It is the face of the Bhopal gas tragedy. The photograph of an unnamed child, barely out of infancy, looking out with an unrelenting gaze upon the world from the soil of a newly dug grave, was taken soon after the gas leak from the Union Carbide factory. It continues to symbolize the incalculable human cost of the world's worst industrial calamity. Today, a full 25 years later, another generation of children, born to parents from the gas-affected, poverty-stricken neighborhoods of the city, continue to bear the footprint of that fateful night when a cloud of deadly methyl isocyanate enshrouded the area.
"We are now witnessing the impact of the Bhopal gas leak on the lives of the second generation of survivors," says Rashida Bi, a gas survivor herself, who along with Champa Devi Shukla, another survivor, has been working tirelessly in the affected neighborhoods almost since that fateful day. Awarded the Goldman Environment Prize in 2004, the two women decided to invest every rupee of the Rs 55,00,000 (US$1= Rs 46.6) that came with the award for the community.
Today, the Chingari Trust they set up together in 2005 runs a rehabilitation and education centre for the disabled children from strictly gas-affected families. Two criteria are used to establish this: Either the families had to be located in colonies that had been exposed to the gas leak or had consumed water contaminated by the toxic residues from the Union Carbide factory premises.
Recalls Champa Devi, "We saw so many cases of handicapped children being born after the gas leak that we knew that this was what we should focus on." A survey was done to identify affected families, but the biggest challenge was to get parents interested in the idea of rehabilitation. They invariably regarded their children as "kissi kaam ka nahin" (of absolutely no worth) and saw little point in the whole exercise. Being poverty stricken - a recent survey of 200 households in some of the worst affected colonies revealed that 73 per cent families had incomes below Rs 1,500 a month - they were also worried about the likely costs involved. Rashida Bi explains, "We told them that we will pay for everything, just send them to us for a month. And that's how it started. Slowly we were able to win their confidence."
Today, Chingari's rehabilitation and education centre has 250 children registered on its rolls, with 70 children attending classes regularly along with their mothers. Says Nirmala Karunan, a social activist associated with the Bhopal struggle for these last 25 years, "It's amazing the impact that Chingari has had on the lives of these children. You just don't feel like leaving these kids. The approach is to treat them as equals, as children who need love, attention, care and education, like any other child. The mothers too have benefited. They leave the isolation of their homes and now feel they are part of a larger community of people like them." The Chennai-based group, Vidya Sagar, designed the curriculum and helped train the teachers.
Visit this modest facility located in the heart of the gas-affected region of Bhopal, and the first thing that strikes you is the energy and commitment behind it. Teachers point to the paintings of clowns and rising suns done by their students with immense pride. The salaries they draw may be paltry but they all feel they are contributing to something of great significance, inspired as they are by two quiet, unobtrusive, hard-working women. As one teacher put it, "If Rashida Appa and Champa Didi can do so much, we can do our bit."
Poonam Bichpuraya, trained in physiotherapy, explains that most of the students here are affected by cerebral palsy. "Their young bodies are stiff because their brains don't cooperate. IQ levels also vary greatly so we try to form batches of children with similar IQ levels and work with them."
Making change happen is a slow, time consuming process with almost 40 minutes having to be spent on each child individually every day. Almost everyone needs speech therapy. Prem Narayan, a trained speech therapist, points out that children with cerebral palsy cannot articulate vowels and suffer from uncontrolled tongue movement and drooling. They need special exercises to work the muscles around the mouth and jaw in order to get the organs associated with speech working.
But once the children learn to express themselves, they just love to do so. "You should see them as I take the attendance roll call. They enjoy it, alerting me to their presence through a sound or a gesture," smiles Usha, another teacher.
Every little milestone reached is cause for celebration. There is Mohammed Faizan's colourful clown smiling down from a wall in one of the classrooms. When he came to Chingari he was just two and half feet tall, with his legs twisted and folded into the lower part of his body. Within eight days of physiotherapy, his limbs had loosened up. Today, Mohammed is a confident little child who is clearly the Picasso of Chingari. The boy who had who never responded to anyone when he first came in, is today never without a smile.
Ten students from the Chingari centre have now joined regular school with special permission to sit for examinations separately and the most recent piece of good news is that two of the children have been selected to participate in the Special Olympics Bharat.
But there are also reverses. Around Diwali, the school lost Apeeksha, a five-year-old severely affected by cerebral palsy, who had been responding very well to therapy. During the holidays, she came down with a fever and died soon after. Says Rashida Bi, "We felt terrible when we heard the news. These children need regular care and exercises. If she had been coming to school, perhaps she would not have died." According to Rashida Bi, discrimination between girls and boys happens even in families like these, "The feeling among many parents is to let the children die, especially if they are girls."
Justice for the survivors of Bhopal has many dimensions - and it includes the recognition that there are helpless, limb-locked, smiling children out there who are paying a terrible price for a disaster that had occurred long before they were born.
While medical personnel have noted the strikingly high incidence of genetic diseases and birth defects in children of gas-affected families, and the fact that the morbidity rate here is nearly 20 per cent as against 5 per cent in the unaffected population, the correlation between the gas leak and genetic abnormalities have never been scientifically established. The one attempt to do this by the Indian Council of Medical Research, the country's premier body for biomedical research, has long been abandoned -- yet another instance of the apathetic and callous governmental response to the tragedy.
In many ways then the work of the Chingari Trust facility is also a battle of memory against forgetting. Champadevi puts it this way, "Despite the great odds, Chingari's children will blossom. That is our conviction. We will continue to motivate parents to send their children to our centre. We will continue to run the centre. And we will also fight for justice for Bhopal."