[財団ブログ ― ハンセン病]
Remembering Mr. Zelelew

The founder of the Ethiopian National Association of Persons Affected by Leprosy, Arega Kassa Zelelew, died recently at the age of 76.
When the leprosy control program in Ethiopia was integrated into the general health services in the 1990s, services available to people affected by leprosy were scaled back. Unhappy with these developments, a group of around 30 people affected by the disease protested to the health ministry and to the labor and social affairs ministry.
In response, they received a good piece of advice: if you are going to raise the issue of leprosy services and policy, and tackle the problem of stigma and discrimination, then become an organized body and speak with a common voice.
This led in 1994 to the formation of an organization of people affected by leprosy in Addis Ababa. One of the central figures was Zelelew, who said at the time, “We shouldn’t limit this movement to Addis Ababa. We have brothers and sisters throughout Ethiopia who face the same problems.” So saying, he traveled the country visiting different settlements of people affected by leprosy, talking with them and urging them to stand up as one.
The result was the founding, in 1996, of the organization now known as the Ethiopian National Association of Persons Affected by Leprosy (ENAPAL).
Dedicated to bringing about an end to stigma, isolation and discrimination, the first thing ENAPAL needed was a charismatic leader – and Zelelew was just the man. Many people were inspired to join the organization after hearing him speak.
After demonstrating his leadership in all kinds of ways, not least by persuading people to get involved, Zelelew withdrew from the frontlines and made way for a new leader in the shape of Birke Nigatu. Under Nigatu and her successor, ENAPAL has continued to grow. It now has over 15,000 dues-paying members and branches in 66 settlements in seven regions of the country. It is the strongest of Ethiopia’s disability groups.
Zelelew left behind a number of memorable statements that have touched the hearts of many people. In 1997, he took part in an exhibition called Quest for Dignity, held at UN headquarters in New York City.
“I have spent my life in segregation, which I believe is a life better than the dead but worse than the living. Today the curtain of segregation is opened up for me. I was given support and confidence which I consider as being reborn.
“I have to go back now to my country and spread the word. We can be free”
(Quote taken from the IDEA publication, The Texture of Our Souls.)
Arega Kassa Zelelew died on November 2, 2013.
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Mr Zelelew (left), photo from the IDEA publication, Freeing Ourselves of Prejudice