It’s Thursday afternoon and the NGO CASA’s centre at Bolagarh in the Khurda district of Odisha is packed with people with elephantine legs. They are here because they’ve been told it is an event on lymphatic filariasis (elephantiasis), the disease that has plagued their community for generations. Though fewer people are affected today, it continues to haunt their lives.
Sulochana Behara, 43, from Dhalapathar village, for example, has five healthy daughters for whom she’s having trouble finding grooms because she has elephantiasis. With a couple of people in every other family suffering from the disease, many believe it is hereditary. Things are much better now, says Behara’s friend Neyana, and people don’t hide the sick in dingy straw huts next to cowsheds anymore. But it still works against people like her who want to get their children to wed.
Behara speaks no Hindi, I speak no Oriya. To ensure her story is not lost in translation, she calls one of her daughters who speaks Hindi and English and insists I speak to her. Her daughter tells me she is a schoolteacher and is unmarried at 24, which is considered unacceptable in her community. She laughs it off, but says she has trouble convincing her parents that she will wait for the right man or go it alone. In rural Odisha, 39.5% women get married before the legal age of 18, shows data from the National Family Health Survey-3, so it’s not surprising that Behara is convinced her daughter is well on her way to remain unmarried for life.
Just then a police car with a flashing beacon zooms up followed by another from which a man in shades hops out. To cheer up the gaggle of gloomy ladies, I ask if they knew who he was. They say they don’t. “Abhishek Bachchan,” I say. They don’t know the name. “He’s a famous actor from Mumbai,” I add helpfully. They still shake their heads, they don’t watch Hindi films. I try again, “He is Amitabh Bachchan’s son.” That’s a name they know, and they break into smiles.
They don’t clamour up to talk to him, or get pictures taken with him. They’d rather sit around the strange journalist from the city who wants to know more about them and their lives. They are not used to people asking them about them and what they want.
It’s not just the women who want to be heard. Tannakar Nahaka, 60, summons me to the “men’s section”. This farmer from Saltara village in an inside-out Pierre Cardin shirt informs me that the medicines don’t work. He’s been taking them for two decades, he says, but the swelling hasn’t gone and the leg still hurts. He wants me to tell the government and doctors, he’s convinced they won’t listen to him.
He’s right, the medicines don’t cure the disease. Once the lymphatic system is damaged, there is no cure. What medicines do is stop new infections, but he’s not interested in my explanation. He just wants his complaint to reach the right people.
And that’s what Bachchan Jr is there to do, to become the voice of Behara and Nahaka and the other inhabitants of this little mosquito-infested district outside Bhubaneshwar. A veteran at do-gooding, Bachchan has already worked for HIV awareness¸ girl child, malaria, sanitation and hand-washing. Now he wants to do his bit to tell people about END7, the campaign to neglected disease that will affect 500 million by 2020.
And when he listens, they tell them their troubles.
“We can do a lot of work as celebs to make a difference,” says Bachchan after the interaction. “I just tweeted about it the other day and talked about it on the sets of the film I’m currently working on.”
“There’s a lot of social stigma. I was discussing it with some of the villagers that I met. I found families do not even want to admit that they have a problem,” he says. “The social stigma attached to the disease needs to be tackled and it can only happen through education.”
He’s done his homework. “When I heard the numbers, I was shocked. You just need Rs 30 per person per year to end diseases that infect 1.4 billion people. It’s what you spend on a phone call,” says Bachchan. “I will help to raise the noise around these issues.”
That’s just what neglected diseases need, a voice that will ensure people hear and do something to end them.