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1 CBR responses to information about stigmatization of leprosy: Case study from Western Nigeria by Bassey Ebenso

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1 1 CBR responses to information about stigmatization of leprosy: Case study from Western Nigeria by Bassey Ebenso

2 2 Outline of Presentation 1)Context of study—motivation(s) for study 2)Objectives of study 3)Qualitative methods used 4)Choice of research sites and why? 5)Background to the Yoruba people, their worldview and socialization process 6)Emerging findings regarding stigmatization of leprosy in Western Nigeria 7)CBR responses to information on stigmatization of leprosy

3 3 a)Partial success of >40 years of disease control interventions to significantly change public perception of leprosy in Nigeria. b)Realization that most of what we know about stigma emerges from surveys conducted in the general public or specific sub-groups e.g. health workers  K.A.P type surveys.  Various Stigma scales c)Relative absence of the views & everyday experiences of persons affected by leprosy d)Poor understanding (among professionals) of the complexity of processes of stigmatization. Context of study This research was informed by:

4 4 Objectives of study Address the absence of ordinary people’s voices in what we know about leprosy through: Understanding how persons affected by leprosy experience stigmatization in Western Nigeria (beginning from the period b4 diagnosis, to during treatment, after treatment & the present) Revealing how leprosy control policies, cultural institutions, relationships and socio-cultural practices shape stigma experiences.

5 5 To achieve the foregoing, Focused on the self-told stories of individuals affected by leprosy to shed light on the diverse experiences of living with leprosy and its associated stigma. Sought inter-connections between individual experiences and changes in leprosy control policies, institutions, cultural beliefs and practices & relationships etc.

6 6 Qualitative methods used: As this was the first study exploring the processes of stigmatization in Western Nigeria, I adopted the following qualitative methods: 1.Life history interviews with 20 individuals affected by leprosy (10 men & 10 women) to examine experiences of living with leprosy. (two phases of interviews)

7 7 Qualitative methods used cont: 2.Supplemented with interviews with 24 community members, (including 11 young people aged 19-34yrs) 3.Vignettes (sketches) with individuals affected by leprosy and community members to clarify social responses to leprosy and stigma 4.Documentary analysis of history & culture of Yoruba people

8 8 Qualitative methods used cont: 5. Scrutiny of primary school books—Aláwìíyé books 2 to 6 6. Investigation of “proverbs” associated with leprosy in Yorubaland Why investigate proverbs?:  Proverbs are regarded as a virtual repository of the wisdom lore of Yoruba society  Encoded as abstract ideas about social issues; expressed in metaphorical (symbolic) form  passed down orally from generation to generation over the centuries  Distinguish enduring societal perceptions from random individual ideas

9 9 Yoruba People of Western Nigeria Known for a rich cultural tradition and indigenous religion They span 5 countries in west Africa (see red ring) Population of 40 million people—One of the largest groups in sub-Saharan Africa Largest concentration (83%) live in West Nigeria = 33 million people

10 10 2 Research sites in W. Nigeria why? Leprosy communities in Okegbala Ogbomosho

11 11 Some background to Yoruba Worldview* 1. Disease causation: Yorubas believe that most chronic diseases and conditions for which they can not provide explanations have supernatural origins/ causes. This is common to other African systems of belief. 2. Predestination: Yorubas are deeply religious and believe forces outside the individual to be related to the concept of predestination. –Everyone is created by a Supreme Deity who seals his/her destiny b4 they are born –So everyone has a ‘destiny’ (orí) which is chosen for him/her by the divinity of wisdom (Ifá) b4 they are born into this world –It is possible to find out one’s destiny after birth by consulting Ifá priest who use a system of divinations to consult with the divinities and thus advise the client

12 12 Predestination cont: –However, the choice of one’s destiny is not as fixed as it may appear above –i.e. the choice of a good destiny only gives the potential for success, not success it self –So there’s still room for personal effort and hard work

13 13 Predestination cont: –Certain people (traditional healers/priests etc) and rivals/enemies who are biased towards evil practices can alter people’s destinies for the worse (by using supernatural powers, charms, bad medicine) –The powers of such people is a dreadful reality capable of debarring people’s destiny from being fulfilled –Most people therefore consult the Ifa priests/ diviners to i) ascertain their destinies ii) perform rituals or offer sacrifices to ward-off evil & misfortune iii) or remedy negative destinies

14 14 Socialization process: Concept of communal living Yoruba people live a highly communal life, deriving their sense of worth from belonging to numerous social groups and informal networks (called ẹgbé). Based on a belief that individuals are created as unique physiological beings. Nevertheless, each person needs the fellowship/communion of other individuals to feel & be whole and complete. This is based on a further belief that individuals cannot live in a state of perpetual individuality without their community. In fact form of self-alienation arising from self-serving aspirations is considered a moral failing. A spirit of solidarity is thus central for the social life of a community/group.

15 15 Concept of communal living cont: A genuine Yoruba person is one who voluntarily employs her/his cherished freedom & material resources for self-improvement & for common good The social worth of the individual within the community is measured by the qualitative value of her/his conduct towards the survival of the group. People therefore derive a sense of personhood from belonging & contributing to social groups than from independent individualism My interpretation of the foregoing: Conformity to values that sustain “Yoruba social identity” is regarded as ‘good conduct’ and persons who so conform are approved as “Genuine Yoruba citizens”. By extension, persons with ‘undesirable social conduct’ are excluded from society because of the threat of such conduct to solidarity and communal survival The above control and containment strategy sets the context for stigmatization of out-groups e.g. disability, infectious diseases etc

16 16 Emerging findings: 1.Stigmatization of leprosy is not influenced by:  Gender & Different religious persuasion of persons affected by leprosy/community members 2.Stigmatization is influenced by:  Visible impairments (deformities and ulcers)  Skin signs (patches, nodules) Social character towards communal groups prior to having leprosy Employment, affluence, prominent position in society of individuals affected by leprosy Age of community members 3.Primary school books: contain instructions on taboos (forbidden practices) concerning leprosy in Yorubaland

17 17 Emerging findings cont: 4. Identified 22 proverbs summarizing Yoruba ideas about leprosy  Proverbs mirror collective wisdom of knowledge, attitudes & practices towards leprosy  Proverbs revealed both positive & negative attitudes & ideas  Included the belief that leprosy was highly contagious  Perception that contagion & visible impairment are the basis for stigma and exclusion  Belief that early detection and treatment will prevent impairment  Indications that once impairments occur, they cannot be restored/treated  Ideas that impairment impacts negatively on activities of daily living

18 18 Emerging findings cont: 5. Predominant ideas of causation: Supernatural affliction –Most people claim that: “Leprosy seldom happens naturally in Yorubaland. It is mainly the result of persecution. For example, someone might be envious of another’s progress in a certain situation... the jealous person becomes resentful of the other person’s success & proceeds to deliberately afflict the successful one with a leprosy-like disease” (Ségun, a 40-year old Male Traditional Healer). –using minute amounts of very potent chemicals/herbs that cause a leprosy-like disease resulting in impairments and skin patches –Most persons affected by leprosy claim their diseases follow interpersonal conflicts within groups involving a rival or an enemy –Narratives provide details of events and progress of their diseases to justify their points of view

19 19 Emerging findings cont: 6a. Other popular beliefs about leprosy: –Leprosy is highly contagious –Impairments & ulcers due to leprosy don’t heal but progress –Leprosy is incurable –Transmitted by heredity 6b. Less popular believes of transmission –Droplet [bacterial] infection –Fluids oozing from ulcers/ skin lesions 6c. It was common for people to hold beliefs of both supernatural and ?natural causation of leprosy

20 20 Emerging findings cont: 7a. Responses to leprosy in Yorubaland Extreme stigmatization manifested as fear and loathing of/aversion to leprosy Exclusion from social groups & institutions (schools, churches/ mosques, employment etc) for fear of transmitting a ‘disabling disease’ to others –“It is common knowledge that people affected by leprosy are regarded as different, defective & undesirable, so they are denied many advantages or benefits derivable from the community. Other people refuse to associate with them” (Mr. Ọpé, 70yr-old Male cleric). 7b. Rules of avoidance & sanctions include: –Separation of houses of people affected (approx 4-5kms from other houses) –Public ridicule of people that associate with leprosy sufferers –Families of prospective in-laws are investigated for stigmatizing diseases e.g. leprosy –marriages with families affected by leprosy are prohibited

21 21 8. Differences b/w perception of elderly people & youths (aged 19-35Yrs) a)The youth are not knowledgeable in Yoruba traditional beliefs & practices associated with leprosy e.g. they are unacquainted with Yoruba proverbs related to leprosy b)Their attitudes are largely positive compared to the elderly people’s e.g. they are more willing to accept those affected by leprosy back into society compared to the elderly generation c)Youth in Kwara state seemingly have more contact with people affected by leprosy & are thus more welcoming/ tolerant of persons affected by leprosy

22 22 Reflections: a) processes of stigmatization & disability causation 1. Narratives of participants are grounded in cultural beliefs/practices that are indicative of the context they are embedded 2. Apart from promoting solidarity and facilitating benefits of group living: –A by-product of communal living: is creating spaces for discourses of normality and difference in society –Categorization of difference: as e.g. ‘high contributors or good citizens’, ‘poor contributors or undesirable citizens’ leads to envy and resentment in the “have-nots” against the “haves”. Figure 1 Promotion of Cultural Identity Stigmatization of inequality Envy & Aggression Deliberate causation of leprosy in others

23 23 3. This complex process of stigmatization feeds into already existing prejudice towards & dread for disabilities based on widespread perceptions that disabled persons: –E.g. People with epilepsy, general disability fail to meet prescribed standards of physical beauty/attractiveness –Are biologically & socially inferior to non-disabled persons 4. This manifests as stigmatization/ exclusion of persons affected by leprosy who acquire the status of undesirable citizens Figure 2 Processes of stigmatization & disability causation cont: Leprosy/ impairment Devaluation : undesirable citizens Further inequality (inability to contribute to community survival) Further stigmatization & exclusion

24 24 Processes of stigmatization & disability causation cont: 5. From the foregoing, people affected by leprosy sit at the intersection of diverse dimensions of cultural & social difference depicted in Fig 3: 6. Hence, people affected by leprosy should be thought of as living with multiple stigmas rather than one, that serve to marginalize them in different ways. Cultural Identity Socio/economic power Inequality Envy & aggression Disability Institutional policy Persons affected by Leprosy

25 25 What therefore is leprosy stigma? Based on research in Western Nigeria, leprosy stigma is:  more complex than mere aversion of physical impairments  “a social process characterised by fear, negative moral judgement, devaluation and rejection of those affected by leprosy based on the perception that they violate important moral codes/standards.  This perception and negative moral judgement pervade cultural beliefs, communal attitudes and linguistic pattern, sometimes extending into institutional policies to stimulate the endorsement and perpetuation of discriminatory and exclusionary practices against persons affected by leprosy or their affiliates*”. *Affiliates denote family members and other persons that associate with those affected by leprosy, sometimes including activities or programmes established for the prevention and treatment of leprosy.

26 Implications for global context 1.We often overlook the fact that the origins of prejudice are based on widespread perceptions that disabled persons (e.g. affected by leprosy, epilepsy etc) violate important cultural norms & values, which marginalize them from the remainder of the population. 2.The classification of leprosy merely as an infectious disease overshadows alternative understanding informed by the complex intersection of various socially and culturally determined reasons for discrimination e.g. cultural identity, class, religion, socioeconomic status, disability etc etc. 26

27 CBR Responses to information on stigmatization: 27 Recalling that: 1.Stigmatization is defined within & influenced by specific cultures and contexts. In Yorubaland, this manifests via: i) religious and cultural beliefs, ii) impact of language use e.g. proverbs, iii) institutional policies e.g. Ministry of education’s recommendation of primary school books, iv) social inequalities e.g. Employment, power etc 2.Evolution of concepts within CBR [especially disability and rehabilitation], has led to emphasis of a) human rights, b) action to address inequalities, iii) alleviation of poverty and iv) expanding role of DPOs and ; 3.Disability is no longer perceived as merely the result of impairment, but rather by social and environmental barriers to participation (WHO 2004, p3)

28 28 CBR Responses to info on stigma cont: 4. Environmental barriers that limit activities and social participation include i) support and relationships, ii) attitudes; and iii) services, systems and policies (WHO 2004, p3) 5. Programme implementers, policy makers & researchers should work alongside DPOs, community members & other stakeholders 6. To design multi-level, multi-strategy interventions utilizing evidence from the community to influence changes in institutional/ cultural attitudes and practises towards leprosy and difference. This will include social action to correct contextual discrimination

29 CBR Responses to info on stigma cont: A) Medical issues: require i) early detection and treatment of active cases ii) prevention/management of impairments (surgery, devices & self care ) iii) Health promotion through information dissemination B) Individual or Intrapersonal issues: require personal awareness and empowerment-type interventions to address psychological issues or restore self-esteem and personhood e.g. Individual and group counselling, religious support, (collaboration with DPOs and self-help groups will be vital here) C) Inter-personal and relational Issues: require Poverty-alleviation type interventions e.g. Livelihoods (employment, skills development, financial services) to address the support and relationship problems that shape stigmatization e.g. Socio-economic inequalities. 29

30 CBR Responses to info on stigma cont: D) Community/cultural issues: require i) Information sharing/ negotiation-type interventions to address negative aspects of cultural beliefs/ attitudes about leprosy. ii) Community mobilization and Advocacy to introduce “human rights needs” of individuals and remove barriers to inclusion in community activities; and iii) Highlight negative influences of cultural identity on stigmatization E) Institutional issues: require i) Advocacy and lobby-type interventions e.g. of Ministry of education and publishers of primary school textbooks to address misinformation in textbooks that shape stigmatization; ii) Policies changes to address the inadvertent endorsement and perpetuation of discriminatory policies and practices 30

31 31 Thank you

32 32 Reflections for policy and practice There’s a peculiar mode of disease/ disability causation influenced by cultural socialization Proverbs mirroring collective wisdom about leprosy/disability are a valuable resource to consider for programme planning/implementation Current health promotion strategies which consider unscientific views of illness as evidence of the need for health education will be partly ineffectual in contexts such as Yorubaland. They need a review in light of emerging information

33 33 Reflections for policy & practice cont Dominant health promotion discourse stresses the values of rationality, logical thought, planned decision-making and self-efficacy & an internal locus of control. This is based on a western secular ‘ways of seeing’ the world that discounts the Yoruba worldview* which is embedded in religious/cultural beliefs that sees life as controlled by forces external to the person.

34 34 Unresolved Technical Issues (W.H.O) Genome: i.e. chromosome of leprosy germ is yet to be fully studied in the laboratory. So there is no promise of prevention by vaccination Mode of spread: Exact mode of transmission is not known –Although droplet infection is the favoured mode of spread Other modes of spread that can not be completely ruled out : –From the soil to humans (in those who walk bare feet) –Insect bites

35 Worldview (Hiebert, 2008) Basic cognitive + affective + evaluative assumptions that lie behind the beliefs and behaviour of a culture. –Provides people with a way of looking at the world that makes sense out of it; gives a sense of being at home & reassures them that they are right. –Often taken for granted and largely implicit –Generally unexamined Cognitive assumptions: structures people use to explain reality. In the west they include atoms, virus, gravity. Furnishes us people concepts of time, space & other worlds Affective assumptions: notions of beauty, style and aesthetics in a culture e.g. Taste of music, art, food, dress etc & how people feel towards each other Evaluative assumptions: standards people use to make judgements e.g. criteria for determining truth and error, likes & dislikes, right & wrong. 35

36 Some signs of leprosy 36

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