Understanding Disability through a Group of Prosthesis Users in China
By Chunchun Wang
Mr. Lin1, a retired teacher in his seventies, has been a left above-knee prosthesis user since 2016. He underwent amputation surgery after accidentally cutting the artery in his left thigh when carpentering in 2015. Living with his prosthesis changed the everyday life of Mr. Lin and his family, daily interactions with others included. It was an upsetting experience for Mrs. Lin to speak about her husband’s encounter with some neighbors after him being disabled:
“After his surgery, we did not go out regularly. We only told a few trustworthy people about his situation. Others guessed that something terrible must have happened to him, but they were not sure what it was. Gradually the story spread, so more and more people knew he was disabled and using a prosthesis. One day, after enjoying the winter sunshine in our neighborhood, we passed a few acquaintances on our way home. To my shock, those people with whom we had interacted for years, they turned their faces to the other side with eyebrows raised and mouths contorted (as if they had noticed something unpleasant and chosen to ignore it).”
Mrs. Lin imitated the neighbors’ facial expressions to me, then went on narrating: “They did not greet us, not even a word. I will never forget those faces. You cannot imagine how ugly they were. Why did they do that to us? We have lived in the same building for years.” She pointed to Mr. Lin with slight anger and deep disappointment and said: “I don’t understand why this person considers those people’s reactions are acceptable. I can’t take it.” Mr. Lin, sitting beside her, responded with a weak smile: “I am canfei (殘廢). It’s a fact. What can I do?”
Mr. Lin is one informant of mine during my 13-month fieldwork in the Sichuan 81 Rehabilitation Center in Chengdu, China. Drawing on narratives from my informants and my own observations, I aim to illuminate conceptions about disability, aesthetics of bodies, and care-giving/care-receiving practices in China through prosthesis users’ everyday experiences. Perceptions about disabled people are hugely influenced by cultural, social, and political factors, which bring low self-esteem and moral dilemmas to disabled people in China. My informants’ experiences always made me curious about another question – how do they deal with disabilities in their lives given the prejudice about disabled people? Most informants attribute their disabilities to supernatural beings, with fate being a common explanation. All holds true for Mr. Lin.
Why is Mr. Lin canfei?
What is canfei? What is the relation between canfei and the official terms canji (殘疾) in China? The word canfei is composed of two Chinese characters, can (殘) and fei (廢). In the popular character reference book Shuo Wen Jie Zi (說文解字), literally “Explaining Graphs and Analyzing Characters”, can is interpreted as “injury and wound"2. The original meaning of fei is “collapsed houses”, and its meaning developed into “falling”3. Ji is explained as “disease” and “leaning on something due to diseases”4. Terms for disabled people changed in specific eras, but they always carry the meanings of fei and ji. In today’s interpretations, canfei implies disabled people’s lives are not worthy of living as fei’s main meanings include “useless”, “finished”, and “damaged without any chance of recovery.” Canji hints at that disabled people are pathological and unhealthy so that they need further treatments.
Compared to the original definitions, which are merely descriptions of particular states, the contemporary interpretations obviously carry strong and negative moral meanings. Matthew Kohrman, an anthropologist researching disability in China, reviewed the history of terms for disabled people in the 20th century and its relations with nation-building. He points out that canfei used to be a category which differentiated between the elite and the weak; in Mao’s period, canfei was regarded as a misery caused by people who are against the nation; after initiating the Reform and Opening-up Policy, disabled people started to become one of the representative groups showing that Chinese people have a responsible government, which takes care of everyone.5 In the last 15 years of the 20th century, canfei was gradually removed from the official discourse and replaced by canji, which was promoted by The China Disabled Persons Federation (CDPF).
The CDPF was established in March 19886 mainly due to Deng Pufang’s7 influences. The organization had strong connections with the government and it became a branch of the local authorities, especially in counties and towns. The CDPF rapidly grew into an influential parental organization speaking for and of disabled people in China. Changing the term for disabled people is one of the first steps CDPF took to improve disabled people’s lives. By promoting the change from canfei to canji, CDPF emphasizes the importance of evidence-based care for disabled people, such as developing rehabilitation medicine, providing basic assisting facilities, and improving disabled peoples’ social status. However, canji links disabled people to ji (diseases); at the same time, its connotation is that disabled people might be treated or cured by medicine or medical technology. Canji might encourage the medical gaze on the disabled body rather than dismantling cultural and social stigmas.
Why does Mr. Lin describe himself as canfei while understanding the negative moral meanings of the term? It could be a form of self-mockery. More significantly, it is a reflection of the neighbors’ attitudes towards himself rather than him considering himself as canfei. As a teacher, Mr. Lin was respected in his community, but now he is a person that others intentionally ignore, as if his disability lies not only in his body but also in his morality. That is, he is judged not only because of his body but also due to the degenerated morality represented by a disabled body. Mr. Lin’s experience illustrates that there is still a gap between ordinary people’s understandings of disabled persons and the values expressed in written policies. I even doubt that the change, from canfei to canji, deeply touches upon people’s perceptions about disabled people and disabled people’s self-perception, as the influences of fei and ji are still profound. Furthermore, it might create a dilemma in disabled people’s life: they may be taken care of by the government while being looked down upon in everyday life.
Another reason for Mr. Lin to call himself canfei is that doing so frees him from having to play a passive role in Mrs. Lin’s narrative. Mrs. Lin accused Mr. Lin of not properly responding to the neighbors’ contemptuous behavior. By saying “I am canfei”, Mr. Lin showed his acceptance/ignoring of others’ unfair judgments and thus rejected Mrs. Lin’s accusation. To the Lins, other people’s prejudice become part of their life and something they have to deal with every day.
Fate – One Accountability for Disability
Mr. Lin told me his story while participating in an occupational therapy program: “My sister’s 60th birthday was a few months before my accident. I went to her place to celebrate with her. She is a fortune-teller. Before I left her house, she warned: ‘Brother, be careful in the upcoming months (this year). You will be lucky if you don’t die but you will pay heavily for being alive. Even if you don’t die, a layer of skin will be ripped off your body.’ I felt furious due to the misfortune she foresaw and responded: ‘Bullshit!’ After my amputation surgery, my sister asked me at the hospital: ‘Brother, do you still think I was bullshitting?’ There was nothing could I say.” Mrs. Lin elaborated: “The accident happened on the day before the National Day (Oct. 1, 2015). He was too stubborn to listen to any advice on that day. He insisted on making a peg-top which spins when being hit with a whip. Playing peg-top was a popular leisure activity at that time in our city. I suggested we clean the house and prepare food for our children and grandchildren as they would visit us during the seven-day National Holiday. However, he rejected my suggestions and focused on working around the house. Finally, he cut the vessel in his left thigh with the saw in his hands. He would not have been disabled if it was not for the holidays as most doctors were on leave. It was his fate.” “I never believed in that (fate) before what happened to me.” Mr. Lin added with an awkward smile.
Similar to explanations about misfortune in a wide range of cultures8, the Lins attribute Mr. Lin’s disability to the fate, which answers “why disabled” rather than “how disabled.” Accidentally cutting himself when carpentering is the direct reason, which does not explain why the accident happened to Mr. Lin at that particular moment; while fate is the fundamental and convincing explanation as it means that being disabled is Mr. Lin’s destiny, and the accident is a way to fulfill this destiny. Fate helps Mr. Lin to accept his disability. In Chinese culture, fate is changeable if people can detect the omens in advance. There would have been the possibility of a different life, which places prosthesis users in a dilemma of acceptance and regret. People cannot help asking the question of “what if”. What if Mr. Lin had listened to his sister’s warning and carefully avoided activities involving sharp tools during the rest of 2015? What if Mr. Lin had given up his plans and done chores with Mrs. Lin instead on Sep. 30, 2015? What if and what if…? Mr. Lin accepted his disability with its associated moral burdens. Prosthesis users such as Mr. Lin try hard to make sense of their disabilities in the complex contexts of China shaped by history, politics, and beliefs. I have to say that the journey for them is not pleasant at all.
Chunchun Wang is an anthropology PhD student at the Chinese University of Hong Kong.
[1] I use pseudonyms for all informants to protect their privacy.
[2] Xu Shen., Tang Kejing. Shuo Wen Jie Zi Jin Shi. 1st ed. (Changsha: Yuelu Shushe, 1997), 556.
[3] Xu Shen., Tang Kejing. Shuo Wen Jie Zi Jin Shi. 1st ed. (Changsha: Yuelu Shushe, 1997), 1274.
[4] Xu Shen., Tang Kejing. Shuo Wen Jie Zi Jin Shi. 1st ed. (Changsha: Yuelu Shushe, 1997), 1015.
[5] Kohrman, Matthew. Bodies of Difference: Experiences of Disability and Institutional Advocacy in the Making of Modern China, (Berkley: University of California Press, 2004), 57-82.
[6] “Overview of China Disabled Persons’ Federation,” China Disabled Persons’ Federation, accessed 0ct. 3, 2018, http://www.cdpf.org.cn/english/About/overview_1793/.
[7] Deng Pufang (鄧朴方) is the first son of Deng Xiaoping. He became disabled during the Cultural Revolution and then became an activist for disabled people in China. For more information: https://www.google.com.hk/search?q=deng+pufang&rlz=1C5CHFA_enHK726HK727&oq=Deng+Pu&aqs=chrome.0.35i39j69i57j0l4.7881j1j7&sourceid=chrome&ie=UTF-8.
[8] There are plenty of discussions regarding misfortune in anthropology, beginning with E. E. Evans-Pritchard’s book Witchcraft, Oracles, and Magic Among the Azande (1937).
_____________________________
Recommended Citation:
Wang Chunchun (2018): Understanding Disability through a Group of Prosthesis Users in China. In: Public Disability History 3 (2018) 13.
Mr. Lin1, a retired teacher in his seventies, has been a left above-knee prosthesis user since 2016. He underwent amputation surgery after accidentally cutting the artery in his left thigh when carpentering in 2015. Living with his prosthesis changed the everyday life of Mr. Lin and his family, daily interactions with others included. It was an upsetting experience for Mrs. Lin to speak about her husband’s encounter with some neighbors after him being disabled:
“After his surgery, we did not go out regularly. We only told a few trustworthy people about his situation. Others guessed that something terrible must have happened to him, but they were not sure what it was. Gradually the story spread, so more and more people knew he was disabled and using a prosthesis. One day, after enjoying the winter sunshine in our neighborhood, we passed a few acquaintances on our way home. To my shock, those people with whom we had interacted for years, they turned their faces to the other side with eyebrows raised and mouths contorted (as if they had noticed something unpleasant and chosen to ignore it).”
Mrs. Lin imitated the neighbors’ facial expressions to me, then went on narrating: “They did not greet us, not even a word. I will never forget those faces. You cannot imagine how ugly they were. Why did they do that to us? We have lived in the same building for years.” She pointed to Mr. Lin with slight anger and deep disappointment and said: “I don’t understand why this person considers those people’s reactions are acceptable. I can’t take it.” Mr. Lin, sitting beside her, responded with a weak smile: “I am canfei (殘廢). It’s a fact. What can I do?”
Mr. Lin is one informant of mine during my 13-month fieldwork in the Sichuan 81 Rehabilitation Center in Chengdu, China. Drawing on narratives from my informants and my own observations, I aim to illuminate conceptions about disability, aesthetics of bodies, and care-giving/care-receiving practices in China through prosthesis users’ everyday experiences. Perceptions about disabled people are hugely influenced by cultural, social, and political factors, which bring low self-esteem and moral dilemmas to disabled people in China. My informants’ experiences always made me curious about another question – how do they deal with disabilities in their lives given the prejudice about disabled people? Most informants attribute their disabilities to supernatural beings, with fate being a common explanation. All holds true for Mr. Lin.
 |
| Mr. Lin, walking to his room in the Sichuan 81 Rehabilitation Center. ©Chunchun Wang |
Why is Mr. Lin canfei?
What is canfei? What is the relation between canfei and the official terms canji (殘疾) in China? The word canfei is composed of two Chinese characters, can (殘) and fei (廢). In the popular character reference book Shuo Wen Jie Zi (說文解字), literally “Explaining Graphs and Analyzing Characters”, can is interpreted as “injury and wound"2. The original meaning of fei is “collapsed houses”, and its meaning developed into “falling”3. Ji is explained as “disease” and “leaning on something due to diseases”4. Terms for disabled people changed in specific eras, but they always carry the meanings of fei and ji. In today’s interpretations, canfei implies disabled people’s lives are not worthy of living as fei’s main meanings include “useless”, “finished”, and “damaged without any chance of recovery.” Canji hints at that disabled people are pathological and unhealthy so that they need further treatments.
Compared to the original definitions, which are merely descriptions of particular states, the contemporary interpretations obviously carry strong and negative moral meanings. Matthew Kohrman, an anthropologist researching disability in China, reviewed the history of terms for disabled people in the 20th century and its relations with nation-building. He points out that canfei used to be a category which differentiated between the elite and the weak; in Mao’s period, canfei was regarded as a misery caused by people who are against the nation; after initiating the Reform and Opening-up Policy, disabled people started to become one of the representative groups showing that Chinese people have a responsible government, which takes care of everyone.5 In the last 15 years of the 20th century, canfei was gradually removed from the official discourse and replaced by canji, which was promoted by The China Disabled Persons Federation (CDPF).
The CDPF was established in March 19886 mainly due to Deng Pufang’s7 influences. The organization had strong connections with the government and it became a branch of the local authorities, especially in counties and towns. The CDPF rapidly grew into an influential parental organization speaking for and of disabled people in China. Changing the term for disabled people is one of the first steps CDPF took to improve disabled people’s lives. By promoting the change from canfei to canji, CDPF emphasizes the importance of evidence-based care for disabled people, such as developing rehabilitation medicine, providing basic assisting facilities, and improving disabled peoples’ social status. However, canji links disabled people to ji (diseases); at the same time, its connotation is that disabled people might be treated or cured by medicine or medical technology. Canji might encourage the medical gaze on the disabled body rather than dismantling cultural and social stigmas.
 |
| People waiting outside a county-level CDPF office for their prostheses in November 2017 ©Chunchun Wang |
Why does Mr. Lin describe himself as canfei while understanding the negative moral meanings of the term? It could be a form of self-mockery. More significantly, it is a reflection of the neighbors’ attitudes towards himself rather than him considering himself as canfei. As a teacher, Mr. Lin was respected in his community, but now he is a person that others intentionally ignore, as if his disability lies not only in his body but also in his morality. That is, he is judged not only because of his body but also due to the degenerated morality represented by a disabled body. Mr. Lin’s experience illustrates that there is still a gap between ordinary people’s understandings of disabled persons and the values expressed in written policies. I even doubt that the change, from canfei to canji, deeply touches upon people’s perceptions about disabled people and disabled people’s self-perception, as the influences of fei and ji are still profound. Furthermore, it might create a dilemma in disabled people’s life: they may be taken care of by the government while being looked down upon in everyday life.
Another reason for Mr. Lin to call himself canfei is that doing so frees him from having to play a passive role in Mrs. Lin’s narrative. Mrs. Lin accused Mr. Lin of not properly responding to the neighbors’ contemptuous behavior. By saying “I am canfei”, Mr. Lin showed his acceptance/ignoring of others’ unfair judgments and thus rejected Mrs. Lin’s accusation. To the Lins, other people’s prejudice become part of their life and something they have to deal with every day.
Fate – One Accountability for Disability
Mr. Lin told me his story while participating in an occupational therapy program: “My sister’s 60th birthday was a few months before my accident. I went to her place to celebrate with her. She is a fortune-teller. Before I left her house, she warned: ‘Brother, be careful in the upcoming months (this year). You will be lucky if you don’t die but you will pay heavily for being alive. Even if you don’t die, a layer of skin will be ripped off your body.’ I felt furious due to the misfortune she foresaw and responded: ‘Bullshit!’ After my amputation surgery, my sister asked me at the hospital: ‘Brother, do you still think I was bullshitting?’ There was nothing could I say.” Mrs. Lin elaborated: “The accident happened on the day before the National Day (Oct. 1, 2015). He was too stubborn to listen to any advice on that day. He insisted on making a peg-top which spins when being hit with a whip. Playing peg-top was a popular leisure activity at that time in our city. I suggested we clean the house and prepare food for our children and grandchildren as they would visit us during the seven-day National Holiday. However, he rejected my suggestions and focused on working around the house. Finally, he cut the vessel in his left thigh with the saw in his hands. He would not have been disabled if it was not for the holidays as most doctors were on leave. It was his fate.” “I never believed in that (fate) before what happened to me.” Mr. Lin added with an awkward smile.
Similar to explanations about misfortune in a wide range of cultures8, the Lins attribute Mr. Lin’s disability to the fate, which answers “why disabled” rather than “how disabled.” Accidentally cutting himself when carpentering is the direct reason, which does not explain why the accident happened to Mr. Lin at that particular moment; while fate is the fundamental and convincing explanation as it means that being disabled is Mr. Lin’s destiny, and the accident is a way to fulfill this destiny. Fate helps Mr. Lin to accept his disability. In Chinese culture, fate is changeable if people can detect the omens in advance. There would have been the possibility of a different life, which places prosthesis users in a dilemma of acceptance and regret. People cannot help asking the question of “what if”. What if Mr. Lin had listened to his sister’s warning and carefully avoided activities involving sharp tools during the rest of 2015? What if Mr. Lin had given up his plans and done chores with Mrs. Lin instead on Sep. 30, 2015? What if and what if…? Mr. Lin accepted his disability with its associated moral burdens. Prosthesis users such as Mr. Lin try hard to make sense of their disabilities in the complex contexts of China shaped by history, politics, and beliefs. I have to say that the journey for them is not pleasant at all.
Chunchun Wang is an anthropology PhD student at the Chinese University of Hong Kong.
[1] I use pseudonyms for all informants to protect their privacy.
[2] Xu Shen., Tang Kejing. Shuo Wen Jie Zi Jin Shi. 1st ed. (Changsha: Yuelu Shushe, 1997), 556.
[3] Xu Shen., Tang Kejing. Shuo Wen Jie Zi Jin Shi. 1st ed. (Changsha: Yuelu Shushe, 1997), 1274.
[4] Xu Shen., Tang Kejing. Shuo Wen Jie Zi Jin Shi. 1st ed. (Changsha: Yuelu Shushe, 1997), 1015.
[5] Kohrman, Matthew. Bodies of Difference: Experiences of Disability and Institutional Advocacy in the Making of Modern China, (Berkley: University of California Press, 2004), 57-82.
[6] “Overview of China Disabled Persons’ Federation,” China Disabled Persons’ Federation, accessed 0ct. 3, 2018, http://www.cdpf.org.cn/english/About/overview_1793/.
[7] Deng Pufang (鄧朴方) is the first son of Deng Xiaoping. He became disabled during the Cultural Revolution and then became an activist for disabled people in China. For more information: https://www.google.com.hk/search?q=deng+pufang&rlz=1C5CHFA_enHK726HK727&oq=Deng+Pu&aqs=chrome.0.35i39j69i57j0l4.7881j1j7&sourceid=chrome&ie=UTF-8.
[8] There are plenty of discussions regarding misfortune in anthropology, beginning with E. E. Evans-Pritchard’s book Witchcraft, Oracles, and Magic Among the Azande (1937).
_____________________________
Recommended Citation:
Wang Chunchun (2018): Understanding Disability through a Group of Prosthesis Users in China. In: Public Disability History 3 (2018) 13.
