A month after the Dana Majhi episode in Kalahandi district of Odisha in 2016, the dead body of an 80-year-old widow was carried on a cot by her three daughters to cremate. The reason was fear and stigma of leprosy. A year later leprosy-cured Jagyasini Bhoi was denied a dignified funeral as her body remained untouched for hours. Only when it started decomposing that the she was stuffed in a garbage bag and thrown in the nearby forest. If this picture of 21st Century India from Odisha is still not enough to portray the amount of discrimination and stigma faced by people affected by leprosy, let’s see the scenario in the Capital of India.
In December 2002, Central Government framed the Delhi Metro Railway (Travelling of Persons from Infectious and Contagious Diseases etc) Rules, 2002, Section 7 of which mandates that in order to travel, a non-infective leprosy patient should carry a certificate from a registered medical practitioner certifying him to be non-infective. Ironically, this was gazette notified on the next day of Human Rights Day in 2002 and still highlighted as warning on the hoardings at metro stations.
On this day, seventy years ago, on 10th December 1948, the international community agreed that human rights are fundamental and universal rights. Human dignity was considered as the anchor norm of human rights respecting each individual to be of an inestimable value. But as the Universal Declaration was not a treaty therefore it was not legally binding. This changed when India ratified the Convention on the Rights of Persons with Disabilities in 2007 which forced India to create a new anti-discrimination law in the form of Rights of Persons with Disabilities Act, (RPDA) in December 2016.
Despite the progress, currently, there are 119 civil and criminal laws in India that discriminate against a person affected by leprosy on the grounds of the disease including ground for divorce, denial of driving license, incarceration, higher insurance and disqualification from academic posts, to name a few. The problem compounded in December 2005 when India declared itself leprosy-free. Leprosy was only eliminated not eradicated. India continues to account for 57% of new cases reported globally each year. Though these can be easily controlled, as a single dose of multidrug therapy completely cures the infection. What cannot be managed is the legal and social discrimination towards people affected by leprosy as well as their family members. It is not uncommon to find the youth from the Tahirpur area of Delhi (largest area inhabited by people affected by leprosy in Asia) face discrimination in education whenever they disclose their place of residence.
The RPDA passed in December 2016 was heralded as a game changer but it only covers those people affected by leprosy who have 40% and more of disability. Neither does it cover the rest, nor the family members who continue to face stigma. The possible solution to this was already provided by the Law Commission of India, a quasi-judicial body of the Government of India which proposed the adoption of a specific legislation on leprosy titled ‘Eliminating Discrimination Against Persons Affected by Leprosy and Their Family Members Bill, 2015’ (EDPAL Bill) in its report 256. It provides for repeal and/or amendment of provisions which are discriminatory in nature. An RTI filed by me on the status of EDPAL Bill shows that Centre has forwarded the report to State/UT for comments on personal laws and to the health, transport and law Ministry for the rest. Information from the Ministry of Parliamentary Affairs is awaited.
Last December, Rajya Sabha member KTS Tulsi introduced a Private Members bill [The Rights of Persons Affected by Leprosy and Members of Their Family (Protection Against Discrimination and Guarantee of Social Welfare) Bill, 2017] which is on the same line as EDPAL Bill. The repeal of 119 laws by Centre/States/Panchayats can take ages but by a single stroke in the Parliament either of the anti-discrimination bills (EDPAL or Private member) can be approved to provide human, civil, political, economic, social and cultural rights to people affected by leprosy.
70 years ago, it was an Indian woman Hansa Mehta in the United Nations Commission on Human Rights who fought to include women rights into the Declaration by forcing the change in Article 1 as “All human beings (not men alone) are born free and equal.” As we celebrate the 70th anniversary of the Universal Declaration of Human Rights on this Human Rights Day, the Indian Parliament can make the rights real by passing any of the two anti-discrimination Bill to grant fundamental human rights to people affected by leprosy. Will this December end discrimination?
(The writer is a medical doctor at University College of Medical Sciences, Delhi, and is a disability rights activist. Views are personal)