Published 08/03/2019

“Leprosy patients are the most marginalised in our society” – A guest blog from Rukmini Rao, LEPRA Society trustee.

I am the managing trustee of LEPRA Society in India and have worked with Lepra for a long time.  I grew up in Delhi, India but at the age of 24 left my family and friends behind to advocate for women’s rights in India.

This International Women’s Day I hope that people will see the amazing work Lepra and LEPRA Society do, and that it proves an inspiration to those wanting to make a difference and empower women around the world.

When I lived in Delhi there were many women being killed by their husbands and families for not bringing a high enough dowry. There were often demonstrations with the hope that legal action would be taken against the murderers, but nothing we did could change what had happened – and what continued to happen. It wasn’t long before I realised that in order to have a decent life, women must be given the opportunity to truly live.
My friends and I set up a crisis centre; a place where women were able to work through any difficulties they faced and stand up for themselves. My motivation was really to help women to survive and get on with their lives. After a decade, I realised that the women in more rural areas were much more vulnerable, as they had less access to information and less money. It is important to note that many new laws had been created because of our activism, but the women in rural areas were unaware of these changes.  Therefore, we had to work to make sure that they were aware of the new laws, and that they could do something on their own behalf.
Through the late 80s and early 90s I was administering the leprosy eradication programmes with the Indian government, and it was through this work that I became overwhelmingly aware of how leprosy patients are the most marginalised in our society. When Lepra invited me to join the board I immediately came forward.Lepra works not just as a health intervention, but also as a social intervention, fighting prejudice so that people are really able to live a life like any other person with any other illness.

It is crucial we emphasise the importance of awareness and early detection, because if we are able to find and define the illness early enough and put the women under treatment, they will be able to go back and lead their lives.

The prejudice and discrimination against those with leprosy can lead to a lot of depression amongst patients; they just want to get away from society. However, we have seen little prejudice among communities where people are aware of, and educated about leprosy.  Just a few years ago, people with leprosy felt so unwanted in society and were forced out of their families, having to live in colonies away from the cities. But today, people with leprosy are living with their own families, but this is only possible in areas where the whole village community is supportive. This illustrates why the work that Lepra and I have done and continue to do is so important; we can already see the change this activism can have on people’s lives.

Following the work I have done for people affected by leprosy, my main effort now, is to really integrate women into mainstream life. There are small grants available to those with disabilities as a result of leprosy; however, our biggest current focus is to help the women advocate for themselves, enabling them to access these financial resources themselves. With the help of this money, they are able to start small businesses and make a life for themselves. We are also accessing funds to help families educate their children, such as scholarships for families where the children or parents are affected by leprosy. It is important to accentuate the holistic approach that we at LEPRA Society take through the identification and treatment of the problem, the self-care and ultimately a way forward to rebuild lives.

Gender equality is a very current issue where leprosy is concerned and I am proud to speak of how Indian women and women across the world are not laying themselves down to say ‘we accept this discrimination’. Women everywhere are fighting back against the discrimination and I think this is amazing.

As for female role models, I have not just one, but many role models, most of whom I have worked with through LEPRA Society.  I have had women come to me and say, “I want to contribute to this cause, I want to do something.” My work has allowed me to appreciate how the very marginalised and poor women are actually those pushing the margins of our society and making it more equal.

Addressing those who would like to help in the fight against leprosy, I ask you to firstly learn about the problem, become a volunteer for Lepra and to share the information you have. To those who can afford it – please donate. I think each one of us can change the world, so we should take that opportunity. All of us together can beat leprosy – so let’s do it!