Reuniting Communities

31 October 2018

Reuniting Communities
Because of this leprosy I have become very popular in my country and around the world

At a special award ceremony held in Addis Ababa in September, two remarkable people were presented with the ninth Wellesley Bailey Awards. Created in 1999 to celebrate the life and work of Mr Wellesley Bailey, founder of The Leprosy Mission, these unique awards honour those who have made extraordinary contributions to society through overcoming the social stigma and physical challenges of leprosy. Award winner Kofi Nyarko, from Ghana, shared with us how he was able to turn leprosy into an opportunity.

Kofi Nyarko

By the age of seven, Kofi Nyarko had lost both of his parents, and was sent to live with an aunt who never welcomed him into the family. He was abused – frequently beaten and sent to bed without food. Three years later, a travelling merchant recognised that Kofi had leprosy, and secretly took him to a leprosy hospital where he was treated. By this time Kofi already had irreversible signs of the disease. Because his aunt did not want to care for him, Kofi moved to a residential centre for children in 1984. During secondary school, Kofi was not accepted by his classmates because he had had leprosy and disabilities resulting from the disease. 

At age 16, Kofi decided he wanted more independence, so he moved out of the residential child care centre to live alone. He moved to Ankaful, a community where people who did not wish to or could not return home after treatment for leprosy lived. He decided that if he finished school, he would help other people in situations similar to his own. Upon graduation, Kofi began teaching children with special needs at St. Elizabeth's Special School in Elimina, Ghana. In 2005 he was promoted to Director. 

KofiKofi was introduced to IDEA through a local NGO in 2000. On his own initiative, he sent a list of 59 people to IDEA International who wanted to be part of IDEA. Two years later, he was appointed IDEA Representative for Ghana, a volunteer position which he has held for the past 16 years. 

In 2003, Kofi initiated a programme to restore people forced to live in separate leprosy communities to their families and homes. Since the programme began, Kofi has helped 861 people return to their home or nearby village. As Kofi's approach has been holistic in educating families and communities, this has proven to be an essential step in overcoming stigma throughout Ghana. Additionally, Kofi’s visits to various villages have attracted national attention. By appearing in a radio broadcast he caught the attention of representatives from the federal government, who have helped promote the education of children affected by leprosy, ensuring that their school fees will be waived so they can attend school. 

Through his work with IDEA, Kofi has travelled internationally, helping to establish new branches and consult with existing branches, as well as exchanging information on reducing stigma and discrimination. He has also testified before the United Nations Human Rights Sub-Commission in Geneva about human rights and leprosy. In September 2013 he was one of the opening speakers at the 18th International Leprosy Congress in Belgium, and the only one who had personally experienced leprosy. Kofi was appointed to ILEP’s first Panel of Women and Men Affected by Leprosy in 2015, where he represents the perspectives of persons who have experienced leprosy at ILEP’s international meetings. He made a presentation on social inclusion at the WHO Global Leprosy Program in Delhi in 2017. 

The relevance of Kofi’s work is now being recognised globally by the NTD community. In 2014 he was invited to represent IDEA at the Bill & Melinda Gates Foundation meeting in Paris, to follow up on the London Declaration on NTDs. The Gates Foundation/Uniting to Combat NTDs filmed Kofi on a journey bringing people back to their community in 2016. The following year he was invited to attend the GET2020 Summit in Switzerland hosted by WHO and the NTD community, where the film was shown.

Kofi has taken the adversity of leprosy and turned it into an opportunity. “Because of this leprosy I have become very popular in my country and around the world,” he says. “With this leprosy I am able to help so many people who have been in leprosy camps to reunite into the society. With this leprosy I was able to be married and have four children.”