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**