WUNRN
By Pamela Philipose
"We are now witnessing the impact
of the
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
Visit this modest facility located in
the heart of the gas-affected region of
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
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
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