Khurshadbee was 34 years old when she married Shabbir Sayyed. In India, where religion, family, caste and education often dictate who marries whom, theirs was an unusual match. She was Hindu, he was Muslim, but they had one thing in common.
They met at Shri Ram Mandir Colony, a leprosy settlement in the suburb of Ulhasnagar, 60 kilometres from the heart of India’s financial capital, Mumbai.
The colony was established in 1960 when fear of leprosy drove thousands into isolated settlements. In Mumbai, the effects of leprosy can be seen at railway stations and busy intersections as financial desperation forces people to display their disabilities for money. A quick glance at a person suffering from leprosy reveals how the disease can attack the peripheral nerves, leading to the loss of fingers, toes and nose.
Because leprosy can cause people to lose body parts in such horrific fashion, it’s always been shrouded in superstition. Even today, some believe the disease is a curse from God, hereditary and incurable and because of this social stigma, 700 colonies like Shri Ram Mandir still exist in India.
Rusted metal poles mark the settlement’s entrance at the local rail tracks. Single-roomed houses made from bricks, concrete and recycled materials, take up most of the available space. What the colony lacks in greenery and open space is made up for with bright blue, pink and yellow paint. There’s no running water, so after women have collected water, they keep buckets outside their front doors. The 360 residents share a toilet and on Sundays spend most of their time outside the colony’s modest temple, talking and drinking Ulhasnagar’s homemade version of Fanta. It has a communal and friendly atmosphere.
Beyond the colony’s borders, however, residents are constantly reminded of why they remain isolated.
"When we go to a highly socialised place they treat us as ignorant and foolish, they don’t want to go near us. They avoid going near us, touching us — that is why we feel alone," Khurshadbee’s 21-year-old son, Hussain says.
Hussain is part of a new generation born and raised in the colony. Although he doesn’t have leprosy, he experiences many of the disease’s social and financial burdens.
His father died 10 years ago and left his mother to be the sole provider for Hussain, his brother and nephew. They live off Khurshadbee’s government pension — approximately six dollars a month. Electricity chews through most of this money and the rest is spent on grain, oil, milk and clothing.
"My mother also does household jobs, but in the leprosy colony only. Because others are not allowing us to come to their houses," Hussain explains. In the colony, most of the older members who’ve lost fingers or toes have to beg.
After years of isolation and discrimination, thousands of Leprosy Affected Persons (LAPs) took to Mumbai’s streets on 30 January this year and called on Maharashtra’s Chief Minister to tackle the financial and social issues they face.
Their demands, outlined in a petition to the Central Government, include free education for LAPs and their children, an increase in the pension and amendments to discriminatory legislation.
Under the Special Marriage Act 1954, the Hindu Marriage Act 1955, and the Dissolution of Muslim Marriages Act 1939, leprosy remains grounds for divorce and the Orissa Municipal Act of 1950 bars people with leprosy from holding civic posts.
In response to their demands, the Indian Parliament’s Committee on Petitions recommended that the Central Government institute a nationwide policy to stop the "discrimination and isolation that has pushed LAPs into the shackles of poverty".
Health experts and colony leaders, however, say an effective large-scale response is still a long way off.
Leprosy is competing for funding and attention with HIV, tuberculosis and cancer; it’s especially hard to compete now that leprosy has been deemed a conquered disease. Five years ago, the World Health Organisation (WHO) declared leprosy "eliminated" in India, which means there is less than one case per 10,000 people, but according to Dr R Ganapati, founder of the Bombay Leprosy Project, "elimination" doesn’t tell the whole story. Elimination only refers to active cases of leprosy, says Dr Ganapati, and not to those patients who are cured of the disease but still require extensive rehabilitation treatment.
"I find quite a lot of leprosy patients are suffering from the ravages caused by the disintegration of the nervous system. This is not counted in the statistics … If I look at it from a clinical angle, leprosy is a very big problem even today."
Dr Ganapati says the stats also can’t keep up with the constantly shifting population of Mumbai, boosted daily by those who arrive with hopes of sharing the city’s economic growth.
In Mumbai’s Dharavi slum — with a population anywhere between 500,000 and one million — Dr Ganapati estimates that leprosy prevalence is three times higher than the national rate. Leprosy thrives in slum conditions as shared toilets, open drainage and close living conditions allow the germ to spread easily.
"There are more and more people migrating to Bombay for jobs from endemic parts of our country. So they may spread the disease. Over the past year we have detected 20 cases without doing surveys. Which means there’s probably more."
When Dr Ganapati started BLP he set up treatment centres within communities and established programs to fight social stigma at the grassroots. Now, 33 years later, BLP treats up to 30 patients a day in Mumbai and also runs projects in rural areas outside the city.
Since leprosy has been "eliminated", however, continuing this work is proving difficult. "I depend entirely on public donations … I require something like 80 lakh to one crore (approximately $200,000 to $250,000) to do reasonable work and do my research," he says. Last year the project only managed to raise approximately $125,000 and Dr Ganapati fears this year will be worse.
It’s exactly the situation predicted by the World Health Organisation (WHO). A year after it declared leprosy eliminated WHO warned that once the threat of leprosy decreased, keeping the public and government interested would become more difficult. Latest figures show that new cases are still occurring worldwide. In 2008, WHO reported 134,184 new leprosy patients in India.
WHO and the Indian Government continue to run Community-based Rehabilitation (CBR) programs that provide treatment for those physically disabled by leprosy but Hussain and Shri Ram Mandir residents say that systemic changes — like those outlined in the petition — need to be put in place.
Meanwhile, Hussain isn’t waiting. He’s focusing on building a life for himself outside the colony.
Through hard work and talent, Hussain recently received financial assistance from his engineering college. Everyday he travels on the city’s packed trains for three hours, carrying his family’s hopes and expectations. He speaks English, is getting a good education and dreams of marrying an educated girl.
"Education and employment are the things that you must have otherwise living in this type of place the world will not recognise you," Hussain says.
"Education is very much for everyone so that we can try to communicate with other people and better ourselves. We want the Government to give us that chance."
The Government has promised to answer the demands set out in the petition by May this year.
WHO India was contacted by newmatilda.com for comment but received no response.
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