As the country with the fifth highest number of newly diagnosed cases of leprosy, Ethiopia faces a major challenge in improving the lives and livelihood of people affected by the disease. The Ethiopian National Association of Persons Affected by Leprosy (ENAPAL), an organization founded in 1996 and run by affected individuals, has been making notable headway. Former chairwoman of ENAPAL, Birke Nigatu, described the organization’s initiatives during her recent trip to Japan.
No More Need to Beg
Nigatu, who was visiting Japan for the first time, gave talks in Tokyo and Okayama to raise awareness of conditions in Ethiopia. She also visited the National Sanatorium Nagashima-Aiseien in Setouchi, Okayama Prefecture, where she met and spoke with Japanese people affected by leprosy. Upon learning about Japan’s leprosy isolation policy and past conditions in the country, Nigatu said she realized the hardships endured by people whose only “crime” was leprosy were the same, regardless of the country, and felt a strong desire to join hands with others to effect change.
In Ethiopia, like in the many other countries where discrimination and prejudice still exist, many people believe that leprosy is a curse or divine punishment. Individuals affected by leprosy have traditionally been rejected by their family and community members and robbed of the opportunity to get an education and find employment, leaving them with no choice but to beg for a living.
In 1983, an internationally recognized treatment for leprosy called multidrug therapy was introduced. Ironically, though, life for affected individuals became even harder as a result. In response to the sharp decline in the number of patients, the Ethiopian government integrated leprosy control services into the general health care system in the 1990s, and programs for people with leprosy offered under the old setup were axed. Unhappy with the new situation, people began to stand up for their rights and demand an end to discriminatory practices and an improvement in living conditions. In 1994, ENAPAL’s predecessor, the Ethiopian National Association of Ex-Leprosy Patients, was founded. Two years later, it was reorganized as ENAPAL in the wake of the expansion of programs on a national scale.
The administrative costs of ENAPAL are covered partially by dues collected from those who are undergoing treatment or have been cured of the disease. The membership fees are a nominal one or two birr a month (roughly ¥5–10). In addition to negotiating with government agencies and other institutions, ENAPAL organizes programs to raise awareness about leprosy and undertakes a variety of initiatives to promote socioeconomic independence. The organization has grown to include 66 branches in seven regions, covering 80% of Ethiopia. Each branch undertakes activities to meet local needs. The branches have also created a unique program for World Leprosy Day, which falls on the last Sunday of January. The Nippon Foundation and Sasakawa Memorial Health Foundation assist programs to facilitate the economic independence of affected individuals throughout the world. Sasakawa Memorial Health Foundation provides support for ENAPAL since 2001.
The sale of embroidered handicrafts by groups of women is one of the unique initiatives. The hurdles for the women are particularly high, since they face dual discrimination on the basis of gender and medical history. For some of the women, it is their first chance to earn an income on their own. The program was the brainchild of Nigatu, who served as ENAPAL’s second chair.
Nigatu developed symptoms of leprosy when she was six. She was taken to a church and took her to a traditional healer. When she was ten, she went to a hospital of the capital that specializes in leprosy and was diagnosed with the disease. After the treatment, Nigatu was completely cured. However, she could not return home because of her family’s misconceptions about the disease, and instead went to live in a settlement for former patients. She got a job as a housekeeper but left because she faced the risk of sexual assault by her employer. She hit upon the idea of starting a business using the embroidery skills she had learned while in the hospital for leprosy treatment.
The Power of the Work Groups
INTERVIEWER: Why did you choose embroidery as the tool for economic independence?
BIRKE NIGATU: Before, many of the women affected by leprosy didn’t understand working culture. They didn’t expect that they could be good workers and had never worked under someone’s supervision. Instead, they had all relied on begging. The women had to bring their children with them when they went begging, so the children also became accustomed to begging. They created a culture of begging. In order to break this trend, I organized a group of women to work together to earn money that could be used to help themselves and their children.
Formerly, these women lacked knowledge and didn’t know how to support themselves through work. But by bringing together these women, and devoting the necessary time and effort, we have brought about a change in their attitudes to work. Now they realize that through their own efficient work they will be able to earn money and be useful to society.
The reason why I chose embroidery is that embroidery activities are traditional and an important part of Ethiopian culture. Embroidery is popular among women and foreign customers like it as well. Another plus is that it doesn’t require very much capital to get started.
INTERVIEWER: Was it difficult at first to sell the products because of people’s perceptions?
NIGATU: In the beginning, people had a strong prejudice against people affected by leprosy. So they were not willing to come to buy the products. But we were soon able to raise people’s awareness in Ethiopia through information provided by ENAPAL via radio and television broadcasts. We also lobbied ambassadors’ wives and overseas NGOs. Over time, some people began to come, and their numbers gradually increased over time. Now we do not face so much prejudice anymore and are beginning to sell our products everywhere.
When people came to purchase our products, they often asked me: “How does a person get leprosy?” You know, when people are coming to us with these doubts and posing such questions, I reassure them by saying: “Now, you see my hands. I am quite cured. Leprosy can be cured, so don’t worry.” And so I give them leaflets prepared by ENAPAL to read, so they begin to understand more about the disease. Through such dialogue, our customers have been gradually increasing.
INTERVIEWER: So what do you think is the key to success in business for people affected by leprosy ?
NIGATU: Many of the women I’m in contact with have lived in poverty. After the group takes shape, they discover their own potential and can take action in various ways by making use of our organizational strength. With regard to the embroidered goods, ENAPAL teaches the women the necessary skills and provides funds for setting up a business, and they take it from there, earning money and using it to protect their families.
We are also benefiting from help all over the world. We are working with such partners as the Nippon Foundation and Sasakawa Memorial Health Foundation. They are working with us and have helped us to forge our success.
A World Without Leprosy
INTERVIEWER: How do you account for the success of the association so far? Why has it been so sustainable?
NIGATU: One factor is the commitment of our leaders. Because this is a voluntary association, it is represented by the affected people themselves. All of the board members of ENAPAL are persons affected by leprosy, and 50% of ENAPAL workers are family or persons affected by leprosy. In this sense, they are all working for themselves, which is a major factor for success.
All the members pay a membership fee every month. The fee is kept low thanks to the fact that we are a volunteer organization. Since the members do not have much money of their own, the nominal fee is simply a way to formalize their membership and express their connection to the association.
The other factor for our success is that ENAPAL is networking and working with different ministries in Ethiopia, such as the Ministry of Health and the Ministry of Social Affairs. We have a chance to communicate with government officials, and they have also provided us, at no cost, with some land that is necessary to implement our project.
Our close ties with foreign organizations and international institutions have also helped us tremendously. ENAPAL is now a member of the International Association of Persons with Disabilities, which has six categories for membership: deafness, blindness, disability, persons affected with leprosy, and intellectual disabilities. We also work with groups in Ethiopia that advocate for people with hearing, vision, intellectual, and other disabilities.
INTERVIEWER: Please tell us more about the organization’s relationship with the Ethiopian government.
NIGATU: The problems of leprosy-affected persons are multifaceted. They are often struggling with psycho-social issues related to such factors as poverty. Many have physical disabilities. If they lose a pair of shoes, for instance, or have no money to buy shoes, they have no choice but to walk barefoot, which aggravates those parts of their feet affected by the disease. Such problems can worsen their disabilities.
We made constant appeals to the government to find a solution to these problems, but they seemed to want to keep us at a distance. Then, in September 2013, Prime Minister Hailemariam Desalegn attended an international symposium in Addis Ababa, sponsored by the Nippon Foundation, aimed at eliminating discrimination against individuals affected by leprosy. This was the first time for a government official to attend such a gathering, and I viewed it as providing new momentum for us to continue our activities. The participants at the symposium agreed on the need to enhance the organizational strength to solve the problems ENAPAL members face.
INTERVIEWER: Would you like to talk about future plans? Do you see challenges ahead?
NIGATU: The figure of new patients has held steady between 4,000 and 5,000 for the past 20 years. But at ENAPAL we do not necessarily believe these statistics; we anticipate that the actual numbers are higher than that level.
The professionals assigned to the local health centers are not well trained concerning leprosy. So they haven’t been able to identify and diagnose it properly.
For now, we have no real means to reject the statistical figures, so we have to accept them until we conduct our own research. That research requires certain resources as well as official permission. The board of ENAPAL has been working with the government, indicating new areas for government support. We have informed government officials that the number of new cases is actually rising. Whenever we have a minister-level meeting, and meet with higher officials, we inform them of this fact and ask for cooperation.
We are keenly aware of our responsibilities as leaders of people affected by leprosy and seek to ensure that future generations do not have to suffer from leprosy-related discrimination.
INTERVIEWER: What would you like for ENAPAL to do over the next few years? And what is your own dream?
NIGATU: ENAPAL should be a model for other countries’ organizations of people affected by leprosy and for associations of persons with disabilities. We need to share the experience of ENAPAL with others.
Personally, I wish to see a leprosy free society, and for persons affected by leprosy to have the opportunity to receive an education, be self-sufficient, and get involved in different socioeconomic activities.
Nigatu’s Visit to National Sanatorium Nagashima-Aiseien
Birke Nigatu visited Nagashima-Aiseien sanatorium in Setouchi, Okayama Prefecture, on November 8. She saw a display of pottery, paintings, haiku and poems, and other works of art created by the residents, and toured historical buildings on the grounds, which local residents are seeking to make a candidate site for the UNESCO's World Heritage list. Nagashima-Aiseien sanatorium, founded in 1930, is Japan’s oldest leprosarium. At its peak, the number of residents stood at more than 2,000, but today just about 250 remain. The average age is over 80.
“Seeing the beautiful works of art created by the residents of the settlement gave me a great sense of joy,” Nigatu recalled. “This visit will be one of my life’s treasures. The campaign to make this island a World Heritage site represents a great chance to restore the dignity of people affected by leprosy and can serve as a new pillar supporting the efforts to solve problems associated with leprosy in countries around the world.”
The following day, on November 9, Nigatu visited the city of Okayama to attend an international symposium, titled the “The Tapestry of the World Woven by Leprosy,” and speak about her own experiences and her desire to root out discrimination.
Photographs by Kei Kodera