Transcript CBR responses to information about stigmatization of leprosy

CBR responses to information about
stigmatization of leprosy:
Case study from Western Nigeria
by
Bassey Ebenso
email: [email protected]
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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
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Context of study
This research was informed by:
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.
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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.
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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.
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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)
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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
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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
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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
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2 Research sites in W. Nigeria
why?
Leprosy communities in
Okegbala
Ogbomosho
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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
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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
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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
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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.
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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
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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
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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
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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
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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
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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
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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
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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
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Stigmatization
of inequality
Envy &
Aggression
Deliberate causation
of leprosy in others
Processes of stigmatization & disability causation cont:
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
Leprosy/
impairment
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Devaluation :
undesirable
citizens
Further inequality
(inability to contribute to
community survival)
Further
stigmatization &
exclusion
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:
Cultural Identity
Socio/economic power
Institutional policy
Persons
affected
by
Leprosy
Disability
Inequality
Envy & aggression
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.
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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.
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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.
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CBR Responses to information on stigmatization:
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)
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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
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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.
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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
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Thank you
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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
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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.
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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
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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.
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Some signs of leprosy
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