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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

COLUMN: Onward and Upward

Ethiopia's organization of people affected by leprosy has come a long way.

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Making a difference: ENAPAL toilet project in Ambo

I was born and raised in Addis Ababa at a settlement of people affected by leprosy. It is located next to ALERT, Africa's biggest medical facility for leprosy. My father, like many other people in the settlement, had been severely disabled by the disease.

I didn't truly understand how bad things could be for people affected by leprosy until I was employed by the Ethiopian National Association of Persons Affected by Leprosy (ENAPAL). To help it develop into a nationwide organization, I accompanied its leaders all over the country. We visited remote settlements in the grip of every kind of misfortune. Seeing the abject poverty and the daily struggle to survive, and hearing the stories of rejection and exclusion, I realized my family were relatively fortunate by comparison.

COMMON VOICE

ENAPAL was the last of the major disability organizations in Ethiopia to be founded. It came into being in 1996 on the initiative of some 30 people affected by leprosy who lived in the settlement where I grew up. Following the integration of the leprosy program into the general health service, they had gathered to discuss the decline in services offered by ALERT and the change in the mode of delivery and management. The need for a common voice to address these issues led to the emergence of ENAPAL.

In the beginning there were 17 local branches. Now there are more than 63 branch associations in seven administrative regions, and over 15,000 fee-paying members.

Today, one of ENAPAL's important tasks is to network with leprosy control bodies at all levels of federal and regional government to press for early detection of new cases, treatment of leprosy reaction and physical rehabilitation. Why? Because for over two decades Ethiopia has continued to report the second-highest number of leprosy cases in Africa - around 5,000 annually. Of these, over 1,000 have visible disability and sensory loss, with profound consequences for their quality of life.

In addition to medical issues, there are many other challenges, as I have seen on my travels. These include poverty, illiteracy, low self-esteem, limited or non-existent social services, lack of work, derelict housing and little or no social participation.

Since many of these problems stem from deep-rooted misconceptions about leprosy, working to eliminate stigma is a priority. ENAPAL is committed to awareness raising and reaching out to different sectors of society, making use of print and electronic media and events such as World Leprosy Day to challenge old stereotypes.

Community development and socio-economic rehabilitation are other key tasks. Self-help groups, income-generation activities, savings and credit cooperatives, skills training and educational support are all part of ENAPAL's strategies. Housing projects too are important for building dignity and promoting social integration.

By working with local governments, NGOs and others, ENAPAL is able to get things done. For example, it networked with Ethiopian Electric Power Corp., arranging for it to supply electricity for a water pump for irrigation in a settlement called Addis Hiwot. Elsewhere, in settlements such as Hawasa and Shashemene, where residents had lived in fear of eviction, it reached agreements with the local authorities under which the land was transferred free of charge to the residents. Living conditions have since been transformed.

Although a late starter, ENAPAL is now the strongest of Ethiopia's disability groups.

SOLID BASE

ENAPAL is now the strongest of Ethiopia's disability groups. It has built a solid base and has a committed leadership. Other groups have seen the potential of people affected by leprosy and acceptance has increased.

As it grows, ENAPAL has to work on issues such as human resources development, leadership training and other capacity-building skills. It also needs to maintain and strengthen its relationships with government and other partners.

What ENAPAL has achieved is still small compared to the vastness of the problems, but it is making a difference. After serving the organization for more than 10 of its 16 years, I left ENAPAL in January. I did so confident that its leaders and members have the vision to build on what has been achieved so far.

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AUTHOR: Menberu Adane Yihunie

Menberu Adane Yihunie was a social worker with the Ethiopian National Association of Persons Affected by Leprosy (ENAPAL) from 1999 to 2001 and served as its managing director between 2004 and January 2013.

Making a difference: ENAPAL toilet project in Ambo