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**