I am Jiang Zongfu, 82 years old, from Guan Jia Ping Zi Home for Leprosy Rehabilitation in Huidong. I also have a brother. Other than my hearing problem, I still have a healthy body. I have 2 sons and 1 daughter, they all have their old family; I also have grandchildren. The living environment in the Home has been improved a lot, there are people taking care of our meals, we also get some small subsidy from the government that is good enough to cover our daily needs. The government will also take care of my funeral when I pass away. I can also go back to my home to visit the “strangers” – family from time to time, they also care about me. One of my grandchildren is going to get married this year, they invited me to the wedding. I decided not to go as I did not want to add extra burden on them, they also have their own economic issue. My grandchild promised to bring his newly-wed wife to visit me.
Life had never been easy for me in the past, it was not the life for human being. I married a girl from the same village in 1956 when I was 20. I made some new clothes for her and had a simple wedding banquet at home. We had two sons but we were so poor that both of our sons died. I got a job from the production brigade from our village to make charcoal that I had a stable income so that I could support another 2 sons and my daughter. We had a healthy family though life was not easy.
I found plaque, swollen on my skin; I could not sweat and my skin was as rough as skin of trees. I even had no feeling, other people told me that I might have got leprosy. I was terrified so that I went to the county hospital for a detailed checked. They sent my blood to Chengdu for diagnosis. Doctors in the hospital was so scared that they did not even charge the medical fees. I felt desperate and hopeless when I left the hospital. I wanted to jump from the bridge, but my brother grabbed and saved my life. He said, “you still have wife and children, you have to look forward; how can they live without you?” Villagers from the same production brigade looked down on me, they tried to escape from me. Later, they asked me to move out of the village and I then lived in the abandoned brick kiln for 2 years, and never went back home as I was afraid that I might transmit my family and the stigma from the public.
My brother came to me 2 years later in 1973 that the officer from the township government told him that I could move to the rehabilitation home for leprosy patient in Huidong. I then walked to the home with some potatoes and fried wheat flour. It took me three days to get to the home, I slept in the ravine on my way. When I arrived at the home, it snowed heavily. I paid RMB69 to the management staff of the home when I got there, they offered me a room and a job to shepherd the goats. I lived in the home for 10 years, and my wife could not support the life of herself and the children as she did not have any working skill. She then remarried and one of the sons followed her to live with her new husband. My brother had taken care of my daughter and other son for 10 years until I moved back from the home in Huidong.
When I got back home, I was given some land and lived on the dam for 5 years. When My son and daughter got married, I moved back to the rehab home in Huidong as the economic condition of my children could not afford me living with them. Other PALs could not understand why did I move back to the rehab home, as there were too many elderly PALs, there were not enough people to take care of them. We had to overcome all the problems by ourselves.
Click heThere had been a severe drought in Huidong this year, younger villagers needed to walked more than 4km carry water from the water source for the PALs and villagers. That brought lots of inconvenience to everyone in the home. All the plantation of crops was delayed due to the drought. Project staff conducted a detailed survey for the feasibility of water project for the home and had a general meeting with all PALs and villagers regarding the water project. Agreement of implementing water project and agreement of labour input for the water project were duly signed after the meeting. Location for the water tanks and size of the water pipes allowed by the government was also confirmed. The board of The Leprosy Project received and approved the plan and budget for the water project which shall be implemented after the rain season, by end of October this year. The project shall benefit 81 PALs and villagers from 43 households to solve the problem in shortage of water for daily household use and irrigation.
re to edit.
12 members from our community management committees from 6 villages participated in the training held in Xichang in Mid-July. Participants understood the importance of the roles of community management team in the development of their communities as well as the principles, methods and procedures through sharing and summarizing their experience in implementing programs in the past. It was the first time the members from our new villages from Yanyuan, Yuexi and Mianning participated in the entire training in program implementation through participatory approach.
The story of Li Runlian began before she was born 82 years ago. This is her story as told to our Village Coordinator in Luding.
I am now 82 years old; it is a miracle that I am still alive today. I was born in Chuni Township of Luding County. My father passed away when I was still in the womb of my mother, and my tragic life began since then. My mother re-married and later I became the elder sister of two brothers and 1 sister. One of my brothers married and went to live with his wife’s family, the other brother left home without a word. My poor little sister, she was born mute.
I was diagnosed with leprosy when I was two and just learning to walk. Red spots and rashes were found on my hands. I received various treatments for years but saw no improvement. My family then locked me up at home to stop the neighbors from finding out. I didn’t feel it was that bad in the beginning, I helped my mom do some household chores. But my illness got worse; all of my limbs began to bend so that I could not do anything at home. My step father began his day by abusing me; I was beaten every day. I tried to kill myself by jumping off a cliff, but I was dissuaded by passers-by. My mother eventually found out about my attempt to commit suicide. She could not bear my being abused by my step-father so she borrowed some money from relatives and walked for a whole day to bring me to the leprosy rehab village where I am now living.
It was a summer day in July of 1970, when I was brought to this mountain village with wooden huts; located at the other side of the river. There were many other patients living here. When I first came here, my disability was more serious than the other villagers. I was bullied by them and most of the time went to sleep on an empty stomach. I ran away to live in the cave on the top of the mountain. I survived by growing and eating raw turnips and other vegetables. One day the doctor from the village hunted pheasants in the area and left a fire burning. I kept the fire going and was finally able to cook myself some hot potatoes and corn. During those years of harsh life in the cave, my health deteriorated further. After two years I found out that the situation in the village was better managed and more under control so I decided to move back to the village.
While my mother was alive, she came to visit me twice a year; she cried profusely every time she visited me. Over the years the society and livelihood had been improving. I received both financial and physical support from the Government. I wrote to my mother inviting her to visit me. She always replied by saying: “You silly girl, you don’t really want to see me; you only want to share with me the meat that was given to you by the Government.” Sadly, happy life like that did not last long, my mother passed away. My heart was broken into pieces. I could not do anything but cry. My mother had gone through the worst days with me and now she could not enjoy the fruit with me. How could I enjoy it by myself, alone? That was the biggest regret in my life; I lost the only person who ever loved me……
In 2008, Rotary Clubs and The Leprosy Project visited our village. They provided me medicine and treatment for my ulcers. Before they came I was taking 5-6 pain killers 5-6 times a day. I still could not bear the pain. Since I was taken care of by the healthcare worker Ms. Wang Li who was trained by The Leprosy Project, my ulcers are much improved. I do not have to take so many pain killers, and of course I have been much happier. I no longer worry about my living as I have been taken good care of by the Project and the Government; I have no worries on any economic issue. I have my own money to spend on food. I have never been happier.
Words from the recorder:
Ms. Li has been living a very harsh life since she was diagnosed with leprosy at the age of 2. She lost both her hands and feet forcing her to walk on her knees. Despite her circumstances, all I see is her smiling face every time I visit this village. She not only takes good care of herself, but she also farms on her land even she is now 82 years old. Her fortitude, optimism and attitude towards life have inspired every one of the Project office.
Last year the Government of China announced that from January 1, 2017 onwards, all foreign NGO’s in China would be required to register. For many reasons this has been problematic for the thousands of NGO’s operating in China, many of whom have suspended operations indefinitely.
We are pleased to inform you, however, that The Leprosy Project has successfully registered as a Foreign Non-Governmental Organization in the Province of Sichuan, People’s Republic of China on May 11th, 2017. Our registration number is G1510000MCW169967P and it was officially announced on the Central Government website on May 31st, 2017.
Although The Leprosy Project is small, operating on a tight budget, it is among the less than 1% of NGOs that have successfully registered. Other successful NGO’s include large well-funded groups such as the Li Ka Shing Foundation and the Bill and Melinda Gates Foundation. This reaffirms our commitment to continuing to serve the people affected by leprosy and their families in the 16 leprosy villages and centers where we work. This includes 5 new villages and 2 new centers that the Center for Disease Control of Liangshan Province requested we take on in 2017, after seeing the success we have achieved in the last 9 villages we service.
We appreciate the support of the Health and Family Planning Commission of Sichuan Province during the registration process and for agreeing to act as our Supervisory Unit as required by the new law. We shall abide by the Law of the People’s Republic of China on Administration of Activities of Overseas Non-Governmental Organizations on the Mainland of China in the operation of our service for the people affected by leprosy in the Liangshan Prefecture.
We would not have been able to achieve these results without the continued support from our donors and partners. You make our work possible and we all thank you for that.
We have a lot of work ahead of us in the 5 new villages and 2 new centers; we need your support in order to continue to help the people affected by leprosy.
Leaving home was a decision supported by his mother and sisters for they too hoped for survival opportunities for Qian outside Zhaotong. In his hometown.
Embarking on his first ever journey, Qian had only ¥5, equivalent to less than one US dollar today. Begging along the way, he found an orphanage he thought would be his refuge. The orphanage however, drove him away after discovering about his illness. Wandering from place to place, he ended up in Puge where he begged for a living and found shelter in a cave in Yongan, a scarcely populated town. The cave was his home for the next six years. With some simple farming, Qian was able to sustain a living with his own crops. Darkness and threats from wild animals were not as bad as the worsening of leprosy. The lack of medicine led to the development of ulcers on his legs.
Eventually he met Jike Mosu who told Qian about the Leprosy Rehabilitation Centre in Xiangyang. Jike arranged for Qian to stay in a straw hut. He even arranged horses to transport Qian's belongings and food from the cave to his new home. The staff at the centre were friendly and helpful. Patients were allowed to stay as long as their illness required them to or if they wished to even after their recovery. There were approximately 100 leprosy patients.
Qian's condition, however, deteriorated.
His life was hard. Although he was allocated 20 acres of farmland, leprosy had led to permanent impairment of his legs and he had to walk on knees. His finger joints were so disfigured that he developed the condition known as "clawed hands”. To work in the fields, he invented his own tools and equipment that enabled his movements in the fields and farming activities.
Many times he thought of ending his own life because of the pain and sufferings caused by leprosy but Qian was strong. He hung on because he had sworn he would leave his hometown to live. He was hopeful about his recovery and reunion with his family one day. His uncle’s advice became his motto and he was determined to live. Perseverance proved its worth when the multi-drug therapy (MDT) became available and Qian's leprosy was cured. The disabilities, however, were permanent.
As the world view changed leprosy drew more attention and, efforts were made on rehabilitation and educating the community about the illness. While discrimination against leprosy patients was still common, more services were developed by charity organizations and NGO's to support patients. Recovered patients began reconnecting with society. In 2009 Qian with the help of The Leprosy Project and Phoenix TV was able to reunite with his family and friends in Zhaotong. After years of living as an outcast, it was a comfort to meet his family, nephews and their families and children. He applied for residence in a home for the elderly in the area but due to his history of leprosy the home refused him. He decided to return to Senkeluo, a small village in Puge where he had lived for so many years. Thanks to the support from the staff at The Leprosy Project he had been able to live independently by farming and selling his own produce.
Qian had experienced misfortunes and hardship throughout his life but he was thankful for the opportunities he had had for restarting a healthy and independent life. In 2013, when he learnt about the earthquake in Ya-an on 20th April, he decided to return the favors he had received by contributing ¥5,000 to the victims who suffered the loss of homes and families like he did years back. Mr. Lin from the Education Bureau in Sichuan advised him to keep some of his savings and donate only ¥150. Qian hoped the survivors of the disaster area would summon their courage and face the difficulties ahead. Qian truly believes there is always hope.
He happened to have the chance to visit Er-mei Mountain and other places in Chengdu in 2013 supported by kind donations from the society. It was an eye-opening experience and he looked forward to more opportunities in future as the world became more accepting towards patients affected by leprosy (PALs). His uncle's advice echoed in his mind, "Being alive, it’s better than anything else."
The TV documentary “Homecoming Journey of a PAL” produced by Mr. Aaron Ren of Phoenix TV has been broadcaste nation-wide in China. You can watch it here.
Jidi was born in 1972 in Butou village, one of the leprosy rehabilitation villages in Sichuan province. He is the oldest of five, with two younger brothers and two younger sisters. His father was a barefoot doctor, and his mother a farmer. He attended the Temuli primary school in Butou town, a 40 minute walk along a mountain road. In the early 1980s, he and his family moved out of Butou village. In 1996, due to insufficient farmland outside of the village, forced them to move back to Butou village. Jidi spent most of his childhood taking care of his family’s goats, but would play jacks whenever he had a free moment.
Jidi and his family tried again to leave Butou Village, to return to his parents’ home village. Because his father was a leprosy patient, they fell victim to discrimination. Although he showed no visible deformities, the village was small and word spread quickly about their past. As a result, they were forced to move back to Butou village.
Before Jidi’s father was diagnosed with leprosy at the age of 18, he had high status in the village; almost everybody knew him. Therefore, his diagnosis was not kept secret for long. Jidi’s maternal grandparents were both leprosy patients, so Jidi’s mother was very knowledgeable about the disease. The fact that her future husband had leprosy didn’t bother her and she went ahead with the marriage.
After Jidi finished school at the age of 14, his parents arranged his marriage in accordance with Yi tradition. Jidi remembers the ceremony as being fun because they got to eat a lot of good food. During the ceremony, he wore new clothes while his bride wore a traditional Yi gown. If the couple is under 18, it is Yi tradition for the bride to go to the groom’s house for a banquet on their wedding night and return home the following morning after breakfast. Jidi paid a 2000 RMB dowry for his wife.
When Jidi and his wife finally moved in together, seven years after the ceremony. They were both embarrassed. In accordance with Yi tradition they slept in the same room but in separate beds. Their first child was born when Jidi was 24 years old. They had three more children in the years that followed.
In 1996 when he and his family moved back to Butou, he helped his father as a barefoot doctor, which began his exposure to health care work. He worked in health care in Butou village in 2006 and was hired by the Leprosy Project in 2007.
Today, Jidi works as the Assistant Manager of The Leprosy Project coordinating with villagers and health care workers. Jidi says that the best part about working for the Leprosy Project is rehabilitating people. The Leprosy Project’s achievements in the treatment of leprosy patients make him happy and proud. The favorite part of his job with The Project is Community Development and Prevention of Disease. He believes that through community development, the villages will improve their living standards, resulting in better health standards which will aid their efforts in disease prevention.
Although The Leprosy Project has been successful in their efforts to prevent disease and further disability, Jidi is frustrated that the people affected by leprosy have yet to see a significant change in their standard of living. They are eating the same foods they were eating 10 years ago, and their hygiene is still poor. The most difficult part of the Leprosy Project’s work is dealing with hygiene and education. People have been living in these rehabilitation villages for a very long time and it is therefore extremely difficult to change their habits. This is particularly frustrating for Jidi as a community worker. After health care providers clean the patients’ wounds and ulcers, they get dirty again when the patient returns home due to lack of hygiene in their dwellings. The dirt often harbors bacteria and germs, meaning the ulcers and wounds get re-infected very easily. Furthermore, the villagers’ diets lack nutrition – most villagers will have potato soup for almost every meal – which directly affects the healing of the ulcers and wounds.
edited by Georgie Reading
Axi Wujiemo is 30 years old, and arrived in the village in Xide when she was 13, after her parents were diagnosed with leprosy. Before then, she was able to attend primary school, so can speak a little bit of Mandarin, but only enough to get by.
When she was 17 years old she got married and a year later had her first son. Today, she has five sons, the youngest being 2 years old and the oldest 10. Having so many young children to care for is hard because they are not old enough yet to help her or her husband with manual labor or to go out and work for themselves in the fields or factories. However she jokes that when they are older it will still be difficult, saying, “Having five sons is going to be very expensive when they are older! When each of them get married, the dowries are going to be around 12,000 to 15,000 RMB per wife, so it’s going to be so costly when they get to that age.”
In addition to having a large and young family, Axi Wujiemo must also care for her two elderly parents and her disabled half-brother. He has a severe limp and a sway to his walk causing him to require crutches. He lives with their parents in the building constructed for the elderly PALs and those in the village with restricted mobility. She is very grateful to the project for giving him medical advice and help. He receives medicine once a month, which has helped to relieve pressure on the family to provide medical assistance and payments.
Her husband works in the fields most days and helps out around the house when he can, but otherwise will go into the city and get casual jobs. Despite having that source of income, they still need to make more money to support themselves sufficiently.
Eight years ago, The Leprosy Project employed some teachers to come and instruct the women of the village on how to embroider Yi patterns and since then, Axi Wujiemo has been able to perfect some relatively simple patterns. In a month, she can make many individual pieces to sell and provide another source of income. Some of the more complicated patterns take a lot longer and require more skill as there is more detail. She says, “doing the embroidery is great because it’s a fairly simple source of income for me and my family, but sometimes when I am too busy, I don’t have as much time to complete pieces. This is why I normally stick to the simple patterns so I can produce more in less time.” There is not one particular pattern she enjoys sewing the most, she just sews what she likes or what she thinks other people will like.
She has many wishes for the future, those being for her parents to remain healthy, for her half brother’s condition to improve, and for her children to work hard and get good grades at school so they can lead independent and self-sustaining lives. For now, however, she knows there is only so much she can do, so has resolved to continuing her work with embroidery and upholding her responsibility to care for her children and her parents, believing that by helping to make a living, she can make sure her five boys can have a better life than what she had.
Interview and translation by Georgie Reading
Edited by Isobel Caldwell
Walewujian is 30 years old and lives in a village in Xide. She began doing embroidery eight years ago when the Leprosy Project hired some embroidery teachers to come to the village and teach the younger women about Yi embroidery and patterns. Prior to this, she already had sewing skills and would mend clothes and do some simple patterns. However, when they were learning how to embroider, Walewujian would spend extra time perfecting the patterns using discarded templates and instructions. “I feel happy that I have the skill and ability to embroider these patterns, and when I finish a piece and see that it looks good, I feel happy seeing my achievements and the product of my labours.”
Walewujian says that though the patterns they embroider do have meaning and significance in Yi culture, they do not know exactly what any one pattern means. Due to not being able to get an education and not being able to learn how to read or write, the women have had no way to properly record the meanings of each pattern and so they have simply passed the images down through the generations. She says that they are more concerned now with the overall look and aesthetic of the embroidery pieces, and use them to make bags or as patches on clothes.
She does know about the meanings of certain colours that are used. She says that the main traditional Yi colours are red, yellow and black. Fire is very significant in Yi culture, as they believe that you need it your entire life, whether for warmth, light or protection. In Yi culture, they always cremate those who have passed away so fire is present from the start to the end of your life. Red symbolizes fire, yellow symbolizes the flames of a torch as the torch festival is their biggest festival in Yi culture. Additionally, during the torch festival, it is common to see some members of society carrying yellow umbrellas. Black is a very common colour in Yi clothing and culture. Even today, elderly Yi people all wear traditional clothing and you will never see them wearing white, only black with various patterns on them. It represents the Yi nature and character, which is mainly solemn, serious and dignified. Various other colours such as green, pink and blue have been integrated into Yi patterns, but they are mostly used to look nice, rather than hold a particular symbolic meaning.
Walewujian is now able to sew any type of picture or pattern on request, for example, rabbits or dinosaurs, to which she adds a certain Yi flair. Her family encourages her to do the embroidery as it is a ready source of income and is also something that she enjoys. The money she makes from the embroidery is spent on supplies for her family, depending on what they might need most at the time. “I wish to learn more new patterns and incorporate more complicated styles of sewing into my embroidery, so as to further my skill set.”
Walewujian is from Meigu County in Liangshan. When she was 10 years old, her father passed away, and soon after, she was sent to Xide village to move in with the family of her husband to be. She has never had the opportunity to move back to her home village and neither her older sister or younger brother knew how to visit her in Xide, so overtime she has lost contact with them. Her mother moved to Xide village about 15 years ago, so she is able to see her often.
Her family was quite poor and neither of her parents saw education as imperative, so Walewujian was never able to go to school as a child. She never learned to read, write or speak Mandarin, and knows now how much that limits her in daily life. She has four children- one daughter and three sons- and three are currently attending primary school, the youngest not being old enough to begin school just yet. The children help her out around the house when they are home and work hard during the holidays and weekends. She says that her proudest moment was when she had her children, but it gives her even more hope seeing them getting an education. “Education is very important. For example, if you don’t learn to speak, read or write Mandarin Chinese, life will be extremely difficult if you when you go outside of the village, and it will be near impossible to create a prosperous life for yourself outside of a Yi village.”
Interview and translation by Georgie Reading
Edited by Isobel Caldwell