By Joyce Chen, Chujun Liu, Xintong Ye
Special Thanks: Haozhe Li
When entering Mr. Yang’s home, his family was assembling components. His mother’s trembling hands struggled to stuff the lamp wick into a red rubber covering, then hanging a plastic buckle onto it. Mr. Yang said that assembling such a component takes him about 15 seconds, and two of them are worth one cent (in RMB), which means that he could only earn one yuan from finishing 200 of these. A one-meter-high oxygen bottle was hanging on the wall, bags of medicine were stacked on the table, and thousands of accessories were stored in the corner. This is the life of Mr. Yang, one that reflects the current status of many rural pneumoconiosis patients in China.
Pneumoconiosis is an incurable lung disease frequently seen among mine workers, and it ultimately prevents patients from participating in strenuous exercises. Pneumoconiosis patients face many dilemmas.
Individually speaking, many pneumoconiosis patients mainly face dilemmas regarding pain, negativity, and finance.
The sufferings that pneumoconiosis patients experience are hard to imagine. Pneumoconiosis affects patients not only by damaging their organs but also by disabling them. Mr. Chen, a stage 3 pneumoconiosis patient, mentioned how the doctor said his illness was not particularly serious. Still, the doctor forbids him to participate in any housework or chore because of the sequelae of pneumoconiosis. The doctor repeatedly stressed that even if he saw the broom fall to the ground at home, he should not bend down to pick it up as it is very harmful to his body even though he can now move freely. As many pneumoconiosis patients are incapacitated, they have low self-efficacy.
Many rural pneumoconiosis patients feel that they are mistreated. Some patients tried to fight for some of the benefits, but others chose not to. Such examples include that of Mr. Chen. Mr. Chen is a stage 3 pneumoconiosis patient and a member of the Communist party. He believed that he should not bother the government to demand compensation. However, because of this, there is no one left who can offer help to him now. Mr. Chen looks forward to receiving the same support that other patients have but he seems to be trapped by his own identity.
Rural pneumoconiosis patients also carry heavy financial burdens. Mr. Zhu, a stage 3 pneumoconiosis patient, once said that he still chose to keep working after being diagnosed since the economic burden on his family was too much to bear. “If you don’t do this, you have no work to do. It is not easy to find work in rural areas, and only mines came here to hire workers. Farm work only earns 40 cents (in RMB) a day, but digging coal can earn more than one yuan a day.” said Mr. Zhu. This situation is common for many rural pneumoconiosis patients. The increasing burden of money on their family leaves them no choice but to return to the dust-related industries for the survival of their family. As Mr. Zhu mentioned a Chinese idiom, “Knowing that there are tigers in the mountains, I still need to go there.”
In addition to individual dilemmas, rural pneumoconiosis patients are also excluded from welfare systems.
Many rural pneumoconiosis patients couldn’t get their occupational disease certificates, either because they did not work in state-owned mines or the mines they have previously worked in have now been closed down. Mr. Yang said he had worked in both state-owned and privately owned mines for more than 30 years. Technically speaking, he should have been able to get an occupational disease certificate after being diagnosed. However, he couldn’t get it simply because the state-owned mine he worked in was closed down, so no one was there to take the responsibility. Mr. Yang’s illness has already progressed to a severe stage, making him dependent on an oxygenator to breathe every day. In addition, the meager salary he, his wife, and his mother earns from assembling light components is barely enough for them to make a living since both him and his mother need medication.
To solve these dilemmas, different groups have already started to take action. Government, NGOs, and even patients themselves work hard to improve this situation.
Many provincial governments, playing roles like trailblazers, have started to cope with these difficulties. For instance, in the “Thirteenth Five-Year Plan for Prevention and Control of Occupational Diseases in Jiangxi Province” promulgated in 2017, the government proposed implementing relief and protection measures and including eligible pneumoconiosis families in the scope of social assistance. Such examples include subsistence allowances and temporary and major medical insurance treatment (Hong). The Health Committee of Luxi County in Jiangxi province has also launched a policy this year, allowing pneumoconiosis patients who have not yet received an occupational disease identification to obtain one. The procedure involves having their credentials of involvement in dust-related work signed by the Health Committee of Luxi County and verified by a qualified hospital. Suppose they receive the occupational disease appraisal certificate later, in that case, they will have the opportunity to apply for assistance from the Poverty Alleviation Office of the Civil Administration and get a reimbursement rate of up to 95%. Currently, the reimbursement rate for pneumoconiosis patients without occupational disease identification is only about 60% or less, so getting a reimbursement rate up to 95% would save them a significant amount of money, which would alleviate their financial pressure.
Besides the “trailblazers,” NGOs, playing roles like cultivators, also provide various kinds of help. Love Save Pneumoconiosis, a charity dedicated to preventing, relieving, and eventually eliminating pneumoconiosis, also offers financial and material assistance to pneumoconiosis patients. Some of the help provided includes offering them funds for education and oxygenators (“Rescue Project”). Love Save Pneumoconiosis staff also leads regular rehabilitation and care visits for patients (“From Riding a Bike…”). In addition, people like Jiang Nengjie, director of the documentary “Miners, Groom Men, Pneumoconiosis,” also join the community to help the public know about pneumoconiosis.
Other than receiving help from others, some rural pneumoconiosis patients begin to make a living by starting a business. Mr. Ying from Shangli County, Jiangxi, has established a loving orchard in 2018, mainly planting August melons (Ba Yue Gua). Through three years of hard work, the orchard has already started to bear some fruits, and Mr. Ying received a small amount of money from these selling these fruits. Mr. Ying’s health has also gradually improved in the process of doing farm work. He has not been hospitalized for two years and can participate in some simple labor activities and chores. Mr. Ying is not an individual case. Mr. Xu from Chishan, Jiangxi, is also raising black goats to support his family. The black goats have brought their family more than 10,000 yuan each year, helping them pay for medicine and making their lives easier.
Currently, many rural pneumoconiosis patients are still facing many difficulties. They worry about their economic conditions, pain caused by the disease, and develop pessimism regarding their future, and the injustice of being excluded from the social benefits. But nowadays, government, NGOs, and volunteers have started to put in the effort to help rural pneumoconiosis patients, and patients themselves also started to save themselves through starting small businesses.
Although more and more people have begun to pay attention to pneumoconiosis, some patients living in the rural parts of China still couldn’t receive any subsidies for their disease. Furthermore, many patients are not even aware of the government policies concerning pneumoconiosis in their province. Therefore, they weren’t able to enjoy the benefits of receiving the necessary treatment of rehabilitation. However, with the help from the government, NGOs and volunteers, it is very likely that in the future, policies regarding pneumoconiosis can become more developed so that even patients living in the rural distant areas can receive professional treatment. It is better to have the medicine idled on the shelf than to have patients on the earth.
Mr. Zhu also emphasized in his interview: “I hope that we can come to the hospital in time for treatment rather than going through all the cumbersome approvals in between. People in remote villages should be able to come to the hospital immediately after feeling ill so that they do not miss the best time for treatment.”
1.Hong, Haifeng. “Pneumoconiosis And Other Patients’ Families Are Included In The Relief System.” Px.Jxnews.Com.Cn, 2017, https://px.jxnews.com.cn/system/2017/08/22/016353507.shtml.1
2.”Rescue Project.” Daqc.Org.Cn, https://www.daqc.org.cn/index.php/content/content/index/fid/3.html.
3. “From Riding A Bike For 5 Minutes To Insisting On An Hour, He Practiced For A Year In A Pneumoconiosis Rehabilitation Center”. Weibo.Com, 2019, https://weibo.com/ttarticle/p/show?id=2309404413327727001699&sudaref=www.baidu.com.