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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

INTERVIEW: Leading from the Top

India's parliamentarians look to address the age-old stigma of leprosy.


How and why did you become involved in this initiative to tackle leprosy and related human rights issues?

At last year's symposium in Delhi on leprosy and human rights organized by The Nippon Foundation, to which I was invited as chief guest, there were quite a few people affected by leprosy present. As I interacted with them, I felt that we needed to do something at the highest level of democracy, which is the Parliament of India. I felt there could be some laws we need to initiate, and some laws we need to repeal. I thought we must form a forum of parliamentarians. I was fortunate to work with Mother Teresa in Kolkata when I was a young student. When you see something as a young man, it leaves a deep impression.

How did you motivate other parliamentarians to join?

Everywhere in the world, people are looking for an opportunity to be part of something that is good. When they realized I was initiating this forum, everyone wanted to be a part of it. That shows there is a lot of hope and people want to participate and contribute in anything that is done for humanity. All we need is good leadership, and we have been fortunate to get that from Mr. Sasakawa. He goes into the field; he doesn't just sit in an air-conditioned room. I was with him to visit leprosy colonies in Asansol, West Bengal, yesterday and I could see people were so happy by his visit.

How many members make up the parliamentarians forum?

We have 52 members. They are from all parties and all regions of India.

What activities do you have in mind as a forum collectively, and what do you expect parliamentarians to do individually?

The biggest thing is awareness. There is a lot of stigma attached to leprosy. Many people have no idea about the disease. So the first thing is to understand the disease ourselves, acknowledging that we are not experts. We need to have seminars, talk to experts and take their opinion. We need to go to colonies of people affected by leprosy, talk to them, encourage them and tell them they are not alone. We will make sure that they are brought into the mainstream. The minimum a human being needs is dignity. They need to be treated with respect.

You mentioned the possibility of a new law.

It is very important that there is a law that will make discrimination an offence. Let's say someone who has had leprosy wants to go to school and is refused admission. That's wrong. That should be declared illegal. And we need to make sure that laws that infringe human rights are repealed.

What else do you have in mind?

There are human rights societies and human rights commissions, which are government structures. We need to make them participants, because this is a human rights issue. Whenever anything happens in the world that enhances the dignity of human beings, India is always in the forefront. This is the land of Mahatma Gandhi. We need to follow his teachings. He always talked about humanity. Our philosophy in India is humanity.

"This is the land of Mahatma Gandhi. We need to follow his teachings."

Do you see this as a long-term commitment?

I can guarantee you that this is going to be a continuous effort. All the parliamentarians, including the honorable speaker of the Lok Sabha (House of the People) are excited. The chairman of the Rajya Sabha (Council of States), who is the vice president of India, is eager to interact with us and visit colonies of leprosy-affected people. I am very excited by the idea that people affected by leprosy will all be in the mainstream - youngsters will get an education, clean water and above all dignity. These are our own people - our brothers, our sisters, our mothers, our fathers. They cannot be discarded from society. The stigma has to go. In the 21st century, it is just not acceptable.

Profile: Dinesh Trivedi

Dinesh Trivedi is a Member of Parliament from the All India Trinamool Congress Party, representing Barrackpore, West Bengal. He is the former Union Minister for Railways and the former Union Minister of State for Health and Family Welfare. He is the convener of the Forum of Parliamentarians to Free India of Leprosy.