December 2, 2014 / 1:42 PM / in 3 years

In Bhopal, two women spark hope for disaster's disabled children

A girl who suffers from hearing and speech disorders reacts to the camera at a rehabilitation centre supported by Bhopal Medical Appeal, for children who were born with mental and physical disabilities, in Bhopal in this November 11, 2014 file photo. REUTERS/Danish Siddiqui/Files

BHOPAL, India (Thomson Reuters Foundation) - Along the corridor of a rudimentary rehabilitation center, women in saris and burkhas sit cross-legged on a red and white tiled floor, rocking children with twisted limbs and clawed fingers in their laps.

The children - ranging from 2 to 12 years old and dressed in grey, white and red checked uniforms - look up wide-eyed, moaning and grunting, unable to speak or move due to illnesses such as cerebral palsy, muscular dystrophy and Down’s syndrome.

    “I’ve been coming here for the last six months. I want my son to be cured and to be able to walk and run like other boys,” said Lakshmi, 40, cradling her 7-year-old son, Vikas, who suffers from muscular dystrophy and speech impairments.

    Vikas and hundreds of children like him are part of a legacy left by one of the world’s worst industrial disasters, activists say, neglected by the state but given hope by a charity set up by two women survivors of the manmade calamity.

    In the early hours of Dec. 3, 1984, a pesticide factory owned by U.S. multinational Union Carbide Corp accidentally leaked toxic cyanide gas in the central Indian city of Bhopal, killing thousands and leaving many more with serious illnesses.

    As survivors of the disaster gather to hold candlelight vigils and protests in a bid to galvanize support for victims on the disaster’s 30th anniversary, the city’s second and third generations of disabled children stand out in their demands.

    “The government and Union Carbide have done little to recognize these children as part of the disaster, so we felt we had to do something,” said Rashida Bee, one of the women who founded the Chingari Rehabilitation Center.

    

    BLARING SIRENS, BURNING EYES

    Bee, 57, met Champa Devi Shukla, 60, through a government-run employment scheme for women survivors in the months following the disaster.

    They slowly became friends, she said, sharing the suffering of their families and memories of that fateful winter night when the factory’s siren blared as they slept in their homes in slum colonies surrounding the factory site.

    “We woke up with our eyes and throats burning. My young son was screaming, ‘Who has burned so many chillies?’ He was gasping and choking at the same time,” said Bee.

    “We had no idea what had happened until our neighbor came and told us to leave because of the gas leak,” she said, noting that she lost six family members to illnesses such as cancer in years after the tragedy.

    Shukla told a similar story, adding that her family fled their home to get a bus out of the city - but there were so many people running and screaming, and no transport available.

    “My husband, who had fallen and hurt himself in the stampede, couldn’t move quickly enough. He told me to take the children and run, but I said, ‘If we are going to die, we will die together,'” Shukla said.

    They survived the immediate disaster, but like Bee, in the years that followed, Shukla lost her husband and three children to cancer. Her granddaughter was born with a cleft palette and mental disorders.

    The two women said they felt a sense of injustice over the lack of rehabilitation given to victims of the disaster, and began a campaign for better support for those suffering the aftermath of the gas leak.

In the beginning, they mobilized about 100 women and walked 730 km (455 miles) to Delhi to protest the lack of livelihood opportunities for women like themselves who had to become breadwinners for their impoverished families after their husbands became ill.

    Over the years, their attention turned to second- and third-generation children with congenital deformities, born to survivors exposed to the gas and to women who have been drinking water contaminated by undisposed toxic waste around the factory.

    However, there has been no long-term epidemiological research to prove conclusively that the birth defects of these children are directly linked to the tragedy three decades ago.

    

    SPARKING HOPE

    In 2004, the two women won the prestigious Goldman Environmental Prize for their activism and donated their $125,000 award to set up the Chingari Rehabilitation Center, whose name means “spark” in Hindi.

    The center cares for 700 children - 200 of whom regularly attend physiotherapy, occupational and speech therapy sessions.

    Located on the ground floor of a run-down apartment block just 500 meters from the now abandoned factory, children roam the bright green-walled corridor of the center, and stare out of the hall’s barred windows onto a playground with swings. 

    In tiny rooms, physiotherapists kneel over children lying on floor mats, slowly bending and stretching their frail, stick-like limbs, as mothers hovering nearby provide soothing words of encouragement.

    “The children have many problems and it is difficult for families to look after these children as most are poor and get little support,” said physiotherapist Sanjay Gour.

    “Here, we at least try to improve their lives and give hope to these children. Many children, such as those with muscular dystrophy, have started walking again after the therapy.”

     U.S. company Dow Chemical, which now owns Union Carbide, has long denied liability, saying it bought the company a decade after Union Carbide had settled its liabilities to the Indian government in 1989 by paying $470 million.

    The government of Madhya Pradesh state, where Bhopal is located, denies these children are linked to the disaster, adding that the Supreme Court decides who are the real beneficiaries for compensation and free health care.

    “Whatever can be done is being done, but we don’t decide, it is the Supreme Court,” said Pravir Krishn, the state’s principal secretary at the department in charge of relief and rehabilitation for Bhopal’s victims.

“As government, we want the sky for the victims, but then there is the law of the land which decides what is the limit of the sky.”

    He said some families seeking compensation and health care for their disabled children were not from contaminated locations.

    The state has provided 40 billion rupees ($650 million) to more than 500,000 people identified by the Supreme Court as being affected by the disaster, built state-of-the art hospitals and provided houses for many survivors.

    But Bee and Shukla say this is insufficient.

    “The government knew that the methyl isocyananate gas could affect two or three generations but gave little support the women exposed to the gas,” said Bee.

    “It looks like it will also affect a fourth generation as we see lot of young children coming here with birth defects 30 years on, so we will continue to fight on behalf of all these children who desperately need our love and attention.”

Reporting by Nita Bhalla, editing by Alisa Tang.

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