MICHAEL SWERDLOW

"CHRONIC1TY," "NERVIOS," AND COMMUNITY CARE: A CASE STUDY OF PUERTO RICAN PSYCHIATRIC PATIENTS IN NEW YORK CITY

ABSTRACT. The role of ethnicity, community structure, and folk concepts of mental illness in facilitating the adaptation of long term psychiatric patients to community living has received little attention. This article examines the cultural concepts of mental illness and the community involvement of 30 Puerto Rican psychiatric patients participating in a New York City treamaent program. It is shown that many of the attributes usually associated with chronic mental illness do not apply to this population. It is argued that the folk concept of nervios helps to foster the integration of these patients in a wide range of community networks. The impact of gentrification on these patients' community integration is also discussed.

INTRODUCTION

While the relationship of culture to long term mental illness has been an important focus of study within medical anthropology, the link between ethnicity, community structure, and de-institutionalization has not been thoroughly explored. Consequently, there has been a tendency to conceptualize the de-institutionalized as a singular group, sharing a common set of attributes, which are generally subsumed under the rubric of "chronicity" (Torry, Wolfe, and Flynn 1988; Kupers 1981). These attributes include: social isolation from non-patient peers; lack of a positive social role; dependency on formal institutions; and work disability. By describing my research with 30 Puerto Rican long term psychiatric patients involved in a New York City treatment program, I will demonstrate that the attributes of chronicity are not universal. I will show how the folk concept of n e r v i o s and local level social organization play key roles in mediating many of the attributes of chronicity, especially among women. The negative impact of gentrification on local social organization will also be examined. To provide a framework for my discussion, I will begin by briefly outlining the history of the de-institutionalization movement. Following this discussion, I will describe the concept of n e r v i o s , and show how it provides an important conceptual basis for the acceptance of the mentally ill in this community. Next, by describing the informants' daily routines, I will show how specific cultural patterns - such as extended family and non-familial personalized social Culture, Medicine and Psychiatry 16:217-235, 1992. © 1992Kluwer Academic Publishers. Printed in the Netherlands.

218

MICHAEL SWERDLOW

relationships - act as important mechanisms for facilitating the integration of the seriously mentally ill in the larger community. Finally, by integrating my findings in a broad cross-cultural framework, I will demonstrate that efforts to medicalize cultural concepts of mental illness can undermine community support systems for the mentally ill.

COMMUNITY CARE AND LONG TERM MENTAL ILLNESS The nature of the integration and role of the seriously mentally ill in mainstream society has remained a dilemma for our culture for well over a century. By the late nineteenth century, the belief in the rehabilitative nature of institutions, coupled with industrialization, urbanization, and the massive immigration of Europeans led to the development of the state hospital system. Despite attempts by reformers, the system remained intact for nearly 100 years. In the late 1950s and early 1960s, humanitarian concerns, financial considerations, and the development of psychotropic medications led to the policy of caring for the mentally ill in a community context. Initially, the development of community care was hailed as a "revolution," comparable to Pinel freeing the "lunatics" of Pads in the eighteenth century, and Freud's discovery of the unconscious (New York Times: May 17, 1963). Mental health professionals, legislators, and others believed that it was finally possible to create a system of care that would not only provide safe, humane, and efficacious care, but would also minimize the stigmatization of the mentally ill and thereby facilitate their social integration. This view was clearly expressed by President Kennedy: (Community care).., makes it possible for most of the mentally ill to be successful and quickly treated in their own communities and returned to a useful place in society (New York Times: February 6, 1963). However, today there is a growing consensus that this movement has largely failed. During the 1970s, research evaluating the impact of de-institutionalization began to document the social isolation, housing dilemmas, and financial difficulties experienced by many long term psychiatric patients. Reich (1973) found that in New York State most of the discharged psychiatric patients from state hospitals were referred to single room occupancy hotels where they were often victimized by crime. Lamb (1972), in a five year follow up study of discharged state hospital patients, found that a significant proportion were living in a large boarding homes receiving little more than custodial care. Research conducted throughout the 1980s indicated that the social conditions and marginalization of the seriously mentally ill was worsening. By employing an ethnographic methodology, Hopper and Baxter (1981), documented the problem of homelessness and social disenfranchisement among many of de-

COMMUNITY CARE OF PUERTO RICANS IN NEW YORK

219

institutionalized in New York City. In another ethnography, Estroff (1981) described the experience of a group of long term psychiatric patients in a day treatment program. She found that many continued to remain isolated from mainstream society as most of their daily contacts were limited to other patients and mental health professionals. Moreover, she argued that the life style associated with chronic mental illness - which include work disability, lack of positive social role, social isolation, etc. - is socioculturally constructed. That is, rather than viewing this life pattern as a universally given consequence of long term mental illness, she argued it resulted in a large part from a specific set of socio-cultural conditions in which the paradoxes of the psychiatric and social service systems play a significant role. While work such as Estroff's has deepened our understanding of the larger cultural dynamics associated with long term mental illness, there has been very little research which explores the role that culture plays in mediating the nature of the community experience of the long term mentally ill. In the sections that follow, I will show how Puerto Rican concepts of mental illness structure the meaning and social role of the mentally ill in their subculture.

RESEARCH CONTEXT The research for this paper was carded out over a twenty month period, between 1981 and 1983, in Chelsea, at the time a working class Puerto Rican community on Manhattan's lower westside. The research was sponsored by the department of psychiatry of a large voluntary hospital as well as the Wenner-Gren Foundation. Approximately thirty Puerto Rican patients participated in this study. The median age was 56 years old. Of the thirty informants, 22 were women and 8 were men. Half of the informants were divorced, while the remaining half were almost equally divided into two groups: married or single. One informant was widowed. All of the women had married at some point their lives. Of the eight men in this study, only two had married. The patients selected for this study were all participants in a special treatment program specifically designed for a "chronic" psychiatric population with a history of multiple hospitalizations, work disability, and the need for medication. According to a pamphlet distributed to potential patients, the purpose of the program is to "...serve as a halfway point between the dependence of hospitalization, either full time or by day, and more independent living." In order to achieve this goal, the program offers medication management, art therapy, and group therapy. Each patient was also assigned a social worker who could provide individual counseling and advocacy for social services. Since the psychiatric staff was interested in obtaining anthropological

220

MICHAEL SWERDLOW

information regarding the Puerto Rican patients, it was decided my research finding would be enhanced if I was not given other than the most basic psychiatric data for each patient. Consequently, the patients' detailed psychiatric histories never became a major focus of this study. However, all of the patients were diagnosed with severe psychiatric disorders. Schizophrenia was the most common diagnosis. Of the thirty patients in this study, 28 were diagnosed with some form of schizophrenia and two were diagnosed with manic-depressive illness. This diagnostic breakdown reflects the general psychiatric nature of the non-hispanic patients in the program. At the time of the research, the Puerto Rican patients had averaged eight years of participation in the program. All of the patients received psychotropic medication, the most common being Haldol and Prolixin. In addition to their medication management with the psychiatrist, all of the Puerto Rican patients participated in the bi-weekly Grupo Hispano Americano, an open-ended rap group, facilitated by a Cuban-born social worker, specifically designed as a forum for the Spanish speaking patients in the program. The topics discussed in the group included: family issues, housing problems, politics. During the course of my research, I became an active participant in this group. It was through this group that I gained the trust of the patients to be able to conduct my participant observation in the community setting.

CULTURAL CONCEPTIONS OF MENTAL ILLNESS Studies of folk conceptions of mental illness have demonstrated a wide range of variation in the way in which it is defined (Edgerton 1966; Locke 1982; Scheper-Hughes 1979; Townsend 1978). This research has shown that implicit in folk concepts of mental illness is a theory of causation, an explanation of how the illness functions, beliefs about sick role expectations, and a particular meaning which is ascribed to the illness (Kleinman 1978, 1980). One such folk conception is nervios, which is a term used by many Latin Americans to refer to a wide army of "...distressing emotional states and illness phenomena (Jenkins 1988:316)." According to this folk conceptualization nervios afflicts people who are facing difficulties in their everyday life, such as family disruptions and economic hardships (Guamaccia and Farias 1988; Low 1988; Jenkins 1988). According to Garrison (1977), nervios is a socially accepted and sanctioned response to high levels of stress. What is of particular significance to my findings was that my informants and their families, despite the "chronic" nature of their illness - repeated hospitalizations, dependence on psychotropic medication, the inability to preform major social roles - interpreted their distress as nervios and not the much more stigmatizing folk concept of locura.

COMMUNITY CARE OF PUERTO RICANS IN NEW YORK

221

In comparing the concept o f nervios to locura, Harwood has written: Locura, on the one hand, refers to unpredictable behavior, often without regard for selfpreservation; on the other hand, nervios may include such symptoms as chronic agitation, inability to concentrate, or pacing and crying, or silent brooding in its depressive manifestations. While "nerves" may be treated with rest, change of scene, medication, or talking, sufferers of locura are stigmatized and thought to require physical restraint and confinement (1977:423). The classification o f m y informants' distress as nervios has an important normalizing and integrative function. First o f all, since nervios is a condition which can affect anyone experiencing high degrees o f stress, no sharp qualitative distinction is m a d e between the patient and the rest o f the community. B y defining their distress as nervios, the informants did not define themselves as psychiatric patients. In fact, only one patient was aware o f his psychiatric diagnosis. Another important consequence o f interpreting mental illness as nervios was that informants and their families expected the possibility o f recovery. Nervios is not viewed as a chronic malady, but rather as episodic. Similar findings regarding the normalizing role o f using the nervios classification to interpret mental illness has been discussed b y Jenkins in her research with Mexican-American families o f schizophrenic patients (1988). She has written that: By invoking a condition that in its milder forms is normal and within the range of the socially acceptable, the differences between the ill relative and the rest of the family are minimized. In the descriptions of nervios several relatives reported that they too, suffered from this problem, although in a milder form. This perspective serves to reinforce and affirm family bonds by casting the ill person as one "just like us only more so." Consistent with Puerto Rican folk theories o f causation, the patients explained the source o f their nervios as a result o f specific interpersonal stressors, not from biogenetic and/or biochemical determinants. The most c o m m o n theme in their explanations was the emphasis on family stress. F o r m a n y o f the patients, this involved physical punishment as a child or break-up o f the family. Carmen, a sixty year old woman, remembered one incident that was particularly meaningful in her explanation o f her nervios: I was six years old when my father caught me playing with a top when I should have been doing housework. He beat me, and I broke a leg and two of my front teeth when he threw me down. My mother came home from her job and took me to the doctor. I had a cast on for three months. Another informant, Jose, a forty-five y e a r old man, told about the beating he received from his mother: When she would get mad at me when I was a kid, she would beat me on the head with a stick. Thats why I think I have all these problems in my head and feel so nervous. Conception, a sixty y e a r old w o m a n who lives alone, recalled how her nervios

222

MICHAEL SWERDLOW

began when her daughter and grandson moved out of her apartment: I raised that boy since he was born in my house. When he and his mother left to live in the Bronx, I was very upset and became "nervous" (me puse nerviosa). Some informants attributed their condition to working at jobs they disliked. Mercedes, a seventy year old woman, worked for a year as a sewing machine operator in a clothing factory. She hated the job, she says, and stayed there only for the needed money. She claims that her nervios began during this time. While nervios was experienced as a source of distress, hope for recovery was still seen as possible as evidenced by their health seeking behaviors. Julio, for example, utilized spiritualist healing. His visits occurred at irregular intervals when he was experiencing severe distress. Julio believed that he needed both the medical doctors and the spiritualists, since the doctor's pills may help him relax, but will not cure him. Similarly, the spiritualist encouraged him to continue his treatments at the medical clinic. This practice of dual use is consistent with the literature on health seeking behavior among Puerto Ricans (Harwood 1977:499). In addition to Julio's use of spiritualists, 60 percent of the patients reported that at one time in their lives they had consulted a spiritualist to help them deal with nervios. However, many of these informants found the results unsatisfactory, and many expressed quite negative feelings, claiming it was either "nonsense" and/or financially exploitative. This interpretation may result from their disappointment in their inability to live their lives free from nervios. Much more common than organized spiritualist healing was the use of a wide variety of informal family and community-based treatment modalities. Seventy percent of the informants reported using home remedies for dealing with nervios. These remedies included, over-the-counter drugs as well as herbs and plants found at local botanicas. A common non-prescription drug that was used to relieve headaches from nervios was a decongestant rub that was applied to forehead. Julio, Carmelo, Graciela, and other patients carded a Vick's jar with them in order to be prepared for a headache. A mixture of herbs, tilo (linden tea), cloves, and anise was commonly used as a relaxer to help patients sleep. Within the traditional biomedical paradigm, religion is not usually considered part of a health care system. However, for many of the informants religion played an important role in their attempt to cope with nervios. Religious practice was not only seen as a possible curative, but also provided a meaning for the suffering that they associated with nervios. All of the Catholic patients offered daily prayers to their patron saint in hope of being cured. Like Catholicism, Pentecostalism played an important therapeutic role. For twenty percent of the informants, involvement in a Pentecostal storefront church played a major role in their health seeking behavior. During periods of acute crisis, church members would actively pray for the individual, and would also visit them at the hospital. Moreover, patients would often participate in

COMMUNITY CARE OF PUERTO RICANS IN NEW YORK

223

ceremonies at the church along with other people suffering from a wide range o f "physical" and "emotional" ailments. At these ceremonies, which were a regular part o f a weekly service, the "sick" and "suffering" joined together at the front of the church while the pastor and congregation asked the holy spirit to heal. For those individuals with chronic conditions, Pentecostal beliefs provided an explanation and justification for an individual's suffering. This explanation was usually based on the notion that suffering was a test from God. This concept is especially important to the "sick" individual's family as it provides an important rationale for caring for this individual. Jose's wife Suzi was a devoted Pentecostal. For her, Jose's bad moods, depressions, and need for occasional hospitalization was a challenge from God. As she stated: I feel so bad for Jose. He suffers so much. But God make all us struggle with something. This belief in the potential for wellness contrasts sharply with the view of the clinic staff who expressed little hope for "cure." A social worker characterized this perspective in the following manner: We are here to treat people with severe illnesses. It is a chronic program, and the people will be sick for the rest of their lives. We can only really hope to control the symptoms through medication and some activities therapy. Another staff member, a psychiatric nurse, expressed a similar attitude: Let's face it, most of our patients don't change that much. And you don't expect them to. I don't have many expectations. I've had patients for years that just never change. You get to realize that all of them have their limitations. One o f the doctors characterized the patients in the following terms: Probably the only thing they (patients) all have in common is that they all require chronic maintenance care. They are not people who are ill for a period of time then the treatment is finished and they can return to a dally life. Although it happens from time to time, for the most part, people are here forever. These divergent expectations, one embedded in the concept o f nervios, and the other in modern psychiatric practice, can create difficult situations for patients faced with competing interpretations of what constitutes normative behavior. Carrnelo, for example, was in a situation where he had to mediate between family and professional expectations. He was expected by his family to find a job, and contribute part of his salary to the family. Since these expectations were not realized, there was often conflict and tension between Carmelo and his mother and brother. However, at the clinic, the staff did not encourage Carmelo to return to work, and every attempt was made to ensure his continued support on social security disability.

224

MICHAEL SWERDLOW INTEGRATIVE MECHANISMS WITHIN THE NEIGHBORHOOD

Almost all of the informants of this study had come to New York City during the 1950s and 1960s as part of the larger Puerto Rican migration to the U.S. mainland. The majority of informants moved directly to the Chelsea neighborhood from rural communities in Puerto Rico. During this period, affordable housing was not only available in Chelsea, but the neighborhood was also located near the garment district which provided employment for many of those arriving from Puerto Rico. This neighborhood, which as been known as "Little Spain" since the turn of the century, provided a wide range of existing institutions to meet the needs of the Puerto Rican migrants. The first Spanish language Catholic church in New York City, Our Lady of Guadalupe, built over 80 years ago, is located in Chelsea, and continues to be the center of Spanish Catholicism in the city. Other institutions which serve the Spanish speaking community include bookstores, restaurants, funeral homes, specialized food stores, and mutual aid societies. During my research, Chelsea still retained many of its neighborhood characteristics, although the process of gentrification had begun to change the nature of the social ecology. Of special significance was the common use of public space such as stoops, sidewalks, and small parks which offered informants opportunities for social contact. Another was the existence of local family-owned stores, such as bodegas (small markets), restaurants, and botanicas (herb stores for curing) which not only provided employment and credit, but also offered many informants a place to spend time where they were known and accepted despite their sometimes odd appearance and behavior. Still another was the existence of extended kin networks in close proximity. As my case illustrations will demonstrate, this neighborhood quality provided many of the informants opportunities for involvement with non-patient peers and positive social functions and roles which were key elements in facilitating their community integration.

Carmelo Carmelo, a 36 year old male, has been diagnosed as a schizophrenic and has been hospitalized numerous times over the last ten years. Due to the local conception of mental illness his position in the community is not marginalize,d. He has lived in the same two bedroom apartment with his mother and younger brother since he arrived from Puerto Rico 26 years ago. He has several aunts and cousins living on the same block who he interacts with on a daily basis. One of his cousins made him the god-father of one of her children.

COMMUNITY CARE OF PUERTO RICANS IN NEW YORK

225

During the warmer months, Carmelo spends much of his day on his block, where is well known as "un poco tostado a veces" (a little crazy at times). Nonetheless, he is included in conversations, card games, block parties, and other social activities on the block. Carmelo also works two to three hours a day in a bodega across the street from his building, stocking shelves and cleaning. He likes the job because, besides the pay which he says allows him to buy cigarettes and gifts for his godchild, he is not tied to a rigid work schedule. As long as he completes his duties by the end of the day, he can work when he wants.

Jose

Unlike Carmelo, Jose was much less involved with extended kin, and local businesses. However, his daily patterns reflect the importance of neighbors and religious involvement. Jose is forty-five years old and diagnosed as a paranoid schizophrenic. Jose is married to Suzi, a fifty-five year old woman. He comes from a large family in rural Puerto Rico. At the age of thirteen, Jose left home and worked his way to Miami where he worked as a farmworker. Twenty years ago he came to New York where he met his wife. Jose and his wife, Suzi, live in a one-room apartment. Jose has many relatives in the New York City area, but seldom visits them. His mother, for instance, lives with Jose's older brother in another section of the city, but Jose only visits about once a year. For the last 13 years, Jose has not worked. In order to meet his basic needs, he relies on a monthly social security check and his wife's retirement pension from the International Ladies Garment Workers Union. Although Jose and his wife are the only Hispanics in their building, and speak little English, they have developed friendships and visiting patterns with many of the other tenants. They both spend many of their aftemoons with the superintendent of the building, an elderly Irish woman who has lived in the building for twenty years. This woman has lent Jose and his wife money when they were in need. Jose also helps the superintendent occasionally when she needs assistance in lifting or moving heavy items. Participation in a storefront Pentecostal church provides Jose with daily structure and emotional support. He attends the services in the evenings and when, as he says, "I feel well," he is active in the men's association. When he is hospitalized, church members come to visit and pray for his quick recovery. Jose does not interact with any set of male peers in his immediate neighborhood. He fears getting involved with the men in his neighborhood as "they are no good, and are all into drinking and getting into trouble."

226

MICHAEL SWERDLOW Julio

Julio was the most socially isolated informant. Yet the community provided an informal, personalized social context in which he could operate as a known individual, and not as a "street person" to be ignored or harassed. Julio is forty-five years old, single, and lives alone in a deteriorating tenement studio apartment. He has been hospitalized on many occasions for suicide attempts as well as acute psychotic episodes. Julio is diagnosed as a schizophrenic. As a result of his medication, he began to manifest symptoms of tardive dyskinesia. He came to New York City twenty-five years ago, because he could not find steady work in Puerto Rico. Both of his parents have died, and he has two sisters, one who lives in Puerto Rico and the other in the Bronx. He has not spoken with his sister in Puerto Rico for many years, and rarely visits his sister in the Bronx. Julio does not visit with any of the other tenants in his building. He spends much of his time alone drawing and painting in his apartment. Julio does not have any set of friends with whom he interacts regularly. He spends much of his day walking the streets in the neighborhood, collecting material, usually paper, which he uses for his art projects. Julio also frequents the Salvation Army thrift store in the neighborhood looking for shoes and clothes. In his dress and personal hygiene, Julio often appeared as homeless. Despite his apparent isolation and odd appearance, however, Julio was well known to certain bodegas and restaurants. On various occasions during my research, bodega owners asked Julio to draw signs for their stores for which he was paid. He was also permitted to sit in restaurants, coffee shops, and lunch counters and meander over a cup of coffee for hours. In fact, most of my interviews with Julio took place in these locations. In contrast to the men in this study, family interactions played a much greater role in women's daily routines and also provided more opportunities for support. Specifically, the frequency of contact with kin living in the same neighborhood was greater among women, as was the proportion of kin to non-kin in their networks. The importance of kinship ties in the dally routines of women informants is illustrated by Graciela and Isabel. Graciela Graciela is forty-five years old, divorced and has two grown children. She is diagnosed as a paranoid schizophrenic. Graeiela has lived in New York City for fifteen years, and is not currently working. In the past, before "hearing voices," she worked in a garment factory as a sewing machine operator.

COMMUNITY CARE OF PUERTO RICANS IN NEW YORK

227

Graciela is often afraid to walk the streets since she thinks people are making fun of her and want to harm her. When she is feeling this way, she spends most of her day inside her apartment. However, she stated that she got satisfaction from preparing elaborate meals for herself, family, and friends. Graciela lives alone in a one bedroom apartment. Her oldest son lives upstairs in the same building with his wife and eight year old daughter. Her son and daughter-in-law used to live with her, but she says "its better for me that they have their own place." Her other son lives in Puerto Rico, and visits about once a year. Graciela does not interact with the people in her building, and feels that many of them are "no good." When Graciela is "feeling well," she has a busy daily routine. Since both her son and daughter-in-law work, Graciela walks her granddaughter to school. At lunch time she meets the granddaughter at school and brings her and a school mate home for lunch. After lunch she accompanies the children back to school. In the afternoon she does most of her shopping, as she is afraid to leave the apartment after dark. At 3:30 p.m. she returns to school to pick up her granddaughter, and is responsible for her care until the parents return home at 6 p.m. At 4 p.m. Graciela begins to prepare the evening meal for herself, granddaughter, son, and daughter-in-law. After the evening meal, which is eaten in the son's apartment, she returns to her own apartment to watch television until she goes to sleep.

Isabel

Isabel, a sixty-three year old women, is diagnosed as a schizophrenic. Like Graciela, much of her day revolves around family functions. Isabel is divorced and has three sons. She has lived in New York City for twenty-three years, and resides in a two-bedroom apartment in a large housing project. One of her sons, who recently was divorced, has moved in with her "until he gets on his feet again". The other sons have returned to Puerto Rico to live with their father. The son who lives with her is the father of two young children, a six year old boy and an eight year old girl. Although these children live with their mother, they reside in the same housing project. Isabel sees her grandchildren daily, when they come to her house after school for refreshments. Although the children's mother allows them to visit Isabel, they must leave her house before their father returns home. Isabel claims that the hostility between her son and daughter-in-law makes her uneasy and anxious. Isabel also regularly visits a younger sister who lives nearby. Isabel often wakes up early in the morning to attend the early mass at the neighborhood church. She usually accompanies a close female friend who lives in the building. Although Isabel does not belong to any of the formal church

228

MICHAEL SWERDLOW

associations, when, as she says, "I feel good, not nervios" she participates in some of the activities they sponsor, such as picnics, and visits to other churches. When viewed in the context of the increasing trend toward social marginalization of long term psychiatric patients (Estroff 1981; Chamberlin 1978), the social integration of the Puerto Rican patients is striking. As I have pointed out earlier, in spite of living in a community setting, most long term psychiatric patients continue to spend much of their time associating with other patients. Moreover, contacts with non-patients are largely limited to professionals working within the mental health care system. Therefore, their status with "normals" is restricted to the role of patient. In contrast, the Puerto Rican patients studied in this project had daily contact with individuals and networks outside the realm of the mental health care system. While many of the patients have known each other for years and have established friendships in the clinic setting, they did not socialize or seek friendships with each other outside of the program walls. Julio and Carmelo, for example, have enjoyed each other's company in the Group Hispano Americano for twelve years, and live one block from each other, yet they do not socialize in the community. As Carmelo stated: Why should I hang-out with Julio or any of the other people at the clinic. I have my own friends. Another salient characteristic which emerged from an analysis of this data was the gender differences. As previously mentioned, men as a whole were more isolated and relied to a much greater extent on various casual non-kin relationships (these differences are illustrated in Appendix 1). It is also important to point out that not only is the frequency of contact with kin greater among women, but their relationships have a different character. Women's interactions, for instance, are generally symmetrical, since they play a much less dependent role within the family. Graciela and Isabel's caretaker role in their families exemplify this pattern. These differences may in part result from the nature of gender role expectations in Puerto Rican culture (Padilla 1976; Fitzpatrick 1971). For example, a man's sense of self-worth largely derives from his ability to work and provide for the family. However, given the inability of many of my male informants to function within the labor market, they are unable to fulfill a central cultural expectation. Therefore, their function within the family is problematic. In contrast, women's ideal role is not necessarily tied to the public domain of work. Their domain and sense of worth centers around the domestic sphere which is still largely outside the realm of bureaucratic work routines. Within this domain, interpersonal relations are personalized and time is not so rigidly

COMMUNITY CARE OF PUERTO RICANS IN NEW YORK

229

scheduled. Consequently, in spite of the episodic nature of their emotional distress, the cultural context affords women a greater degree of acceptability than among the men. Garrison, in describing the social networks of a group of schizophrenic Puerto Rican women living in New York City, has observed that their cultural context made psychiatric disability less impairing than for women in other cultures: The schizophrenic women are, expectably, relatively restricted in their movements, differentiation of time and variety of activities and social contacts. Only one was working. These traits are considered symptomatic of schizophrenia to the extent they are related to social withdrawal, and they may well be symptomatic in the schizophrenic Puerto Rican women studied. But these are also medal patterns in this culture, which makes these particular symptoms less impairing for the Puerto Rican woman than they might be for someone in another culture (1978:571). My research indicates that it may also make their symptoms less debilitating than for Puerto Rican men.

COMMUNITY CHANGE AND GENTRIFICATION During the course of my research a rapid process of gentrification began to seriously change the social ecology of the Puerto Rican community. Gentdfication not only increased the stress levels of many of the patients involved in this study, but it also began to undermine important aspects of their community support system. In a survey I conducted, I found that within a six block area which served as a focal point for socialization within the Hispanic community as a whole and for my informants in particular, 52% of the stores were less than two years old. All of these stores - boutiques, restaurants, bars, etc. - catered to mostly the new residents in the community. One of the coffee shops where Julio spent much of his time was forced to close because of rent increases. Because of a lack of affordable housing it also became more difficult to maintain the pattern of extended family living in close proximity. Many young Hispanic families seeking to establish independent households, for example, were forced to move outside of the neighborhood. As a consequence, the parents of those couples who came to Chelsea in the 1950s and 1960s to establish their own household and raise their children found themselves increasingly separated from their adult children and grandchildren. As a local priest observed: The older people who raised families here can't have their children live near them. The kids who grew up here will have to leave. A similar view was expressed by another priest who was active in community affairs:

230

MICHAEL SWERDLOW

The people (Hispanic community) will be forced to move to the end of the line, where there are few social services. Places like Far Rockaway. Some are ending up on the street, but the neighborhood looks better all the time. During the 20 month period of my research, housing difficulties directly impacted 30% (10) of my informants. One informant, who had lived in the same apartment for 18 years, was forced to leave the Chelsea neighborhood since her building became a co-op. Carmelo was another informant who faced a housing problem. The tenants in the building in which Carmelo lived were engaged in a struggle to stay in their building as the owners wanted all the tenants to vacate. The residents pooled their resources and hired a lawyer. By the end of the research, the legal proceeding had not yet been resolved. Carmelo often expressed fear that the loss of his apartment would not only make it more difficult to keep his family together but that he would have to move out of his neighborhood to an area where he was a stranger. Like Carmelo, Graciela also faced a housing problem. The building owner offered her and the other tenants, which included her son's family, money to move so that the building could be renovated. Although Graciela had a good prospect of obtaining public housing, she did not want to move since she would be separated from her family and her system of care. She stated: When I'm sick who would take care of me if I lived in one of those projects, far away from everything and everyone. I would probably die before they could get to me. During the entire period of my research, Jose and Suzi were pressured to leave their apartment by the building owner. For example, when the landlord did not pay the utility bill, the power company posted signs in their building warning that the power would be discontinued in one week. This occurred four times during the course of the research, and the building was not heated for a two week period during the winter. On one occasion, the owner offered Jose and Suzi money if they moved, claiming that the offer would be rescinded if it wasn't accepted by a particular date. Jose and Suzi eventually moved to a much smaller apartment in the neighborhood at double the cost.

DISCUSSION Having described the nature of the informants' community life as well as their explanatory model of mental illness, I will now turn my attention to examining the significance of this data in the context of cross-cultural studies of schizophrenia. This contextualization is essential in developing the policy and treatment implications of my research. Cross-cultural studies of schizophrenia have indicated that although the primary symptoms can be identified in other cultures, the life trajectory for the

COMMUNITY CARE OF PUERTO RICANS IN NEW YORK

231

"mentally ill" can vary considerably (Diamond 1981). Recent data suggests that in less industrialized areas of the world, individuals recover much sooner and do not necessarily develop the "chronic" life pattern characteristic of individuals in the Western and industrialized world (Cooper and Sartorius 1977; Fortes 1969). Two complementary hypotheses - both relevant to my data - have been offered to account for these outcome differences (Lefley 1990). One, based on a phenomenological orientation, argues that the way in which emotional distress is interpreted plays a major role in outcome. For example, in cultures where schizophrenia is viewed as an acute, rather than a long term condition, recovery is expected, and hence the disabled role is not as rigidly reinforced (Kleinman 1988; Waxler 1977). Along this same line of reasoning, Estroff (1989) has stressed the fundamental role that culturally specific concepts of personhood play in the course and outcome of schizophrenia. In the industrial world, she argues, the individual is viewed as an autonomous being with a fixed meaning. Consequently, the loss of one's normal social role, as may occur during a psychotic episode, is seen to fundamentally change the individual's identity and being. However, in many non-western and traditional cultures, like rural Puerto Rico, the person is viewed as more malleable. Therefore, as with nervios, the occasional disorganization associated with schizophrenia does not necessarily reduce the person's identity to a permanent sick role. Moreover, as we have seen, the interpretation of psychosis as nervios offers an explanation which minimizes social stigmatization and facilitates continued social involvement. In the second explanation, social organizational factors are seen as key in the differential outcomes of serious mental illness (Lefly 1990). Lin and Kleinman (1988), for example, have argued that in traditional societies, or what they call "sociocentric" cultures, there are more extended long term social relationships which help to mitigate against the social isolation and marginalization of the seriously mentally ill. Other researchers have suggested that in more traditional societies, there are also more individuals available in both kin and non-kin networks to assist in caregiving responsibilities (Left 1981). To a certain extent, my findings suggest that a "sociocentric" pattern was operative among the informants of this study. While, as was noted, women were better linked than men, what was unique in this group compared to descriptions of other long term patients was the extent of their social integration in nonpatient networks. That is, most of their needs for day-to-day companionship were met through kin, friends, and informal neighborhood contact, not other patients. Moreover, of special significance was the way in which the community offered productive non-stigmatized social roles - such as Carmelo's job in the bodega and Graciela and Isabel's responsibilities as family caretakers. That these roles could be temporarily suspended during periods of distress, attests to their flexibility in accommodating the needs of long term psychiatric patients. While my data suggest that the Puerto Rican patients in this study do not fit

232

MICHAEL SWERDLOW

the stereotype of chronic psychiatric patients an important question, which remains unresolved, is to what extent does the classification of schizophrenia as nervios impact on prognosis. This is a complex question which will require collaborative ethnographic, epidemiological, and clinical research efforts. However, my findings demonstrate that cultural conceptions of mental illness play a central role in determining the kind of life the seriously mentally ill will experience in our communities. In the case of the Puerto Rican patients I studied, their culture provided an interpretation of mental illness which strongly reinforced and supported one of the major goals of the de-institutionalization m o v e m e n t - community integration. Given the inclusion of these individuals in their community, clinical interventions which aim to medicalize community knowledge by educating patients and families about mental illness must carefully weigh the potential "iatrogenic" effects. A good example of this potential for harm are psychoeducational groups, which are becoming a growing component of community treatment and are designed to help families of the seriously mentally ill cope in more effective ways with their ill family member (McGill and Lee 1986). One of the important goals of psychoeducation groups is to dispel myths surrounding mental illness and to teach families the "correct" information about psychiatric diagnosis, the biochemical and genetic theories of etiology, and the nature of the disease process. While these groups have an important role to play in community care, an approach which views the folk category of nervios as "incorrect" or anachronistic can undermine a very positive conceptualization of emotional distress. While awareness of cultural context is essential in developing appropriate treatment programs for the seriously mentally ill, the success of community treatment must also be viewed as contingent upon social forces outside the realm of the clinical setting. In regard to the patients I studied, an important issue which must be addressed is to what extent can the "sociocentric" pattern continue to function under the pressures of rapid community change and gentrification. St. Mary Hospital Community Mental Health Center 314 Clinton Street Hoboken, NJ 07030 U.S.A.

COMMUNITY CARE OF PUERTO RICANS IN NEW YORK

233

APPENDIX 1 Daily Kinship Contacts of Key Informants Name

Sex

Age

Residence

Marital status

Daily kin contacts

Graciela

F

55

Alone

Divorced

Josephine

F

60

Alone

Divorced

Mercedes Concepcion

F F

70 72

Alone Alone

Widow Divorced

Isabel

F

57

Alone

Divorced

Mercedes Carmen

F F

63 68

Alone HU/SO SOWI

Divorced Married

Diana

F

45

SO/DA

Divorced

Julio Carmelo Lnis Wilfredo Antonio Jose Juan

M M M M M M M

47 38 70 55 49 45 43

Alone MO/BR Alone Alone WI/DA WI SI/SIHU

Single Single Single Divorced Married Married Single

SO/SOWI SODA DA/DADA DADADA SO MO/DA/SI DASO SO/SOSO SODA None HUISOISODA SOWI/DASO SO/SO SO/DA/SI SISO None MO/BR None None WI/DA WI SI/SIHU

Wife = WI; Daughter = DA; Son = SO; Husband = HU; Mother = MO; Brother = BR.

BIBLIOGRAPHY Chamberlin, J. 1978 On Our Own: Patient Controlled Alternatives to the Mental Health System. New York: Hawthorn Books, Inc. Cooper, J., and N. Sartorius 1977 Cultural and Temporal Variations in Schizophrenia: A Speculation on the Importance of Industrialization. British Journal of Psychiatry 130:50-55. Diamond, S. 1981 In Search of the Primitive. A Critique of Civilization. New Brunswick, New Jersey: Transaction. Edgerton, R. 1966 Conceptions of Psychosis in Four African Societies. American Anthropologist 2:408-425. Estroff, S. 1981 Making It Crazy: An Ethnography of Psychiatric Clients in an American Community. Berkeley: University of California Press. 1989 Self, Identity, and Subjective Experiences of Schizophrenia: In Search of the Subject. Schizophrenia Bulletin 15:189-196.

234

MICHAEL SWERDLOW

Fitzpatrick, J. 1971 Puerto Rican Americans: The Meaning of Migration to the Mainland. Englewood Cliffs: Prentice Hall. Fortes, M., and D. Mayer 1969 Psychosis and Social Change Among the Tallensi of Northern Ghana. In Psychiatry in a Changing Society. S.H. Foulkes and G.S. Price, eds. Pp. 33-74. London: Tavistock. Garrison, V. 1977 The Puerto Rican Syndrome in Psychiatry and Espiritismo. In Case Studies in Spirit Possession. V. Crapanzano and V. Garrison, eds. Pp. 383 A.A.8.New York: Wiley Press. 1978 Support Systems of Schizophrenic and Non-Schizophrenic Puerto Rican Migrant Women in New York City. Schizophrenia Bulletin 4(4):561-595. Guarnaccia, P., and Farias, P. 1988 The Social Meaning of Nervios: A Case Study of Central American Women. Social Science and Medicine 26(12):1223-1231. Harwood, A. 1977 Rx: Spiritist as Needed: A Study of a Puerto Rican Community Mental Health Resource. New York: Wiley. Hopper, K., and E. Baxter 1981 Private Lives/Public Spaces. New York: Community Service Society. Jenkins, J. 1988 Ethnopsychiatric Interpretations of Schizophrenic Illness: The Problem of Nervios Within Mexican-American Families. Culture, Medicine, and Psychiatry 12:301-329. Kleinman, A., L. Eisenberg, and B. Good 1978 Culture, Illness, and Care. Annals of Internal Medicine 12:83-93. 1980 Patients and Healers in the Context of Culture. Berkeley: University of California Press. 1988 Rethinking Psychiatry: From Cultural Category to Personal Experience. New York: The Free Press. Kupers, T. 1981 Public Therapy: The Practice of Psychotherapy in the Public Mental Health Clinic. New York: The Free Press. Lamb, H.R. 1972 The Demise of the State Hospital: A Premature Obituary. The Archives of General Psychiatry 26:489--495. Left, J. 1981 Psychiatry Around the Globe: A Transcultural View. New York: Dekker. Lefley, H. 1990 Culture and Chronic Mental Illness. Hospital and Community Psychiatry 41(3):277-286. Lin, K., and A. Kleinman 1988 Psychopathology and Clinical Course of Schizophrenia: A Cross-Culturai Perspective. Schizophrenia Bulletin 14:555-567. Lock, M. 1982 Popular Conceptions of Mental Health in Japan. In Cultural Conceptions of Mental Health and Therapy. A. Marsella and L. White, eds. Pp. 215-233. Dordrecht, Holland: D. Reidel Publishing Co. Low, S. 1988 Health, Culture, and the Nature of Nerves: A Critique. Medical Anthropology 11:91-95.

McGill, C., and E. Lee 1986 Family Psychoeducational Interventions in the Treatment of Schizophrenia. Bulletin of the Menninger Clinic 30:269-286.

COMMUNITY CARE OF PUERTO RICANS IN NEW YORK

235

New York Times 1963 President Seeks Funds to Reduce Mental Illness. Feb. 6. Section H. Part A. New York Times 1963 Psychiatric Gain Cited at Parley. May 17. pg. 67. Padilla, A. 1976 Latino Mental Health: A Review of the Literature. Washington: National Institute of Mental Health. Reich, R. 1973 Care of the Chronically Mentally Ill: A National Disgrace. American Journal of Psychiatry 130:911-912. Scheper-Hughes, N. 1979 Saints, Scholars, and Schizophrenics: Mental Illness in Rural Ireland. Berkeley: University of California Press. Torrey, F., S. Wolfe, and L. Flynn 1988 Care of the Seriously Mentally Ill: A Rating of State Programs. Public Citizen Health Resource Group and the National Alliance for the Mentally Ill. Townsend, J.M. 1978 Cultural Conceptions of Mental Illness. Chicago: University of Chicago Press. Waxier, N. 1977 Is Outcome for Schizophrenia Better in Non-Industrialized Societies. Journal of Nervous and Mental Disease 167:144-158.