Italian Association Amici di Raoul Follereau (AIFO)

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A Patron Saint for Human Rights
CANONIZATION OF FATHER DAMIEN
Leprosy & Human Rights

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Fr Damien

Leprosy

Resolution Documents

General

The Universal Declaration of Human Rights asks for equality and dignity for all human beings. The basic human rights are often denied to persons affected with leprosy. They may lose jobs and forced to leave their families after the diagnosis of their disease. They face discrimination in daily lives. Public buses and public services may refuse to serve them. Sometimes, these discriminations are supported by national laws.

Taking note of the continuing human rights violations for the persons affected with leprosy, the United Nations Human Rights Council (UNHRC) General Assembly approved a resolution in June 2008 asking for an end to discrimination against persons affected with leprosy.

This resolution was proposed by Government of Japan, co-sponsored by 59 Governments and adopted unanimously by 47 Governments.

The main points of this Resolution are as follows:

• Each country must be aware of the fact that the leprosy-related discrimination is a serious violation of human rights.

• Each Government is requested to take measures to eliminate leprosy related discrimination.

• The Office of the United Nations High Commissioner for Human Rights (OHCHR) is requested to conduct human rights education and awareness promotion activities concerning leprosy.

• The OHCHR is requested to conduct research on the efforts made by each country to eliminate leprosy-related discrimination and gather information.

• The Human Rights Council Advisory Committee is requested to draw up guidelines by September 2009 to end leprosy-related discrimination.

Fr Damien and Human Rights: During Fr Damien's time, there was no Universal Declaration of Human Rights. Yet, looking at his work and his testimonies, it is clear that he asked for justice and dignity for people affected with leprosy.

Fr Damien, had arrived in Kalaupapa leprosy settlement in Molokai island of Hawai when he was 33 years old and who died there 16 years later. He, as a priest and as a leprosy affected person, could feel the existing discrimination and stigma against this disease.

Fr Damien expressed himself many times, asking for basic human rights and justice for persons affected with leprosy. For example, in 1886, he talked about right of persons affected with leprosy for marriage and family, "In fulfillment of my duties as priest, being in daily contact with distressed people, I have seen and closely observed the bad effect of forcible separation of the married companions. It gives them an oppression of mind which, in many instances, is more unbearable than the pains and the agonies of the disease itself."

In the book, "Father Damien ... A bit of Taro, a bit of fish and a glass of water" by Anwei S. Law and Henry Law, it says, "It is now 120 years since Fr Damien died amongst his friends at Kalawao. A cure for the disease was discovered in 1941 and since that time, some 15 million people have been cured of leprosy. However an equal number of people, together with their family members, continue to face widespread social injustice because they once had this disease."

The legacy of Fr Damien can be recognised today by eliminating social stigma and discrimination that surround this disease. Fr Damien, his own life lived with dignity, asking for justice and dignity for fellow persons affected with leprosy, is the true Patron Saint of Human Rights.

Working for a UN Convention on rights of persons affected with leprosy: In October 2008, a meeting of persons affected with leprosy and other stakeholders was held in Istanbul (Turkey) where it was decided to propose a United Nations Convention on the human rights of persons affected with leprosy. This Convention highlights all the different life areas in which persons affected with leprosy face discrimination and human rights violations in different countries.

This is the proposed text of the Convention as agreed in the Istanbul meeting:

Preamble

The States Parties to the present Convention:

a.     Recalling the principles proclaimed in the Charter of the United Nations which recognizes the inherent dignity and worth and the equal and inalienable rights of all members of the human family as the foundation for freedom, justice and peace in the world.

b.     Recognizing that leprosy is a curable disease that is rendered non-infectious after the first dose of treatment.

c.     Recognizing that despite the fact there has been a cure for leprosy in the last few decades, the historical tradition of stigma, discrimination and social exclusion still continues.

d.     Emphasizing the empowerment of people affected by leprosy and their abilities as agents of change.

e.     Considering that persons affected by leprosy should have the opportunity to be actively involved as partners in decision-making processes about policies and programs directly concerning them.

Have agreed as follows:

Article 1 – Purpose

The purpose of this Convention is to promote, protect and ensure the equal human rights of all persons affected by leprosy and their families, and to promote respect for their inherent dignity.

Article 2 – Definitions

For the purposes of this Convention:

“Leprosy” is a mildly infectious, non-contagious disease transmitted by air containing leprosy bacteria.

“People” includes all people who have leprosy, currently under treatment for leprosy, individuals cured from leprosy, and their family members.

“Discriminatory language” includes derogatory words such as “leper” or the equivalent in any language or dialect, and/or labels that do not recognize the inherent dignity of each individual.

Article 3 – General Obligations

1.      State Parties undertake to ensure and promote the full realization of all human rights for all people without discrimination of any kind.  To this end State Parties undertake:

a)     To adopt and take all appropriate legislative and administrative measures to modify or abolish existing laws, rules, regulations, customs and practices that constitute discrimination against persons with leprosy and to implement the rights recognized in this Convention

b)     To ensure that government policies and programs, authorities and institutions, individuals, organization or private enterprise protect and promote the human rights recommended in this Convention 

c)     To formulate appropriate punitive action against individuals or organizations who discriminate against any person affected by leprosy or their family members

2.     To promote economic, social and cultural rights, each State Party will undertake  measures to achieve the maximum of its available resources to progressively achieve the full realization of these rights.

3.     In the development and implementation of legislation and policies and in other decision-making processes, States Parties will closely consult with and actively involve persons affected by leprosy through their respective local and international organizations.

Article 4 – Discriminatory Language

1.     States Parties must remove discriminatory language from legislation

2.     States Parties ensure the removal of discriminatory language in teaching materials for medical professionals

3. State Parties ensure the use of non-discriminatory language in any government publication and will revise existing publications containing such language

4.     States Parties ensure the removal of discriminatory language and photographs from textbooks and stories for preschool and school-age children

5.     State Parties shall prohibit the use of derogatory language and acts, in the media such as press, television, music, electronic media, and cinema.

6.     State Parties prohibit the use of discriminatory language in dictionaries and other standard reference materials.

Article 5 – Awareness Raising

1.     States Parties shall adopt measures to raise awareness throughout society and to foster respect for the rights and dignity of people.  Measures include:

a.      Foster an attitude of respect for the rights of people at all levels of the education system beginning with early childhood education

b.      Include information about leprosy such as current medical information in primary education textbooks to provide children with an understanding of the disease

c.      Encourage the media to portray people in a manner consistent with the purpose of this Convention

d.      Promote the recognition of the skills, merits and abilities of people and their contributions to society and where possible support exhibiting their artistic, cultural and scientific talents

e.      Involve artists, poets, musicians, writers and others in reaching society

f.       Educate religious and opinion leaders about how leprosy in teachings or written materials contributes to the discrimination of people

Article 6 – Training Healthcare Professionals and Paramedicals in the Field of Leprosy

1.     States Parties support training on the prevention of discrimination of any leprosy patient.  Measures will include:

the teaching of students at medical schools, nursing schools, and schools for health related occupations

the training of trainers on teaching about the prevention of discrimination

the development of materials to include information on prevention of discrimination

Article 7 – Education

State Parties recognize the rights of people and their children not to be denied admission to school at any level and not to be expelled on the basis of leprosy.

Article 8 - Employment

State Parties recognize the right of people to work on an equal basis with others.

State Parties prohibit discrimination on the basis of leprosy with regard to all matters concerning employment including recruitment, hiring, continuance of employment and career advancement.

State Parties will not deny any certificates necessary for employment or establishing or managing a business.

Article 9 – Housing

1.     State Parties recognize the rights of persons not to be discriminated against on the basis of leprosy in their choice of housing or be displaced without providing alternative accommodations.

2.     State Parties will ensure that members of the older generation who were once forced to live in isolated communities because of leprosy, are able to live out their lives in what has become their home.

Article 10 – Public Transportation

State Parties recognize the rights of persons to use all types of public transportation.

Article 11 – Marriage and Divorce

1. State parties recognize that leprosy should not be an obstacle to marriage.

2. State parties recognize that leprosy cannot be a cause for divorce.

Article 12 – Driving License

State parties recognize that people should not be prevented from obtaining any type of driving license on the basis of leprosy

Article 13 – Participation in Political Life

State Parties guarantee to people political rights and will ensure that people can participate on an equal basis with others through the right to vote and right to contest any election.

Article 14 – Participation in Public Life

State Parties shall ensure that there will not be any discrimination of people participating at international, national, regional and local  events including granting a visa, providing accommodations at hotels and hostels, and using recreational facilities.

Article 15 – Healthcare

State Parties recognize that people cannot be denied healthcare because of leprosy in any public or private institution.

Article 16 – Standard of Living

1.     States Parties recognize the right of people to a standard of living for themselves and their families, including food, clothing, housing, sewage systems, and drinking water, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of leprosy.

a.      To promote collaborative programs among the government, civil society and private institutions to raise funds and develop programs to improve the standard of living

b.      To provide or ensure the provision of education to children whose families fall below the poverty line, through scholarship and other programs sponsored by the government and/or civil society

c.      To ensure people below the poverty line, have access to vocational training programs, micro-credit and other means to improve their standard of living

2.     States Parties shall promote the realization of this right through such financial measures:

a. To ensure that people who are not able to work because of their age or disability, widows and invalids, should have access to a government pension and institutional care

b. To provide financial assistance for housing and healthcare for people who fall below the poverty line

Article 17 – Women Affected by Leprosy

States Parties recognize the Convention on the Elimination of All Forms of Discrimination Against Women in guaranteeing the human rights of women affected by leprosy

Article 18 – Personal Property and Inheritance

State Parties recognize the right to own property and the right to inheritance and no person shall be denied either on the basis of leprosy.

Article 19 – National monitoring

1.     States Parties shall in accordance with their legal and administrative systems establish a framework to promote, protect and monitor the articles of the Convention.

2.     States Parties shall ensure the participation of people and their representative organizations in the monitoring process.

3.     States Parties shall routinely meet with individuals, non-governmental organizations and especially with representatives from organizations of people to exchange information about the progress and challenges on eliminating discrimination.

4.     States Parties will ensure the monitoring of actions taken to eliminate the discrimination of people through different tools such as taking surveys, visiting communities where people live, conducting focus groups, and monitoring the teaching of healthcare professionals.

Article 20 – Committee on the Rights of Persons Affected by Leprosy

A committee shall be established on the Rights of People Affected by Leprosy (hereafter referred to as Committee) to carry out the following functions

1.     The Committee shall consist of ten experts

2.     The Members shall be elected by State Parties consideration given to equitable geographic distribution, different forms of civil society, representation of the legal system, balanced gender participation, and representation by people affected by leprosy.

3.     The first election will be held no longer than six months after this Convention is in force.  At least three months before the elections, the General Secretary of the United Nations will send the list of candidates by stating the countries in alphabetical order of the signing States Parties.

4.     The election of the Committee members will be according to the procedures of the United Nations.

Article 21 – Reports of States Parties

Each State Party shall submit an annual report to the Secretary General of the United Nations about the progress of the measures taken.

The Committee will study the reports of the States Parties and submit an annual report to the Social and Economic Council of the United Nations and will ask for suggestions and render opinions

Article 22 – Depositary

The Secretary General of the United Nations shall be the depositary of this Convention.

Article 23 – Signature

The Convention shall be open for signatures by all States Parties at the United Nations headquarters in New York City as of xxx.

Article 24 – Consent to be bound

This convention shall be subject to ratification by signatory States.  It shall be open for accession by any State which has not signed the Convention.

Article 25 – Amendments

Any amendment to the Convention shall be done as per the established procedures of the United Nations.