Indian Journal of Medical Ethics

CREATIVE SPACE

Pill popper, breadwinner

Sheela Jaywant

DOI: https://doi.org/10.20529/IJME.2016.051


No one can sleep here in Juhapura. Before dawn one has to go to do one’s business. Back in Naroya, we had sheds with common toilets. Some people had their own toilets, at the corner of the kitchen. Outside, there were stones to step on, and tap water. Here, behind the huts is a stinking nala. In the darkness we women go together for safety.

Ali coughs all the time. I can’t afford the medicines. That day I made kitchdi, but the kerosene got over, so now I buy rotis, onions-chillies and chai. For stitching a pair of pyjamas, Ali gets two haircuts free. And maybe half a dozen bananas. Or a quarter kilo of tomatoes. No one here has money to pay for anything. Got my chappals stitched the other day: I gave six plastic bangles for it. Good, thick ones they were. But …at least we are alive. Ammi and the boys are unhurt. We were among the first to come to this camp after the riots. Many were killed that day. The smells, the sounds, I was reminded of them when I saw the pictures on TV. They showed them over and over again for many days.

When I think of that day, I feel like going to the toilet. My inside churns. Some say the Hindus did it, some say our own people, some say the government. I don’t know. I don’t care. I have to get one fistful of rice to make Ali’s kaanji.

I remember: Shajiben was pregnant. They sliced her. We ran; and came here to live. What have we done to deserve this? There’s nothing to eat. The water…can’t complain, at least we get water.

I’m not crying. But I’m not used to this hunger and dirt. My Ali, in the main Ahmedabad bazaar, used to earn almost two hundred rupees every day.

“I want to throw myself under a train, I am fed up,” I said to Soonubai one day.

She said: “Wait, I’ve heard Shabana is earning money. I’m going to ask her. Not less, eight thousand.”

“Eight thousand? How?” I asked. She didn’t know.

We both went to Shabana and with her we went to the white building near the Sabji Mandi.

The Madam in that office was very business-like and spoke English.

“Sign here,” she said in Gujarati and gave me a form.

“I can’t write,” I told her.

“Here,” she pushed an inkpad towards me, “put your thumb right here.”

“What is this paper?” I asked her. In camp, we had put our thumbs on many papers, but someone always read out what was written.

“Nothing,” she said, “just that you have agreed.”

“Agreed to what?”

She seemed irritated: “You have agreed to take these pills; it’s a new medicine, not yet available in the market. These medicines, some are for treatment against malaria, chikungunya, even HIV.”

All of these diseases were there in Naroya. The radio talked about them: wear condoms; if you have fever, toilet-trouble, go to the health centre.

She said: “These pills might make you vomit, or might give joint pains, but that’s not important. For putting your thumb on the paper, I will give you eight thousand rupees.”

I was scared to put my thumb.

I had not told Ali where I was going. Ammi would be angry if she knew. All the way back to Juhapura I wondered what I was going to tell them.

Madam had said: “When you take the pills, for one or two nights, you will have to stay in…. (I learnt the name correctly afterwards) the Universal Clinical Research Centre.”

At home, I faced hell.

“You went alone? We are decent people…”

“I went with Soonubai and Shabana. Fatima and Maryam were also there.”

“No woman in our house earns money or goes out, understand?”

“It’s eight thousand rupees. Not less.”

That worked. The anger cooled down. Ammi and Ali discussed it.

Ammi: “Let her go.”

Ali: “My wife mustn’t work.”

Ammi: “Women everywhere are working.”

They fought, agreed, fought again; at last they told me I could do whatever I wanted. After an uncomfortable silence for two days, they started talking to me again. So I knew I could go back to the centre.

Ammi on her own said, “Ok, go.”

In the office, Madam, said, “Not eight thousand, six thousand.” Because she had already got some others. Quickly I put my thumb on the paper before she brought the price down further.

She said, “We will give you pills, and we will take your blood. Only a little bit.”

“Will it pain?” I asked.

“No,” she said.

Some of the others there were from our camp.

“Does it hurt?” I asked them. They said they hadn’t given blood yet. Not even taken the pills.

Madam interrupted: “You will start next week, all of you.”

I sat down with the women on the chatai. Gauriben, Shailaben, Surekha, Ayodhya…they lived in the Hindu camp nearby. We got talking. There was no food to eat in their village; they had come to Ahmedabad to work on a building site, to carry sand. But still, the money was less. This was so much easier, just a pill to swallow.

They said, “Everytime we come here, we get samosa and chai.” Some of their husbands also did this “work”.

“Work?” I asked.

“If it brings money, it’s work,” one woman said. “Money is money. Decent place, too. No one is doing anything wrong.”

“When they take blood, does it hurt?” I asked again.

They said: “See Badriya and Fauzia? They’re sisters. They’ve been doing this work for three years. Nothing has happened to them. No reason for worry.”

I also met Champa and Chameli, who earned some extra money by bringing others to join. Commission type.

“I can do that,” I thought. “Ask others from my camp to come; money is money.”

I started taking the pills. One was for asthma cure. They told me I might get headaches. Nothing happened. Once, when we came for our check-up, one woman had come full of rash. Her hands were trembling. She was taken out of the “trial”. That’s what they call this work. Trial. And the pills are called drugs.

“They’re new medicines which are not yet available in the market,” Madam told us.

All of us were happy until Kamlaben’s photo came in the newspaper. Badriya-Fauzia’s photo was also there. It seems that some Mahila (women’s) group told a chaapa (press) reporter that Universal Clinical Research Centre was making bad use of us, that it was treating us like animals, trying out medicines on us like they try on rats and pigs in America.

“Are we fools?” we asked, “Are we stupid? We may be illiterate, but are we unintelligent? You talk about the law. Which law gives us food? God makes food, but expects us to go get it ourselves. He doesn’t cook and put it in our mouths.

Ammi said, “The neighbours are talking.” Ali was angry. Because of the story in the chaapa, the paper, and photos, Kamlaben’s saas threw her out of the house. “You have brought a bad name to the family,” she said. Then Badriya-Fauzia’s uncle beat them up. “Enough,” he said, “No more working.”

The rest of us were scared. We met at the dispensary. “What to do? If we don’t do this work…and it’s only to swallow a pill, not really work… how will we manage? What does that reporter have against us? Why did he write this? We will stick together. Let’s fight the chaapa.”

Many people came to our camp to ask questions: we told them the truth.

“We have nothing to hide. We go to the centre in the evening, whenever we are called. They take our blood. Very little, in a small glass tube, and it doesn’t hurt. We don’t feel weak or anything. We stay the night there, we get food. In the morning, we take the pills… once a week, sometimes once in fifteen days, sometimes once in twenty days, depends. We take our money and go home. No, nothing has happened to us.”

“What if something happens?” one asked.

“Why should we think about it? We are not selling kidneys. But tell us, why can’t we sell our kidneys if we want to? It’ll bring food, it’ll bring soap; money is what we want. Forget the law. Today we want money, tomorrow we want money. Who are you chaapa people to stop us?”

They asked whether we (all of us who went to the centre) were healthy people taking pills or sick people taking new medicines.

“Do you know,” they said, “that you take the pills, but the rich people get the benefit?”

“We don’t understand how that might be,” we said, “but don’t you stop our money coming in.” When we all got angry, they stopped asking questions.

Our Madam, at first she was also afraid. When she saw us talking loudly, she stood up. Then she said, “The rich companies from America, when these pills are made properly, will sell the medicines in India and our people will benefit. There will be no TB, no kalaazar.

“What,” one of the chaapa people asked her, “if something goes wrong, and one of these women dies, or gets terribly sick?”

We all kept quiet. Parulben’s son had died. He had HIV, then TB, we had heard. Nobody knew about it till he died. One of the doctors told us, he was given a pill for blood pressure. He got pain in his stomach, his chest, was taken quickly to the centre hospital, but he died. It seems he was taking pills from different centres, different companies, and getting lots of money. It seems they didn’t know he had HIV and he was not supposed to take those medicines. Chaapa people say the company people killed him.

We said: “That was his naseeb. Should we stop working because he died? Why? We all have to die one day; might as well fill our stomachs while we are alive.”

One man said, “The centre people get ten thousand rupees, they give you only six.

“What’s that to you, hanh? You give me nothing. At least the Madam gives me something. You go back to your office. Leave us alone.”

“We’re fighting for you, on your behalf.”

“I can fight my own battles.”

“These people are cheating you.”

“I’m smart, I know who’s cheating me and who is going to stop my money.”

“See,” he said to the other chaapa people, “See how the government wants to keep these people poor.”

I thought, now that the number of women who are earning has become large, these fellows have come. Where were they before? But I kept quiet. They talked a little about committees, lawyers, doctors being involved, then went away.

Two days ago, Shabbo and Sukhram Singh Rathod were taken on rickshaws to the Centre. Their stomachs were very big, full of water, and they couldn’t breathe properly. They were taken to the government hospital, the water was removed, and they were home by evening.

“It was a pill ‘reaction’, nothing to be worried about,” Madam said.

I’m not sure. Another thing happened only this morning. Charuben told Madam she was pregnant. The Madam was very angry.

“How could you?” she shouted.

Charuben is young and her husband, cobbler Shiva, doesn’t drink or get into fights. He was the one who told her to tell. This is their second child.

“Why are you shouting at her?” I asked Madam.

She said, “Now Charuben has to drop out of the trial. She will not get the money. She can’t be given the pill. It might affect the child.”

Charuben started crying and some other women also started to cry. Children in the womb get affected? Handicapped babies are better off dead when you are poor. We can’t give them food,

they can’t earn,… these pills, will they give us handicapped children? What if I were pregnant? What if I got pregnant afterwards?” I asked the Madam that.

She snarled: “How many times do I have to tell you, make sure you don’t get pregnant? … the company doesn’t allow that.”

I asked: “The company that pays will decide whether or not we will get pregnant? Now what will Charuben do?”

“She can drop the baby, she can do what she wants, but she’s out of the trial.” Nobody spoke. It seemed like no one was breathing.

How do I tell Ali all this? I have been telling him everything, what happens at the centre, because I go often. I earn extra money by taking other women with me, you see. For every woman that says yes, I get two hundred.

I put the thaalis down on the floor and my elder one, Salim, said to Ammi, “Tomorrow I am going to the centre.”

“Why?” I asked.

He said, “I’m going to take part in a trial.” Allah, a cold, weak feeling came inside me. No! God knew what those pills contained. They were evil. We were told they would benefit many sick people after they came to the market. Till then, what would happen to healthy people like me? What would happen to sick people? Would they stop taking their regular medicines? Would they be forced to take these new pills? What problems would they create? My mind went blank. Not my children, not my Salim, no. I had sold my health, my body. I had kept starvation away from my door, but I would not allow my flesh and blood to follow that path.

I slapped Salim. “I don’t want to hear that from you,” I said.

Ali hit me for hitting Salim.

“NO,” I shouted.

“Must be the pill,” Ammi said, “That’s making her behave like this. I was saying right from the beginning that this ‘trial’ business was not good.”

I was confused, tired. After dinner I sat in the darkness, hearing the traffic, hearing Ali’s cough, and the children’s even breath. Suddenly, I got an idea. I thought, “Tomorrow when I go to the centre, I am going to ask the Madam why I’m taking those pills. What are they made of? Where do they come from? What happens to us, to me, after five years, ten years? Will they kill me, will they stop me from having babies? When these pills come to the market…. I’m getting my handful of rupees, who will get the big money? No one’s doing anyone a favour here.”

I told her: “I will call the chaapa people back. They know how to ask questions. I know where to find the answers. They will be ready to pay me, too. I will get the money from them. Yessss, I will.”

It isn’t hard to earn money if you put your mind to it.