Q&A with Amar Bahadur Timalsina

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**

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** 

Q&A with Paula Soares Brandão

Nurse and teacher Paula Soares Brandão discovered she had Hansen’s disease during her last term in nursing at the University in Rio de Janeiro in 2002. At first she felt some numbness on her upper thigh. After several months of inconclusive tests, Paula was diagnosed with indeterminate Hanseniase. In 2009, Paula began her master’s degree, and continued to research Hansen’s disease for several years. In 2015, Paula began a teaching career at the Nursing University of Rio de Janeiro, where she ensures that all of her students are well-educated on Hansen’s disease.

As a supporter and participant in MORHAN (Movimento de Reintegração das Pessoas Atingidas pela Hanseníase) or Movement of Reintegration of Persons Afflicted by Hansen’s disease, Paula has spent more than a decade supporting and advocating to make certain articles of the Declaration of Human Rights are a reality in her work and through MORHAN. Particularly relevant for Paula are Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment and Article 21: Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.

Why don’t you tell me a little bit about yourself.

I am Paula and I was diagnosed when I was 22 years old. I was in the last period of the college of nurses. Now I am a nurse, and I am professor.

What does leprosy mean to you?

I never say leprosy because in Brazil we say Hansen’s disease. Leprosy for us means stigma. Okay, because the word of leprosy is a Biblical name and when you say leprosy or you say leper, you say these people are marginalised people. It’s a not good name.

When I got my diagnosis, the first thing in my mind was, I have leprosy. But ‘I have leprosy’ means bad things will happen. My family will segregate me, my friends will segregate me, my work will segregate me. Then I understood I didn’t have leprosy, I had Hansen’s disease, because the time is different. Leprosy is a historical disease. Hansen’s disease is the current disease, the curable one. I think leprosy is a stigmatised disease. When I think about this and when I fought this, I became very depressed and I become shy and it’s no good. But when I knew the group from MORHAN and other people that have Hansen’s disease, I think it’s not a problem because the disease is curable.

What does this disease mean to you personally?

Hansen’s disease changed my life, because I was one Paula before the disease and I was another Paula after the disease. I now know other people with Hansen’s disease, the social movements, the work, and talking to other people about my experience and why this is important for me. Because I have the possibility to help other people and when people suffer from the stigma or have self-stigma, you need to choose to change this situation. I have the conditions to change the situation because I have a good family and familial support. I have good friends and their support. I have a profession and the support from them. And I think the stigma is a situation society creates. It’s very complicated because for me the worst part of the stigma is the segregation. It’s, for me, the worst because in my conception it’s not possible one person lives alone in life. You need other people, you need to love, you need to care.

When I was sick, I suffered the stigma but it has not affected my life as it has affected life for other people. For example, I have one friend and she didn’t know that I have Hansen’s disease. I visited her house and she said to me and her mom, oh Paula see the spots on my mother? I think this is leprosy. If my mother has leprosy she can’t see my baby (because my friend was pregnant at this time). And when she said this thing, I didn’t have the courage to talk to her about how I was sick, that I had Hansen’s disease.

And not only this, when I took medication I had Hansen’s reaction. And I had treatment for reactions and I changed [because of] the treatment. My skin is very white and there was a change in my colour of skin and everybody asked me, wow, Paula you have beautiful skin. I know that everybody was thinking about this and I said to everybody I was going to the tanning machine.

Another thing, I became fat with the medication. And for me it changed my life because in Brazil the woman needs to be a beautiful woman, I feel. I was so young when I had it, I was 22 years old, and it’s not good for me because the boyfriends, the friends, everybody asks why you are fat. What happened? And, for me, it’s not good.

Did you find that the stigmatisation that you had didn’t come from outside, more it came from within you?

Yes, but I think I had self-stigma only in the first moments. The impact of the diagnosis when the doctor said you have Hansen’s disease. In my mind, I have leprosy in the first moment. But after two days I think, no it’s a curable disease, not a problem.

And then I told my family. My father said for me, daughter it’s better you have Hansen’s disease than you have cancer. Because Hansen’s disease is curable and my father, when he was young, he had tuberculosis. For him, this is not a problem. After my parents, I told only good friends. After that I told my work colleagues.

The health minister in Brazil invited me to record a video in 2006. This video is a story that many people have Hansen’s disease, the life doesn’t stop, and [it has] the stories from women’s and men’s view on having Hansen’s disease. This video was distributed only in my city initially. But the health minister decided to distribute the video for all the country. After this, everybody knows me because of the video. The first time I see the commercial I think, oh my God people they now know about how I was sick. But the people hug me and are careful with me after this.

What misconceptions do you think have affected you most?

I’m very sad when I see people segregating other people. I’m sad. When you have the segregation, I think that it’s possible we change this. We are the people affected by Hansen’s disease but we are the citizens, we are the persons, we have a life, our friends, our family, marriage or a boyfriend/girlfriend, we are human. We are human, not an animal or something, we are a people, only people, and we can only be happy and live our lives.

Do you think that the medical professionals understood Hansen’s disease properly?

Yes, in Brazil. Yes, but it depends on the area in Brazil because we have some places where the diagnosis is later and the professionals have the prejudices with the patients.

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

I feel I have a mission. The people affected by Hansen’s disease in MORHAN and Nepal and other countries, we are special because we have a voice. We bring our voice and we need to show the society, the medical profession and all the society, that what we need is respect of our rights. What we can do, we talk about our problems, our decisions, our rights and we fight for this.

Human rights are affected by the policies, the political attitudes. We are vulnerable people and in many countries, we don’t have the power of governments. We want the right of the voice. And for us this is important because it’s not only me, individual social participation, but social participation for us. Everybody needs to have the same rights. I feel a better world, a better country, a better community and we fight to improve this.

I think women and the children suffer more than other persons, because when you are a woman, your rights depend on the society. In Brazil there is discrimination. You need to fight more for your rights because you needed to fight for education, for healthcare, and you need everyone to fight for you when you are woman.

**Conversation was edited for publication**

Q&A with Kofi Nyarko

Born Jackson Jonathan Nyarko, Kofi was given this nickname, which means ‘born on Friday’ in Twi, a Ghanaian language. He is Headmaster of St. Elizabeth’s Special School in Elimina, Ghana, which provides education for children with special needs. Kofi was diagnosed with leprosy at the age of 10, by which time he had irreversible physical effects from the disease. As a result of being rejected by his classmates, he decided that when he had completed his schooling, he would help other people in situations similar to his. Kofi is a member of the Board of Directors of IDEA, an international organisation of persons affected by leprosy..

Because of his experience of being affected by leprosy and his work within the leprosy community and outside of it, Article 26 of the Universal Declaration of Human Rights is very important to him – Article 26: Everyone has the right to education.

Tell me a little about what leprosy means to you?

In Ghana, leprosy is a disease. It’s just like any other disease. And it’s curable. That is what leprosy means to me.

Do you find that there is a different thought process for leprosy than there are for other diseases?

Years ago, there was, but now here in Ghana it’s just like any other disease. The best difference is when you get it, you go to hospital right away.

What does stigma mean to you?

The stigma is whereby people reject you. But apart from that, when you get leprosy, and people come to you, you do your business, you do your work as normal. You don’t feel that even you have leprosy. But, if people start to reject you, if you want to work with them they refuse, if you want to send your kids, they refuse. There you feel very strong stigma. Apart from that, it is just like normal life.

You don’t find that that leprosy has a different concept in people’s minds?

Some years ago, I did, but from the year 2000 things started changing in Africa, in West Africa, in Ghana. People go to new doctors. They know it is not a curse. At first people thought it was a curse, you see? But we want people to know that it’s bacteria and it is curable. And so, if leprosy is curable, to stop the discrimination.

Why do you think that this is not the case?

You know, the other countries they have leaders and we have the community chiefs. Their opinions matter. If we convince the leaders that leprosy is like any other disease, if these people [people who are leprosy affected] also involve themselves, this stigma and discrimination will go away. And then the inclusion they have to improve, they have to reunite themselves into the society. If you get leprosy or if you had leprosy and you are staying in the leprosy colonies, you are still putting this [stigma] in people’s minds. The moment you go into the society, you will include yourself every time and thereby you are among them, in your community too, you join them. You know most people think men don’t even get leprosy only females do, which is wrong. So many people, I use myself as an example, I set an example and was bullied and then established the first specialised school in my region. This school is helping so many people. So, when you get leprosy or you had leprosy you have to focus even if people will discriminate against you, but keep on trying.

Is there enough education out there?

Yes. You know in West Africa, the chiefs have power. So, when powerful people speak, people listen. If you want to go to a community and educate the community, the first thing you have to do is go to the chiefs, to their palace with a bottle of schnapps. Second, you tell them your mission and then you will listen, and then they will give you a platform to speak.

Do you feel that there are misconceptions?

Yes, people get the wrong information. People get the wrong information like leprosy is not curable.

Have any of these misconceptions affected you?

Yes, at the beginning. At the beginning, but now it’s no more.

Would you would you say that it is your personality and your willingness to talk to everyone that has changed people’s minds in your community?

Yes. Yes, especially in myself. When people saw that I have leprosy, why I’m doing it [talking to everyone about leprosy]. People asked me a lot of questions on leprosy. And then I was treated normal again. That when you get leprosy, that is not the end of your life. You can do everything, and you can cure it right away. And in getting the cure, it’s very important.

What is your advice for other people who have been affected by leprosy but have been stigmatised?

The advice that I would give to these people is, they should not give up. It takes a lot of time and they should not shy away. Any chance you will get, you should talk about it. In the office, in school, in church, any place that you will get the chance to talk because, our independence is important and we have risked this much. I just use this opportunity to speak, any media, any radio station, any television that I will get a chance to go, I will use it to speak. Do not give up and they should include themselves in society. This is the advice that I will give it to them. Inclusion is very important.

How would you suggest that people with leprosy deal with their families?

Some of the families at the beginning thought it not curable. So, they are afraid. They stop talking and taking action in their communities. So now, they need to use themselves as an example to educate their community and be a family. And gradually, gradually, gradually, their kids will understand better.

Do you think that medical professionals understand leprosy well enough?

Some do. Some do, but not 100%. Even I myself have seen them miss in the general hospital. Every few months I get an opportunity to speak to doctors, professors, some are old members, some are new, some come because of money, some come because of their work, so they need more education. They need more education to understand leprosy.

Do you think leprosy needs to be on a general curriculum?

It needs to be general curriculum. And it needs to be added into the syllabus. Because I had this leprosy for 13 years before I was diagnosed. Nobody thought of leprosy. They were checking into other diseases but they did not know about leprosy. This caused me to come out to help people know what the symptoms of leprosy are so that anyone, any person who comes, you see the signs and you refer them to the general hospital.

Tell me about your work to help people that are affected by leprosy.

Most of it is that I am helping people go to everyone in their communities. Asking people where they come from. Getting information and taking it into their families and into their communities. I have been doing this for so many years, since 2003.

What do you hope that people will remember about your story?

A lot of people will remember my story, especially when they saw I was travelling to UK. I was looked at upon without trust at first. But gradually, we saw that I have become a star in Ghana, and not in Ghana alone, soon the whole world.

Do you think there is one thing that needs to be done right now?

Yes. The one thing that need to be done right now is inclusion. You do not need to be in leprosy colony, that one will not help you. Being put in a particular place, it makes more stigma and discrimination. We need to go back into society, we have been cured for so many years. We do not need to be in leprosy colony for now, we need to be in society.

My fellows, my friends that are affected or not, we have a lot to do. Because in Ghana, it’s not one year, it’s not two years, it takes time. We go one by one, go door by door, every chance you get, use it to speak. Use yourself as an example, as I have been doing in so many countries. Leprosy is curable, and when you have leprosy, that is not the end of your life. You can also have other chances. We are not people to stay in one place: we are people to come and make change for us . We can also make change for other people. That is my message.

**Conversation was edited for publication**

Q&A with Mathias Duck

Mathias is a person affected by leprosy and is personally and professionally committed to involving persons affected in the fight against leprosy and its stigma. He is from Paraguay and was the Pastor/Chaplain at Hospital Mennonita — a referral hospital for leprosy in Paraguay —from 2010 until 2015. Mathias has worked with children, youth, seniors, men and women with disabilities in different churches and organisations. In October 2010, Mathias was diagnosed with leprosy and completed multi-drug therapy (MDT). In the past few years he has focused more on improving leprosy services by raising the voice and the participation of people affected in decision making and in the delivery of these services. In 2016 he was appointed Chair of ILEP’s Advisory Panel of women and men affected by leprosy

Though he would say that stigma has only occasionally affected him, he views the Declaration of Human Rights as the cornerstone to eliminating stigma from people’s hearts. 

• 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
• Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.
• Article 12: No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks.

What does leprosy mean to you?

Well, very personally, I think it is a disease that I experienced in a limited way nine years ago. But it is still shaping my thinking. I feel very fortunate and blessed that I was treated early. I have no impairment and no visible signs of the disease, which most people affected cannot say about themselves.

Why do you think it takes so long to get treated?

I think that’s probably related to ignorance both of people generally and also the medical community. But this ignorance is also related to the stigma. So, stigma, I think, plays a big part. They have the statistics about people who get treatment and that is on average they were treated the third time they went to see a medical professional. It took that long that they actually found the treatment they needed. So, I don’t know if we have enough statistics from different parts of the world, but I’ve heard that on numerous occasions that people do seek medical treatment or try to find out what’s going on with them, but they don’t find the right help at the right time.

Do you think medical professionals understand leprosy?

I think there are a number who do. Usually it’s people who have been in the field for a longer time. They understand the medical part very well and they are also very skilled in the human part. So, they know how to treat leprosy and the reactions and all of the complications related to it. They also know how to address the stigma in a way that upholds the dignity of the person affected. In that way they are also a role model contributing to the reduction of stigma.

Then I think there are people who might have an appropriate level of the medical knowledge, but their fear is big. We still have doctors or medical professionals such as nurses that work in the leprosy field and do not want to touch patients. We hear that every once in a while. I don’t think I’ve seen it personally, but I hear about it.  Or I’ve heard from the leprosy field and also from the HIV field that in some places medical professionals don’t use gloves ever, and when a person affected by leprosy or a person living with HIV comes they put on two sets of gloves. That’s not only the person affected who feels that. The community sees that and they say – oh, this is something very serious because that person is a medical professional, they know what they’re talking about and they just put on two sets of gloves. It must be something horrible, something very dangerous. This is just an example. I think it goes beyond the knowledge and it comes out of the fear that people have.

Why do you think fear overtakes knowledge?

I’ve been thinking a little bit about this, and I think fear is an emotion. Knowledge can help, but in the end fear has to be overtaken on an emotional level. I’m not an expert on this but I think very often it’s love that can probably be the only thing that overcomes fear. We’ve seen that with families. People have asked me why are you not afraid to go as close to people affected? And I asked them, well, what if it was your mom? They said, well, I would definitely not shy away from my mom no matter what she has. It’s hypothetical but in practice, I think we see it a lot. Love, compassion, empathy can overcome fear. But it has to be paired with knowledge to address it in the right way.

What does stigma mean to you?

I think that I’ve had very little personal experience of stigma. It was mostly indirect. What is interesting in my case is that I was already familiarised with the disease. I had all the knowledge before I was diagnosed. I was actually already giving talks on stigma. I’d seen people being abandoned by their families, ostracised by their communities, losing their jobs, etc. and what was interesting was that when I was diagnosed – I used to say that leprosy is a disease like any other disease and that we should just talk about it normally – but when I was diagnosed it took me about three years to talk freely about it. I was afraid how people would react. I knew that in order to for most people to understand what leprosy is, it takes a while and there’s a lot of nuance to it.

Is there an easy way to reach people?

I don’t know if there’s an easy way but there might be easier ways. I think there are some very natural ways of dealing with what these kinds of issues and again, this we’ve seen in other fields.

Where you have issues and injustices and discrimination and stigma, when you have people who are affected themselves, who are also knowledgeable, who have received some training or have some experience, they talk about their own experience and that has been very helpful. Helpful to the public in general. Or people affected pairing up with medical professionals, explaining and bringing together the medical aspect and the human aspect, which can never be separated. Especially not in leprosy because they go hand-in-hand. That would be my best bet.

What are the misconceptions that affected you most?

Again, I don’t know if I was so much affected as I’ve heard others. What I’ve heard a lot is people saying it’s only people who are dirty, who do not have good hygiene, who have this disease.

Or what I heard here, because I belong to a community of immigrants with European background, that they say I did not know that our people, meaning white people, could have this disease. Which is a misconception and stereotype and racist on another level.

I think what affects me the most is when people still use the “L” word. When people refer to people affected as lepers. That tells me how ingrained that still is because people don’t see an issue with that.

There are still people who don’t know that leprosy still exists and then people don’t know that it’s curable. Sometimes the same people believe those two things. I don’t know how they square that up.

There’s quite a few people believing that it is a punishment from God. Just the day before yesterday, at church, a lady asked me if I was completely cured. It was a great opportunity for a good conversation. I mean, you have to be you and have patience but persistence.

Tell me a little bit about the work that you’re doing around leprosy.

Well, one of the things that I do is with the ILEP Advisory Panel. I coordinate the panel. We advise ILEP on issues of policy and strategy, try to bring in the voices of people affected. And we also try to represent other people and try to make sure that that informs the work of ILEP and its Members.

What issues do you see that need to be dealt with?

Stigma is always the biggest one for people affected. People affected really demand action when it comes to stigma and people affected are also saying that it’s a cross-cutting issue. We probably need some efforts on stigma itself. We need the issue of stigma to inform all the other things we do in leprosy also. So, when we do early detection or when we work with disabilities or any of that, then sometimes stigma is more of an issue than we would like to think.

One of the things that I hear a lot from people affected is that there are often opportunities to say their part but not very often are they offered a place at the table to be part of the decision-making. I think that’s crucial – to have people affected be part of the of the entire process on every level. I’m not saying that we don’t need the other professionals, because we do need them. But the people affected bring a very important aspect to it and they contribute to a more comprehensive and more sustainable programme and to empowered communities and individuals and to stigma reduction.

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

Well, there are many things that probably need to be done right now. From my perspective and what I know and what I concentrate on it’s what I just told you — the work on stigma and making the participation of people affected a main part. If the participation of people affected is approached in the right way, it will not just benefit the work on stigma, it will also help with the work on disabilities and early detection and treatment and adherence to treatment and all of them.

**Conversation was edited for publication**

Q&A with Alice Cruz

Alice Cruz is the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. The Human Rights Council appointed her to lead this mandate on 1 November 2017. Before that Alice worked as External Professor at the Law School of University Andina Simón Bolívar, Ecuador. She has worked with the Brazilian non-profit organisation Movement for the Reintegration of Persons Affected by Hansen disease (MORHAN) and has served as a member of the International Leprosy Association’s Council (2014-2016). Alice has researched and written on the subject of eliminating leprosy and the stigma attached to it since the beginning of her career.

As a Special Rapporteur, Alice’s job is to defend the Universal Declaration of Human Rights. The articles that she speaks to specifically include: 

• 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 12: No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks.
• Article 5: No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

Now that you’ve been in the position as Special Rapporteur for a few years are you starting to see trends emerge?

Well, it’s a bit soon to be seeing trends emerge. During the preparation of the 2019 report with the consultation I made and also the conversations I had with different stakeholders, I saw that people started questioning themselves about the importance of giving more attention to gender differences with regard to discrimination. I think this is an ongoing process. I realised when I started preparing the report that even though people talk about gender discrimination, in practice there are not many strategies for addressing the fact that women suffer more discrimination then men. It’s a bit like conversations on human rights. Many times, these words are employed as a token and without real sensitivity, approach and strategy. So, it was good, the conversation that started with the preparation of the report and the interactive dialogue at the Human Rights Council.

I think the reception of the 2019 report at the Human Rights Council was very good and hopefully the message will pass well. I was hoping that the report could be taken seriously, especially by the leprosy community. We need to develop substantive strategies on how to have a human rights approach accepted around leprosy. So that’s what I’m hoping to see.

Do you find that getting the leprosy community to look through a human rights lens has been hard?

We need to go beyond using human rights as a token. In that sense, yes, because it’s very easy to talk about what you don’t know. I feel that the leprosy community is still not prepared to engage with human rights. The two main traditions in the leprosy community have been charity and the medical approach. Human rights really is a different approach. And so I think that sometimes human rights is mistaken with the charity approach. That’s not very helpful, because the human rights approach is really to acknowledge that a person affected by leprosy must be at the centre of any process. What we really need to do is everything possible to ensure that persons affected enjoy citizenship in equal terms with other persons. Human rights is there at the discourse, but, from my point of view, it is not really yet substantiated in the strategies or approaches, the methods of work. I think we still have a long way to go with regard to having a strong and robust human rights approach to leprosy.

What would this approach look like to you?

The most important step would really be to recognise persons affected by leprosy as subjects of rights. In that sense to bring them into the conversation. I still don’t see that. We have as a model – at UN AIDS – in which there are persons affected on the board of UN AIDS and they have a lot of different strategies at different levels to tackle discrimination. That, for instance, would be something quite important for leprosy.

Again, I think that another problem is that we do not know enough about people affected by leprosy, their profile and their needs. They have very basic needs that need to be fulfilled. Some  organisations on the ground are doing that very well, but it’s still not a State policy. Of course, we need to address the problem of transmission and medical care. But, it would be quite important engage other sectors of governance like work, education, social security in the implementation of a human rights approach to leprosy.

Why do you think that reducing stigma and discrimination is important towards stopping transmission and preventing disabilities?

We must stop looking at discrimination and stigma solely as a social determinant of transmission and physical impairments. It is important to acknowledge that stigma and discrimination are major barriers to wellbeing, to health. But reducing stigma and discrimination should be a goal on its own. In order to really have a very robust human rights approach to leprosy, we need to look at zero stigma and discrimination as something that we must achieve even if there is no transmission, even if there is no physical impairments and disability. Understand that true inclusion cannot only be a means to another end, it must be an end in itself.

But going back to the question, of course discrimination is a major barrier in different ways. We need to keep on looking at stigma as something that makes people hide the disease, avoid the medical services – that happens of course. But discrimination is also what makes people have very few resources to sometimes take the public transportation to go to the health facilities. There is an economic dimension to discrimination that  also needs to be taken into consideration. With regards to persons affected by leprosy it really has a very big impact on their access to health and on prevention.

I think we need to address issues of stigmatisation, such as  harmful traditional beliefs and practices that, as you can see in my report, are still very much alive. We need to do something with regard to that, in terms of effective awareness raising. But we also need to look at the social and economic dimensions that keep persons affected by leprosy excluded from mainstream and with very limited access to the services of the state, like health and education. That is also discrimination.

I think another dimension that is also important is that persons affected by leprosy have limited access to justice, and usually access to justice is very important to ensure that people get to enjoy full citizenship.

What small changes are you looking to see before your next report is due?

I think we’re still at the stage of awareness raising, so I cannot expect more than that at this point. I had been working really hard to raise awareness about leprosy within the Human Rights Council. Hopefully the changes I’m making at the Human Rights Council can have some impact on national governments. Also, I hope that the leprosy community itself engages more and more with human rights.

Do you feel that there has been a shift in the Human Rights Council?

Yes, for sure. When I started leprosy was only seen as a health issue that had no place at the Human Rights Council, that should only be addressed by the World Health Organization. There was a strong opposition to the creation of this mandate because of this. Most states thought this mandate was overlapping with others, such as health and disability and that it just didn’t make any sense to waste resources on a mandate that is dedicated to this.

Now that is not the view of the majority. I was very happy with the feedback I received from Member States and I was even more happy to see that states had made a very positive statement about the importance of developing the human rights approach to leprosy. So, yes, at the Human Rights Council I can say that I am seeing a very positive change.

What would you like to see NGOs working within the leprosy world do?

Well, I would like to see them changing their relationships, not only with persons affected by leprosy, but also with existing organisations of persons affected by leprosy. There are not many, but there are some. The important focus I would like to see is a work relationship between ILEP Members and these organisations. I would like to see ILEP Members regarding these organisations as priority partners. I still don’t see that. I would also like, again, that persons affected by leprosy participate in a structural change towards inclusion and wellbeing. From my point of view consultation is important, but consultation for me is not the same as participation.

When you took on this role, what was the big change the one big thing that you really wanted to see happening?

Well, it is important to see change at the legal level of course. It is important to see all those discriminatory laws eliminated. But more than that would be to see countries create affirmative measures. That would be something that I would be very happy to see. They can be temporary, they don’t need to last forever, but it would be important to try to tackle the historical and systemic disadvantage of persons affected with measures that can guarantee equal opportunities, as well as equal outcomes. So, I would like to see the creation of affirmative measures in important countries for leprosy.

But mostly I would like to see some change in the way people look at leprosy. We need to change the narrative around leprosy. We need to see people affected being acknowledged and respected and included like in any other disease. I am very much aware that I will not get to see that happen while I’m in this role.

What do we do about personal prejudice?

One thing that we know that works very well is the participation of persons affected at the community level, and national level, because the only way of changing personal prejudice is to interact with people that are discriminated. When you get to know the people you discriminate against and you see that that person is more similar to you than different, your prejudice starts to fall apart. So, we need to bring persons affected by leprosy into mainstream society and at all levels of society. That is why participation is very important at health services, at the community level, in awareness raising campaigns and decision-making processes at the national level.

What development or progress are you most excited about?

That’s a hard question for me to address this point, because at this point I’m much more focussed on the different barriers to development or progress. How do we overcome those barriers? I would say that the development that I am more excited about is to see the emergence of new leadership of persons affected by leprosy at the global level. I see a new generation coming up that has a very strong sense of their rights and I’m putting all my hopes on them.

**Conversation was edited for publication**

Q&A with Bill Simmons

Bill Simmons joined American Leprosy Missions in 2010 to bring care and a cure to those affected by leprosy. His focus is on those suffering from curable illnesses like leprosy and the societal persecution that often accompanies these types of diseases. Bill is also Vice President of the ILEP Board of Directors, an advisory board member for the Nippon Foundation’s funding of the WHO Global Leprosy Program, a founding and executive member of the Leprosy Research Initiative and the Chair of the Global Partnership for Zero Leprosy. 

As a leader in the leprosy world, Bill’s job sees him guarding people’s right to health and fighting for equal rights and participation for people affected by leprosy.

Tell me about your relationship with leprosy.

Leprosy for me is a gateway to people. When I think about leprosy or Hansen’s disease I don’t focus solely on the disease. I try to think about it from the perspective of people, and people in communities who face a host of challenges. Leprosy, or Hansen’s disease, is one disease among many, but when I think about leprosy I think about what is it in a community, especially in the impact of the disease that is creating a situation where people are neglected and marginalised.

And that’s actually where my heart is. My desire to see change in the world is centred around people who find themselves suffering from marginalisation and stigma caused by a host of high-morbidity, neglected tropical diseases. Hansen’s disease is foremost among that group in my mind, but just to say that I don’t think of leprosy as only Hansen’s disease. I think of leprosy as those things that lead to tragic outcomes for people in communities because of disease, so, when I think of leprosy, I think of people who are neglected.

I also think that it’s at the heart of what we do — we can fight this bacteria all we want but at the end of the day what we do is about people who are marginalised and who are neglected and are robbed of their dignity as human beings. What we do matters to people and I think it’s important to have taken people into account in our work and to know that we did that. That we can attest to that. That’s the thing I would hope that we can all say. Knowing that we honour the people that we were seeking to serve.

You mentioned stigma, which can ruin lives. But we also want to keep focus on transmission and disability around leprosy. Why do you think it is important to attend to all three?

Well if we’re talking about stigma, I think zero stigma is a wonderful notional aspiration. It is also probably unlikely to ever be truly attained while human beings are still alive. The stigma resides in people’s hearts and is not easy to overcome, but there are things that create stigma that can be overcome that I think we can a hundred percent achieve. I’m talking about achieving a hundred percent equal rights, a hundred percent participation. These are the types of things that are critical for people to have control of their own outcomes, in their lives.

In the United States, I liken this to the Civil Rights Movement. The progress toward equal rights in this country was a long one and yet today we live in a culture where in the US people have equal rights, and they have access to 100% participation, but it hasn’t gotten rid of or eliminated a hundred percent of the stigma or the bias or the racism in people’s hearts. That’s a much longer battle to be fought and one that’s definitely worth fighting.

I think the same thing is true in leprosy, but the place we have to pass through initially, before we can ever dream of eroding stigma over time, is to start with ensuring that people everywhere, who have had Hansen’s disease, have equal rights and equal opportunity for participation in their communities and in their political and governing systems. That is critical. It is one of the first aspects of equality of human rights, and that’s where my hope lies initially. It would be a huge step in eroding stigma around the world, accomplishing those two things.

What about zero transmission and zero disability?

Transmission and disability are obviously two entangled aspects of Hansen’s disease. If we didn’t have new cases, new instances of the disease, the math would say there would be no new disability in leprosy. The question is, can we stop transmission of the disease all together? The answer to that is yes. Yes, we can do that, and it has been done in places around the world already. There are many countries in the world that have no leprosy today because there’s no longer any transmission of the disease, so we know that it is possible to reach zero transmission in countries and that’s been done without the vaccine and without chemoprophylaxis.

Most of the western world today no longer has any transmission of leprosy and that was accomplished without new tools for ending transmission. We know that we can get to zero even without new tools. But we also know that, in places that are highly endemic, to make a radical change, a tool is the best way to change the inevitability of transmission.

I think about the fact that it’s inevitable that at some point leprosy will disappear. But there will be far too many lives impacted and far too many people who will live their entire lives with stigma and disability for us to wait for what’s inevitable.

You talk about hope really clearly. What hopeful trends do you see emerging?

Well, the trends in the technology space are changing so quickly that I think it’s difficult to fully understand what the next 10 or 20 years are going to be like. But it is a hopeful space, because I think that the changes in technology and the rapid application across multiple sectors is going to enable those solutions to reach people who need them the most, in the most cost-effective way. Much more quickly than could have been imagined in the past. One aspect that I think is driving these changes for tools down to people in need is actually the combination of market-based solutions with solutions that reach the underserved and low-impact markets.

I think there are trends, things that are happening around this idea of translational research, which is not a new one. But I think that it’s becoming more central to the way leprosy research is done — exploring the idea of how can we track the time from the lab to the person. On the ground, I think one of the things that’s happening is how people have started to take control of their own situation. And we see, for example in northern India, we see that women are on the front edge of leading change in their community. This gets at the heart of a lot of issues people care about – the rights of women combined with the rights of people with disease. I think we see a change, in that service delivery and programmes that help people will increasingly be programmes that are implemented by women.

What are you looking at that excites you, that makes you get up in the morning?

The same thing that’s been true for the past 10 years, that there are real people that are impacted by the work that we do. Not necessarily that they are impacted directly today, but I know that what we do every day does reach people around the world in some way. That makes it worth getting up every morning, to be a part of that. I do think that we have the opportunity today to be on the edge of radically reducing the incidence of leprosy in our lifetime. I do think that we are on the front end of being able to see the active number of new cases each year being reduced from where it has been to less than 25,000 in the next 20 to 30 years. I think that can happen.

What I am excited about in the sphere of partnerships is that none of that progress will be accomplished without partnerships. When you’re talking about a rare disease like leprosy in the scheme of things, it’s a difficult task to think that we’re going to find a way to get in front of the incidence of leprosy. The opportunity for any partnership, is to find new ways to work differently so that you can speed up the outcomes. To me, that’s the same concept of how do we speed up the inevitable? And I think that’s what partnership and collaboration are about.

Is there one thing that you think is really important that you feel other people are not paying enough attention to?

I think there’s two things. One is I think that with Alice Cruz, the UN Special Rapporteur, the human rights-based focus in leprosy is an angle of attack. I think it is a new way to think about aligning people at a global level around the rights of people affected and the ongoing issues of how people affected by leprosy are treated.

I think that’s important because we’ve talked about stigma and the rights of people affected in many ways for years in this community. But there’s something different about how we’re talking about it from a human rights-based approach and not a medical disease sort of approach. I think that is worth continuing to explore and add fuel to that fire.

I think that if we can continue to galvanise people affected around rights, that continues to infuse them with financial and other support, to facilitate their voice becoming more and more cohesive. I think that’s a great way to move something forward in a new way. Maybe accelerating it in a new way. I certainly think that Alice and her role at the UN helped to raise that point.

The other thing I think people need to be aware of is that in the Neglected Tropical Disease space, for years mass drug administration campaigns have been driving most of the funding and activity around the world. What many people are not aware of is that most of those mass drug administration campaigns have reached or are near to reaching their targets and when that happens both the work of all the organisations that have been engaged and doing that drug administration, as well as the governments funding it, won’t have anything to fund anymore. What happens then? It’s an interesting question around what government funding goes into when there’s no longer an easy solution. I don’t know the answer, but I know that it’s an area that I think is worth paying attention to because in the next two to four years, it’s going to be a radical change in the landscape globally.

**Conversation edited for publication**