Amar was diagnosed with leprosy during the early years of his life and was rejected by his community as a result. From 1989 to 1995 Amar was successfully treated and his experience inspired a fierce desire to advocate for the safe rehabilitation of people affected by leprosy in their families and communities. Amar works as a school principal in Kathmandu, Nepal and plays a big role in IDEA Nepal, a national organisation of persons affected by leprosy.
The Universal Declaration of Human Rights is something that Amar believes will help leprosy affected people gain rights and fight against discrimination, especially in institutional settings.
- Article 21: Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.
- Article 25: Everyone has the right to a standard of living adequate for the health and well- being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
- Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.
What does leprosy mean to you?
For me, leprosy came as a boulder that stopped me on my path. I had to struggle so much that my energy and my will was almost gone. To put this differently, my initial perception of the disease was not so different from what society understood it to be. Later on, my perception changed when I was completely cured. Thus, leprosy is a big thing that shaped my path of life. It has changed the course of my life.
I do not know what I would be doing if I had not been diagnosed with leprosy. For this reason, I have a positive connotation of leprosy and it is the instrument that shaped the course of my life.
Most people are not able to say they have a positive connotation of leprosy. What happened to make you feel that it was a positive experience?
Even today, many people do not want to be exposed to leprosy. But what happened to me because of my education and to some extent I can say financial freedom that helped me to bring the positive vibe or positive connotation regarding leprosy.
Right now, I am a principal of a school and my school is in Kathmandu. I’m running my own school with 400 students and 25 staff. So, people see that a leprosy affected person can have a profound impact in society. They have seen that I have become the principal of our school and I’m holding different posts – on the Advisory Panel of ILEP, on the Board of The Leprosy Mission International – in different organisations. That made people think more positively.
Would a woman have been in a different situation than you?
Of course. Yes, especially in the context of Nepal and India.
Leprosy causes stigma, right? I am in Nepal and Nepal is a male dominated country. Females are, to some extent, dominated by men. So, if the women are affected by leprosy and they are more dominated by men their situation is very different.
You mentioned that there is stigma to leprosy. What does stigma mean to you?
Stigma is that thing that needs to be immediately kept in Pandora’s Box. Stigma in the real world does no good to anyone. Especially the stigma to the people affected by leprosy is sheer nonsense. There is no reason why the people affected by leprosy need to be undervalued or taken as someone who is less.
For me leprosy is a disease as common as headache and toothache in the sense that it is completely curable and a person can remain as normal as earlier once the treatment is carried out in a timely manner.
In this sense stigma is a phenomenon that is a ghost. Some humans are using it for their inhuman attitudes. I have suffered a lot in my life. Therefore, I have learned never to underestimate anybody else. We are raising our voice to regain the lost dignity of people affected by leprosy.
How have you been affected by stigma?
I was compelled to leave my birthplace. I was compelled to leave my school. And I was even forced to sign divorce papers due to the extreme stigma of this disease.
This happened in the past. Now it has a positive connotation for me. When I suffered from leprosy at that time, you know, I never thought my life would be in this position now, right?
Because when I suffered from the disease at the time the stigma and discrimination, it was too much. Later on, with the help of education and financial freedom I was able to change the perception of the community, of society and that helped me to stand in this position now.
Do you think people are changing the way they treat people affected by leprosy?
They are changing but still we need to do a lot more.
We need to create awareness that people affected by leprosy have feelings. They think that leprosy is not a simple disease. We have to change the perception of the community and society. We have to reach them.
How would you suggest that we go about making people aware?
Leprosy affected people like myself and so many other brothers and sisters, we have to come up and reach out to the community. We have to reach out to the wider community with a strong voice that leprosy is a simple disease and we should not be discriminated at any cost.
For example, in Kathmandu, Nepal, I have been running a school. Since I run a school I have to pay the tax. Our government should not treat me as a second class citizen. We should be treated equally.
What are the misconceptions that have affected you?
The misconceptions that affect me the most are people’s belief that leprosy is the result of the past life sins. Another one is that a person who has leprosy can be discriminated against and cannot be integrated into society. These two misconceptions irritate me the most. I have challenged both of these misconceptions. After I got cured people neither believed, at least around me, that it is the result of the past life sin nor that a person is to be isolated. I feel now that I have lived a dignified life, perhaps better than normal people. I do have a life that I call a new normal life.
What does it mean to you to have this new normal life?
It means that now I am not discriminated against. I have regained my lost dignity, I live in the same community, and am integrated with other people.
Our life should be the life of examples, right? What I want to suggest to all of the people affected by leprosy – we need to be the role model so that we reach the wider community with the message that leprosy is a simple disease and we should not be discriminated, at any cost.
Do you think that medical professionals understand leprosy?
Since I am from a remote part of Nepal, the health assistants in my village didn’t understand leprosy so well at the time. They referred me to the city hospitals. After going to many hospitals, one after the other, I was finally sent to the Leprosy Mission Nepal where I was diagnosed with leprosy.
What I can say is that even today medical professionals do not understand leprosy and our situation well enough. They understand, but they do not understand well enough.
Leprosy expertise is declining. The expertise in the field of leprosy should be increased. We also have to provide training because many people, many health professionals, are getting old, they are retiring from their jobs. We have to give trainings to the young generation so that they can develop the expertise themselves.
They [the medical professionals] have some kind of knowledge but they don’t understand the real pain and suffering of the people affected by leprosy.
I think that other medical professionals, not only in leprosy hospitals, should be given basic training on leprosy. In Nepal many health professionals do not have enough knowledge of leprosy. Other medical professionals working in the general hospitals should have training on leprosy so that if patients with leprosy go there, they can also be diagnosed in the hospitals.
What changes have you seen in the last decade that gives you hope?
I think that comparing the last decade, leprosy affected people have come up. The dignity of people affected by leprosy has been raised.
Now we have access, we can go and talk with the government. Before we didn’t have our own organisation. Now, we have the organisations of people affected by leprosy and we can raise our own voice. The voice of the leprosy affected people also can be heard because we go to many doctors, many hospitals, visit government people and they listen to us. A decade ago, it was very difficult.
There has been a change happening and also the Nepal Government is working a lot. Recently we conducted an in-depth review of leprosy in Nepal, with the help of all the stakeholders. But still there is a discriminatory law in Nepal. For example, if I say I am a person affected by leprosy, my wife can give me divorce. The organisation of people affected by leprosy, IDEA Nepal, is working very hard to raise our issues to abolish the discriminatory law.
What I feel, after the treatment is applied to the people affected by leprosy, the next biggest challenge today is the discrimination and their reintegration into society. So, the financial freedom for the people affected by leprosy must be provided so they can have the dignified life. This is the most essential thing I think.
If the world was a perfect place, how do you see things being different for people who will be affected by leprosy tomorrow?
Yeah, I think that we need to give big boost now, right?
We need to give big push now from the medical aspect, and the social aspect and even in the stigma area.
That we all should be free of stigma, free of isolation from all the perspective and angles right and we should we should be able to go ahead.
I just want to add that we are also human like any other citizen of our nations. Respect us like other people in the community. Do not treat us as the second-class citizens of our nation. I just want to convey this message. For the people affected by leprosy around the globe, I just want to convey the message that we have to speak for ourselves. If we do not speak about ourselves who will?
I would like to request to all the people, all my dear friends to come and have a strong voice and raise your voice yourself so that the government, other NGOs and all the community people have to listen to our voice.
**Conversation was edited for publication**