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Leprosy is a disease caused by the bacillus Mycobacterium leprae and is curable with treatment. It is one of the most feared and stigmatized diseases the world has ever encountered. This is not primarily due to its burden of pain and physiological effects but for its far-reaching social impacts (stigmatization) manifested through rejection and discrimination, the result of which affects the social, economic, psychological and spiritual wellbeing of leprosy-affected persons and people associated to them.1
Leprosy, through its social stigma, affects all aspects of life including employment opportunities, mobility, finding partners and pursuing marriage relationships and family life.2,3 Getting married and having a family is one of the most challenging issues in the life of leprosy-affected persons for `leprosy stigma' and their descendants for intergenerational effect of `leprosy stigma'. Other communities refrain from having marriage ties with persons affected by leprosy or their families, assuming it to be a hereditary or sexually transmitted disease. Some also assume that families must be cursed to have such a disease and union with them means inviting the wrath of God, and even those who know the scientific nature of the disease refrain from such ties, fearing social pressure. In this regard, the sociological concepts of sickness, including the social perception of the disease, the way we perceive, think about, express and cope with it, play significant roles in the social treatment of leprosy-affected persons, exposing them to lifetime challenges.4
Marriage, one of the oldest and multi-purpose social institutions in human society, is a key pillar that ensures perpetuation of human society and social integration among different groups. Similarly, marriage is one of the most respected and valued institutions in Ethiopian society. It is said that Ethiopian nobility used marital ties with political and social rivals as a means to ensure peace and order in the territories they ruled.
Leprosy is historically endemic in Ethiopia and it is one of the most affected countries in the world. Leprosy-affected people usually face stigmatization and mostly live isolated from villages where non-leprosy communities live.5,6 Beyond common manifestations of discrimination and isolation, there are widely accustomed derogatory discourses in different cultures and languages linking to person affected by leprosy signifying circumstances. For example, in Amharic language (Official language of Ethiopia) when the weather is chilly it is said ``Yezarewes Bird Komata Yasakifal to mean'' today's chill appeals to havesexual intercourse with a leper‟ [to get warmth], and when one makes meddling in issues that doesn't concern him/her, it is said ``Komatan Komata Kalalut Gebiche Lifetfit Maletun Aytewum'' which stands for unless you tell leper a leper, s/he dares to share dish with you‟, to mention some.
The objective of this study is to describe the effect of leprosy stigma on the marriage experiences of former leprosy patients and their descendants, to explore the challenges and problems faced in their marriage relations, and to show how the isolation of leprosy settlements affects the marriage experience of residents.
Methods and materials
Study area
The study was conducted in two leprosy settlements, known as Addis Hiwot and Tesfa Hiwot in Oromia Regional State, Ethiopia. These two settlements were organized in the 1960’s by the then Ministry of Public Health in collaboration with the Swedish Lutheran Mission. The two settlements are located 15 km away from one another and are isolated from other communities. The settlements are characterized by the absence of economic opportunities and public facilities such as secondary schools, forcing descendants to leave the area for their secondary education and employment opportunities.
Study approach and methods
Qualitative methods, approaches and techniques were used to collect, analyze and interpret data. The interpretation followed a thematic approach, focusing on major topics. Issues related to complex human experiences and feelings are suitable for qualitative studies.7 The study applied purposive sampling to identify respondents who are well situated for the objective of the study.
Data collection tools used were focus group discussions (FGD), in-depth interviews, key informant interviews, observations and desk reviews. Data were collected from March 22nd–April 19th, 2013 at the two settlements and from Addis Ababa and Adama, as they are cities where descendants of the community live in large concentration. Four FGD groups, two FGDs for each of the settlements, included 17 leprosy affected person and 16 descendants, above the age of 20, living in the settlements. In-depth interviews involved 15 descendants of the community living away from the settlements, accessed by using snowball sampling technique. Key informant interviews involved four people representing the local leprosy associations and former administrative staff of the settlements.
Findings and discussion
Leprosy stigma and its effect on leprosy-affected people and their families
The information collected indicates that as the symptoms of leprosy appear on any member of the family, families usually fall into deep shock for fear of discrimination and marriage isolation for the other family members, as any siblings will be considered to be potential carriers of the disease. As a result, family members have unfavorable reactions, such as mistreatment, rejection, and forcefully chasing the affected person away. Some have faced tragic measures. One FGD participant furnished this story of one member of the community;
The only son in the family that has six offspring became a victim of leprosy. This brought enormous shame on his parents in the community. He used to live alone in a thatched house. One day his parents conspired to set fire on his home and claim that their son died as a result of fire accident. In the meantime their secret deal was heard by one of his sisters. Then she immediately told the story to him and urged him to leave the home and run away from the area in the dark night. That night he evacuated and his parents burned his home assuming that he was there.
Typically, once affected persons have left the area, neither they themselves nor their relatives want their return, leading to permanent disconnection with families back home. This echoes previous study findings, stating that leprosy distorts family relationships and finally results in isolation.16
Other challenges include exclusion from interacting with community and prohibition from public gatherings, weddings, markets, and public religious ceremonies and even being locked up in empty rooms. Members of neighboring communities also show sharp disapproval and unwelcoming gestures towards victims. One FGD participant (female) shared this experience:
“My family always used to hide me from the community, not to be disgraced by my situation once symptoms and signs of leprosy appeared on my face. Once a wedding party was thrown in our home and many guests were invited. In order to prevent me from being seen by invited guests my father locked me in a place where ‘ye gama kebt’ (horses and donkeys) were kept at night, which is disgraceful treatment in the community.”
According to study participants, restrictions also used to obstruct their right to use different services and access public facilities such as transportation. As a result many of those with deformities travelled on foot from different provinces to get to Addis Ababa. The wider societal reactions view persons affected by leprosy to be incapable, worthless, and unproductive, and death is wished for, rather than living with leprosy. Insults and demeaning expressions are common and even the names used to describe the disease are frightening, for instance, “Talaqu Beshita” stands for the “big disease” or “Kumtina” stands for “amputee”.
Another challenge persons affected by leprosy face is institutional stigmatization including from government bodies. Most respondents believed the establishment of isolated leprosy settlements far away from the cities, particularly from Addis Ababa, is an effort to distance them as they are considered to damage the image of the country. One of the key informants said “the settlement doesn’t seem organized for the rehabilitation of persons affected by leprosy as they are made to engage in activities that are so damaging to the physical condition of rehabilitants; for many have wounds and disabilities”. Employment discrimination is another challenge. Since leprosy-affected people are widely thought to be incapable and others are not willing to work along with them, employers are not willing to give them a job. As a result their participation in the productive sectors and in different public spheres is highly curtailed. They even indicated that in some cases health professionals who are supposed to treat them, refrain because of disgust at their deformities.
Due to all the traumatic experiences they have been through, they seem to accept and shoulder burdens that come to them and lead an impoverished life. This finding is in line with other studies who stated Leprosy stigma affects the psychological functioning of individuals by creating degraded self-esteem, psychiatric morbidity, emotional instability and depression.15,16
Participants of the study said that children of leprosy-affected persons face their first stigmatization experience in the form of labeling from communities located near to the settlement. They are insulted by these groups as ``Yekomata lij'' in Amharic to refer to “child of a leper” and with other derogatory terms. But they face coercive stigmatization as they leave the settlement for secondary and further education and work opportunities. Those identified by others as “descendants of leprosy-affected persons” have gone through severe stigmatization manifested by some form of vilification, humiliation and discrimination. As a result, in many instances they have been forced to leave their jobs, loosen relationships with friends and leave their host communities. Due to this, most of them tend to conceal their background. They disclosed that these circumstances have exposed them to many psychological and social vulnerabilities including loss of confidence and inability to fully tap their potential, as their mind is always preoccupied with worry and limiting interactions with others. Ato Akalu (M, 44) son of affected person disclosed that “I haven’t used my full potential in everything I do. Because at the back of my mind there was a thought that if I am identified, I would be singled out and face damaging gossip and my day-to-day relationships would be impacted. It forces you to develop feeling of inferiority”.
Marriage and the challenges faced by leprosy-affected people
Respondents said that beginning a relationship with someone of the opposite sex and getting into a marital relationship, particularly with spouses from healthy communities, is nearly impossible for former leprosy patients. For most of them, the emotional sufferings they went through at the early stage of the infection and the consequent self-stigmatization makes them avoid thinking of marriage relations.
Getting leprosy often brings existing marriages to an end, even among couples who have children. In this regard, 8 of the 17 FGD participants admitted that their marriage came to an end when they were identified to be affected by leprosy. This happens for fear of contamination on one side and community pressure on the other hand. One of the FGD participants stated that “In my birthplace it is widely thought that marriage is not good for leprosy-affected persons because sexual intercourse worsens the course of the disease.” Even worse, they become a reason for “marriage isolation” of the rest of the family. This is also the reason that forces them to leave their families and home areas. “Let alone being denied the honor to have a marriage, we used to be considered as a threat to the marriage prospects of the rest of the family” says one FGD participant. Apart from communal attitudes and reactions, participants said that the family law of the country used to state that “the occurrence of leprosy is a legal reason to end a marriage”, which is also an institutional prohibition of marriage to a healthy partner. In this regard, one interviewee (M), 73, furnished his story in this way:
“I was born and raised in Gondar. When I was mature enough for marriage I became engaged to a woman. Then my wife and I started to lead a good life. We used to love each other very much. Later in time some nodules (sign of leprosy) appeared on my body, including my face. Then the local community came to suspect that those signs were symptoms of leprosy. I wasn’t worried that much because I thought it will not bring that much effect in my life. In the meantime my wife’s parents heard and came to see me. After seeing my situation her whole family started to exert unbearable pressure on her to leave and run away from me. When she refused to do so, her mother came home and took her away insisting that ‘she didn’t want her lineage to get mixed with leprosy sufferers’.”
Our interviews showed that leprosy is a disease that significantly jeopardizes marital relations of the victim and the marriage prospects of their closest ones. All these circumstances lead the disease to be labeled as “Gabicha Kelkil” literally meaning, “marriage preventer”. These findings are in line with another study indicating that some of the major problems of leprosy-affected people in Indonesia are the difficulty of finding a partner, pursuing a marriage and the problems of maintaining that marriage.3
Marriage practices in Princess Zenebework Leprosarium and study settlements
Princess Zenebework Leprosarium, which later became ALERT in 1965, was established in Addis Ababa in 1932,6 and is one of the earliest leprosy treatment centers in the country. It is where – since the 1940s – many leprosy-affected persons have gathered, having stayed in the surrounding area after completing treatment. It has provided both medical treatment and a refugee at a time of great need to those who flocked to Addis Ababa, including many of the residents of the study area.
Here, despite the chance of meeting their own kind, a regulation that banned marriage/sexual relations among inmates was enacted. Later, however, the anti-marriage regulation was lifted, allowing them to have a partner, which they described as “we were allowed to have partners of our own kind”; many of the residents in the leprosarium and its surroundings took a partner. One interviewee said: “we feel comfortable when we are engaged to a partner of our kind leading a development of marriage culture of confined within our community to evolve through time”.
In general, the situation led to the development of a marriage pattern resembling what is called in sociological terms “endogamy marriage”. Institutional and legal instruments also caused challenges affecting marriage when often leprosy-affected persons were denied the right of marriage and giving birth to children.
After the establishment of the two re-settlement centers, leprosy-affected persons, both couples with and without children and single people, were made to settle in the centers. As evidence from the study indicates, there were no settled communities close to the settlement villages, at that time. Other inhabitants who lived near the settlements were not happy to see the newcomers for fear of contamination. Since they were Muslims and predominantly Afan Oromo Speakers their interaction stalled with new arrivals, who were predominantly Christian and Amharic speakers. Due to these differences and the absence of integration, marriage relations between the two communities remained barred. Apart from this, the strong ties among the new arrivals, reinforced marriage patterns started in the leprosarium, and marriage within their own community became the established marriage practice. This finding echoes the theory of collective representation, which suggests that stigmatized groups understand their devalued status and comply with it, allowing it to develop as a separate subculture over time.10
Marriage experiences of descendants of former leprosy patients
Both leprosy-affected persons and their descendants indicated that, under normal circumstances, most of descendants in the community get engaged with a partner from the settlement, including those who live away. Descendants who live away and have their partner from the settlement, stressed that they feel safe and comfortable for having a partner who has a similar background, after learning lessons from unsuccessful marriages involving a partner from outside. Another source of marriage partners is one with the other leprosy-affected community settlements, particularly the Zenebework community in Addis Ababa, and occasionally from “Kuyerra” settlement camps. On the other hand, a significant number of descendants of former leprosy patients get engaged to a partner from outside communities, because of their life journey, they said.
Marriage within the settlement community and its features
Marriage within the community is the dominant type of marriage experiences but it has challenge because of the small population of the settlement, as it offers limited alternatives of according to one's requirement. As a result, many are compelled to marry with mismatching partners and others remain unmarried for life. This in turn exposes them to tremendous harassment and smears from the community such as: “komo ker” to mean “unmarried for life”, as getting married and having a family is seen as the only goal of life. Those who are divorced and lost their partner also face the challenge of an inability to re-marry. This has exposed many of such people to different inconveniences and psychosocial problems. Others embark on married life at a very late age.
Some of the descendents, who live away and want to have a partner from the community, often have no choice but to rely on family recommendations for an arranged marriage. Families may choose a partner based on their own criteria that might not fit their offspring’s preferences. Getting to know each other and issues of love are not given much priority. Many end up being engaged to a mismatching partner, with differences in age and life aspiration.
Marriage outside of the community and related challenges
Some descendants of the community take partners from healthy communities where they live after finding it difficult to get a partner from their community back home. Others are also pushed by emotions, affection, financial matters, and fear of getting old before having a child, particularly for women. Others still are compelled as a result of conceiving a child from a casual relationship, or in the belief that such an engagement will not be a problem.
Secrecy and disconnection from parents
Often when descendants of leprosy-affected persons marry outside their community, they conceal their background and fabricate stories about their parents and origins. They tell their partners their home village is very far away and hard to reach. Some say that their parents are deceased or that they were raised in an orphanage. One interviewee, the son of an affected person said: “one of the tense and stressful moments in relationships with an outsider partner is the time of informing the one you love that you are a son/daughter of leprosy-affected parents”. According to interviewees, this is mainly the fear of the outcome of disclosure, which has proved to be the cause for many to face separation from their loved ones or the dissolution of the marriage. The son of an affected person said: “I told my wife a very far and totally unrelated location as my place of birth and distorted information about my parents”. Even if the spouse they take accepts their situation, they fear s/he might leak the information to others, which exposes one to the danger of community slur. Sometimes leprosy-related stigmatization even targets those related by marriage to a descendant of leprosy-affected persons. They are ridiculed as “the one dating the descendant of a leper” and become the subject of finger pointing.
Those who have married by hiding their background often face challenges. Links to parents are reduced or even cut off, as hiding oneself requires limiting interaction with parents, and maintaining the relationship poses the risk of being disclosed; their partners nag them to introduce them to their parents-in-law, as marriage involves the union of two families. The disconnection may be worse if the parents have observable deformities.
According to interviewees, a few try to keep the relationship secret. In this regard, those whose parents do not have a visible deformity may bring their parents to visit their partners without telling that they belong to a settlement designated for leprosy-affected people. But in many cases, the spouse with his/her family insists to know and visit the home village of their partner. To avoid such pressure the same interviewee outlined that “I always try [intentionally] to have a poor relationship with my wife’s parents and I don’t want to even see them around, to avoid questions of family reunion or demands for a visit to my home village”. Because of their avoidance of contact with family and other relatives, some get into desperate situations including getting sick, lacking the care and support which could easily be had from home community comrades living nearby.
The most difficult circumstance for those who hide their background is the death of a family member. Mourning is a strictly observed and unavoidable custom in Ethiopia, involving physical attendance. In this case, some manage to go without informing their partners while others, not knowing what to do, inform their partners. Such a situation creates a lot of confusion. In this regard, one married son of a leprosy-affected person shared his sad story this way:
I left the settlement 22 years ago for education. Now I live in Ziway town and married to a woman whom I met 13 years ago from there. And we have got two children. From the very beginning I told her that I am from Gondar and my mother lives there and my father is deceased, though my father was actually alive. She didn’t demand to meet as the place I told her is very far. For that matter, I don’t make discussions about my parents; when the issue is arisen, I will try to get the subject of the discussion changed. As went on, my mother who lives in the settlement camp died and I was summoned for the funeral. But I couldn’t make it because what can I tell to my wife to go there? As a result I failed to attend my mother’s funeral. This is so shameful and when I think about it feel embarrassed. It has also exposed me for gossip and vilifications by members of my home community. I also lost my ‘Idir’ – a benefit that one gets when a family member dies.
Living in fear and insecurity
The marriage relationships of descendants of former leprosy patients to outside partners are always surrounded by fear and a feeling of insecurity. “Even marriages that seemed so peaceful, are prone to be volatile and run into chaos and sometimes to sad endings” says one of the interviewees. Their partners along with their families suspect them of hiding something and mock them “as if they are the son or daughter of a leper, a weaver or a blacksmith”, owing to the refusal to introduce them to parents and relatives.
Descendants of leprosy-affected persons who are married to partners from outside the community, live in a day to day worry, fearing exposure and its repercussions of family disintegration and community slur. Many of the respondents described such marriages as resembling to child’s game of “hide and seek”. The ultimate consequence of keeping one’s identity secret from partners has shown to be failure, and has even led to desperate ending of life. They also suppress themselves and do not argue with their partners in matters they perhaps should. Ato Ababu (40), the descendant of a former leprosy patient who married a healthy partner, supplied his story as follows:
I live in Modjo town, where I married my wife. We have got two children. I haven’t introduced any of my relatives or informed my origins to her. I always act as if I don’t have siblings and relatives. I intentionally avoid any contact with native boys and girls who live in the same town to prevent the possible leak of information, fearing problems in my marriage and discrimination in the community, if exposed. If I hadn’t got children from her, I would have left her long ago to avoid shouldering this unfolding yoke of worry and emotional disturbance.
Marriage isolation and breakdown of relationships
Once the masked background of descendants of former leprosy patients is identified, they are singled out and their chance of getting into a relationship or forming a marriage with an outsider will be at risk. This is due to misconceptions about leprosy transmission. When others recognize the one they are dating is the offspring of people affected by leprosy, they end the relationship immediately. Respondents clearly indicated that people run away from them, partly because of widely held beliefs “that descendants of former leprosy patients are a potential carrier of the disease and will get deformed at some point in time, most probably in their 30s or 40s”. One of interviewed descendants said: “after creating a good relationship and passing good times with them, when you tell them your background they run away immediately as if they encountered something very terrifying”.
As a result, many descendants of leprosy-affected persons have lost their relationships and marriages. Of 8 descendants who had partners from outside, 5 were divorced. Apart from family disintegration and psychological damage to partners and their children, some suffered mental illness after their background was identified. Unprecedented and sad happenings have occurred to descendants and even to their parents following marriage failure. In this regard, one of the interviewees furnished the following tragic incident that occurred to her friend.
One of my friends moved to Bishoftu town with her parents. Though her parents are former leprosy patients, they don’t have visible deformity. As time passed, she started dating a boyfriend from there. Finally, they decided to get married. The date was set for the marriage and preparations began for the marriage party. In the meantime, her boyfriend heard that her parents are former leprosy patients. He immediately terminated his relationship with her. Some days later the disturbing news reached to her family leading her father to commit suicide, blaming it is his condition, which caused his daughter’s relationship to come to an end.
Sometimes because of the harassment they face, descendants of leprosy affected persons themselves give up their marriage relationships. This divorced descendant of former leprosy patients said,
I divorced my husband, who knows my parents and seemed okay about my background initially, until one day he came home drunk and insulted our two daughters repeatedly, saying ‘Ye korata lijoch’ which literally means ‘children of an amputee (leper)’. From the next morning, I left him because in our tradition it is said “Sew Yamawun, bekil Yawetawal” which means ‘when a person gets drunk, he reveals his secret heart’.
Most participants suggested that if marriage is to be contemplated with people from outside the leprosy communities it should be done by being transparent to their would-be partners. As one of leprosy affected person remarked in a FGD and others also agreed: “it is far better to stand with truth and shoulder what has to come”. Due to courtesy stigma, leprosy stigma affects the wellbeing of descendants of leprosy affected people in many ways, especially in their prospects for marriage.2,9 Perception of leprosy as hereditary or sexually transmitted inhibits the integration of descendants through marriage.11,12
Pressure from the third generation on parents
Another challenge encountered by descendants of former leprosy patients is the demands made by their own children i.e. the third generation. Their children make consistent demands to know their grandparents and other relatives. If they take their children to the settlement, they fear that information about what they have seen will spread and expose them. These results in disconnection of these grandchildren from their extended relatives and they feel they are kinless.
Since children do not understand the stigmatization issue and the secrets their parents hide, they talk about the things they have seen. This is a frightening situation for all descendants of the community who live away from the settlement. As Simegn (41) said:
I haven’t told my children that my parents are victims of leprosy and they don’t know each other yet. When I think about it, it disturbs my spirit. But my children are always insisting to meet and visit my parents. If I do that I am afraid that they might spread the information which I still keep as a secret from their father and the neighborhood.
Confusion also occurs on the side of the grandparents on how to interact with their grandchildren when descendants take their children to the settlement area. These Grandparents may try to hide their deformity from their grandchildren and some even pretend they are guests in their own home, to prevent their grandchildren from realizing the truth.
If there is a marriage break up, the children also face both the psychological burden and physiological neglect as most of them are then raised by one parent. In short, the third generation are also victims of the environment created by the stigma of leprosy.
One FGD participant remarked with agony: “we have been punished and went through unbearable circumstances for what we had or were given by God, but our worst resentment is due to the challenges and problems our descendants are facing without being a victim of the disease”.
Isolation and its impact
The two study settlements were organized as part of the expansion from Princess Zenebework Leprosarium, which led to the establishment of many settlements for leprosy affected persons in the 1950s and 1960s GC. The re-settlement was not the result of kindheartedness, rather the result of a cruel intention by the then ruling class to eliminate leprosy-affected people and communities from Addis Ababa, as the city had become a diplomatic hub, including the seat the of OAU. They called the re-settlement operation as “Tsidat”, in Amharic language to mean, “removing lepers” from Addis Ababa streets. It was also meant to contain the disease by preventing their procreation through marrying health communities.
However, 5 of 17 FGD participants found the establishment of separate settlements to be helpful, in that it has enabled them to live without stigma, as they live separately. The other participants opposed this. To them, if they been allowed to intermingle with others, people would tend to accept the situation and tolerate interaction with them to the extent of having marriage ties. They indicated that as Addis Hiwot and Tesfa Hiwot settlements is organized for leprosy affected people, it has come to be identified as “colonies of lepers”. All participants admitted that demographic differences with earlier inhabitants also hindered overall integration and marriage ties.
The isolation, along with absence of meaningful economic opportunities in the settlement, made the community vulnerable socio-economically. The organization which was responsible for running the rehabilitation project has been dissolved by the government in 2004, which left the community without any alternative support system. The cultivable lands belonging to the settlement were taken away by the government and distributed to investors. This has made these very vulnerable community members, who are physically weak because of aging and health problems, suffer from all forms neglect and destitution. One of the FGD respondents said: “balemanew meret ye beyi temelkacochh honenal”, meaning “while newcomers enjoy the product of the land on which we toiled so much to make it suitable for farming, we became onlookers”. To them, the farm based economic rehabilitation went counter to the care needed by people with leprosy, and worsened their disability in practice.
Overall, the isolation of the settlements contributed to the continuation of stigmatization by limiting integration with others, and confined their marriage opportunities to a small community. One of the factors that sustained stigmatization in the 20th century were the governmental laws and regulations that advocated separate settlements.13
Conclusion
Leprosy significantly damages the social, psychological and economic functioning and wellbeing of persons affected, making them face inhuman treatments and discriminations. Their descendants face various challenges and problems mainly when they leave the settlement area for education and work.
The marriage experience of persons affected by leprosy and their descendants is greatly affected by leprosy stigma. Relationships are fragile and marriage prospects for whole families are put at risk. The need to conceal one’s background and maintain secrecy creates a unique set of challenges and problems. They face disconnection with their parents and a married life filled with insecurity and fear. This often results in divorce or termination of a relationship, and the related challenges faced by the next generation.
Recommendations
(1)
Meaningful socio-economic initiatives and activities should be strengthened in the settlement areas to empower community members socially, economically and psychologically, and attract others.
(2)
Organized and consistent behavioral change education and awareness-raising efforts should be strengthened to curb deeply rooted stigmatizations towards leprosy-affected people and their descendants.
(3)
Appropriate life skill training and youth empowerment schemes, should be arranged for descendants of the community to cope with the impact of stigma.
(4)
The researcher strongly recommends future research focusing on identifying factors that restrain healthy communities from having marital relations with descendants of former leprosy patients and the attitude of marriage with leprosy-affected communities. It is also vital to design studies that target strategies that could enhance the integration of leprosy-affected communities with others.
Definition of terms
Courtesy stigma
The stigmatization of members of a family of a person with a stigmatizing trait.14
Descendants of leprosy affected persons
Here used to refer to the offspring of leprosy-affected persons who are not themselves sufferers of leprosy.
Discrimination
Unjustifiably different treatment of people or groups, or any measures entailing a distinction between persons, dependent up on their confirmed or suspected health status.15
Enacted stigma
A situation in which the person or group of people with certain characteristics face the effects of any components of stigma.16
Endogamy
A marriage pattern carried out within one’s own group of ethnic, racial, religious or social class.
Leprosy-affected persons
Used here to refer to a person who was once diagnosed as a patient with leprosy, received treatment, and was cured from the disease as a result of medical intervention, regardless of bodily signs or levels of physical deformities incurred.
Isolation
The state or situation in which a group is excluded from others and forced to live separately.
Labeling
Stereotyping someone or something based upon a specific identifying characteristic.
Leprosy stigma
A societal stigma directed against leprosy-affected persons, regardless of their physiological condition.
Marriage
An emotional and/or legal commitment between people sharing emotional and physical intimacy, various tasks, and economic resources.17
Self-stigma
Stigmatization that occurs when people affected by a stigmatizing condition become ashamed of their condition, resulting from the attitudes of others towards a disease and resulting symptoms. This can be expressed with feelings of fear, shame, low self-esteem and isolation from others.
Stereotype
A belief that all members of a group possess the same characteristics or traits exhibited by some members of that group.15
Stigma
A social process of discrediting that exists when elements of labeling, stereotyping, separation, status loss, and discrimination occur in a power situation that allows them.
Marriage isolation
A situation in which other community members avoid marriage relations with that family for fear of leprosy infection.
Acronyms
ALERT: All Africa Leprosy, Tuberculosis and Rehabilitation Training Centre.
FGD: Focus Group Discussion.
OAU: Organization of African Unity – now AU (African Union).
WHO: World Health Organization.
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