This is an edited version of a conversation at the Jaipur Literature Festival, 2013, between Kishwar Desai, Jaishree Misra, and Rohini Nilekani, as part of the Rajasthan Patrika Series.
Often, I find myself wishing that the subject of my book, “Stillborn” was not as relevant as it is today. But when we look at the data, unfortunately things have gotten worse since I wrote my novel. At the time, I was a stay-at-home mother and I wasn’t able to do much journalism, but there is a writer in all of us and I felt like this is something I wanted to do. I happened to read an article in the papers that was reporting on people who were not scientists, but were giving women radioactive rotis to see what would happen to them. That story stayed with me, the plot developing from there as I researched more about it. But unlike the blood and gore thrillers that I was reading at the time, the story of Yati and Poorva that emerged was using the garb of the suspense novel to address something more serious. As a journalist and a writer, I felt like the story had to be told in this form.
There have been hundreds of deaths in India due to clinical trials, and very few of them have gotten compensation from the government. This is because there are a lot of powerful agents between the people affected by this and the pharmaceutical sector, which allows them a level of impunity that is shocking. Some of the most recent anti-cancer vaccines were tried out on tribal women, who would not have access to even the most basic form of justice. It’s been 62 years since we have declared India to be a republic, but we still have a long way to go in terms of safeguarding the rights and lives of all our citizens.
As Desai points out through her books as well, Indian women’s bodies are being exploited and experimented on in ways that may seem like science fiction, but are very real. The health sector is growing at a fast pace, while laws around surrogacy and drug trials have yet to catch up. The Drug Controller of India simply does not have enough resources. So while India has become one of the world’s most popular destinations for clinical trials, whether they are happening with the informed consent of the participants is questionable. Participants should be able to know the risks they are facing when they try out a medicine for a drug manufacturer but unfortunately people are not as transparent or upfront about these issues.
With regard to the complicated issue of surrogacy in India where women from lower income families agree to act as surrogates for wealthy couples, often for very little money, discussions about commodification are difficult to tackle. In our culture, wet nurses were not unheard of, yet in a way that is also using a woman’s body and what it produces to nourish someone else’s child. The problem lies when there are complete strangers from around the world who are essentially renting Indian women’s wombs, and whether those women are informed and supported through that experience. So I appreciate Desai’s ability to look at this issue from different viewpoints in her novel.
However, when we look at the drug trials and issues of medical malpractice, we have a more clear-cut situation. In my novel, I based the story on the facts — I wanted to show the Indian farming industry that was growing rapidly at the time, and facing international competition. The question was whether it would sink or swim, and whether it was going to do so by abiding international norms or trample over human rights for the sake of profits. That was the story I was interested in telling. It has been 10 years, but I’m hopeful that robust regulation will come in before long, because the world is watching us now.
While it’s easy to talk about these issues, the more challenging task is to think about some of the solutions that we need to see happen in India. All of us read the newspapers nowadays and we get frustrated and angry about what is happening in the country. But what we have seen happening with the Nirbhaya case for example, is that we have now reached a tipping point where people are beginning to look outside of themselves. Middle class families are thinking about what is going on beyond their class, because it’s clear that it will impact all of us. I can see an increase in people’s empathy, which is crucial if we want to progress as a society. In terms of women’s empowerment, we are taking great strides. No other country in the world has elected one million women to local political power. Slowly but surely, that will result in real change. Women now have a voice on gram sabhas and gram panchayats, and local planning priorities reflect that, with more focus given to health care, education, and access to water.
Data tells us that up to 60 million women have been a part of self-help groups, institutions of empowerment where women can discuss issues and come up with solutions. Together they make their voices heard through collective action. So we can see really positive changes happening in this space, ones that actively empower women and local communities. In addition to this, there are more women entering the workforce, who may not have had access to these jobs 10 years ago. Corporates are ensuring that their policies are progressive and work towards gender equity, because there’s a lot of public pressure for them to do so. It’s not easy, of course, and there are still many hurdles that women face. But things are changing for the better.
We have to keep in mind that regulations and laws are not a silver bullet. Regulation often lags behind innovation, but it is not the only tool we can use to achieve societal change. We also need social and collective action, information and awareness, and empowerment of the people. Alongside empowering women, we have to engage with men and boys if we really want a more equitable society. More spaces need to be created in this country where men can express their hopes and fears without having to succumb to living up to stereotypes of masculinity. Without these avenues to express their feelings, the violent consequences have been well recorded. We have to start having those conversations if we want lasting change.