Ethiopian Center for Disability and Development
Disability Information Service Center (DISC)

The main objective of the study is to capture reliable and relevant data regarding the social and economic situation, attitude and self esteem of persons affected by leprosy (PALs) and to identify their priorities so that intervention policies and programs will have practical background and a solid base from which to be structured on.  

Brief Description:  

In countries like Ethiopia, where the degree of literacy and economic advancement is the lowest in the world, the existence and prevalence of diseases is inevitable. Of these, leprosy is the oldest but least understood, as limited knowledge amongst the population leads to negative attitudes towards PALs, making them severely segregated, stigmatized and denigrated. By taking this and other current issues into account, a group of  PALs began contemplating change in the existing situation, forming an association to stand firm and address their common problems. This dream was realized with the establishment of the  Ethiopian National Association of Ex-Leprosy Patients (ENAELP)  which received legal recognition by the Ministry of Justice  Proclamation No.138 in 1996 E.C. 

Since its establishment, ENAELP has been trying to minimize the problems faced by PALs in collaboration with the community, the government and NGOs.  The present survey aims to document the socio-economic situation of its members and their needs, alongside the problems to be addressed in order for appropriate intervention.

 

Methodology: 

The study was undertaken in the area surrounding Zenebework, especially in Kebele 14 and 16 of Woreda 23, where the majority of ex-leprosy patients have settled.  To secure as much relevant and reliable information as possible, quantitative and qualitative methods were both employed. Three different quantitative questionnaires were administered to three different groups of respondents, the first of which was aimed at collecting information on general characteristics such as occupation, medical history, grade of disability, prevalent problems and intervention needs, from 600 persons PALs. The second questionnaire was administered to 300 PAL families (themselves non-PALS) to assess and capture data on personal background, occupation, attitude and self-esteem, problems and intervention needs. Finally, the third questionnaire, of similar content to the second, was administered to 300 people who were neither PAL nor PAL families as a control. The PRA method (which involves a number of techniques) was employed to generate qualitative data. Techniques included Focus Group Discussions (FGDs), observation, mapping, ranking and diagrams. More than 24 FGDs were held with groups of 7 to 12 participants, who were representative of PALs and provided in depth knowledge regarding the issues discussed.  

 

Results: 

Most of the PALs (95.5%) were found to be migrants who had come from different parts of the country for leprosy treatment. Due to a lack of appropriate knowledge about the cause and consequences of the disease, society maintains negative attitudes and a derogatory view on those who have contracted leprosy, which is often believed by the PALs themselves. This negative view is manifested by the regular use of derogatory words and expressions in reference to PALs. These old and deep-rooted wrong attitudes and prejudices have made the PALs and their families segregated, stigmatized and socially outcast, increasing their vulnerability to various social, economic and psychological problems. 

Socially, they avoid and are prevented from participating in different social gatherings and festivals with the rest of the community. The majority limit their friendship networks and marriage partners to other PALs and PAL families. 
Economically, the study shows that most PALs live below the poverty line, with most unemployed either due to a lack of opportunities as a result of stigma or an inability to find work that is feasible given their status. Many have no permanent means of livelihood except begging with 27.5% citing begging as the way they earned their living. Psychologically, due to society’s attitudes, most of the PALs do not have positive self esteem and attitudes towards themselves and others.
Many PAL family members have low self-confidence, reporting that they feel uncomfortable establishing friendships with children of non-Pals, narrowing the radius of their social interaction to the immediate community. 

The study showed that the problems - including ulcers, segregation, scarcity of food and infrastructure issues -  surrounding PALs require both short and long term intervention programs.


Recommendations: 

Since society’s negative attitude towards PALs leaves them socially ostracized, stigmatized and belittled, awareness campaigns and advocacy works should be carried out. 

The majority of PALs are living in poor socioeconomic conditions, segregated, unemployed and below the poverty line. To ameliorate the socioeconomic condition of PALs and their families, rehabilitation work should be considered, including regular and up-to-date needs assessments.

Ulcers are a major health problem for PALs, causing and complicating disability. Poor hygiene environments and poverty worsen the issue, especially given that the dwellings are near to the Addis Ababa dumping site, exposing them to several pathogenic diseases. Social problems include insecurity, high numbers of school dropouts and a resultant increase in the idleness of the youth. Due attention should be given to the site, taking into account the above mentioned problems and providing rehabilitation, including health and sanitation education and services for the PALs individually and in groups. 

Women PALs are the most socially and economically disadvantaged, given their gender and disease. They are overburdened and busy with household work and child rearing, and would benefit from family planning and gender education that would reduce or ease their workload. Women with disabilities should be given priority in all socioeconomic rehabilitation projects. 

Charity-based rehabilitation programs are argued not to be preferable, and the report stresses that charity should be given to those within the PAL community who are unable to support themselves or be supported by other available local means. Among them, highly disabled PALs, school dropouts, female headed households and those who support large family size are seen to be the most at risk.  Furthermore, specific policies and programs should be designed so that they can address the needs of PALs. 

PALs face various social, economic and psychological problems beyond the present capacity of ENAELP, which requests to be empowered in terms of annual budgets, manpower and office facility, given its presence as one of the responsible bodies in alleviating the problems.

 

As the CBR approach is advocated for the rehabilitation of persons with disabilities, effective rehabilitation must base itself on those basic concepts and models.  (End of Isolation, 1999: pp43).  ENAELP must also adhere to this as a community based organization (CBO) led by people affected by leprosy themselves.