Q&A with Rachna Kumari

Rachna Kumari works full time at the Lepra Society’s Munger Referral Centre in Bihar, India. She has an advanced diploma in health assistance and nursing and is studying for a bachelor’s degree in sociology. 

Rachna’s goal in life is to help other people with leprosy. She does this every day with rare patience and compassion teaching people how to care for themselves through a set of practices. She is also a key member of the State Forum of leprosy affected people in Bihar, through which she helps raise awareness in leprosy colonies and advocates for their rights to a life of dignity.

Rachna’s work and experiences representing herself as a leprosy affected women from India have led her to defend the Universal Declaration of Human Rights. She refers especially to Articles 16: Men and women of full age, without any limitation due to race, nationality or religion, have the right to marry and to found a family. They are entitled to equal rights as to marriage, during marriage and at its dissolution; and Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

What does leprosy mean to you?

In the medical sense leprosy is a chronic infectious disease caused by Mycobacterium leprae. Outside of medical science, in our community leprosy is the untouchable disease. People are thinking, he had suffered from leprosy, that means that in his past life, you did not do good work, then you receive this disease. Our community is thinking – suppose I had suffered from leprosy, please go, go outside and don’t play with her, and don’t eat with her, and don’t do anything like cooking, playing, reading, anything with her because she suffered from leprosy. I am not touching her. Suppose I am cooking. This is not good because I am cooking, so I touch the food, and prepare the food. So, this food is not good. Those people are thinking, I am eating so this is in contact with me. In our community the meaning of leprosy is abused, it is discrimination, and stigma, and untouchable, and please go out, is thought by many people.

After I was cured, how I see my life at this time, I see that my life is much happier. I am so happy with my family because this time I start a new chapter of my life. I have met one good person, a good man, and I get married to him, then my family is happy, my family is complete. My past is gone, I forget all things. I don’t remember, but sometimes your past moments are repeating in your mind. But now I am happy, so happy.

What does stigma mean to you?

Stigma is a very curable thing in my life, and those people’s lives who suffered from Hansen’s disease. Because any people, suppose like my mother, my father, my neighbour, children – anyone can stigmatise you. At that time the pain is very hurtful because I am not expecting this. These are my family and these are their reactions. Why? Because I suffered from leprosy. These people are thinking, I touch you, I sleep with you, I come with you, I contact this disease. I had suffered from leprosy and at that time I’m always thinking in my mind when I saw anyone, I feel their reaction, their language, their activities, I feel those people are stigmatising me. So that time is very much panic for me, very painful, and very suffering, when they stigmatised me. 

What do you think are the misconceptions that affect you the most?

The misconceptions are that this is the untouchable disease, this is not a curable disease. People think I did bad things and bad work in my past life. No, this is not the fruit of the bad things that happened in the [previous] past birth. In our rural areas, those people are thinking it’s the bad work in the old past life, so she suffers from this disease. People are always thinking this is not a curable disease. Those people are not aware leprosy is curable, not an untouchable disease. This is the main thing, and they are not aware of the medicine. That you go there and take the medicine, free of cost. And some reconstructive surgery is free of cost. People are not aware, not in urban areas, not in rural areas.

Do you think that the medical profession understands leprosy and your situation well enough?

In our community, I saw some doctors are untrained in leprosy. Suppose you transfer into my district and slowly you learn about what leprosy is, and about this work. Then the doctor is transferred to another district. Then again the next doctor is coming and again working and learning, and then, transferred. Some doctors know about leprosy and what is the early detection, so they know what problems these people are facing. But even knowing about everything, the doctor does not touch you. See he’s scared. 

What do you think needs to happen to make this better?

Awareness is really important. I think everybody, every man and woman who reaches the government hospital and private health clinic need to know about leprosy in India. So, we can put some positive images on the wall and then some points are written. 

She is diagnosed early, early detection, and she is much happier. Now she is cured. 

Then what happens is every person going to the government hospital can look at the wall and see the point, and think this is good. So, we are not going to one house at a time and telling that the leprosy is curable. But the wall pictures are saying this to everybody reading the points and looking at this picture. Minds are, I think, changed. Anyone – poor man, rich man, woman, child, younger girl, sister, boy, anyone. I think, some change comes quickly. In our community I saw people are not aware, people are not educated, so the problem is very big.

What is the one thing that needs to be done now?

Not any one thing can change the mind and can change all things. It is important for everyone to know about leprosy so that maybe can change the people’s minds. Awareness is very important. Because without awareness your mind is not changed.

What do you do at Lepra? 

My work is community mobiliser. It is a multi-purpose work. Sometimes I go to the field. Sometimes that means I go to the development officer. Sometimes I go to the Welfare Society. Sometimes I go to the hospital. Sometimes people are coming to my Lepra centre. I am counselling, I talk about the self-care and diagnosis. I love it, because I know what is the pain. Because I suffered from everything, so I want those people to not suffer for these things. I’m happy with my job, my work, because those people are happier. I see their face, and I am so happy. I’m so happy with my job, my work, because I change someone’s life, some other life. So, I am so happy. I had suffered from the stigma and discrimination, all things, economical problem, mental problem, depression, so I don’t want anyone to suffer this. 

There was the time I suffered with the Hansen disease, but now I am the example for all woman and I struggle in my life and struggle with the disease, struggle with the economic condition. Then I achieved this platform and I am here only, not only me, but on behalf of all women, all women’s voice.

**Conversation edited for publication**