The then chairperson of the drafting committee of the Universal Declaration of Human Rights Eleanor Roosevelt had once remarked: ‘where after all do human rights begin? In small places, close to home, so close and so small that they cannot be seen on any maps of the world. Unless they have a meaning there, they have little meaning anywhere’. This appears to be true in the case of persons affected by leprosy and their family members in India.
Since Biblical times, persons affected by leprosy have been discriminated, marginalised and isolated on account of stigma the disease carries. India alone carries 63% of the global burden of leprosy. According to the International Federation of Anti-leprosy Associations, there are 119 laws that are still in force in India that are discriminatory in nature against persons affected by leprosy resulting in deprivation of their fundamental human rights.
Persons affected by leprosy continue to live in colonies that were segregated on account of stigma. There are still about 850 leprosy colonies in India where people affected by leprosy and their family members continue to live in a segregated environment within the communities.
Though the bacteria that causes leprosy is destroyed almost completely with a single dose of multi-drug therapy which has been available free of cost since 1981 and prevented the affected from spreading infection, acute stigma associated with the deformities that the disease causes has led to isolation of persons affected by leprosy and their family members in the society.
There are instances that persons affected by leprosy due to deformities and loss of fingers have been unable to comply to the biometric identification process, rendering them disqualified to access some of the social security and poverty alleviation programmes in India.
Children affected by leprosy are often forced to discontinue their education on account of stigma and lack awareness about the disease. Women affected by leprosy face multiple discrimination both within the family and in the communities, often becoming victims of neglect and violence.
There are personal laws in India under which divorce is still granted on the grounds of leprosy, and life and health insurance are often refused to persons affected by leprosy. Stigma associated with the disease has led to exclusion of persons affected by leprosy and their family members in social and religious functions held in the communities.
This historical deprivation of political, economic and socio-cultural rights to persons affected by leprosy has caused what is called ‘civil death’ as mentioned in the report of the UN Special Rapporteur on elimination of discrimination against persons affected by leprosy and their family members to the 38th session of the Human Rights Council, 2018.
Taking note of the existing stigma and discrimination against persons affected by leprosy and their families, the UN Human Rights Council formulated ‘principles and guidelines for elimination of the discrimination against persons affected by leprosy’. These have been adopted by the General Assembly and the HRC. These principles and guidelines clearly emphasise the responsibility of the national governments in eliminating discrimination against persons affected by leprosy and their families.
Despite adoption of the resolution on principles and guidelines by the Human Rights Council and its endorsement by the UN General Assembly in 2010, persons affected by leprosy continue to be discriminated in many ways.
The Principles and Guidelines complement international human rights treaties that India has ratified. Discriminatory practices against persons affected by leprosy-related disabilities are in violation of some of the critical rights recognised under these human rights treaties.
The Law Commission of India in its report No. 256 on elimination of discrimination against persons affected by leprosy drafted a bill titled ‘Eliminating Discrimination against Persons Affected by Leprosy (EDPAL) Bill 2015 which is still pending before Parliament. The bill recommends many affirmative actions on the part of the government to end discrimination against persons affected by leprosy and their family members.
Expressing deep concern about the prevailing stigma against persons affected by leprosy, the Supreme Court of India in the matter of Pankaj Sinha and others v/s Union Government of India and others on September 14, 2018 issued directions to the government to raise awareness about leprosy to dispel fear about the disease and enable persons affected to lead a life of dignity and equality.
This year marks the 70th anniversary of the Universal Declaration of Human Rights and it is time the society stood up for the human rights of persons affected by leprosy and the states commit themselves to ensure equality, justice and human dignity to those affected by leprosy and their family members.
(The writer is Head of Advocacy, Leprosy Mission International Office, London)