Up and Down Life

31 October 2018

Up and Down Life
I feel proud because all the workers are able to make their own living and send their children to school from the income they earn. They lead a dignified life.

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 Birke Nigatu Teka, from Ethiopia, shared with us about her 'up and down life'.

Birke Nigatu Teka

At the age of six, Birke was separated from her brother and sent to live with her grandmother when her parents divorced. After a while she found a patch on her face that no one could identify. Her grandmother washed her with a local herb that was believed to cure many illnesses, but her condition worsened, so they went to the nearby traditional healer, with no effect. Birke’s suffering increased and she began to lose sensation in her hands and feet, which would eventually lead to lasting disabilities.

Birke’s mother was called and took her to hospital, where the doctor diagnosed her with leprosy and informed her mother that the disease could be easily treated. However, her family had difficulty letting go of their existing beliefs about leprosy and Birke had to struggle against their misconceptions and fears. She saved money to attend the clinic at ALERT and secretly took treatment. Due to her condition, however, she had to be admitted in the hospital, where she spent two years and six months. During that time her mother did not visit her regularly because of her fear that leprosy was a curse rather than a curable disease. While Birke was in the hospital she got training in embroidery and some basic reading and writing. 

After her long hospital treatment, Birke returned home, but there she experienced discrimination and violence. She sought an escape, first as a domestic worker, where she suffered further abuse, and then through the social rehabilitation department of ALERT, joining Berhane Taye handicraft working group. She said that joining the group “has been my springboard where I have started my walk of life”. She married her husband Mr. Abate Getahun who was also affected by leprosy. “Thanks to Almighty God now I am the mother of four daughters and two grandsons. I am very proud of my up and down life,” says Birke.

BirkeAfter overcoming many problems in her life, Birke founded the Addis Ababa Women Leprosy Patients Association, 'Ray Ye Setoch Ejesera Buden' in 2001 to help those in the same situation she once was. The working group, which produces local handicrafts, currently comprises 82 permanent workers, predominantly women. Before joining the working group, most were engaged in begging. “I feel proud because all the workers are able to make their own living and send their children to school from the income they earn. They lead a dignified life.”

In order to fight stigma and discrimination against persons affected by leprosy and to speak up for their rights and benefits, Birke joined the Ethiopian National Association of Persons Affected by Leprosy (ENAPAL), where she has served as Vice-Chairperson and Chairperson. She has also served on the Boards of ALERT Hospital, the Federation of Ethiopian National Association of Persons with Disabilities, SALU MERDADAT organisation for People with Disabilities and the District Community Health Committee. For eight years she represented Ethiopia for The Leprosy Mission International. She is also the Chairperson of the Savings and Credit Group in the village, which has 130 members. Thanks to Birke’s advocacy, there has been an improvement in the knowledge about leprosy by the wider public, and the children of persons affected by leprosy are accepted in schools. 

Birke emphasises the need for people affected by leprosy to take an active role in liberating themselves from marginalisation. She believes: “It is the right time to ask the government regarding the fulfilment of our rights”. In 2017, Birke was a finalist in the Uniting to Combat NTDs Women in Focus Inspirational Award.