SPECIAL PAPER

Leprosy Stigma: Ironing out the creases

OMOBOLANLE KAZEEM*
,
** & TEMITAYO ADEGUN**
*LEPRA Health in Action, Colchester, UK
**University of Essex, Colchester, Essex
Accepted for publication 25 May 2011
Summary Oft-cited as a deterrent to elimination of the disease, stigma is still a critical
feature of the leprosy landscape leading to ostracism, loss of employment, loss of
housing, ridicule and rejection from society. The reason for leprosy-stigma rests
historically and culturally on the mythology about the diseases origin and
transmission, and its aesthetic features such as the enigmatic physical disgurement,
and the distinctive ulcers consequent of untreated leprosy. While the literature on
leprosy has been consistent in showing that stigma is a social complication of the
condition worldwide, there is seldom recognition of processes of stigmatisation in
broader contexts. Effective and sustainable interventions directed at curbing leprosy
stigma and so improving its social course must, however, be informed by an
appreciation of such contexts; particularly in the light of the goal to eliminate the
disease worldwide. Examining stigma in the broader contexts of historical, social,
economic, political contexts is the aimof this paper. The paper also has implications for
broad ranging intervention efforts aimed at de-constructing leprosy-stigma in order to
craft a more accommodating ambiance of acceptance, care and support for people
affected by leprosy.
Introduction
Stigma is a central feature of the social impact of leprosy.
1
The far-reaching and unfavourable
impact of leprosy stigma leads to avoidance of healthcare services, deterioration of personal
health and socio-economic status; and reduced quality and effectiveness of public health
programmes in controlling the disease.
24
It also feeds upon and strengthens existing social
inequalities and is manifested at all levels: individual level, in families, institutions and the
wider society.
511
Moreover, it takes place over time as a process. According to Baison and
Van Den Borne,
12
the rst stage explains how certain leprosy cognitive scopes result in a
range of affective responses towards the disease. The second stage involves how these
affective responses contribute to social devaluation of the leprosy patient and consequently,
the adoption of negative behaviours towards them.
Correspondence to: Omobolanle Kazeem (e-mail: becaz_ng2001@yahoo.co.uk)
Lepr Rev (2011) 82, 103108
0305-7518/11/064053+06 $1.00 q Lepra 103
The eventual manifestations of leprosy stigma process are status loss and
discrimination.
13
By extension, the stigma process crystallises into different types of stigma
which, according to van Brakel,
14
include self and public stigma respectively. While public
stigma is discernible in evasion, social distancing, repugnance at disgurement and lack of
social support, self-stigma results in diminished self-esteem. People with self-stigma are less
likely to socialise with other people.
1517
This is substantiated in research on leprosy-infected
Taiwanese women by Shieh et al.
5
which reported that these women exhibited self-inicted
stigma by avoiding close contact and sharing household items with family members; and also
by avoiding social functions.
Research in leprosy has been quite consistent in showing that stigma is a deterrent
to leprosy elimination.
5,1820
However, this research has seldom explored the dynamics of
leprosy-stigma in its socio-cultural, economic, historical, and political contexts, and this
consequently impairs the design of effective and sustainable interventions to tackle leprosy
stigma, particularly in the light of the goal to eliminate the disease worldwide. Herein lays
the importance of this paper. It examines leprosy stigma in the socio-cultural, historical,
economic and political contexts; and the implication of this for interventions.
LEPROSY STI GMA I N VARI OUS CONTEXTS
Various writers have implicated historical events and practices in leprosy stigma.
2123
Firstly, biblical teachings perpetuated by missionaries associated leprosy with sin and
uncleanliness; and people with leprosy came to be considered outcasts as a consequence.
21
Secondly, the related concepts of contagion and aesthetic features of leprosy induced fear.
22
Finally, twentieth century western policies advocating incarceration of people affected by
leprosy at various leprosaria due to the social constructions of the disease; also induced fear
and ultimately stigma.
23
Social constructions of leprosy are commonly guided by cultural, traditional and religious
beliefs or myths about disease and illness,
24,25
not least in low resource settings like India
17
and many African countries.
26
Too often, leprosy infected people are thought of as cursed or
victims of witchcraft, or as blameworthy / immoral; and their disease well deserved.
19
The
social constructs and myths of leprosy are knotted with high rates of illiteracy and
misinformation about the disease.
Leprosy stigma is not only produced by local beliefs about the disease, however. The
wider social, political and economic contexts are also signicant. In many previously
colonised countries, government policies and laws on leprosy have lagged behind scientic
breakthroughs.
27
An example worth mentioning is the slow pace of changes in Indian leprosy
legislation, despite the rapid decline in leprosy prevalence rate from 502 per 10 000 in 1994
to 62 per 10 000 in 1996.
27
In the case of Japan, some government policies and laws such as
the Japanese isolation policy had once favoured leprosy stigmatisation.
27
The human rights of
leprosy patients were violated as they forcefully underwent abortions, sterilisation, and
isolation in remote islands long after the development of MDT.
28
Japans isolation policy,
albeit withdrawn in 1996, had real-time cost - a bequest that keeps on affecting the decisions
made by leprosy-affected people. In addition, the problem of leprosy-stigma has not been
explored in the policy debates of some countries due to the erroneous impression that the
disease has been eliminated and no longer a public health problem in such countries.
29
Consequently, governments shy away from enacting legislation in favour of leprosy patients;
and when enacted, implementation is an uphill task because of budgetary famine.
O. Kazeem and T. Adegun 104
In an economic context, leprosy stigma results in social instability which in turn curtails
economic growth and impoverishes previously self-sufcient communities, and worsens
conditions for those already poor. People with leprosy may be refused employment or lose
their jobs because of their disease, and associated complications with consequent brutal
nancial burdens.
6
For example, in an Indian study by Prabhakara et al.
7
they found that
1644% of leprosy patients experienced a fall in their income. Furthermore, in a South
African study of the psychosocial needs of leprosy patients, Scott
8
found that the subjects all
feared losing their jobs and 17 out of 30 concealed their disease from their employers.
Infected people may lose their jobs even earlier than they develop labour-impaired
disabilities (due to late or no treatment) which lead to poverty. A set of operational
rehabilitation principles for leprosy affected people by Nicholls and Smith,
30
points out that
many people affected by leprosy live in conditions of extreme poverty with few opportunities
of earning income and may turn to begging as a last resort.
3132
Overall, the ways in which leprosy stigma is explicitly or secretly expressed are shaped by
a range of social, cultural, political, and economic factors. Addressing these broader social
and economic forces can improve the health outcomes of people with leprosy while helping
to curb stigma.
MANAGI NG LEPROSY STI GMA
The journey so far
It would be wrong to think that there are no intervention efforts against leprosy stigma so far.
The existing interventions point to two major strategies. The rst is information-based
awareness programmes to dispel misconceptions and traditional beliefs about leprosy as well
as to raise awareness of new advances at individual and community levels.
3334
However,
providing people with disease facts, according to Hayes et al.
35
does not lead to widespread
stigma reduction. The second strategy is the instituting of favourable policies and anti
discrimination legislation as safeguards or to compensate leprosy patients from stigma in
public settings.
36
This is exemplied by the landmark judgment resulting in court-awarded
compensation of US$291 million to leprosy patients incarcerated for many decades due to
the Japanese governments isolation policy.
37
This strategy is admirable, but stigma is often
outside the reach of legal constraints, given that it is deeply-seated and its manifestations are
subtle in most cases.
38
Further, evaluations of most of these interventions are not only limited by fairly short-
term assessments, but also by the use less rigorous studies.
24
Most of these studies report
evidence of supercial attitudinal changes but limited change in deep-seated fears.
Way Forward
Although the aforementioned strategies are vital elements in the ght against stigma, on their
own, they are inadequate in the anti-leprosy stigma cause. Leprosy stigma is rooted in various
contexts, and therefore effective and sustainable interventions should have sound theoretical
underpinnings with attention to these contexts. Interventions to reduce leprosy stigma are
likely to be more effective if they are rapidly adaptable to the prevailing socio-cultural,
economic, and political contexts; and are multi-strategic. According to Floyd Richard and
Gurungu,
39
holistic multi-strategy programmes are more effective in tackling stigmatising
Leprosy Stigma: Ironing out the creases 105
attitudes than are single interventions and are therefore needed to address leprosy stigma
in broad contexts. Interventions must be participatory, targeting individual, community and
policy levels. Comprehensive needs assessment must precede programme planning which in
turn must use appropriate planning models that encompass the communitys concerns.
24
At the individual level, educational programmes must be targeted at health care
professionals to address their prejudiced attitudes, and at people with leprosy and their family
members. This is essential as there is evidence that when the family members of a person with
the stigmatised condition are misinformed about the disease, it hampers the coping and
adjustment abilities of the infected person.
40
Likewise, the powerful effect of counseling
people with leprosy is important. Group counseling of people with leprosy has been shown to
be time-efcient and productive in tackling leprosy stigma.
39
Further, inducing empathy,
according to Batson et al.
41
for a stigmatised group member - in this case is a leprosy affected
person - can ultimately help to improve attitudes towards the whole group.
The impacts of the bodily disgurement of leprosy on leprosy stigma have been widely
documented,
4244
so development of leprosy control programmes that specically target
disability prevention will be a critical response to a widely appreciated need of reducing
the effects of leprosy stigma.
45,46
In addition, interventions that involve socio-economic
rehabilitation of leprosy patients are very important.
At community level, health education campaigns must shed light on leprosy through
messages that sensitively deal with the local communitys beliefs and misconceptions while
driving home the right information about leprosy to the people. The messages must be
structured to make sense within the logic of the peoples worldviews whilst they tackle
leprosy stigma in broad contexts.
47
At policy level, advocacy efforts must centre on a supportive, enabling environment that
favours legislative and policy change.
48
To ensure organisation of various information into a
logical structure advocacy efforts must use a target-specic stigma-change framework.
48
There is also a need to pay greater attention to the human rights violations faced by people
affected by leprosy. Finally, implementation of leprosy stigma intervention programmes does
not only require diverse and joint skills, but must also be commensurable with access to
health care.
Conclusion
This paper offers a snapshot of the conceptualisation and dynamics of leprosy stigma in
various contexts. For people affected with leprosy, stigma remains a persistent predicament
and control efforts so far have not adequately controlled the pervasiveness of the problem.
The struggle of successfully overcoming leprosy-stigma lies in understanding it in
broader contexts, and continually exercising targeted strategies normalisation,
neutralisation and de-construction of stigma, all based on solid theoretical foundations and
empirical evaluations. The key to success in all these efforts will be a coordinated inter-
sectoral approach matched by massive commitments by those affected by leprosy, along with
governmental and non-governmental organisations. The involvement of these organisations
will be a function of the economic, political, and cultural contexts.
Finally, it is important to entrench the anti-leprosy stigma cause in broader equalities and
human rights activities. Until patients with leprosy are treated as equals, the goal of leprosy
elimination will remain evasive.
O. Kazeem and T. Adegun 106
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