蔡同堯 email@example.com Ernie
楊琇雯 firstname.lastname@example.org Ula
The 13thAsian Bioethics Conference
“Bioethics and Life: Security, Science, and Society”
Kuala Lumpur, Malaysia
August 27-30, 2012
Duujian Tsai 蔡篤堅, MD
School of Medicine
Taipei Medical University email@example.com
Ernie Tsai 蔡同堯, MD, and Ula Yang 楊琇雯,
我還有第一次發送認證碼的時間及號碼:2012/7/12 14:58 429876
13th Asian Bioethics Conference
“Bioethics and Life: Security, Science, and Society”
Kuala Lumpur, Malaysia August 27-30, 2012
Comprehending Lives Beyond Illness:
Narratives of AIDS Patients in Taipei ¬¬Linda Gail Arrigo艾琳達,
Ph.D. Sociology School of Humanities and Social Sciences Taipei Medical University firstname.lastname@example.org
In recent decades, as practice of medicine has increasingly become a task of technological diagnosis, a complementary awareness has been emerging that caring for patients must integrate personal concern for the patient (Rita Charon, JAMA. 2001;286(15):1897-1902). In fact, increasing doctor burnout and lack of connection with the patient seems to be linked to the technological impersonalizaton and detailed cost management of medicine, as seen in a current commentary in the New York Times (Pauline W. Chen, “The Widespread Problem of Doctor Burnout”, New York Times, August 23, 2012).
Narrative medicine has been recognized as a medium for creating an emotional connection with the patient, entering into his or her world of meaning. The direct experience of listening to a life history, especially that of a person such as an AIDS patient who could easily be written off as hopeless or as culpable for the illness, changes the perceptions and values of the interviewer.
In this light I have included visiting and interviewing AIDS patients in my medical anthropology class at Taipei Medical University, Graduate Institute of Medical Humanities. Through these narratives we feel how the person makes sense of his/her life; and on the part of the interviewee the process of narration seems to impart subjective meaning and even acceptance of fate to what could be objectively seen as a random affliction.
It is relatively easy for us to find interviewees, because located within walking distance of TMU is the head office of Harmony Home Association, Taiwan (www.hhat.org, 台灣關愛之家協會), an NGO growing out of the efforts of Nicole Yang (楊婕妤), beginning 1986, to care for friends stricken with AIDS. Taiwan since 1995 has had universal health insurance for its population, and further provides free HAART medication for those infected with HIV. But Harmony Home is only about 10-15 percent funded from government sources. Nearby also are its facility for caring for bedridden patients, and a halfway house for those living with AIDS but still able to care for themselves and even some in light employment. Elsewhere in Taiwan Harmony Home operates other halfway houses and a home for children, and it even runs numerous orphanages in China for afflicted children, often with the participation of international volunteers.
As an NGO and nonprofit, Harmony Home does not have the resources of a government organization, and its facilities are a far cry from spacious buildings with shiny surfaces, smooth air conditioning, and bustling technical personnel, such as the three hospitals that are managed by Taipei Medical University. The student interviewers must face a certain amount of personal discomfort and shock. On the other hand, Harmony Home does have much more freedom to deal with human issues than would a government-run facility, and a large portion of its caretakers, both employed and volunteer, are HIV-positive. At the full care facility, a dozen beds are crammed into a three bedroom first floor apartment and its basement; in the summer months the atmosphere feels stifling. Many of the patients are comatose and diapered; some are young men with the tattoos of gang membership. The environment would outwardly seem depressing, the patients hopelessly waiting to die; but to the contrary it is amazing to find that the caretakers are genuinely upbeat and energetic, and the patients seem to accept the small cheers of daily life.
The halfway house a block away is likewise a first floor apartment that is crowded beyond normal expectations of privacy. The front room has three beds, a few chairs, and a television. Here, with one of the long term volunteer staff introducing us, my students and myself sought and found persons living with AIDS who were willing to tell their life stories.
“How did you get it?” is the question that invariably comes to mind. But that is not the way to begin a life history interview. We ask politely where the person is from, and what has been his or her employment. One person may say diffidently, I was a farmer, I got into drugs, and there’s not much more to tell. Another may tell of the beautiful and talented lover he met on a business trip to Japan, and how Christian faith sustains him now. Even such brief accounts move the listener beyond the sickbed of the current moment.
“Handsome” was busily going out the front door when we asked him to introduce himself briefly, and as soon as he understood we were seeking to plan a long interview, he sat down and gave tantalizing trailers to convince us that he could throw light on little known aspects of Taiwan’s history and society, and was himself a fascinating character. It seemed to be his goal at this point to leave a colorful record of his life, and he readily agreed to three interviews with myself and my two graduate students who would transcribe the interviews, Ernie Tsai (蔡同堯), an emergency room doctor, and Ula Yang (楊琇雯), a reporter who covers medical issues. His conditions were that we provide him the full recording and text, as soon as he bought a computer to put them on. “Handsome” is partially blind, but he plans to use the enlarged print function of computers to write a blog, and maybe even pull some income as a consultant of interior decoration.
We met with him in later weeks, late April to May 2012, three times for interviews of a little over two hours each. After the first interview in the front room of the halfway house, other residents complained that we were disturbing their nap time, and so we met at a small nearby park with benches and some shade. Within the planned six hours, “Handsome” was good at both presenting a condensed version of his life, and maintaining the dramatic tension leading up to a revelation. It seemed he had been researching his own early life, and his narration was planned to cover his young life up to a dramatic change at age 25, and only sketch his subsequent flamboyant life in Taipei’s homosexual subculture. His story, summarized below, did reflect many of the features of traditional Taiwanese society and custom, as well as the economic development and social conditions of the 1970’s and 80’s.
“Handsome” is the English nickname of the interviewee, and so we shall name him here. Handsome, 54 years of age when interviewed, is a muscular man of slightly greater than average height in Taiwan. He has large eyes and brows and an expressive face, with an air of earnestness perhaps gauged to charm. His thick hair is sheared neatly in a short crew cut. He is articulate and confident in speech. ………
Handsome was born in 1958 into a rich old family in Banqiao, a town close to the east side of Taipei. His mother, also the first daughter of a rich family, had been handed over at age one to become an “adopted daughter-in-law”, a common practice in past generations. However, the son of the family did not accept her gladly. She did not bear Handsome until age 26, and six years later she and her son were forced out of the family without recognition of paternity. After a brief stay with her natal family, it was arranged for her to marry a mainlander (meaning those who fled from the Chinese mainland in 1949 following the defeat of Chiang Kai-shek) over 20 years older who had a good job as a factory manager.
This man gave the child his own surname, though not forgetting he was not his own son. Handsome’s mother had another three children. She was uneducated and had done labor selling vegetables in the market, but had a gambling habit. When her husband fell ill and had to leave his factory, she kept the family afloat by setting up gambling rings in their spacious house; sometimes three going at a time. As a child Handsome knew how to manage the house fees for a traditional card game. He was a clever child, but spent all his time in school reading comics and the traditional Chinese heroic novels like “Water Margin”. Later he became hooked on Japanese popular music.
The stepfather recovered enough to peddle quilted Chinese jackets from a bicycle. Handsome went to work and live in a factory away from home for a year, but could not bring himself to shower with the other boys, or use the toilets when crowded, and became painfully thin. His family told him to move home. He had always been popular with neighborhood girls but ridiculed by boys; he did not know why. He refused to join a military school as his stepfather requested. When he was sixteen, he was beaten by his stepfather; the next day he stole his stepfather’s stock of cash, over a month’s income, and ran away.
Handsome had just been reading the stories of Taiwan’s famous novelist Bai Xianyong; his novel “Crystal Boy” (1977) appeared first in newspaper serials, and is considered the coming out of Taiwan’s homosexual subculture. Like the novel, with an imagination of love from a fatherly figure, Handsome went and sat in New Park. He was picked up by an older military man, showered with gifts, invited to his house, and then molested by the man and his friend. Not knowing what to think, but realizing it was not love, he did not resist. After ten days he aimlessly went back to Banqiao, and encountered his sister looking for him desperately. His stepfather took him back without comment. He told his mother what had happened.
His mother was heavily in debt from gambling, but did not dare tell her husband. She had a circle of “sworn sisters”, and one “aunt” was a broker for selling girls into prostitution. In recent years Handsome had noticed that girl classmates in his working-class neighborhood had been disappearing. Then one evening about 9 pm he was invited over to the home of the “aunt”. The aunt’s boyfriend was one of Taipei’s high-ranking police inspectors. The inspector questioned Handsome as to whether he had been sodomized, and felt over his whole body, arousing his member, and seemed ready to use him likewise. Handsome made an excuse, broke away, and ran home. Later through the wall he heard the aunt trying to arrange a sale with his mother; he thought it was for his younger sister, but was startled to realize he was the object. Tall for his age and well-formed, his price would have been US$4,250 to serve a select private clientele, in contrast to US$3,000 for a common girl prostitute. This was about 1975.Handsome was saved by another “aunt” married to a gangster who managed to arrange sale of some of his mother’s property and settle her debts. Male prostitution was virtually a death sentence, they said.
Later Handsome began to work as a salesman in a record shop. The new records coming from Japan were good quality, and he was an expert popular with the clients. He memorized Japanese and American songs. One day when he was 19 a girl a few years older walked into the shop and they started talking. They never stopped. A year later her older sister asked why they only talked records and not romance; so they did. But the girl was unmarried because she had recently been diagnosed with leukemia, and their relationship could only be platonic, although he often slept over at her house on the sofa downstairs. Her father, a well-to-do businessman who travelled often to Japan, said that if they married he would set them up with a record shop, plus a honeymoon in Japan. Four years later, after many séances with a Taoist seer who cost top dollar, the girl was cured. Marriage with his love was in the prospect.
But Handsome’s stepfather was opposed. He accused Handsome of abandoning his younger brother and sisters. Moreover, Handsome had failed to go back to consult the Taoist seer within a month as he had been instructed, and the predicted danger materialized: Handsome was hit by a car right in front of the building where he worked a second job as a night guard. Depressed and slow in recuperation, Handsome came to a painful decision. He could not marry his pure, ideal love. He would overthrow his good, dutiful, clean self, and be unrestrained. With the first cigarette he had ever smoked, he burned his wrist as he wrote the fateful letter to the woman he loved and never saw again. He was 25.
Was this decision due to his natal family’s claim on his income, as he described it, or the forbidden lure of his demonstrated capacity to seduce men? He had continued to occasionally visit New Park, only physiological release he said, while he waited for his pure love. He had been in the bedrooms of famous artists, some of whom he says can be named now. Later he was bisexual, occasionally romping with coffee shop girls. He claims to have lured three married men away from their wives. He was not surprised to turn HIV+ at age 51 after perhaps a thousand contacts; he had been tested many times before, and then he stopped all sexual contacts to protect others. Successful in business as well, for ten years Handsome ran a popular teashop with Japanese motifs, and in the last year there he played his vinyl classics to pour out his soul, even as he realized his sight was declining due to both AIDS and hereditary diabetes, like his mother. A famous doctor at National Taiwan University operated on one eye and he could see for a while; but with the strain of packing and dispersing his life’s possessions, his retina suddenly bled again and blinded him.
Handsome was explicit in his philosophy, “Laugh, and the world laughs with you; cry and you cry alone.” Cited of course from a golden oldie record. He kept this attitude for all three interviews. But two weeks later he visited me in my office, saying there were some things he did not want to say publicly, and he related how he had lost all his property and control over his own life as his illness progressed. As he told us in the last interview, when he shut down his restaurant he had originally planned to end his own life in an orderly fashion, but then after seeing signs from the Taiwanese Taoist gods of fortune, he is setting out again. However, particularly at the point last year that he suffered further loss of vision and moved to Harmony Home,he has reached the bottom of his resources.
Here the sense of loss was clearer, and I looked back on other small pieces of life histories at Harmony Home in a different light. There was a profound sense of finality in the summing up, a sense of fate and of quiet bereavement. I believed that the process of narrative gave the interviewers, i.e. myself, my students, and hopefully the future readers, a vivid picture of a life that was rich and feeling, not the illness that punctuated it at the end. I hoped and felt as well that the narrator gained a feeling that his life experience was respected and remembered, beyond the limits of his current reduced circumstances. Handsome is willing to have his life story published, and wonders if it may even serve as a belated apology to the woman he promised he will love forever, but does not dare to seek out now.
Physical affliction and perhaps early death due to a sexually-transmitted disease such as HIV carries with it a particular burden of stigma and social sanctions for “immoral” behavior, and even difficulties in getting medical and dentistry services. But facing pain and mortality are common to all patients with serious illnesses. In these narratives we can see a person facing a mortal illness and reflecting on his own life in the context of his perceptions and goals, not just a disease inhabiting a body. That may be their lasting value.