Written by two International Campaign for Justice in Bhopal (ICJB) volunteers.
On 25 July 2012, the day before the Bhopal Special Olympics, we met several children who would be taking part in the event, and talked to them and their mothers. In the interview extracts that follow, the conversation has been translated from Hindi to English.
Zehra Javed, 5, has cerebral palsy. Because her legs are not strong enough to support her unassisted, Zehra will participate in the Crabwalking event. This involves her sitting on the ground with her legs held up in the air in front of her, using her arms and bottom as three contact points with the ground to move forward. One of us had seen Zehra in action the previous day, during a practice session at the stadium where the Special Olympics will take place. Zehra was by far the fastest of any of the Crabwalkers there. When we met her and her mother, Nusrahi, this was the first thing we pointed out.
ICJB: We think Zehra will win the Crabwalk.
Nusrahi: She is training, and if she tries, she will win.
ICJB: How do you feel about the Olympics?
Nusrahi: Because of Dow my child is suffering. Dow should not be sponsoring the games.
ICJB: How do you feel about the Bhopal Special Olympics?
Nusrahi: Some of the organisations that work with the survivors here organise annual sporting events. These events help them move on in their lives.
Nusrahi explained to us that Zehra started school this summer. Her speech is not very clear, and although Nusrahi, as her mother, can understand what she is trying to say, others sometimes have trouble understanding. Zehra cannot walk unassisted, she has to be carried everywhere, and this is very hard for Nusrahi. With one of the local organisations, Zehra has been receiving physiotherapy and speech therapy for 2 years. As a result her speech has improved, and while earlier she couldn’t walk at all, now she can walk with support. Zehra was born with her conditions because her father was exposed to the gas that came from the Union Carbide factory on the night of 3 December 1984.
Next we met Suraj Pratap Singh, 16, and his mother Kesarbai. Suraj has cerebral palsy with M.R., and all his limbs are too weak for him to propel himself in any way. Consequently his participation in the Bhopal Special Olympics will be in two ways: carrying the “Olympic jhad00 (broom)” in the opening ceremony, and taking part in the Assisted Wheelchair Race, in which he will be pushed in his wheelchair by an assistant. Suraj is unable to speak, so we spoke to Kesarbai.
ICJB: Why are you participating in the Bhopal Special Olympics?
Kesarbai: I feel my child should play games like other kids, but he can’t participate on his own. With help he is able to, and it makes him very happy.
ICJB: Can he communicate at all?
Kesarbai: He has a very unique way of communicating. If he is hungry and hasn’t eaten at the proper time, he cries. If someone is holding a glass and he is thirsty, he makes a sound, and I understand what he wants.
ICJB: How do you feel about Dow sponsoring the Olympics?
Kesarbai: It is quite wrong that such companies are sponsoring the Olympics. Because of them Suraj is like this, his father has breathing difficulties, others have problems too. Instead of sponsoring the Olympics, they should look after the people they have affected in these different ways.
ICJB: There have been so many protests since 1984, what do you hope to gain from participating in this protest?
Kesarbai: Many doctors have said that because of the gas tragedy Suraj is like this. We want to send a message to the world that this is what Dow has done: committed an accident and didn’t take responsibility. We want Dow to take responsibility for such children, and we think the whole world should pressure them to do so.
At this point our interpreter explained that what he had just translated for us was not only Kesarbai’s words, it was a summary of her words combined with those of someone else who was present. He explained that it is hard for Kesarbai to express herself because she is from a conservative society and, as a woman, doesn’t have much opportunity to speak. When this was translated back to her, Kesarbai agreed, noting that she doesn’t go out much except to go to the bus stand and the market.
At this point she told us a bit more about her life with Suraj. She has a lot of difficulties raising him, as he cannot go to a normal school. He gets some education from an NGO that works with survivors. She has to take him to the bathroom every couple of hours, in the hope that he will use the toilet at that point, but sometimes he urinates or passes stool in his clothes. Last month her husband had a paralysis attack which meant that for two weeks he was unable to use his right hand and left leg. Looking after both Suraj and her husband during those two weeks was very hard for her. Fortunately there is a lot of bonhomie between the parents of affected children, partly enabled by the social space afforded by an NGO clinic she attends. The women who come to the clinic help out with the children whose parents are not able to come with them.
When we asked Kesarbai if there was anything else she wanted to say, she repeated that Dow should do something to take responsibility for their actions. She said, “I am sceptical about the government hospitals set up for treatment of gas affected people. People have gone to these hospitals and not come back, lots of them have not been diagnosed properly, and when they are in the hospital they cannot have many visitors. Dow could do something to make treatment for gas affected people better.”
Next we met Kartik Sen, 16, and Sachin, 19. Kartik has cerebral palsy, and is participating in the 25M Assisted Walk event in the Bhopal Special Olympics. Sachin has deformities to the lower limbs (Kyphosis with paraparesis), and is participating in the tricycle race.
Unlike Zehra and Suraj, both these young men can speak – but seemed quite shy talking to us as strangers, and mostly gave very brief responses to our questions. In Kartik’s case this is probably partly due to some difficulties he has with speaking. Our interpreter, who has worked for a year with the gas affected children in one of the NGO clinics, explained that we could not expect to simply come in and expect these children to speak freely with us from the start. “It takes at least a week to break the ice with one of these children and get them to talk, it’s not easy,” he said. “When you first came to me, you may have seen the girl I had sitting in my lap. In the beginning she wouldn’t speak to anyone. Now she is happy with me, so much so that when her parents come she stays with me only. So you can’t expect the children to talk to you freely now.”
When we asked Kartik and Sachin why they are participating in the Bhopal Special Olympics they didn’t say anything. However, Sachin got quite animated when we talked to him about his involvement in sport. Both Kartik and Sachin play bocce, and Sachin plays cricket at state level and has won medals in the past. Our interpreter explained that he bowls and bats from a sitting position, and has someone else to run for him. He dreams of being a professional cricketer, and Indian cricket captain Mahendra Singh Dhoni is his role model. When we ask if the Bhopal Special Olympics are about winning or more about participating, Sachin is unequivocal: “I have come here to win,” he says.
Sachin also tells us about how his condition affects his life. In the past he was able to go to school on his own, using crutches. Now he cannot. He has permanent sores on his legs, and in the rainy season these get worse, opening, weeping and getting infected. He gets tired while moving, and he has lots of involuntary movements in his legs that create problems. In particular, the leg movements mean he can’t sleep properly.
When we asked him to tell us about other things that are important in his life, Sachin told us he has lots of friends – “all the children taking part in the Special Olympics are my friends,” he said. He likes going to school, playing with other children, and visiting places when he can.