India’s forgotten people

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.

Dr Ganapati from the Bombay Leprosy Project

“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.

Leprosy patients protest mistreatment in Mumbai

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.

Story published at newmatilda.com on February 11, 2010

Diary of Bhopal

This December 3 marked the 25th anniversary of the world’s worst industrial disaster. In 1984, just after the stroke of midnight in the city of Bhopal, India tonnes of toxic gas leaked from the Union Carbide pesticide factory, killing thousands instantly. But now the town is grappling with a host of medical, social and environmental problems. Two new generations have since been born, some with crippling birth defects due to the gas their parents enhaled, others sick due to drinking contaminated water.

Survivors continue to suffer from ongoing illnesses and families have sunk deeper into poverty due to medical expenses and having lost their sole breadwinners. Still the cleanup of the contaminated area which continues to make new Bhopalis ill has yet to take place.

I went there in October to write a story about the town 25 years on. You can read the full story at New Matilda

Below is my diary of my time spent there.

Day 1

I don’t know what I was expecting of Bhopal. Perhaps a city with a bombsite at the centre or skulls and crossbones viciously warning visitors. But what we found was just a normal Indian city, dusty and full of life.

A survivor of the Bhopal gas tragedy

Like any town off the tourist track we are as much as an oddity for locals as India is a source of bafflement for us. We were magnets for street hawkers and auto rickshaw drivers, and even had a regular run in with our hotel. Although we had booked a room for 495 rupees only three days before arriving at Hotel Ranjeet, the guy at the front desk was now telling us the rooms had gone up to 750.

I asked whether they had just changed the prices.

His answer: ‘No, yes’.

It was 10pm, we had spent over 13 hours on a train and so I felt justified in replying, ‘No, yes, no, yes, no, yes, this is bullshit’.

We soon found a smaller hotel just opposite called Hotel Manjeet, which was a little more modest. They assure me it has 24-hour hot water. We check in. I turn on the shower. No hot water. I call reception.

“The hot water is turned off Ma’am, it won’t come on until 5am.”

I have a horrendous head cold and I plug tissues up my nose in an attempt to steal some sleep.

It’s ugly and I’m uncomfortable but I’m certain that tomorrow will show the insignificance of my complaints.

Day 2

We are to start our day at Chingari Trust, a charitable organisation established in 2005 to provide proper medical treatment for children of gas survivors or those sick due to drinking contaminated water.

The trust is a 15minute auto rickshaw ride from our hotel. It’s on a dusty, unpaved road where cows lounge around and goats look on, bored. Kids walk pass beaming their pearly whites like they are rehearsing for a Colgate commercial. They chant ‘Hello, yes, no, what is your name’ in a stream of consciousness, without understanding. It’s quiet and peaceful.

The trust runs rehabilitation programs for 171 children – a small number compared to the thousands apparently need help but it’s a start. The rehabilitation clinic is homely and colourful and the kids obviously go through a range of emotions here – from happiness and contentment to pain and fear during physiotherapy.

Aadil Khan, 18, crippled by the effects of cerebral palsy

Mostly the kids we saw here have cerebral palsy. Their bodies have betrayed them. Legs and feet cross over and arms clasp up. The doctors here spend hours each day tenderly trying to strengthen weakened legs and arms through exercises or gently unfurling cramped fingers and toes. It’s heartbreaking seeing the little kids screaming out in pain. The mothers look healthy and unharmed, making their children’s twisted bodies all the more confronting.

Then we spend a lot of time waiting for our next interview. The perils of journalism here is that it’s hard to pin someone down to a meeting at an exact time. Everyone is on Indian time, which is a frustratingly fluid concept.

Finally, a few hours we meet the two women who started Chingari Trust, Rashida Bee and Champadevi Shukla. They continue to suffer from respiratory illnesses and insomnia. Five of Rashida’s family members have died of cancer since the disaster.

Their stories are confronting and painful, but also inspiring. They come from low socio-economic backgrounds. Their dreams and purpose until the disaster probably consisted of looking after their husbands, children and extended family. Now they are taking on governments and multi-national corporations. They won the prestigious Goldmans Environmental prize in 2004 and used the money to create The Chingari Trust.

Day 3

At 7.30am the dust cloud that usually envelops the city due to unsealed roads and hordes of traffic hasn’t arrived yet. It’s peaceful – the roads are relatively empty and the shop’s still have their eyes closed.

We head out to Sambhvana Clinic, which was built in 2005 close to the former Union Carbide site, giving patients in some of the worst affect areas easy access.

There’s a garden where medicinal plants, herbs and flowers grow, used for Aryuvedic medicine. The whole site is powered by solar panels and the compost used in the garden is chemical free and produced on site. This isn’t surprising considering the gas that has effected three generations was due to the toxins produced by Union carbide making pesticide. At the clinic they are trying to prove the world can exist without such chemicals.

A patient receives treatment at the clinic

It’s only 9am, but the waiting areas at the clinic are already packed. Hundreds of people are already here. They treat more than 22,000 patients and see about 170 people per day.

The treatment received here is a mixture of yoga, Ayurveda and modern medicine. They even use leeches, which I’m not so sure about, as it reminds me of the Tudor period in Britian, but according to them it works.

Before clients came to the clinic they reported taking huge quantities of antibiotics, prescribed by Government hospitals and private practioners. According to the doctors at the clinic patients measure this in kilograms, not tablets. Some say they have taken 20 kg of steroids or other powerfully chemical drugs.

The guy behind it all is Satinath Sarangi he came here to offer help after the disaster struck. He was planning to stay for a couple of weeks. Two and a half decades later he now calls it home. He has one major thing in common with the victims and survivors – one moment changed the course of his life entirely. He often thinks about that.

After speaking with Satinath we headed out to two of the most affected colonies – just a stones throw from the abandoned Union Carbide factory.

Here at the slums kids crowd around us, grabbing my hands, touching my hair and laughing. The colony now has drinking water that comes from water tanks supplied by the government but this tank was only installed two years ago, leaving many kids with problems. In summer the tanks often run dry, leaving families to use contaminated water.

Mohd Asgas Rain’s son is four years old. For two years of his life he drunk contaminated water, his muscles in his legs are now weak. His legs look like an orange crammed between two twigs. Mohd Atif can’t run or walk very far, so he can’t go to school.

Nineteen-year-old Rubina Sha Dlo Nanne Sha has feet that bend outwardly at the angles. She walks with difficulty and is in constant pain. She believes it is from drinking contaminated water. She stands near eight, 10 and 12 year old kids, and apart from her face you would think she is the same age.

It seems a cruel irony that the worst affected areas are also the poorest. The kids hold up their only possessions – little chicks and baby goats with pride. Houses are single roomed shacks. If they are lucky they have tin roofs. The compensation paid out has already gone in medicines. Due to illness and death, many families have lost their sole breadwinners, sinking them deeper into poverty.

Kids at the slums

Emit Aziza Khan’s son died one year after the accident, he was only a baby she says. We have a strange moment as I’m taking her photograph, she is talking in Hindi and crying. I talk back in English. We have absolutely no idea what each other but we keep talking. It’s difficult to retain my professionalism. It’s clear she is still mourning the little boy whom she never got the chance to know.

In the afternoon we meet Swaraj Puri the ex head of chief of police here in Bhopal. He still remembers the night of the accident. He says it’s like closing his eyes and having a movie played back to him. His throat clenching up, and feeling needles in his eyes and lungs.

One of the biggest problems he says was the lack of emergency procedures that were put in place by Union Carbide in the event of a disaster. He said the government and police had never once had a conversation with the corporation about what they would do if something like this happened.

After the disaster Union Carbide refused to release information as to the toxins and chemical reactions that were released at the site. It’s a trade secret they say. This has meant that treatment of victims has been hampered for 25 years. He said one of the best antidotes on the day would have been water, but they didn’t know this. Everyone was just trying to help but not knowing how.

Day 4

Today was spent fighting Indian bureaucracy and the perils of wasting time. In India five minutes becomes 30 and then 45, and at the end you can never figure out why there was a delay.

We wanted to see the old Union Carbide factory and take photographs. We had two options – either to bribe a guard on duty or to go to the collector’s office and ask for permission.

So we head to the collectors office to find four middle-aged tubby men amid filing cabinets that have been arranged to look like a defensive wall. The men’s eyes have glazed over from years of diminished neuron activity and under work. After 10 minutes I had a handle on the finely tuned machine of the collectors office.

The first person does most of the work, filling out the documents and organising the letters. The second fetches what the first requests, like staplers and folders for said documents. The third walks from room to room with said doc to get stamped. The fourth provides conversation – the topic of today the cricket match between Australia and India.

Kids play in the shadows of the abandoned Union Carbide factory

So we sit and wait. An hour passes and then we get a sheet of paper granting permission.

When we get to the factory I wondered why we bothered. Locals are walking through the old site, which is supposed to be heavily contaminated, using certain areas to go to the toilet. Little kids play around. Security here clearly isn’t a priority.

The site itself looks like something out of A Little Shop of Horrors. Vines strangle old pipes and weeds stand tall over conquered land. There’s a fowl smell emanating from the old pipes and everything is corroded and rusted. Most of the buildings have been demolished. The guards tell us that after the disaster thieves came into the factory, scavenged metal and sold it in local markets.

The contaminated chemicals are shut up in a large warehouse on site. According to the guards there is talk of turning the old site into a highway.

No full surveys have been taken that give an accurate picture of the full spread of the contamination.

I can’t help but think back at my time at the Village Voice where I reported on the contamination and remediation plans in Sydney Harbour. Even here in an affluent, developed country clean up efforts always fell short due to the enormous costs of remediation. So in Bhopal where the communities are desperately poor, the government is showing little political will, and polluting companies are refusing to take responsibility, I wonder what hope they have.

As Satinath Sarangi  says, “It’s environmental racism. We are lesser people, our skin is not the right colour. It’s very clear.

“Even within the USA. We went on a special toxic tour of the US and we visited 14 states and without single exception, it was the poor and black people and the extremely poor white people, but mostly black people and Hispanic people and Native American people who are getting the load of the toxic waste. All other marginalized people, along the Mississippi a lot of the sex workers, the load paid sex workers live next to the PCP dump. So it’s like almost the levels and extremes of exposure you can always find a correlation with your place on the social power matrix. That is what is happening on a large scale.

“These double standards were the cause of the gas disaster in the first place. And this again is the same cause for the continuance of the contamination problem. I mean Dow clearly has accepted responsibility for damaged caused by UC to asbestos victims in Texas but in this case it says no, we will play American claims but not Indian.”