, UN agencies, and NGOs, to eliminate the disease, end leprosy-related discrimination, and reintegrate all those subject to such discrimination.

Leprosy FACTS

At the Fifth International Leprosy Congress held in Havana, Cuba, in 1948, it was decided that the use of the term "leper" be abandoned in favor of "leprosy patient" or similar; that the use of any such term, in any language, to which unpleasant associations are attached should be discouraged; but that the term "leprosy" be retained as the scientific designation for the disease.