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

 

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.