Life After Cure: The Enduring Reality of India's Leprosy Colonies
Many individuals in India, despite being cured of leprosy (Hansen's disease), continue to reside in designated colonies. Alamelu, a 75-year-old resident of the Kalvari Nagar colony, exemplifies this situation. Diagnosed at age 12, she has lived in colonies for 22 years, having been sent away by her family due to social stigma that threatened their reputation and her siblings' marriage prospects. Alamelu never reconnected with her family and considers the colony her true home.
Persistent Medical Challenges
While residents are cured of the active disease, they often suffer from long-term debilitating effects, including crippled hands, blindness, amputations, and chronic, non-healing foot lesions susceptible to infection. Medical care is provided by visiting doctors, with nurses and helpers assisting with wound care, tissue removal, massages, and the distribution of medical supplies like gauze, bandages, and ointment.
The Legacy of Stigma and Exile
Kalvari Nagar is one of approximately 750 leprosy colonies in India, relics from a period when individuals diagnosed with leprosy were exiled due to the mistaken belief that the disease was highly contagious and dangerous.
In reality, leprosy is one of the least contagious diseases, with 95% of humans naturally immune and the remaining 5% not easily contracting it. The disease is curable with antibiotics, particularly when detected early.
Despite medical advancements, the social stigma associated with leprosy, which has persisted for centuries, continues to hinder the reintegration of affected individuals and complicates global elimination efforts by discouraging early treatment seeking. In 2024, India accounted for nearly 60% of the approximately 173,000 new Hansen's disease cases reported worldwide.
Historically, patients were banished to these colonies. Today, tens of thousands of former patients and their descendants, most of whom have never contracted leprosy, remain in these communities. They often face poverty and inadequate services, choosing to stay due to a sense of belonging, fear of non-acceptance elsewhere, or lack of alternative housing. For example, Alamelu, whose only visible legacy of the disease is clawed hands, states the stigma has decreased but owns her home in the colony where her two adult sons reside. Rabha, another long-term resident with a significant foot wound, similarly expresses comfort and acceptance within the colony, where her son and grandchildren live.
Efforts Towards Improvement and Education
Conditions in the colonies have gradually improved through government initiatives and nonprofit organizations. Rising Star Outreach, for instance, provides medical services, infrastructure enhancements like clean water, microloans for small businesses, and operates boarding schools outside the colonies. These schools offer improved education to hundreds of colony children, few of whom have had leprosy.
Legal progress includes the repeal of discriminatory laws allowing segregation and using leprosy as grounds for divorce in India, though some discriminatory statutes related to travel, employment, and services remain. Social activist Padma Venkataraman notes that fear persists, particularly in poorer regions, due to a lack of understanding about the disease's curability and low transmissibility.
Becky Douglas, founder of Rising Star Outreach, emphasizes education as crucial for changing public perception.
The organization's boarding schools aim to alleviate poverty and challenge the stereotype of leprosy victims. Graduates often pursue higher education and professional careers, demonstrating the potential for successful lives outside the colonies. Jennifer, a 24-year-old English teacher who grew up in a colony and attended a Rising Star school, highlights how her accomplishments have begun to shift perceptions in nearby villages. She continues to advocate for other colony children, inspiring them to pursue their dreams and achieve successful lives.