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7 The Social Course of Epilepsy Chronic Illness as Social Experience in Interior China

图书名称:Writing at the Margin: Discourse between Anthropology and Medicine
图书作者:Arthur Kleinman    ISBN:
出版社:Berkeley: University of California Press    出版日期:1995年

Epilepsy is a relatively new focus for research in international health. With increased recognition of the importance of chronic disease and disability in the health status of communities in Asia, Africa, and Latin America, attention is shifting to those conditions that create a heavy burden of perduring suffering for patients and families (Chen, Kleinman, and Ware 1994; Frenk et al. 1989). Epilepsy, a disorder of recurrent unprovoked seizures, has a prevalence of 4 to 8 per 1,000 in Europe and North America, with rates three to five times higher in low-income societies (Desjarlais et al. 1995). These higher rates are due to conditions of deprivation that enable perinatal problems, promote higher rates of injury and infections, and seriously limit treatment. The same conditions intensify the consequences of epilepsy, such as serious burns and other injuries, and abridge the aspirations and life chances of sufferers and their families. Epilepsy patients are frequently denied schooling, shunned by their peers, find it difficult to marry, and meet active discrimination when they seek employment. Remarkably, in spite of effective biomedical treatments that can substantially reduce and even prevent seizures entirely, few epileptics are in biomedical care. In Pakistan and the Philippines, more than 90 percent of those with epilepsy are not receiving biomedical treatment (Desjarlais et al. 1995: chap. 8). Were there evidence that various traditional healing methods or alternative lay therapies can control seizures, this finding might be less troubling. Because there is no such evidence, economic, cultural, and other local social forces must be regarded as crucial.

Given this background, it is not surprising that epilepsy has attracted the interest of social scientists. The leading social theory applied in epilepsy research globally is still, more than thirty years after its formulation, the model of stigma introduced by the sociologist Erving Goffman (Goffman 1963). This model has been modified only modestly by sociologists and social psychologists (Jones 1984; Ainlay, Becker, and Coleman 1986; Westerbrook, Bauman, and Skinner 1992). Stigma theory holds that epilepsy is a culturally devalued condition. Once this negative label is applied to a person with seizures, that person bears the brunt of societal reactions that lower the sufferer's self-esteem, creating the inner sense of being discredited or discreditable, which over time spoils his or her identity.

Temkin's classic account of epilepsy in the West, from ancient Greece to the mid-nineteenth century, also emphasizes stigma (Temkin 1945: 8, 11). Temkin, writing well before Goffman crystalized his model out of the symbolic interactionist tradition's concepts of labeling and deviance, viewed the stigma that attached to epilepsy patients as derived from ideas about its contagiousness, its "disgraceful" loss of bodily control and self-control, its religious interpretation as sign of sin, and its association with demonic possession and witchcraft (ibid.:8, 84, 90). Yet Temkin also points out that the historical record is complex. In ancient times, epileptics were regarded as sacred, and in the Renaissance, "pity, compassion, and special consideration" for sufferers of the "falling sickness" were urged upon the public (ibid.:156). The early nineteenth-century movement to hospitalize epileptics, which would probably now be widely viewed in a Foucaldian sense as yet another instance of the modern state's project of social control, is viewed by Temkin in a more benign way (ibid.:245). As with leprosy, an even more deeply stigmatized disease, any disorder in the Western Christian tradition could be associated with seemingly incompatible ideas of damnation and grace (Gussow and Tracy 1970).

The long and vicious wave of interest in hereditary degeneracy which followed the triumph of the evolutionary paradigm in the latter part of the nineteenth century and continued right up until World War II, a story that Temkin did not tell in his historical account, appears to have intensified the stigma of epilepsy, which was then framed as a condition of inherited physical and moral degeneracy. In her "Stories of Epilepsy," Ellen Dwyer (1992) records this construction of epilepsy from 1880 to 1930 in North America. Physicians showed a marked "antipathy" toward their epileptic patients, who were held to be personality disordered, congenitally predisposed to criminality, and therefore an appropriate object of eugenic policies.[2] Epilepsy patients saw their admission as immigrants to the United States restricted and their right to marry abridged by certain states. There were even cases of involuntary sterilization. Dwyer tells the sad story of an effort in New York State to create an "isolated colony" to confine sufferers of epilepsy. She makes the strong claim that because of their frustration with the failure of medical therapy, medical experts were attracted to social isolation and eugenic practices as social treatments. With the advent of effective drugs, Dwyer also claims, medical writings on epilepsy as a public problem declined as did the search for social solutions and also the hostility directed toward patients.

Cross-cultural studies of epileptic patients emphasize high rates of psychological and social problems. Studies of epilepsy in as disparate a set of nations as Chile, the Cameroons, Ethiopia, and Kuwait emphasize stigma as commonplace and traumatizing.[3] Negative attitudes about marriage, sharing accommodations, schooling, and even physical contact abound. Accusations of possession and witchcraft and actual social deprivation and ostracism are also frequent. Louis Alvarado and colleagues (1992) draw attention to the importance of financial problems in coping with epilepsy in Chile. Another study (Jilek-Aall and Rwiza 1992), one of the few long-term longitudinal studies of epilepsy patients in a low-income society, followed up 164 outpatients treated in Tanzania thirty years earlier. Sixty-seven precent of the sample had died, half of them owing to seizures that caused drowning, severe burns, or other trauma. This mortality rate is twice that of their age cohort in the same rural population. Suicide also occurs among epilepsy sufferers (Stagna 1993:1149–1161). Thus, mortality as well as morbidity is a serious social consequence.

Medical anthropological accounts of epilepsy have sought to go beyond the stigma model to develop a social theory of the contextual processes within which it is experienced. For example, based upon extensive research in Tanzania, Susan Reynolds Whyte shows that social devaluation of epileptics, though widespread, is constructed and expressed in locally distinctive ways (Whyte 1995:226–245). It is true, she points out, that in certain East African settings epilepsy patients eat and sleep apart, cannot pass on inheritance, and can become outcasts. Ideas of pollution and contamination create deep difficulties for patients and for families, as do accusations of witchcraft and sorcery. But when seen from the perspective of social actors, the situation is more complicated and uncertain. Families feel a powerful need to protect their members with epilepsy from others' fear of contamination and from those who will not help; they protect epileptics by keeping them isolated at home. This is a greater abridgment of life chances than stigma per se. Nor are families passive. Traditional healers are sought out because of accusations of witchcraft. Patients and families do not actively avoid biomedical treatment. They are all too often unaware of the availability of effective medicine. Many respondents have no idea what (indigenous or biomedical agency) causes epilepsy. Families and patients struggle in these complex local contexts to make sense of a serious chronic disorder and to provide security for yet another emergency for which inadequate resources are already seriously strained. And yet, Whyte argues, families assist rural patients to maintain a social persona that is not limited to their devalued affliction. Thus, Whyte concludes, stigma, which is indeed present, is not a straightforward determinant of the social experience of epilepsy patients. Stigma theory, she contends, is not the only or even the most relevant social theory.

Byron Good and Mary-Jo DelVecchio Good draw upon the findings of a study of the illness narratives of epilepsy among patients and family members in Turkey to delineate the complexity and uncertainty of the social processes involved in the construction of illness experiences. They demonstrate how the lived experience of the chronically ill is represented and shaped through narrative devices that present illness as open to mystery, potency, and change (Good and Good 1994). Possibilities for transformation in the conditions of the afflicted are kept alive. Multiple perspectives and divergent interpretations are encouraged. Alternate sources of power for potential transformations are conjured; social actors reject the anticipated; hope is engendered. The storytellers of epilepsy—patients and family members—guide the imaginative responses of others. This is not so much resistance to dominant moral meanings of illness—popular or professional—as it is a subtle reframing of experience by those who are most affected on behalf of different issues at stake in their lives and local contexts.

Stigma theory is indirectly critiqued for the passivity it ascribes to patients who become the oversocialized victims of too determinative labels and inflexible societal discrimination. Patients and families are given the single option of disavowal. In place of the inadequacies of this brittle model, a more ethnographically grounded view is installed. Patients and families are viewed in all the complex uncertainty of social experience, where irony, passion, and contradiction—all elements in the subjunctive mode of creating sickness stories—foster the remaking of moral meanings and the reframing of the ontology of suffering. This may be one of the more valuable contributions of experience-near studies in medical anthropology.

James Trostle, another anthropologist who studies epilepsy, takes a different but complementary tack (Trostle 1988; Trostle, Hauser, and Susser 1988). He demonstrates that the biomedical and behavioral medicine models of noncompliance, analogous to stigma, also privilege passivity and paternalism. Noncompliance, which is as extensive in epilepsy as it is in other chronic conditions, can be replaced with an ethnographic interpretation of drug-taking behavior that makes cultural and personal sense of choices that these other models treat as ignorant, irrational, or perverse. This is the orientation of much of medical anthropology, which insists that the only valid grounds for understanding illness and treatment are the microcultural worlds in which patients and families engage in everyday social activities. In those worlds, culture is realized in daily rhythms, rituals, and relationships; suffering is always a mode of a culturally particular form of social experience; illness has social consequences; and chronic illness and disability take a social course. That course is organized as much by what matters for the participants in a local world as it is by the biology of the condition. Indeed, over time the continuous sociosomatic interaction between both processes creates a local ontology of illness.[4]

Epilepsy in Chinese Society

In urban Chinese society, the prevalence rate of epilepsy is 4.4 per 1,000; the overall rate is 3.7 per 1,000 (Li et al. 1985; Yang and Cao 1989).[5] Thus, there are close to 4 million Chinese with epilepsy.

A study of public awareness of epilepsy conducted among 1,278 respondents in Henan Province in 1988 found that 93 percent had heard of epilepsy; more than three-quarters of the sample knew someone with epilepsy; and almost three-quarters had seen someone have a seizure (Lai et al. 1990). Negative attitudes were extensive. More than half of the sample said they would object to having their children associate at school or play with persons with epilepsy; more than half also believed epileptics should not be employed in the same jobs as others. Notably, 87 percent, irrespective of their education level, would object to having their children marry a person with epilepsy; while one out of six were so uncertain about the condition that they said they would have nothing to recommend should a family member or friend develop epilepsy.

The Study

The current study was initiated as a collaboration between medical anthropologists and epilepsy researchers. Its goal was to examine the collective experience of epilepsy sufferers in poor interior regions of China that reflect the social conditions of most of China's peoples. Individuals with epilepsy in urban and rural areas of Ningxia and Shanxi provinces were asked to participate in the study, along with a few who attended local epilepsy clinics. Ningxia and Shanxi are two of China's poorer provinces, where a nationwide community-based epidemiological survey of epilepsy in 1985 had demonstrated high prevalence and good case records. Eighty participants were enlisted: twenty rural and twenty urban patients from each province. They and their family members were interviewed during home visits by local research teams who had been jointly trained in the use of a semi-structured interview schedule in training workshops. The interview canvassed demographics, experiences of illness and treatment, and both family and patient perspectives on local social responses to and consequences of the illness. The interview format used open-ended questions to encourage extended responses. Patients and family members were interviewed both together and apart to make it more feasible for differing views to be expressed.

The sample is roughly representative of the local demographics of epilepsy sufferers (see tables 1 and 2). In the Ningxia rural sample, most patients (70 percent) belong to the Hui nationality; Ningxia urban sample, Hui (15 percent). The Hui are a Muslim ethnic minority, a

 
 

Table 1Sample: Age, Gender, Occupation

   

Gender

Age

Occupation a

 

Number

Female

Male

Mean

1

2

3

4

5

6

7

Ningxia

                     

Urban

20

12

8

30

 

13

1

2

1

1

2

Rural

20

8

12

28

16

     

2

 

2

Shanxi

                     

Urban

20

9

11

47

 

11

1

4

1

1

2

Rural

20

9

11

39

19

   

1

   

2

Total

80

38

42

36b

             

a Occupations:(1) peasant farmer, (2) unskilled worker, (3) office worker/cadre, (4) technician, (5) student, (6) retired, (7) other (rural factory worker, unemployed).
b Range = 15–70.

 

Table 2 Sample: Marital Status, Education, Family Income (N = 80)

 

N

Percentage

Marital Status

   

Single

20

25

Married

59

74

Divorced

  1

  1

Educationa

   

Elementary school

23

29

High school (middle and senior)

34

43

Technical school

  5

6

College

  3

4

Illiterate or minimal literacy

15

19

Family income (in yuan: $1 = 5.6 yuan)a

   

<100

11

14

100–200

23

29

200–400

27

34

400–600

17

21

>600

  2

  3

a Total adds to more than 100% due to rounding.

group that predominates in the province (Gladney 1993). Most rural respondents are peasant farmers; most urban patients are workers. One-fifth of the sample is illiterate, and few have more than a junior high school education. Three-quarters are married and only one is formally divorced, though several are separated. In these characteristics and in income the sample is similar to the local populations among which they reside.

Results

Patients (and families) varied in the names applied to their condition. The technical name for "epilepsy," dian-xian-bing (colloquial, dian-jian-bing ) in standard Chinese, was used by a minority of respondents (see table 3). The term "attacks," fan-bing-le, was

 
 

Table 3 Name of Illness Reported by Patients and Family Members (N = 80)

   

Ningxia

Shanxi

Total

   

Urban

Rural

Urban

Rural

Urban

Percentage

Rural

Percentage

"Epilepsy" (Dian-xian-bing, colloquial, Dian-jian-bing)

2

0

14

11

16

33

11

19

"Convulsion" (Chou-feng-bing)

3

5

2

1

5

10

6

10

"Sheep convulsions" (Yang-jiao-feng)

1

8

4

8

5

10

16

28

"Attacks" (Fan-bing-le)

15

12

3

1

18

37

13

22

Other

1

4

0

8

1

2

12

21

Don't know

1

0

3

0

4

8

0

0

Totala

         

49

 

58

 

a Adds to more than 80 because some respondents gave more than one name.

most commonly used. It is nonspecific, even ambiguous; it does not convey as clearly the stigma of the other terms.

Expenditure on prescribed medicine as a percentage of monthly family income averaged 16 percent, forty-four yuan, with a range that reached 44 percent among the most impoverished. A few families spent between five hundred and six hundred yuan per month. If expenditures for special foods given to strengthen sick persons, clinic visits, use of alternative healers, transportation, and time taken off for help seeking are added to this figure, we estimated very roughly that families may have averaged close to 25 percent of monthly family income in expenditures for treatment of their epileptic members. Owing to the great transformation that has taken place in the 1980s and 1990s in China's health care system, for most families relatively little of this cost—usually a percentage of the cost of medications—is reimbursed by work units or other health insurance schemes. Most rural patients had no health insurance.

Great variation exists in lay ideas of the cause of epilepsy, ranging from heredity, head injury, possession, geomancy, poverty, and overwork to anger and fright. (Pluralism has always been commonplace in Chinese perspectives on illness [Kleinman 1980].) In interpreting the cause of first and subsequent attacks, patients and family members showed a tendency to increasingly use overwork, strong affects, and a wide range of new explanations to account for why seizures continued (see table 4). Possession and head injury were less frequently named as likely causes.

Help seeking, from the initial to subsequent seizures, showed a tendency both in rural and urban areas for patients and families to increasingly consult practitioners of traditional Chinese medicine and various folk healers as well as to use folk remedies. In rural areas, reliance on low-level primary care practitioners decreased, and there was overall a slight diminution in relying on treatment approaches provided by family members and neighbors, which were, surprisingly, very limited to begin with (see table 5).

A survey of respondents' perception of the chief effects of epilepsy on the patients and their families showed emotional, financial, and family/marital burdens to be extensive. Relations with others and overall quality of life also were reported as strongly affected. These effects appear to be somewhat greater in rural areas. Stigma (affecting both the family and the person), "loss of face," diulian (conveying the embodied sense of shameful loss of moral status), and diminished

 
 

Table 4 Perceived Cause of First Attack and Subsequent Attacks (N = 80 epilepsy patients; parentheses indicate subsequent attacks)

 

Ningxia

Shanxi

Total

 

Urban

Rural

Urban

Rural

Urban

Rural

Total

Percentage

Heredity

1

(0)

0

(1)

1

(0)

1

(1)

2

(0)

1

(2)

3

(2)

4

(3)

Congenital

1

(1)

0

(0)

0

(0)

0

(0)

1

(1)

0

(0)

1

(1)

1

(1)

Head injury

6

(3)

4

(0)

2

(0)

1

(0)

8

(3)

5

(0)

13

(3)

18

(4)

Infection

1

(0)

0

(0)

0

(0)

1

(0)

1

(0)

1

(0)

2

(0)

3

(0)

Retribution

0

(0)

1

(0)

1

(0)

2

(0)

1

(0)

3

(0)

4

(0)

6

(0)

Possession

4

(1)

6

(4)

3

(0)

2

(0)

7

(1)

8

(4)

15

(5)

21

(7)

God's will

0

(0)

0

(1)

1

(0)

2

(0)

1

(0)

2

(1)

3

(1)

4

(1)

Negative geomancy

1

(0)

0

(2)

1

(0)

4

(0)

2

(0)

4

(2)

6

(2)

8

(3)

Poverty

0

(0)

1

(3)

2

(3)

3

(3)

2

(3)

4

(6)

6

(9)

8

(12)

Wrong food

1

(1)

1

(2)

2

(2)

0

(2)

3

(3)

1

(4)

4

(7)

6

(10)

Overwork

1

(8)

1

(9)

1

(9)

3

(4)

2

(17)

4

(13)

6

(30)

8

(31)

Anger

3

(13)

1

(17)

8

(14)

6

(11)

11

(27)

7

(28)

18

(55)

25

(75)

Fright or anxiety

3

(7)

3

(6)

5

(13)

2

(4)

8

(20)

5

(10)

13

(30)

18

(41)

Othera

7

(9)

4

(9)

4

(2)

5

(2)

11

(11)

9

(11)

20

(32)

28

(30)

a Weather, menstruation, smoking, febrile seizures, carbon monoxide poisoning, etc.

 
 

Table 5 Help Seeking for First and Subsequent Attacks (N = 80 epilepsy patients; parentheses indicate help seeking for subsequent attacks)

 

Ningxia

Shanxi

Total

 

Urban

Rural

Urban

Rural

Urban

Rural

Total

Percentage

Hospital

14

(15)

4

(13)

5

(17)

0

(15)

19

(32)

4

(28)

23

(60)

29

(75)

Clinic

3

(11)

9

(9)

8

(6)

4

(19)

11

(17)

13

(28)

29

(45)

30

(56)

Rural doctor

1

(0)

3

(7)

0

(0)

8

(1)

1

(0)

11

(8)

12

(8)

15

(10)

Family or neighbors

0

(2)

1

(2)

3

(2)

4

(0)

3

(4)

5

(2)

8

(6)

10

(8)

Folk prescription

0

(8)

0

(5)

0

(3)

0

(4)

0

(11)

0

(9)

0

(20)

0

(25)

Traditional Chinese medicine (TCM) practitioner/prescription

1

(12)

2

(10)

1

(10)

1

(6)

1

(22)

3

(16)

5

(38)

6

(48)

Folk or TCM surgery

0

(8)

0

(4)

0

(7)

0

(0)

0

(15)

0

(4)

0

(19)

0

(24)

Shaman, other religious healer

1

(5)

1

(8)

2

(3)

3

(5)

3

(8)

3

(13)

6

(21)

8

(26)

Itinerant practitioner

0

(2)

0

(6)

0

(0)

0

(3)

0

(2)

0

(9)

0

(11)

0

(14)

Prayer

0

(0)

0

(4)

0

(0)

0

(7)

0

(0)

0

(11)

0

(11)

0

(14)

No treatment

0

(0)

0

(0)

1

(0)

1

(0)

1

(0)

1

(0)

2

(0)

3

(0)

self-esteem (represented by several of the categories listed) are widespread. (See tables 6 and 7.) We shall discuss these social effects below, when we develop key themes that emerged in respondents' accounts of their experiences of epilepsy.

The Social Experience of Suffering: The Social Course of Illness

Epidemiologists in North America indicate that among epilepsy patients in biomedical treatment who are followed for twenty years, two-thirds will have become seizure-free for five years or more (Annegers, Hauser, and Celoeback 1979; Hauser 1993:165–169; Commission on Epilepsy, Risks, and Insurance 1993). They also report that seizures recur in 25 percent of patients who continue medication, whereas they occur in 45 percent of those who cease taking medication. Clinical epidemiological research shows that if seizures are not controlled in the first year following onset, only 60 percent of patients can be expected to enter remission; and after four years of uncontrolled seizures, this figure drops precipitously to 10 percent. China's epilepsy experts have not published data on each of these prognostic issues. Chinese findings do show that in retrospective assessment 40 percent of 448 patients with epilepsy who had received no anti-epileptic drugs had gone into remission for two years and 27 percent had done so for five years (Zhou 1989). If the North American findings are also relevant for the experience of Chinese patients, then we can see why there is a large difference between the relative optimism of health professionals and the somewhat more pessimistic view of families and patients. For the professional the effect of treatment is much better than no treatment, and the earlier the treatment is begun the higher the rate of success. For patients and families the situation is less clearcut, because they can see for themselves, in their own experience and that of others, that seizures may continue in spite of treatment, and during periods of no treatment there may be no seizures. Thus, in the absolutist idiom of the local world of sufferers, as opposed to the probability-based world of professionals, the efficacy of the treatment of epilepsy is ambiguous.

In our Chinese sample, relatively few patients had experienced remission (in the technical biomedical definition, become seizure-free

 
 

Table 6 Effects on Family (N = 80)

 

Ningxia

Shanxi

Total

 

Urban

Rural

Urban

Rural

Urban

Rural

Total

Percentage

Stigma

19

19

13

10

32

29

61

76

"Loss of face," diulian

13

11

5

5

18

16

34

43

Emotional burden

20

20

19

20

39

40

79

99

Family and marital conflict

16

14

10

6

26

20

46

58

Financial problems

19

20

12

14

31

34

65

81

Work problems

9

6

10

0

19

6

25

31

Children's problems

10

4

2

2

12

6

18

23

School failure

2

0

0

1

2

1

3

4

Relations with others

15

15

10

5

25

20

45

56

Quality of life

18

20

10

6

28

26

54

68

 
 

Table 7 Effects on Sick Person (N = 80)

 

Ningxia

Shanxi

Total

 

Urban

Rural

Urban

Rural

Urban

Rural

Total

Percentage

Stigma

20

16

17

18

37

34

71

89

"Loss of face," diulian

15

13

15

10

39

23

53

66

Self-esteem

19

14

18

17

37

31

68

85

Emotional burden

20

19

19

20

39

39

78

98

School failure

6

11

4

0

10

11

21

26

Marital and family conflict

16

17

8

7

24

24

48

60

Arranging marriage

7

8

2

4

9

12

21

26

Work problems

18

14

16

12

34

26

60

75

Financial problems

14

19

14

14

28

33

61

76

Relations with others

17

17

15

9

32

26

58

73

Quality of life

17

17

16

13

33

30

63

79

 

for five years); many had frequent seizures in spite of taking biomedical drugs (mean: four seizures each month). Half did regard their current treatment as "effective," but most assessed efficacy only over a period of weeks or months, a notion that is markedly different from the biomedical category of remission. Thus, "efficacy," in medical anthropological terms, involves different and even contested formulations.

Our evaluation of compliance with biomedical recommendations was limited to asking patients and family members if they had stopped using prescribed medication. Because Chinese for a variety of reasons, like people elsewhere, may not wish to tell professionals if they have discontinued or altered the prescribed regimen, our evaluation, if anything, is likely to seriously underestimate noncompliance. More than one quarter of our respondents, nonetheless, told us that they had stopped their treatment overall. The figure increases for specific treatments. When asked about Dilantin, a common anti-epilepsy drug, twenty-four of sixty-one (39 percent) for whom it was prescribed had ceased taking it on their own: ten because they evaluated it as ineffective, six because of side effects, one because it was too expensive, and seven for other reasons. Similarly, out of twenty-eight patients who were prescribed phenobarbital, another commonly used drug, seven stopped taking it because they thought it was ineffective, five because of side effects, one because of its expense, and six for other reasons. Thus, most (nineteen out of twenty-eight, or 68 percent) had decided not to continue the recommended medication. This is a common finding cross-culturally; it is a powerful corrective to the biomedical bias that the doctor controls the treatment. To understand why patients and families decide to do what they do, it is essential to understand their experiences of illness and of treatment.

Numbers do not provide an adequate account of what those experiences are like. What they do show is that the course of this chronic condition is complex and plural, and often uncertain. Patients and families grapple with many difficulties. The resources that they require to be successful in coping with a chronic condition, especially in times of exigency, are usually greatly limited, constrained by what their work units are ready to support, which is often the minimum they can get away with paying, by their own marginal reserves, and by other demands and opportunities of their local settings. Those local settings include both formal and informal sectors of health care, and networks of connections (guanxi wang ) that can mobilize needed resources, or further drain reserves. Interpersonal networks, work units, and the sectors of care may combine in one case of epilepsy to lighten financial and emotional burdens and to minimize the effects of bias so that disability is avoided. In another case, the local world of social experience may deepen the suffering of patient and family. Epilepsy, in turn, can effect changes in those worlds, altering the experience of families, networks, and work units, as, for example, when the social and financial relations of network members are placed under great pressure by a serious recrudescence of seizures such that reciprocity is broken and bitter resentment results.

Examining the themes that emerge from patient and family accounts, we focus on several that illustrate the social experience of epilepsy in local worlds and how the course of epilepsy affects and is affected by those local contexts. In a society of more than 1.1 billion people there are thousands of local contexts and very substantial diversity. It would hardly be acceptable to generalize to this multitudinousness from a small sample. That is not our intention. Instead, we seek to illustrate key types of interpersonal issues that are at stake in the contexts of our respondents.

Suffering as Social Experience

The Western tradition's emphasis on the subjective feelings of the afflicted individual, often viewed as isolated and forlorn, is the dominant analytic paradigm for understanding the suffering that results from serious chronic illness and disability (Kleinman 1988a:3–30, 100–200; Morris 1991:244–266). So framed, suffering becomes the pain, hurt, loss, and search for meaning of a unique person who alone must bear the deep burden of his or her troubles. From Greek tragedy through the Bible to the works of Shakespeare and the rest of the Western literary canon, and onward to contemporary literature, the paradigmatic locus of suffering is the private space of the person with the problem: the fallen hero, the sinner, the leper, the bereaved spouse, the epileptic, the victim. Chinese culture too has many examples in its poetry and painting of the individual sufferer (Elvin 1985: 156–189), but to a greater extent the Chinese tradition has taken the locus of suffering to be the intersubjective space of interactions, especially in families (Kleinman and Kleinman 1991). Viewed this way, suffering is a mode of social experience. The point is not to minimize the seriousness of the problems faced by individual patients with epilepsy in our study but rather to appreciate the importance that they and their families attribute to the interpersonal, relational locus of hardship among the members of the family. Indeed, this intersubjective sensibility frequently leads family members to emphasize their own adversity as equivalent to or even greater than the patient's experience.

His disease brings our family lots of trouble. The heaviest burden is in our minds. I'm always crying about it. I have no money to give our son treatment. Wouldn't it be better for me to die? Others raise sons in order to have blessings in their old age. But what do I have? I'll only reap hardships and worry as long as I live. There is no one in my family to look after him.
Mother of a twenty-five-year-old son with epilepsy

I'm afraid I will not live too long, so my children will endure hardships.
Thirty-seven-year-old woman with epilepsy

For her mother and me, the illness is like a heavy stone.
Father of a fifteen-year-old epileptic girl

To have someone sick in the family is the greatest burden any family can bear…. This is extremely bitter for him [husband]. For his child to have a disease that can't be cured … As for me, I couldn't be more saddened either …
Mother of a twenty-year-old epileptic son

My life depends on him and his support. Because of this disease, my sons and their wives don't treat us well. This saddens me, makes me feel depressed and disheartened.
Wife of a sixty-six-year-old peasant farmer with epilepsy

But my burden how heavy, how heavy it is.
Husband of a forty-six-year-old woman with epilepsy

The focus of concern is on the family and its members. What is most at stake in suffering is the abridgment of the family's aspirations, the threat to the life chances of its members, the loss and hurt of the others. Fei Xiaotong, China's doyen of anthropology, reasons that Chinese society is based upon relational ties of the self (Fei 1992:24–25). The family's success is as much the means of fulfillment of its individual members as it is the furtherance of the long collective project of ancestors and descendants. The self is its roles and relations with others in the family (and in turn with their collective and individual networks). Suffering, therefore, is as much the intersubjective experience of parents, spouses, siblings, and children as that of the sick person. As Fei puts it: "Your relatives and you are from the same blood; you have all sprouted from one root. In principle, you share the same fate; your pains and sorrows are interconnected, and so you should help meet each other's needs" (ibid.:124–125).

The construction of suffering as social experience is neither unknown nor unimportant in the West (Bowker 1970); that it is privileged in Chinese society should make us sensitive to its significance elsewhere as well. Appreciating the implications of the intersubjective experience of suffering begins with understanding its epistemological and moral basis but eventually requires that we understand suffering as a different way of living with illness in the social world, a different ontology of epilepsy.

Epilepsy, Marriage, and the Social Obligation of Caregiving

For Chinese parents the presence of a child disabled by sickness means that they are responsible for his or her care until they or the child dies, or until that son or daughter marries (Xiong et al. 1994). With marriage, the responsibility for care is shifted to the spouse and their future children. Thus, there is great pressure to arrange marriage. To do so, parents try to disguise that their child has epilepsy. If they can't do that, they will barter for a spouse with promises of an urban residence permit or a job. Illness and disability restrict the pool of potential marriageable partners to those who also have illness or disability and to those who are poorer, more rural, less educated, and physically less attractive. The consequences of disguise and barter are fraught with interpersonal tensions that parents, patient, and spouse must negotiate over the long term. But not to marry is still worse: it threatens the centrality of family in Chinese society.

My mother introduced my husband to me…. I did not tell him I had epilepsy. I cheated him. But during the wedding ceremony I had a convulsion and shouted out. Afterwards, I explained to him … now he is always angry.
Forty-one-year-old woman with epilepsy

… my family has to pay a lot of money to get a groom to move into our house.
Twenty-two-year-old unmarried woman with epilepsy

Her future has been destroyed. This illness must affect her marriage prospects.
Mother of nineteen-year-old unmarried epileptic

With an illness like this, no one wants to marry me…. I dare not think about my future prospects…. The greatest effect this illness has on me is that I no longer have any hope about my future…. I cannot get married.
Her daughter "He would be better after he married," we said. So we found him a wife. After he married he went to see his father-in-law. At their home he had a convulsion. They were frightened out of their wits! His father-in-law asked me, "What's happened?" But I did not dare tell him the truth about it. I was afraid his daughter would divorce my son. I told him, "It's the first attack. I don't know what happened."
Father of twenty-two-year-old with epilepsy

If I weren't sick … I wouldn't have had to marry a husband like this one. I'm not satisfied with him even now.
Thirty-three-year-old woman with epilepsy

If his illness cannot be cured, and he remains unmarried, his mother and me will worry about him our whole life.
Father of twenty-nine-year-old epileptic son

Financial Burdens

Many respondents hold that the financial consequences of epilepsy are serious and even ruinous. Perhaps no other aspect of social life so clearly shows the power of chronic illness to affect social worlds and reciprocally of those worlds to influence the course of illness and treatment. The current economic transformation of Chinese society marks finances as a major issue of the times, especially so in very poor regions where our study was conducted.

As the following excerpts disclose, some peasant farmers and laborers in our sample lived at the very brink of financial catastrophe. The social welfare net of communalized life is no longer available to prevent the poorest in China from falling into extreme poverty. In low-income societies in Asia, Africa, and Latin America and among the poor in high-income societies, all that it takes to push families off their thin perch is a serious illness. The economic constraints on the social course of epilepsy and other chronic illnesses often mean the difference between receiving treatment and not, between remission and relapse. The illness, in turn, transforms the economic conditions of everyday life, using up meager reserves, creating or deepening debt, forcing families into humiliating and often unavailing negotiations with creditors, who are themselves under financial pressure. The outcome is illness as the precipitant of end-stage destitution. This is a powerful social consequence of illness that deserves far more attention in medical anthropology.

Our economic condition has become worse. I have not found any way to make money, and spend all my time with him; each day I look after him. We couldn't buy what we want to buy because we have to save money to treat the disease for my son.
Father of a young patient

Now our living standards are lower than ever. We have no money to buy vegetables and meat. We eat only rice and flour. We eat meat only once a month or every two weeks. Before we bought lots of apples. But not now. Even during the summer months, watermelons, other melons, we scarcely buy any at all. Even our children's clothes, we haven't money to buy them.
Fifty-five-year-old male patient

For his illness, we have spent over ten thousand yuan, most of which is borrowed from other families. Usually we would be saving money. We don't dare to think of what will happen later on. We have no way out.
Father of epilepsy patient

Sometimes when he wants to borrow money from his older brother, he won't give him any, and the elder brother says, "You're strong enough, but you can't make money, and can't even support yourself!" His wife also complains about him and says, "You're a disabled fellow who can't make money! No money, there's nothing for you." He can't even afford to buy chemical fertilizer from the production team.
Father of twenty-five-year-old peasant farmer

There are eight people in my family who count on me. I could do whatever I wanted if I were not ill. Now I have this disease. I can't go outside and earn our living, so our economic situation is very bad. Our children have no clothes to wear, you can see their backsides. It is not like this for other people's children. I have two children who cannot afford to pay the school fees. It is very embarrasing to ask for a subsidy from the school. I cannot do farm work. I don't have enough strength to do it. The administration did not give me any subsidy. Now our life is filled with bitter hardships. The more children there are, the worse it is. My wife also has an illness. She is very weak and hasn't enough strength to work either. Each day we eat only two meals. We eat no fish or meat or even eggs during the year, because we cannot afford to buy them. We are satisfied if we eat only rice…. There was no one to do the farm work. No one to help me. I was so worried I cried. I could not go out to make money…. Nowadays everything takes money.
Fifty-six-year-old peasant farmer with epilepsy

Sometimes my unit doesn't give me reimbursement for the costs of the medicine. I have to pay by myself. Each time when I ask for reimbursement, I must speak many nice and flattering words to them. If they are happy that day perhaps they will reimburse me. This disease needs a lot of money; it is as if it were a bottomless pit that can never be filled.
Thirty-three-year-old woman with epilepsy

To avoid such catastrophic consequences, families offer what resistance they can muster to the local pressures that threaten to overwhelm them. Such resistance might include "noncompliance" or foot-dragging with treatment for seizures which is unacceptably costly, and also concealment and disguise to reduce the abridgment of life chances, the use of euphemism, protective ingratiation, defaulting on debts, manipulation of strangers and members of social networks, and even the employment of local idioms of fate and victimization—all strategic actions in the struggle to cope. Resistance to stigmatization is also a strategic action to keep a family's place in the social order, a cultural performance with the objective of maintaining respectability and holding on to moral, as well as financial, capital.[6]

Stigma, Face, and Delegitimation: The Moral Experience of Epilepsy

Recent research in the West challenges the idea that the stigma of epilepsy is unrelenting and its effects always devastating (Jensen and Dam 1992). In those whose seizures are in remission, psychosocial functioning has been reported as high, with low levels of distress (Jacoby 1992). In the early phase of epilepsy, the diagnosis itself, pace labeling theorists, does not seem to create distress (Chaplin et al. 1992). Severity and chronicity of seizures seem to best predict psychosocial responses. Most epileptics avoid serious psychosocial problems. Public information campaigns in Western societies have improved public attitudes toward epilepsy sufferers. In the United States, the Americans with Disabilities Act of 1989, a watershed in the legal protection of the rights of the disabled, has benefitted epilepsy sufferers' quest for employment and insurance by reducing institutional discrimination.[7]

The situation of epilepsy in interior China, and in other low-income regions, is altogether different. Even though Deng Xiaoping's paraplegic son, Deng Pufang, has popularized the plight of the disabled generally, investing political capital in a domain that had previously received almost no national attention, the public response to epilepsy, especially in the improverished region where our research was conducted, is unchanged. Those with seizures routinely experience discrimination in schools, in the workplace, and in the community.

Most patients in our sample are in a chronic phase with frequent seizures. For them and for their families, the serious consequences of epilepsy are intensified by Chinese society's prioritizing of social control as the chief concern in the societal response to this and to other chronic conditions (e.g., schizophrenia, mental retardation, substance abuse) in which behavior is affected (Phillips 1993; Fei 1992:28). The emphasis on social control, rather than patient rights, means that students with epilepsy may be removed from the classroom, workers with epilepsy may not be permitted to carry on with their jobs, and work units may discriminate against patients and families who are requesting more resources for treatment.

Social control also works through stigma. Because of their fear that the entire family will be disgraced, family members conceal the diagnosis, patients may drop out of treatment, and often families sequester their epileptic members at home. As already noted, they resist the negative effects of social control. Overprotection of sufferers, a form of intra-familial social control aimed at preventing epileptic family members from being publicly shamed and protecting them from potential physical harm, is too often the chief constraint on patients' life chances.[8] Spouses and parents may stop working and give up all other activities so that they can constantly attend affected kin. Well intentioned though it be, overprotection may convert impairment into disability and handicap.

As in the West, stigma is a moral category. Yet in the Chinese context, moral blame is not applied to the patient alone but extends to the entire family. Ideas that attribute the cause of epilepsy to bad fate, heredity, negative geomantic forces, and the malign influences of gods, ghosts, or ancestors—all are accusations about the moral status of the family. Inasmuch as Chinese society turns on the individual's kinship circle and social network, families and networks that are morally compromised are perceived as ineffective and indeed actually can become so as members drop out and their social-relational power is lost. The moral effects of epilepsy cross from the social body to the physical body. The moral status of the person is his or her face (lianmian ); social relations "give face" or "save face." To "lose face" is to carry the social experience of shame into the inner experience of the bodyself (Kleinman and Kleinman 1994). The indigenous Chinese model of stigma, however, is a sociosomatic one that frames intersubjective delegitimation, not spoiled personal identity, as the central process. Since the person is constructed in Chinese culture as a relational self, delegitimation is the most fundamental assault the person can experience (Fei 1992:24–25).

The moral crisis of epilepsy occurs because of the delegitimation of the person and the family in a structure of social relationships that affects marriage, livelihood, and all aspects of social intercourse. The moral capital of the family and the network is spent down. Over the long term, delegitimation is routinized, so that patient and family are regarded as morally bankrupt and capable of bankrupting others. The ruins of social relations ruin lives. Renqing, favor, the affect central to social exchange, can neither be given nor received. To lose face, to be unable to allocate renqing, to experience delegitimation means that the social course of epilepsy for patients and families is potentially a form of social death (Hwang 1987; King 1991). Just as loss of vitality (qi ), in indigenous common sense, leads to death of the body, so too devitalized interpersonal networks, believed to be contaminated by bad fate and therefore feared to be contagious, can also lead to the death of connections, the very essence of social death among Chinese. It is not at all surprising, therefore, to what extent families will go to ward off, to resist, delegitimacy.

We don't want others to know about his disease. He's grown up now. It is not good that others know about this kind of illness. Now the four of us think that other people all look down on us. We only tell our family … things are well with us, and don't tell them about our problems. They all think that everything is well with us and that we are lucky.
Mother of nineteen-year-old epileptic son

I think this illness makes me lose face.
Twenty-two-year-old female with epilepsy

I don't want anyone to talk about my disease. When I'm sick, I think I'm inferior to others.
Twenty-year-old female patient

I always feel I am inferior to others. I can't raise my head in front of others.
Forty-eight-year-old male patient

Because my wife has this illness, I have lost jobs. I don't like to mention this matter to my friends and coworkers. I'm afraid others will ask me about it, and I wouldn't know how to respond. I don't like to go out with her, or see a film. I'm afraid of what others will say. And I'm afraid that she will have an attack in front of others.
Husband of a thirty-year-old patient

Conclusion

Our findings, limited though they be, support the idea that epilepsy is best regarded as possessing a social course (Ware and Kleinman 1992). We use these words to draw a specific contrast with the biomedical idea of the natural course of disease, including epilepsy. The social course of epilepsy indicates that epilepsy develops in a local context where economic, moral, and social institutional factors powerfully affect the lived experience of seizures, treatment, and their social consequences. The social course of epilepsy, furthermore, is plural, heterogeneous, and changing. It is as distinctive as are different moral worlds, different social networks, different social histories.

To understand that lived experience, the suffering associated with epilepsy has to be viewed as occupying an interpersonal space, a world of situated social experience that connects moral status with bodily status, family with afflicted person, perhaps even social networks with neural networks. The social experience of epilepsy is multitudinous, yet difference is also constrained by powerful factors such as deprivation and delegitimation (Kleinman 1992:169–197). Relevant social theories are needed to better understand the social life of illness and the ill. In addition to stigma theory, we suggest other pertinent social theoretical issues that are emergent in the worlds of the patients and families in our study: delegitimation, sociosomatics, efficacy and compliance as socially contested evaluations, different social ontologies of suffering, and coping as resistance. Together these concepts begin, in a small way, to fill in the map of the social course of disease . What we have said about epilepsy can be applied to other chronic conditions. Perhaps no domain of health is more ripe for the development of social theory.

Treatment of epilepsy in low-income societies like China currently centers on pharmacology. The central issues for public health policy have been to provide access to health services that can deliver effective treatment, and to focus on preventable causes. Framing epilepsy in terms of its social course suggests that to improve the quality of life and reduce disability, it is essential that health and social policy address the context of social experience. Stigma, institutional discrimination, the relatively high cost of care in a setting of chronic deprivation, and the other specific social consequences we have delineated, including the social resistance put up by sufferers, are as important for health and health policy as is basic medical services. Indeed, they are as salient for the content of medical care as are diagnosis and pharmacology. The social course of illness constitutes much of what is meant by prognosis. Health education, disability laws and services, community action projects, and work- and family-based rehabilitation programs are essential to this orientation.

Epilepsy in China indicates that health policy is inseparable from social policy, and that social policy is inseparable from social theory. Social theoretical innovations are necessary if policy is to address the large variety of local communities and collective experiences. Especially salient is the powerful constraint of circumstances of deep deprivation, which affect so many globally. To bring together social and health policy, narratives as well as numbers, social services along with health services, and social theory with health science perspectives should be the challenge for policy formulation.

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