THE EFFECTS OF THE STIGMA OF LEPROSY
ON THE INCOME
GENERATION OF LEPROSY AFFECTED PEOPLE IN THE
TERAI AREA OF SOUTH EAST NEPAL
J. H. Calcraft
http://www.dinf.ne.jp/doc/english/asia/resource/apdrj/v172006/lepstigma-nepal.html
ABSTRACT
This study explores the effect of stigma on the income generation
of people affected by leprosy in the southeast Terai area of Nepal.
Semi-structured interviews were conducted to explore experiences of
stigma and the impact on income generation. Results showed a
negative effect on income generation - with employment being lost as
a direct result of stigma in several cases. The negative physical
effects of the disease were for many the main reason for lost
income, or employment.
INTRODUCTION
Leprosy has affected people for thousands of years. It was, and
often still is, seen as a contagious, mutilating disease. Today,
leprosy can be clinically cured relatively easily, yet the effects
that it has on a patient's life can carry on indefinitely. It is a
stigmatising condition, and can lead to the person affected being
rejected and excluded from society (1). Other examples of social
exclusion are available in literature (2,3,4,5). Stigma itself is a
complex issue with the capacity to affect all facets of life of a
person affected by leprosy. This study has focused primarily on the
impact of stigma on income generation. This is an important issue,
as a person's sense of self-worth, and how others perceive them, is
interwoven with their income level and employment status. Income
generation covers employment type and ability to secure employment.
The type of employment that a person has, is linked to their status,
and well-being.
NEPAL
Nepal is one of the world's poorest and least developed
countries, with a Gross Domestic Product per capita of $1400 (2002
estimate). Most of the population is dependent on agriculture, and
42 per cent are below the poverty line. Life expectancy at birth in
2003, was recorded as being 59 years (men 59.36 years, women 58.63
years). Nepal is multicultural; the 1991 Census of Nepal recorded 60
caste and ethnic groups and 70 languages and dialects (CIA World
Factbook website http://factbook.wn.com/nepal World Factbook.
Accessed 13th August 2004).
Nepal is the world's only Hindu kingdom. It is a hierarchical
society where caste continues to play an important part in dictating
a person's position based on Hindu notions of purity and pollution.
Furthermore, caste determines an individual's behaviour,
obligations, and expectations (6).
The Hindu culture of maintaining purity, and avoiding pollution,
is likely to have a bearing on the treatment of people affected by
leprosy. This means that such people are thought to be ritually
unclean, and contagious.
In a predominantly Hindu country such as Nepal the belief that
deformity is a result of divine punishment, is likely to contribute
to the stigma experienced by people affected by leprosy. It is
perhaps doubtful whether leprosy would be associated with social
stigma were it not for the distortions it causes to physical beauty
(7).
The Maithili people
One of the ethnic groups of Nepal is the Maithili people, found
in the south-eastern Terai region of the country, in Janakpur and
the surrounding area. About 10.8 per cent of Nepal's population are
Maithili, making them the second largest group in Nepal.
The Maithili are predominantly Hindu, with the remainder made up
of Muslims and Christians. The Maithili as a people are known for
their religious devotion and are traditional in terms of cultural
behaviour. Most Maithili live in isolated rural regions; this
isolation has sheltered the majority of the Maithili from the
'modernising' influences of the towns and cities.
Maithili culture is male dominated. Females are restricted in
what they can and cannot do. When it comes to income generation, the
norm of society is for a woman to remain in the house once married
and carry out the housework, paid employment is not common for
women. Lower caste women will work in the fields, but this is the
exception rather than the rule. This will have a direct influence on
the issues involved in this study, because there is no effect on
income generation for women who do not have paid work to begin with.
Leprosy in Nepal
Nepal is one of ten remaining countries that have a leprosy
prevalence rate greater than 1 per 10 000 population, and at the end
of 2003 was ranked fifth in terms of leprosy prevalence rates in the
world (8). According to an annual report of the Leprosy Elimination
Programme (Nepal) for 2002/2003, the prevalence rate of leprosy was
3.04 per 10 000 population in 2002/2003.
The Maithili as mentioned inhabit the Terai area of South-east
Nepal. The Terai is a relatively flat strip of land in southern
Nepal which borders India. According to a report of internal leprosy
elimination monitoring and evaluation in Nepal, of July-August 2003
(9), more than 80 per cent of leprosy cases in Nepal, and of annual
case detection, is contributed to, by 20 endemic districts of the
Terai region. This makes the Maithili people an obvious choice for a
study of leprosy related matters. This study was undertaken in
collaboration with the Nepal Leprosy Trust.
The Nepal Leprosy Trust was founded in 1972, with the purpose of
improving the lifestyle of people affected by leprosy and other
marginalised people. The Nepal Leprosy Trust is registered as a
non-governmental organisation (NGO) in Nepal, and as a Charity in
England. The Trust aims to provide medical, social and economic
benefits by providing employment and support.
The Trust runs the Lalgadh Leprosy Services Centre (LLSC) in the
Southeast Terai near Janakpur. It is here that the data collection
took place. The major principle in all of the Trust's activities is
to reduce the stigma that wrongfully and unjustly surrounds leprosy.
The aim is to promote the full participation in society of all those
affected, including family members.
Leprosy
Leprosy (or Hansen's disease) is caused by Mycobacterium leprae (M.leprae).
It is a disease affecting the skin, (where the signs of infection
are often first discovered) and other organs, but the involvement of
the bacillus in the peripheral nervous system causes the most
serious damage to the patient. Leprosy is the only bacterial disease
to be characterised by the invasion of peripheral nerves. This
invasion and subsequent damage leads to peripheral neuropathy if
treatment is delayed (10).
According to Robinson (11), leprosy can be explained in terms of
disease (biomedical perception), illness (self-perception) or
sickness (social perception). Health workers tell affected persons
that they have the disease leprosy according to physical symptoms.
The illness leprosy is experienced by the person, and is shaped by
cultural and social influences. The sickness leprosy is the problem
as perceived and named by society, and it is this that reflects
social stigma.
STIGMA
As stated previously, leprosy as a disease has wide reaching
impacts beyond the medical impact, most notably stigma. Goffman (12)
has provided the most widely accepted definition and description of
stigma. According to Goffman, the term 'Stigma' originated with the
ancient Greeks. Stigma referred to bodily signs designed to expose
something unusual or bad about the moral status of the signifier.
The Stigmas were cut or burnt into the body and advertised that the
bearer was a slave, a criminal, or a traitor - a blemished person,
ritually polluted, to be avoided, especially in public places.
Today, the term is applied more to the disgrace itself than to the
bodily evidence of it.
The term stigma will be used in this study to refer to an
attribute that is deeply discrediting. Stigma has a double
perspective: does the stigmatised individual assume that his/her
different- ness is known about already, or is evident on the spot,
or does he/she assume it is neither known about by those present, or
immediately perceivable by them? In the first case one deals with
the 'discredited' and in the latter, the 'discreditable'.
Goffman (12) also describes what he calls 'courtesy stigma' as
being the extension of a person's stigma to people who are related
through the social structure. The relationship leads the wider
society to treat both individuals in some respects as one - there is
an obligation to share some of the discredit of the stigmatised
person.
Hetherton et al. (13) develop Goffman's ideas and point out that
stigmatisation, is personally, interpersonally, and socially costly.
It is a social construction that involves at least two fundamental
components: firstly, the recognition of difference based on some
distinguishing characteristic or 'mark', and secondly, a consequent
devaluation of the person. Stigmatised individuals are regarded as
flawed, compromised and somehow less than fully human.
Bainson and Van den Bourne (7) describe a set of 'affective
dimensions' that involve the emotional reactions that individuals,
groups or communities develop towards leprosy patients. These
emotions include pity, anger and fear. With leprosy, it is the
element of fear that is most likely to lead to stigmatisation rather
than any other affective dimension.
Leprosy, Stigma and Income Generation
A person's sense of well-being and the level to which they see
themselves as useful, is inextricably linked to their income
generation, and ability to secure employment. For the spouse or
parent, the ability to provide for dependants is linked to a sense
of worth and fulfilment in their role.
There are few studies on leprosy, stigma and income generation.
However, some researchers have explored the topic. Deepak et al.
(14) state that, "even today, social stigmatisation is frequent so
that affected persons with clear signs of chronic manifestations are
often unable to work, or to marry, they become dependent for care
and financial support, leading to insecurity, shame, isolation and
consequent economic loss." While Scott (15), in his study of the
psychosocial needs of leprosy patients in South Africa, discovered
that all of the subjects were afraid of losing their work, and 17
out of 30 did not mention the name of their disease to their
employers. Kaur and Van Brakel (16), in their study of leprosy
affected beggars in India, point out that they have found that the
combination of leprosy, physical impairments and social stigma leads
to 'dehabilitation' of the leprosy affected person, which ends with
the person becoming a beggar. Dehabilitation in this context, is
defined as loss of former place in society or social role, causing
loss of dignity, job and/or position leading to physical
displacement. Nicholls and Smith (17) comment on the experience of
people affected by leprosy, in their set of operational principles
for rehabilitation of people affected by leprosy - pointing out that
many such people live in extreme poverty and have few opportunities
to earn an income. They may be excluded from their former work place
or denied access to their former market. They go on to state that
the physical impact of leprosy may make it impossible to continue in
their former occupation. This is a point that is extremely relevant,
it is not simply a matter of stigma being the sole cause of income
loss, there are complicating factors involved.
In a study on community behaviour in eastern Nepal towards
leprosy affected people, de Stigter et al. (18) show that persons
affected by leprosy tried to hide their disease out of fear for
negative community behaviour (stigma). They state that 'persons
affected by leprosy experience exclusion from social life…they have
difficulties in gaining employment or they are refused jobs. In
general, persons affected by leprosy experience unsympathetic
reactions, insults, hate, abandonment or rejection…" They go on to
indicate that the motive for such negative community behaviour is a
"fear of infection by germs", as well as "fear of a curse of God".
METHODOLOGY
This research was conducted from May to July 2004, at the Lalgadh
Leprosy Services Centre, near Janakpur in the Dhanusha District of
the Southeast Terai of Nepal.
Semi-structured interviews were conducted with leprosy affected
people in Nepal. Nineteen interviews were conducted, nine with men,
and ten with women.
The aim was to be illustrative of leprosy affected people, rather
than representative of the wider population. Four of the interviews
took place at the hospital and fifteen were held either at the
meeting locations of the Lalgadh Leprosy Services Centre self-help
groups, or in participants' homes. Interviewees were selected both
on the recommendation of Trust staff as well as randomly. The
candidates recommended by staff were purposely selected on the basis
of their known experiences, in relation to the research. The
randomly selected candidates were members of self-help groups, and
were therefore not fully 'random'. However, no information was known
about them in advance by the interviewers, unlike the purposely
selected candidates.
Given time and resource constraints and the constant threat of
imposed strikes by the Maoists, this combination of purposive and
random selection was considered to be the most appropriate for the
study.
The basic criteria for selection of purposive and randomly
selected candidates were:
- Gender
- Leprosy affected person, or a family
member/close friend of a leprosy-affected person.
The interview location (either the candidate's home village, or
on the hospital compound) was not considered relevant to selection.
Prior to the commencement of interviewing, a general interview
framework was created - giving a pattern of question themes and
areas, to help guide the interview. This framework was reviewed
after a number of interviews had been completed and amended, on the
basis of that experience.
Due to the difference in language (both Nepali and Maithili are
spoken in the area), translators were used for the interviews.
Translators were briefed prior to interviewing on appropriate
techniques and styles of questioning that were acceptable (i.e. not
asking leading, or closed questions, and allowing the participant to
speak - not answering for them etc.).
The author undertook the interviews with men (with a male
translator), while a female colleague talked to the women with the
support of a female translator. The women especially are very
reserved around men; so all interviews were undertaken according to
a strict gender division.
To aid the translation process, all of the interviews were
recorded, with the participant's permission. The transcription and
translation of the interview recordings was undertaken by Trust
staff and the research team.
For analysis of the data, a simple indexing system was applied to
the text of each interview, to allow for easy referencing. Once a
significant number of transcripts had been completed and preliminary
analysis had been undertaken, common themes were identified and
noted.
It was essential for the researchers to recognise their ethical
obligation to prevent any harm to the participants, especially as
the topics of research are of a sensitive nature. Consent to take
part, was gained from all participants. All participants were
assured of their anonymity and were free to withdraw from
participation at any time. Data protection was of vital importance
whilst in Nepal and all data were kept securely, both at the
accommodation and whilst out in the field. All translators were
briefed on the importance of confidentiality of the interviews they
undertook and the texts they dealt with.
FINDINGS AND DISCUSSION
Stigma and income loss
In a developing world context, as found in Nepal, the loss of
income is a very serious matter, given the lack of formal safety
nets, and the likelihood that relatives and friends may have limited
resources themselves, and therefore, may be unable to provide
assistance.
Interviews highlighted several incidences of income loss of
leprosy-affected people, due to stigma. This was not clear-cut for
all cases, as, frequently there are complicating factors involved,
most commonly a physical effect of leprosy diminishes income
generating capacity, which then works alongside stigma. The
interview excerpts are referenced in the following manner: (Male 1)
indicates that the quote is taken from interviewee number one, who
was male.
The first interview was conducted with a 35-40 year old male from
Dharan in Eastern Nepal. He had worked in a restaurant - preparing
food and doing other general work (Male 1). He recalled the
following situation when he was diagnosed as having leprosy:
… no one was ready to give me work. They all hated me and the
restaurant where I was working sacked me telling that I had leprosy
and this could be transmitted to others if he stays here. I was in
complete destitution, without food, water and shelter. No body
allowed me to stay at their place. I had to beg alms for food in
Dharan… (Male 1)
Begging is an all too common result of leprosy - as pointed out
by Kaur and Van Brakel (19).
When asked if the reason for his leaving the restaurant was
solely his leprosy he responded:
Yes, this was the only reason, when the customers saw me with
leprosy, they stopped coming to the restaurant and the business was
almost a flop. So, I was sacked. (Male1)
This man had been employed for two years in his position, and
claimed to have been enjoying the work. To be fired for having
leprosy is sadly not an isolated occurrence.
Another case of stigma related income loss is found in interview
15. This was with a 40 year old man whose employment, in his own
words, had been:
every work like labour, farming, ploughing, digging and any other
farming or labour work. I was able to do any work. (Male 15)
This man developed visible signs of leprosy - wounds on his hands
and feet, and as a result of this he was unable to get work. His
income suffered as a result of the stigma of both his potential
employers and colleagues.
Interviewer - Before this disease were they offering to work?
Participant - Yes, they offered me. Interviewer - And after this
disease? Participant - No, nobody asked me. (Male 15)
When after I got serious wound, usually they did not want to give
me offer to work. But some times they offered me work when no other
labourers were available there. (Male 15)
Because there were wounds in my hand and foot they usually told
me that I had to work separately, not with them. Other labourers
usually told that if I went to anywhere for work they did not want
to go there for work (Male 15)
This man obviously felt that he was still physically able to
carry out the work, in fact the interview provided background
information that shows his physical fitness levels:
I used to play wrestling in my village on any carnival. Some
times I taught many boys of my villagers. Still some are very good
wrestlers… (Male 15)
A similar case is found with interviewee 17. He was a 35-year-old
male who prior to leprosy had been employed to weigh logs and do
other work. His situation changed with the onset of the disease, and
the associated stigma:
In the beginning I was not accepted to work with other labourers.
So, I couldn't earn at that time. I had to take a loan to meet
day-to-day expenditures. […] It was the disease. Because people
wouldn't like to work with me, I had less job opportunity. (Male
17).
The subject again has suffered a decrease in his income
generation, through the loss of work due to stigma. He claims to be
physically able to work:
I don't feel any difficulty in doing work. I soak and scrub my
hands and feet every day to remove dead skin and after that I apply
oil, and that keeps me fit (Male 17).
But the man does make reference to some negative effects of the
medicine taken:
... My work efficiency has considerably deteriorated after this
disease. The medicine creates weakness in the months of summer (Male
17).
Another clear example of stigma affecting income generation is
found in interview 13. This was with a 65-year-old male, who is
currently acting as a facilitator of a self-help group. The
participant was previously employed in agriculture. He was required
to work on a farm due to an unpaid loan of his fathers:
My father had died when I was a small boy, I survived in my
mother's sister's house and I had to pay some loan which was
borrowed by my father, to pay that loan I became a servant of the
lender. In that period he did not give me any salary, just food
(Male 13).
With the onset of leprosy and the appearance of the visible signs
of the disease, this man encountered stigma leading to a loss of
income generation:
After I developed the wound my owner refused to give me that
work, so I lost my job (Male 13).
Interviewer - Ok in that period you lost your job, after that
were you able to do work? Participant - Yes I was able (Male13).
The interview also revealed that the participant developed
physical problems inhibiting his income generation at a later date.
However, this was after the original stigma related income loss.
Income loss due to physical effects of leprosy
From the interview process, it is clear that the main source of
lost income generation is the dehabilitating physical effects of
leprosy. In the majority of cases, there is a physical problem of
some degree, even when there is a clear-cut stigma related income
loss, there is often a physical problem which also troubles the
person.
For some people, the physical effects of leprosy prevent the
continuance of physically based employment, which is the main type
of employment found amongst the rural population in which the study
was carried out.
My dad is unable to work because he has deformity in one hand and
one foot ... (Female 2).
We stopped our business for some time, when we got this disease …
Because we were weak. We didn't have power to work (Female 8).
Although we are labourers, due to our physical problem we are not
able to work and are sometimes suffering without food for many days
(Female 12).
Before that even before I was married, I used to do all kinds of
work, household and working in the field. Then I got a wound and
then I stopped working (Female 18).
For other people affected by leprosy, the physical effects are
less inhibiting of their work activities, and will simply restrict
the amount or type of work that they can carry out. The following
examples highlight this point…
At that time I was physically normal and strong, but now the
disease has affected my hands. I cannot hold things properly with my
hands. I can do only easy work now. People have no sympathy with me.
No one offers me any job. The previous life was undoubtedly better
(Male 1).
The effect of this disease on me is that it made me weak. I can't
do work in my full capacity. I don't get appropriate diet. Since
there is ulcer in my feet, I am unable to work in the field (Male
9).
I was making more income when I did not have leprosy, but after
this disease I became weak and my income was poor. Now I am doing
business, which is not physically hard to me, so now it is easy and
more beneficial for me. Because it is not necessary for me to go in
sunlight or field, it can be done in a room (Female 14).
The issues surrounding leprosy are grounded in the attitudes and
emotional reactions of both, the people affected by leprosy and the
people with whom he or she comes into contact. The loss of income
generation is one part of the overall leprosy related stigma issue,
and is itself governed by the attitude of the employer. In the
majority of cases, a lack of knowledge and understanding of the
facts about leprosy, leads to the assumption that leprosy will be
easily caught by anyone coming into contact with an affected person.
In the work place this is obviously going to be a highly unwelcome
problem, leading to the stigmatisation of the leprosy affected
employee - colleagues refuse to work with the person, customers may
refuse to be served, or will stop business altogether. This is all
amplified by the appearance of visible deformity.
Fear is the route of stigma - fear of exposure to the disease,
fear of being infected, and fear of association with a person
affected by leprosy and of courtesy stigma. This was highlighted in
the interviews through the attitudes described by the interviewees -
of the person with leprosy, of their family and of the community.
For example:
When they found out that I have leprosy, the immediate reaction
was, they stopped me from entering into the house and they wanted me
to stay away from the family. They thought if I am around, I can
transmit the disease to them (Male 1).
They became anxious to see the wound. They said that this disease
would infect them. Seeing the wound they started to hate me (Female
5).
His son had told him many times in the past - why are you going
to Lalgadh? You'll be found out. The son made him not go for
treatment because of fear of stigma. He thinks that he would be in
better condition if he had gone for treatment then (Male 10).
The attitudes and emotions of the person affected by leprosy who
experienced stigma at home, in the community and in the work place,
show some variation, but to generalise, there is an overriding sense
of disappointment, anger and sadness at the actions of their former
colleagues/employers, and of family and community members.
Towards the general leprosy stigma experience, there is again a
mix of emotions and attitudes coming through in the interviews. Some
people seem to accept their condition, and are confident in their
ability to convince people of their 'cured' status - their
personality and character cause them to become indignant at the
thought of stigma - they're cured so why should there be any stigma?
Others are less confident/optimistic and are greatly troubled by
the anticipated stigma problems that will be experienced/ have
already been encountered. The extreme examples of this condition are
seen in the few cases of 'self-stigma', identified in the study.
The male biased nature of Nepali and more relevantly of the
Maithili people, has a bearing on the situation of leprosy affected
individuals. As described previously, it is the norm for women to
not have paid employment, but to work in the home. The effects of
stigma on the income generation of women with leprosy is minimal, as
there is no income generation to begin with, however, stigma may
prevent them from doing their unpaid work, and may lead to divorce
or mistreatment by the spouse or family.
Age, education level, ethnicity, caste, religion, level of
visible deformity (Judged according to WHO grading: Grade 0 = No
anaesthesia, no visible deformity or damage; Grade 1 = Anaesthesia
but no visible deformity or damage; Grade 2 = Visible deformity or
damage present) (20) - these factors all have bearing on the income
generation of the person with leprosy. The age of the interview
participant may limit the opportunities that they would normally
have for employment - the very young and the very old have limited
earning ability, therefore, the occurrence of leprosy will have a
limited impact on their short-term income generation. The poorly
educated have less opportunity in the work environment than they
otherwise would have - they are limited in the type of work that
they can do, and therefore, the income that they can generate. In
Nepal, ethnicity, caste and religion have an influence on the type
of life that can be led - opportunities are restricted for certain
castes. The level of visible deformity, as mentioned previously,
will also play a large role in the life of the person affected by
leprosy - the more visible the leprosy, the greater the likelihood
of stigma and income loss. It is therefore not just a simple matter
of leprosy affected people losing income due to stigma - the
background situation needs to be considered, as well as the quality
of life that would have been available without leprosy, before the
full impact of the disease can be determined.
CONCLUSION
Today, leprosy can be clinically cured relatively easily, yet,
the effects that it has on a patient's life can carry on
indefinitely. It is a stigmatising condition, and can lead to the
person affected being rejected and excluded from society. Stigma
itself is a complex issue, with the capacity to affect all facets of
a leprosy affected person's life.
The question of whether there is a decreased income due to stigma
for the person affected by leprosy was addressed in each interview,
and as described previously, there were several cases where stigma
did indeed account for a decreased income. Although this was not
true in all cases, sufficient evidence was discovered to show that
this is a current problem faced by people affected by leprosy in
Nepal. Where a stigma related problem was present, the consequences
for the person affected by leprosy, were extremely negative.
The greater effect of leprosy on income generation was found to
be from the physical effects that often come with the disease. In
the majority of cases, there is a definite loss in income, and in
income generating ability of the interviewees, or of their leprosy
affected family member.
There was however, no evidence from the study to suggest that
courtesy stigma of families causes decreased income. In several
cases, the person affected by leprosy was separated from the family,
thus eliminating the possibility of courtesy stigma.
In many cases, the person is ostracised by their family (to avoid
catching leprosy). This has a profound affect on the well-being of a
Maithili person affected by leprosy, as, to be cut-off from one's
family is unthinkable for most. For a family to be willing to act in
this way towards a close relative, shows the degree to which leprosy
is feared in the local culture - it overrides the importance of
family ties and duties.
The general pattern of events for a person affected by leprosy in
the Terai of Nepal, as determined through this study, is for the
diagnosis of leprosy and subsequent disclosure about the disease to
family and community, to cause stigma against the person. This is
manifested in several ways - verbal abuse, ostracism from social
functions, enforced isolation and separation from the family, and
also in some cases, the loss of income generation and a decreased
standard of living. If this particular aspect of stigma is carried
through to its conclusion, then the person may be forced into
destitution.
In many cases, going forward for treatment is left too late to
avoid deformity. This is due to either a lack of knowledge of the
symptoms of leprosy (i.e. the person does not recognise that they
could have leprosy), or through fear of stigma. Once leprosy has
been diagnosed, then it is only a matter of time before people find
out and stigma begins. In either case if treatment is not received
soon enough, deformities will develop - most commonly of the hands
and feet. The act of avoiding stigma by not going forward for
treatment, will eventually cause stigma to occur anyway - this is an
unfortunate vicious circle.
Stigma is more evident when obvious physical deformity is
present; therefore, a job is more likely to be lost due to stigma of
a person with visible leprosy, than if the leprosy is invisible. The
deformity that causes the stigma, often also inhibits the physical
ability to work. It is therefore difficult to separate these two
aspects of the problem.
It should be borne in mind, that the interviewees were expressing
their personal opinions on issues, from their specific viewpoint.
These opinions are subjective, and another person if asked about the
same incident, may well give a different account of events. However,
it was not feasible to corroborate the data gathered, due to the
restrictions of time, and paucity of other data.
Further study is required focusing on the issues raised by this
research, in order to further understand the relationship between
leprosy, stigma and income generation. The initial data gathered in
the course of this study provides a basis for a more detailed,
longer-term research. It is hoped that this study may add something
to the stigma elimination efforts of groups such as the Trust. Such
work is vital to the long term goal of leprosy elimination, as,
until stigma is dealt with, the disease cannot be fully cured.
"The fight is not over yet. But it is winnable. There are enough
men and women of goodwill who can spread the word that leprosy is
curable, and that leprosy sufferers need not - must not - be
shunned… Unless the message reaches every continent, every country,
every village, every patient, the disease will prevail in dangerous
pockets." Kofi Annan (21).
*1 48 Holland Drive, Andover
Hampshire, SP10 4LY, UK
e-mail:Calcraftj@aol.com
ACKNOWLEDGEMENT
This is a summary by J.H. Calcraft of "The effects of the stigma
of leprosy on the income generation of leprosy-affected people in
the Terai area of South East Nepal." MSc Dissertation, presented to
the School of Development Studies University of East Anglia,
Norwich, UK; 2004.
This study was made possible with the help of the following
people, to whom I am grateful:
NLT: Chas and Jenny Tanner, Ruth Hunter, Trishna Singh, Community
Development boys, Lolita and Ramesh Chowdry, R. K. Jar, Arbindh,
Kiran Jar, Prabhat, Dumbar, the records department, the Drivers, the
cook.
UEA: David Seddon and Janet Seeley.
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State of Nepal. Himal Books, 2002.
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HELPING CHILDREN WHO ARE BLIND
Authors: Sandy Niemann
Namita Jacob
This material was developed with the participation of communities
all over the world. This English Edition Published in India is an
adaptation of the original book (Published by Hesperian Foundation,
U.S.A.), reflecting culturally relevant needs of issues.
This illustrated book of 173 pages has simple activities for
parents, teachers, healthworkers and others to help children with
vision problems develop all their capabilities. They can use the
information in this book to deepen their understanding of many
topics, including:
- assessing how much a child can see
- moving around safely
- learning activities in daily work
- preparing for school
- supporting parents of blind children
- teaching common activities like eating,
dressing and keeping clean.
Available from:
Chetana
15, Arunachalam Road, Kotturpuram
Chennai - 600 085, India
e-mail:projects@chetana.org.in
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