"Breaking the Stigma: Advocating for the Rights and Dignity of Leprosy Patients in India"

  

"Breaking the Stigma: Advocating for the Rights and Dignity of Leprosy Patients in India"

 

During the British rule in India, the Dr. Bandorowala Leprosy Hospital was established by Christian missionaries to provide treatment for leprosy patients. However, during the period between 1960 and 1970, patients often delayed seeking treatment due to the stigma, fear, and lack of knowledge surrounding the disease. Leprosy was considered a curse of God, leading to severe deformities and disabilities. Moreover, medicines were not readily available, which further complicated the situation.

Despite receiving treatment, many patients were not accepted back into their families, and some were even reported as dead in family records. Society shunned and boycotted them, and job opportunities were scarce. The discrimination against leprosy patients was a result of the deep-rooted stigma associated with the disease, leading to social ostracism and exclusion.

Dr. Jal Mehta had witnessed the distressing condition of leprosy patients and established rehabilitation centers where they could receive skill development training and earn for their daily livelihood. While the patients stayed in the leprosy hospital, the hospital faced the challenge of admitting new patients, forcing them to discharge the old treated patients. Subsequently, these patients moved to a remote forest area to live with dignity, without the fear of social ostracism. This relocation occurred between 1975-1977, after their discharge from the hospital, and they built huts to avoid discrimination and stigma.

The patients residing in the leprosy colony were constantly under threat from local villagers who believed that their presence would bring shame to the town. They were subjected to physical assaults, verbal abuse, and social boycotts on a daily basis. Despite this, the patients chose to stay there, compelled to face insults and abuses every day, with many even afraid to sleep in their huts at night. The neighboring villagers would often come to the colony armed with sticks to attack the patients and force them to leave.

The situation was further exacerbated as the farmers who had previously cultivated their land near the colony were overcome with fear and stigma associated with the disease. Many abandoned their farms or sold them to avoid proximity to the leprosy patients, causing a significant psychological impact on every patient's mind.

Sadly, the situation only worsened as the forest department began demolishing the patients' huts and forcefully evicting them from their homes. Even after suffering from all of these, they stayed there, hoping for a better future.

In July 1981, the patients of the leprosy colony in Pune discovered that the Chief Minister of Maharashtra, Mr. A.R. Antulay, was visiting their city. They banded together to meet him, but their visit was initially rejected. Undeterred, they laid on the road and blocked the CM's vehicle until he agreed to speak with them. The CM issued an order allowing them to remain on the forest land until further notice from the government. However, it must be noted that the Chief Minister did not have the authority to allocate forest land or issue orders related to it, as these powers are vested only in the Central government. In India, to stay on forest land, one must follow a government procedure that involves filling an online form with the Centre to obtain NOC to stay, which requires some expenses for making papers, maps, and drawings. Despite this, the patients courageously chose to remain on the land with the CM's paper, thereby reducing the risk of forest and local villagers.

The leprosy colony, filled with gratitude for the CM's remarkable decision, named their settlement Antulay-Nagar (Nagar means Town or Village) to commemorate his benevolent act. It is worth noting that before meeting the CM in 1981, the patients had tried to meet with several politicians between 1977 and 1981, but they had only been met with false commitments and promises. Mr. A.R. Antulay's actions were truly remarkable and had a profound impact on the leprosy patients.

The colony has fostered strong bonds among its members, who have found family in each other due to their lack of other social connections. However, one disheartening reality observed within the colony is that when the children of leprosy patients reach a marriageable age, they are often only able to marry other children of leprosy-affected parents. This highlights the continued presence of invisible stigma, as many children of leprosy patients face difficulty finding marriage partners even into their thirties, forties, or beyond, leading to significant emotional and psychological pain.

Dr. Bandorowalla Leprosy Hospital is a government-run hospital in Maharashtra, and it is the largest leprosy hospital in the state. Adjacent to this hospital is a colony comprising approximately 350 families, each family consisting of a parent with leprosy and their healthy, leprosy-free children.This colony is recognized as the largest leprosy colony in Maharashtra, and it is home to people affected by leprosy who are often marginalized and face multiple challenges in their daily lives.

In 2021, during the COVID-19 pandemic, the leprosy colony received official legal notice from forest officials asking them to vacate the premises. Despite the existence of Government and UN resolutions aimed at protecting leprosy-affected individuals, these resolutions are often not implemented effectively on the ground, resulting in human rights violations in the colony that go unaddressed.

My organization is dedicated to advocating for the economic, health, social, and educational development of the leprosy colony. We are currently focused on addressing the forest land issue by working closely with the forest department to prepare the necessary screening papers to obtain the NOC from the Centre. We are also gathering important data related to leprosy patients, obtaining disability certificates, and collaborating with human rights activists and WHO representatives to find a solution.

Our efforts require the support of donors, who can assist us by contributing their time, ideas, and financial resources if possible. In conclusion, while leprosy patients in India face numerous challenges, including discrimination, social stigma, and limited opportunities, our organization is committed to helping these individuals and their families by advocating for their rights and providing vital support services.

I appeal to you to join us in this great work and make a difference in the lives of those who have been marginalized for far too long. Your support can make all the difference.

Thank you for your time and consideration.

Satish Sawant

Apanga Leprosy Punarvasan Va Yuvak Sangathan Antulenagar

Pune Maharashtra India

+91 937-123-5680.

Email: apysapune@gmail.com