Survey Report on
Activities by Joy in Action
Qualitative
Impacts of Work Camps in
Huanan
District (Southern China), China
Takeshi
NISHIO
Director
Nippon Foundation Student Volunteer Center
First Edition:
December 2009
Updated:
October 2011
Table
of Contents
I.
Introduction: Purpose of this Survey
II.
Contents: Qualitative Impacts of Work
Camps
1.
What is Work Camp
2.
Survey Methods
3.
Qualitative Transformations Brought
About by Work Camp
A.
Careers Influenced by Work Camp
B.
Local Residents around Leprosy Recovered
Villages
C.
Influences of Media
D.
Home Reunion Project
E.
Circumstances of Children of People
Affected by Leprosy
F.
People Affected by Leprosy
4.
Summary: from Viewpoint of Empowerment
I. Introduction:
Purpose of this Survey
Today, thanks to the establishment of
multi-drug therapy available free of charge, the society is progressively
shifting towards a world without leprosy. The debate of leprosy within Japan’s history
mainly places its focal point on the compulsory nature of isolating the patients
of the disease. However, disregarding Japan’s century old debate and taking
into account the origin of the disease dating back over a 1000 years, the
current action of eliminating leprosy could be noted as “realization of
mankind’s fervent wish.” This accomplishment,
however, would only satisfy the medical aspect of this “illness”, equally
significant social aspect of stigma and discrimination, negative impressions,
and misconceptions in the society left unsolved. Considering the social
influences and issues associated with leprosy, the disease is yet unconquered
in the truest sense. In such present situation, a sense of crisis is brought up
that the elimination of the disease would concurrently reinforce the oblivion
of leprosy and the history of inhumane persecution and violation of the human
rights. Therefore, it is of crucial importance not only “to aim for the
elimination or creation of a world without leprosy” but rather “to strive for
the establishment of a world free of any medical and social issues associated
with leprosy” (Dr. Yuasa 2002).
In 2001, a group of students from Japan and Korea initiated a kind of volunteer activity called “work camp” at leprosy recovered
villages in China.
At first, no local Chinese students participated in this activity. However,
after the establishment of a non-governmental organization named Joy in Action
(JIA), constant growth of involvement by Chinese students was observed, which
accounted for 90% of total 1866 campers (camp participants) in 2010.
Graph
1) Transition in the Annual Number of Campers at Leprosy Recovered Villages in China
Source: Social Change in South China “Leprosy and
Restoring Dignity” by Ryotaro HARADA at ASEAN office in Jakarta
Today, as work camp has become indigenized with
initiatives taken by local campers in China, new attempts and approaches are
made by Japanese campers to further spread and implement this activity in other
countries such as Indonesia (since 2009), Vietnam (since 2009) and India (since
2011). However, the evaluation of the work camp is insufficient, the potential
of this activity yet unknown. Therefore, this survey report aims to define the
potentialities of the work camp by focusing on the qualitative transformation
brought about to leprosy recovered villages and local residents.
II. Contents:
Qualitative Transformation Brought About by Work Camp
1. What is Work Camp
Work
camp is a kind of volunteer activity in which campers stay in particular
communities for a certain period of time, often with social issues, and make contributions
to the local people by improving the living conditions through implementation
of simple construction works. Average camp lengths usually last for about 2
weeks, but could be as short as a few days held on weekends or as long as
several months.
Originally,
this activity was initiated by the Religious Society of Friends (also known as
Quakers) after World War I. It was first introduced to Japan by American Friends Service Committee when the Great Kanto Earthquake
struck the island during Taisho Era in 1923, then indigenized after World War
II. Today, many various non-governmental organizations conduct work camps all
around the world; in recent years, some universities have begun to introduce
and utilize this activity as a part of their educational curriculums.
Work
camp is composed of two words, work (labor) and camp (cohabitation). These are
the two significant key factors of this activity. Graph 2 below indicates
direct and prospective achievements brought about by work camp. While work
provides improvement in living conditions through building toilets and
kitchens, camp life contributes to building up emotional connections through a life
shared under the same roof.
This survey is aimed to study the nonphysical
transformation through work camp coordinated by JIA. Hence, out of the
previously alluded two key factors, particular note is taken on the
“cohabitation” aspect. Considering JIA’s activity focused on leprosy-related
issues, especially stigma and discrimination associated with the disease, this
emotional relationship or strong bond between people would play a significant
role.
Graph
2: Two Components of Work Camp
|
Work
|
Camp
|
Literal
Translation
|
Labor
|
Camp
|
Interpretation
|
Physical
work
|
Cohabitation,
living together
|
Rephrase
|
Build,
construct
|
Befriend
|
Outcome
|
Toilet,
kitchen, road pavement
|
Personal
relationship, bond
|
Ultimate
goal
|
Fulfilling
life condition
|
No
stigma and discrimination
|
Pointed
comparison
|
Pursuit
of physical affluence
|
Pursuit
of qualitative affluence
|
Photo of Work Camps
2. Survey
Method
Stigma and discrimination are the main
themes of observing “qualitative transformation” brought about by work camp. It
is, however, extremely complicated to implement the most proper survey as well
as to distinguish adequate results that indicate transformation. Yet, in order
to represent the efficiency of work camp in the most persuasive manner, following
questionnaire has been handed out to the residents of leprosy recovered
villages on a trial basis for numerical data.
Graph 3) Draft Proposal of Questionnaire
After
implementation of work camp,
frequency
of phone calls from relatives
(increased / no change / decreased)
frequency
of visits by relatives
(increased / no change / decreased)
opportunity
of visiting your hometown (increased
/ no change / decreased)
opportunity
to go outside the village
(increased / no change / decreased)
discomfort
when going outside the village (increased / no change / decreased)
frequency
of local people visiting the village (increased / no change / decreased)
Yet,
the above questionnaire and answers would not be sufficient for obtaining a concrete
understanding of leprosy from the aspect of stigma and discrimination, as this
issue is a compound of complex relationships among families, local residents
and self-awareness of people affected by leprosy themselves. Hence, instead of
depending on numerical data to explain “how the issues of stigma and
discrimination changed through work camp”, it would be more persuasive to use
another method of case study approach.
According
to JIA, annual number of campers exceeds 1800 as of 2010. This means that there
are over 1800 personal relationships formed, each having its own various dramas
and life stories. This survey will pick up and focus on some of the cases as
symbolic representations of qualitative impact of work camp. Leprosy recovered
villages surveyed are listed as follows, implemented by Chinese students who have
participated in work camps.
Graph
4) Candidate Villages for Survey and their Characteristics
Name
|
Province
City
|
Organization:
China /Japan
|
Beginning of Camp
|
Characteristics
|
Heku
|
Hunan
Jishou
|
JIA
Yichan Committee
FIWC
Kansai Committee
|
February
2002
|
Scholarship
programs by Back Up Team (BUT), organized by graduates of JIA
|
Linghou
|
Guandong
Chaozho
|
JIA Guangzhou District Committee
FIWC Kanto Committee
|
November
2002
|
A
Japanese camper lived in the village for 1 year
|
Pingshan
|
Guangxi
|
JIA Guilin District Committee
FIWC KyushuCommittee
|
February
2004
|
“home
reunion project” by students
|
Tengqiao
|
Guandong
Gaozhou
|
JIA
Guangzhou District Committee
QIAO
|
February
2004
|
Public
awareness activity at local high school, visiting of high school students to
the village
|
Shaduxi
|
Hunan
Jishou
|
JIA
Jishou District Committee
QIAO
|
August
2007
|
|
3. Qualitative Transformations Brought
About by Work Camp
A. Careers Influenced by Work Camp
The
first transformation could be observed among the local motorbike taxi drivers.
Due to majority of village site locations in remote pathless areas far from the
main street and surrounding communities, campers cannot use public means of
transportation. They need to either hire a car with a driver or call for
motorbike taxi. However, it is not easy to find local drivers who would be
willing to come near the village after a long standing negative image of
leprosy inculcated. Such misconception is caused as most local people lack
access to updated information and do not hold appropriate knowledge and
understanding on the disease.
According
to a local driver in a leprosy recovered village named Linghou, drivers from
other regions tend to show more resistance over local people. Drivers, who take
the campers to the village with reluctance, would be astonished to see campers
interacting with villagers (former leprosy patients). This implausible
experience triggers a significant shift of the previously fearful image of
leprosy.
One
of the local drivers said: “I have gone near Linghou village when I was 7 or 8
years old. But never did I dare to go inside. I couldn’t believe my own ears
when the students asked me to take them to Linghou. Why would they want to
visit such a village? I wasn’t sure if it’s safe. But seeing those students
interacting with the villagers friendly, I came to realize that it is not
dangerous. Now it is my habit to enjoy a cup of tea with the villagers, while
waiting for the students to get their stuffs packed up to head back home. Every
motorbike driver in the town knows about Linghou.”
As camps are carried on for longer time, many
campers come to visit the villagers on weekends and holidays off camp seasons. In
such cases, it seems that there are always dedicated drivers who would drive
the campers to and from the villages. They do this a part of their job, not as
a volunteer. Similarly, there are other careers associated with the villages
such as construction workers to implement work projects with campers during
work camps and store deliverymen to bring beverages for campers. These local
people have been unexpectedly introduced to the activities of campers at
leprosy recovered villages through their careers, overcoming the bad images of
leprosy in a relatively spontaneous manner.
All
in all, observation could be made that the shift in the contents of qualitative
transformation is proportional to time length spent in the villages. In fact,
such shift is most evidently observed among Linghou, Pingshan and Tengqiao with
relatively longer camp durations.
Motorbike
driver in Linghou Village
B. Local Residents Around Leprosy Recovered
Villages
The
first significant qualitative transformations on negative images of leprosy
could be observed among people with careers associate with work camp. The next
significant changes would be of the local residents in the nearby markets.
Here
is what a villager named Jingjin WANG described of the shift in his life:
“Stigma and discrimination associated with
leprosy was everlasting and unbelievably deep-rooted in the society. But these
days, especially after 2001 when a group of students began to visit our
village, improvements have become evident. These students stay in the village
for certain period of time, sit down at the table and would go shopping with us
to the nearby market. At first, our neighbors were astonished to see such young
students holding our hands and walking around shopping together. They couldn’t
believe their own eyes. But that’s no surprise. Over decades, they had been
fearful of us and the village as leprosy affected, and never would they dare to
get closed to. But all of a sudden, they see young students going in and out of
the village. One time when a villager and a student went shopping to the nearby
market, local people in the market stiffened in surprise, staring at them with
their mouths open agape. But after this scene had been witnessed for several
times, local people gradually came to understand that leprosy is not such a
dangerous disease. Today, we don’t have to suffer from stigma and
discrimination.”
T-shirts originally designed in work camps
also wield unexpected influence over local people in the market, which campers
often wear during the camp. Local people seem to be reminded of work camps in
leprosy recovered villages when seeing these camp T-shirts.
In Tengqiao, it is reported that the campers received a little discount while
shopping. Further, campers in Tengqiao have begun to visit a local high school
as one sphere of public awareness activity in 2008, which has stimulated and
gradually influenced the students. Some high school students have become to visit
the village during camp and even off camp seasons individually.
As in
the above case studies, qualitative transformations brought about by work camp
could first be observed among taxi drivers and construction workers associated
with work camp through their careers, followed by the spread to local people in
the market who see campers interacting with leprosy recovered villagers. These
are both visible accomplishments through direct contact of local residents and
campers. In the next step, you can observe qualitative transformations going
beyond direct contact.
C. Influences of Media
Here
are two episodes which signify the influences of media. One time when Ryotaro
HARADA, the Secretary General of JIA, his wife Jieshan CAI, their little
daughter Linghou and I had dinner together at a food stall in the urban area of
Chaozho city after survey in Linghou village, the woman at the food stall communicated
to Jieshan: “I have seen you on TV. Linghou has grown-up!”
During
the survey in Tengqiao, which is over 12 hours apart from Linghou by bus, a
villager came up and asked me, “Your friend, Ryotaro, how is he doing lately?”
“He is doing alright” I said. The villager then continued to ask “How about Linghou?
How is she doing?” A few years ago when Ryotaro had visited Tengqiao for once,
Linghou was still unborn. The villager explained to me that he had known about
the baby on TV. The woman at the food stall in Chaozho and this villager in
Tengqiao 12 hours apart from Linghou, had both seen the TV program.
These episodes remind us of the importance
and influences media hold upon us. But not only is it the TV programs featuring
Ryotaro that have influences to the society. A few years after work camps began
in China,
local newspapers and stations began to report and broadcast these activities.
Three times by local station in Pingshan, four times by local newspapers in
Tengqiao and one time by university public relations magazine have been
covered. Linghou village with the longest
history of work camp has been picked up many times over any other villages. Due
to these media influences, acknowledgement of leprosy recovered villages is
improved and changes are brought about listed as follows:
· Visit
by officials (Tengqiao)
· Support
from local volunteer organizations (Linghou, Pingshan)
· Performance
by opera company (Pingshan)
Qualitative transformation first started off
from a small circle within possible direct contact with the campers who take
part in camps, then spreading outward to reach the domain where direct contact
with campers no longer exist. In other words, here it is indicated that work
camps could bring influences among various people in a larger scale of the
society including individuals who are not directly related to leprosy
associated issues.
D. Home Reunion Project
One
of the most serious issues associated with leprosy is the relationships between
people affected by leprosy and their families. In general, when people suffer
from difficult-to-treat diseases, it is usual that family members cooperate and
take initiatives to form self-help groups to confront and fight against the
challenges and difficulties they face. Yet, despite of a huge number of leprosy
support organizations activating in Japan, there is barely any
organization initiated by the family members, which symbolizes the profoundness
of family relationships.
Under such condition, home reunion project in
Pingshan village is of a highly valuable activity implemented in work camp.
This project aims to accompany villagers to visit their hometowns where most
villagers had been apart from for decades. The one who initiated this activity
is a young camper named Ronghui LI. At first, he asked every villager in Pingshan
whether they wanted to return to their hometown. But no one nodded. Realizing
that further conversation would be meaningless without a trustworthy
relationship with the villagers, Ronghui first nominated a villager who seemed
to carry relatively high possibility of achieving this challenge. This villager
had a comparatively good relationship with her family members and had been returning
home earlier every once in a while. However, she was incapable of meeting her
family members recently due to her old age and health condition that held her
back to travel on her own. For such a villager, visiting hometown seemed
relatively simple if only there were campers to take care of during the long
traveling distance. When implementing home reunion project, campers not only
accompanied the villagers but also recorded the trip in a video camera to show
it to the other villagers who may likely be motivated. Since the first project
implemented in October 2006, about 10 villagers have successfully visited their
hometown up to date.
Ronghui has already graduated from the
university, now working in Guangzhou.
However, younger campers have now taken over his position, continuing to pursue
the home reunion project in accordance with the following key factors:
1.
To bond trustworthy relationships with
the family members of the villagers
2.
To introduce villagers’ family members appropriate
medical knowledge and to extricate them from superstition on leprosy
3.
To have students accompany villagers and
achieve home reunion project by taking advantage of the Chinese culture of “treating
the guests”.
4.
To make sufficient preparation and
collect precise information on the villagers and their families in advance, in
accordance with the list below. Instead of a formal survey, collecting information
from villagers during camp would be most ideal through natural conversations exchanged
with campers during break time or while helping villagers with house chores
such as washing clothes and cleaning rooms.
Information
to be collected:
· Villagers’
personal information:
Hobbies:
useful for villagers and campers to open up and enjoy conversations during
traveling time
Skills:
to seek for the possibility of villagers’ independent life after returning to
hometown
Others:
frequency of returning home in the past, relationship with family members,
language, ethnic group, census registration, etc.
· Health
condition of the villagers:
Condition
of ulcer, ambulation dimension, illness, psychological condition, severity of
carsickness
· Information
of family members:
Names,
relationships, occupations, ages, frequency of contacts with villagers, present
address, correspondence procedure, language used, feelings towards villagers
Further,
in order to hold successful home reunion project, several possible patterns
should be simulated in advance. Following is the list in the order from most to
least difficult cases to be implemented:
1.
Return home and live in hometown with
family members
2.
Stay at home for a few days
3.
Family members come to the village to
see the villagers
4.
Record a video letter from family
members to villagers
5.
Have family members write a letter to
the villagers, to be delivered by campers
As
mentioned in the beginning of this section, family relationship is one of the
most serious issues associated with leprosy. Therefore, the number of
unsuccessful cases on home reunion project would outnumber successful cases,
which leaves campers with a huge sense of helplessness.
A
student named Lan LUO shared a story about a villager called grandma Zhong.
Grandma Zhong, who had never mentioned about home reunion project at first,
suddenly asked for campers’ support to go see her family. Campers, after
fishing around in their heads, came up with an idea to invite grandma Zhong’s younger
brother or her grandchild to the village. If this turned out unsuccessfully, they
intended to visit her family and record or take photos of her brother and
grandchild. This home reunion project was intended to take place in August
2009. However, the day before work camp, grandma Zhong had passed away. In the
end, her brother never visited the village. “Perhaps grandma Zhong had sensed her
inevitable hour. Maybe that is why she asked us to meet her family one last
time.” Lan prayed in front of grandma Zhong’s grave in the village and spoke to
her:
Grandma
Zhong,
Praying
in front of your grave,
I
once again ponder,
The
meaning of home reunion for the villagers.
A villager who successfully visited his
hometown retuned back to the village and commented happily:
“3 unbelievable miracles happened.”
First is to have returned back home
while still alive.
Second is to enjoy present life filled
with happiness.
And
finally, your
(our) world changes topsy-turvy.
E. Circumstances of Children of People
Affected by Leprosy
Stigma
and discrimination associated with leprosy go beyond family members of those
affected by the disease. In the 1950s of Japan, there were many patients of
leprosy which caused serious stigma and discrimination against their children.
However, as quarantine policy is not implemented and there is nearly no new
case detection today, school attendance and education issues seem to be a
foregone image in the society.
However,
in remote areas apart from the central government in China where leprosy policy has not
been thoroughly penetrated, school attendance and education still remain
serious issues for the children of leprosy affected persons as of 2009. Here is
a case study in relation to work camp.
Yoshimi KOMAKI, a person affected by leprosy
in Japan, visited a leprosy
recovered village named Tuguang, located in Wuchuan city in the western region
of Guangdong province in February 2006. There, Yoshimi meets two young teenage girls around
the age of high school. One early morning, one of the girls named A Rong is
about to get on a motorbike to drive to school. The other girl, A Ping, remains
in the village to take care of her physically challenged mother due to the
aftereffect of leprosy. Yoshimi watched this situation silently.
After a few days, A Ping called Ryotaro at
JIA, confessing in a quiet voice “I want to study”.
A
Rong was fortunate to attend school with scholarship, while A Ping could not.
When this caught Yoshimi’s ear, he bid for assuming A Ping‘s school expenses.
This enabled the two girls to go to school together. Yoshimi himself could not attend
school during his childhood due to the disease.
Work camp had been held in Tuguang since
February 2004. One of the campers who took part in the camp and went out with A
Rong found employment in an automobile company in Guangzhou after his graduation, the biggest city in the southern region of China. In the
meanwhile, he was doing a side business on the Internet. A Rong and A Ping,
after graduating from high school in 2009, moved out of the village and headed
to Guangzhou. While
it is often extremely difficult for children of leprosy affected persons to
leave the village due to the hardship of economic context, the two teenage
girls were capable under the condition of helping the camper’s side business.
In
August 2009, Yoshimi paid a visit to Guangxi province to attend JIA’s Annual
General Meeting. A Rong and A Ping assisted Yoshimi’s transportation by
wheelchair from Guangzhoucity in Guangdongprovince to
the venue. Yoshimi suggested A Rong and A Ping to go on to study in college and
offered his financial support on their school expenses. The two girls, however,
chose to work in Guangzhou after all.
The camper who invited A Rong and A Ping to Guangzhou speaks fluent
English and Japanese. It is common in such case that the two girls who had
lived in a closed segregated community would find inspiration in the outside
world and foreign language, gaining connection through work camp to encounter
campers and foreigners. The two girls, while turning down the offer from
Yoshimi to live in Guangzhou,
decided to become members of the Back Up Team (BUT), which consists of graduate
campers to support the activities of JIA.
Today, BUT supports JIA in various ways; one
of them is the scholarship project for children of leprosy affected persons
living in villages. Following is a speech made by the JIA staff in charge of
this project at the Annual General Meeting.
The growth of children is the hope and
dream for all persons who live in the villages.
There should not be any children who cannot
attend school due to their parents’ disease.
That is why I am taking charge of the
scholarship program in BUT.
Yoshimi, who listened to the speech, provided
donation worth a hundred thousand JPY right away.
I do not have a single graduation certificate with me.
It is because I was infected by leprosy and was forcibly quarantined.
But always did I want to study.
There was plenty of time in the leprosy center; yet I could not do
anything because I was pessimistic.
I don’t want children in the villages to suffer the anguish of despair
that I experienced.
That is the reason I donate this money.
It would be fulfilling that this donation be used effectively.
Komaki Yoshimi
F. People Affected by Leprosy
Lastly,
the most important aspect of qualitative transformation brought about by work
camp is focused on people affected by leprosy.
In
Shaduxi, it is reported that the villagers who were socially maladroit at first
became very sociable as work camps continued to be held for years.
At first, in Pingshan, villagers often used
to ask campers “Aren’t you afraid to see my deformed finger?” This has
gradually changed over time, and now villagers would walk up to the campers and
greet instead “you are back again”, capable of exchanging daily conversations.
As being segregated in villages of remote
areas, villagers were forced to live in an extremely closed limited world.
Their image of the “outside world” remains the same society as that of during
the worst time they had experienced with full of stigma and discrimination
against leprosy.
Thence, most villagers are left with no
choice but to shut their hearts and live with stealth. In other words, they
live a life without confidence and their eyes dropped. This unhealthy condition
may be causing the villagers to ask the enthusiastic campers willing to
approach and shake hand the question “aren’t you afraid of me?”
Villagers’
consciousness and behaviors, however, are changing gradually step by step through
interactions with campers. They are capable of recognizing the shift occurred
in the society towards understanding of leprosy by seeing young campers who do
not show any fear or rejection against them.
A villager in Pingshan stated:
I would not
condemn those who fear me. But it would be most encouraging if they could show
you of their fearlessness through their attitudes.
4. Summary: from the Viewpoint of
Empowerment
Qualitative
transformations brought about by work camp indicated in the above, this section
aims to observe the change in the light of “empowerment.”
“Empowerment” was first based on a concept
mainly for those in need of support on interpersonal relationships in the field
of public welfare, but is also applied and utilized in the third world in the
development field today as “for those deprived due to certain reason to gain
power”. In particular, this focuses on disabled persons and minorities driven
in the corner to gain power from the society through various approaches.
It
should be noted that empowerment not only points out the social circumstances
of sweeping certain people out of the society, but also the negative minds of
resignation by persons concerned to give up and accept the unjust circumstances
they live in. In other words, problems also lurk in the minds of the persons
concerned.
As
mentioned previously, many villagers in the leprosy recovered villages tend to
think that “nothing can be done for those who fear our appearance”, giving up
and accepting the circumstances of stigma and discrimination associated with
the disease. Yet campers’ natural positive attitudes and behaviors of
acceptance help them to realize of their own negative situational awareness and
the change in the society.
The
ability of persons concerned to evaluate themselves from objective perspectives
and take initiatives to seek for possible changes differs from one person to
another. There are, however, successful cases such as Yoshimi from Japan and Yangkeng
village in which villagers change through work camps, proactively giving
lectures in front of the public and taking part and making commitment to
improve the current situations.
In the meanwhile, the high average age of
people affected by leprosy is one aspect that would be called into account as a
difficulty to expect initiatives and proactive participations. Yet there are
small progresses observed individually. As in the previous section, villagers
who used to ask “are you not afraid of me?” to the campers would now say “you
are back again”, which could be evaluated as a small yet significant progress
for those who have been segregated from the society for decades.
Furthermore,
here is an episode in a village called Jiaping, located in Guangxi province. A
villager with disabled feet received a walking aid from a local NGO; it was,
however, left unused as the villager did not know how to use it properly. But
when work camp began to be held and campers showed him how to use the walking
aid, on the last day of the camp, the villager used the walking aid for the
first time to see off the campers to bid farewell. This is also a very small,
yet significant and assured progress brought about by work camp.