Extraordinary Conditions: Culture and Experience in Mental Illness / Edition 1 available in Paperback
With a fine-tuned ethnographic sensibility, Janis H. Jenkins explores the lived experience of psychosis, trauma, and depression among people of diverse cultural orientations, revealing how mental illness engages fundamental human processes of self, desire, gender, identity, attachment, and interpretation. Extraordinary Conditions illuminates the cultural shaping of extreme psychological suffering and the social rendering of the mentally ill as nonhuman or not fully human. Jenkins contends that mental illness is better characterized in terms of struggle than symptoms and that culture is central to all aspects of mental illness from onset to recovery. Her analysis refashions the boundaries between the ordinary and the extraordinary, the routine and the extreme, and the healthy and the pathological. This book asserts that the study of mental illness is indispensable to the anthropological understanding of culture and experience, and reciprocally that understanding culture and experience is critical to the study of mental illness.
|Publisher:||University of California Press|
|Edition description:||First Edition|
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About the Author
Janis H. Jenkins is a psychological/medical anthropologist at the University of California, San Diego, and an internationally recognized scholar in the field of culture and mental health.
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Culture and Experience in Mental Illness
By Janis H. Jenkins
UNIVERSITY OF CALIFORNIA PRESSCopyright © 2015 The Regents of the University of California
All rights reserved.
Cultural Chemistry in the Clozapine Clinic
We see that recovery is an important and fundamental phenomenon. Although the phenomenon will not fit neatly into natural scientific paradigms, those of us who have been disabled know that recovery is real because we have lived it.
— Patricia E. Deegan, "Recovery: The Lived Experience of Rehabilitation"
The clinic in which I was conducting research from 1998 to 2004 was the focus of great media fanfare as the first American site to use a new "miracle drug" for the treatment of schizophrenia. The clinic was featured in the cover story of the July 1992 issue of Time, "New Drug Brings Patients Back to Life," in which clozapine was touted as a "magic bullet." A related article in the same issue was titled "Pills for the Mind." The New York Times published an article that advocated greater access to the new miracle drug, saying, "Many who treat schizophrenia believe clozapine is the most important medication to come along in 30 years. The press is so excited, it keeps using 'Awakenings' in headlines, conjuring images of film star Robert De Niro taking a new medicine suddenly going from comatose to superstar." The Harvard Review of Psychiatry drew attention to the phenomenon of "awakenings" as an unprecedented therapeutic challenge: "often involv[ing] a fundamental reassessment of one's identity, relationships, and purpose in being[,] ... [t]he psychological reaction to dramatic pharmacological response is largely uncharted territory" (Duckworth et al. 1997: 55).
Charting this territory required research involving persons ingesting psychotropic drugs to ascertain their myriad cultural, social, psychological, and biological effects. From an anthropological point of view, this required looking beyond the "main effects" of symptom control. What was needed was a detailed account of the lived experience of those who take these drugs, specifying the social and cultural contexts of claims of drug efficacy. There are several immediate questions from the perspective of persons taking them: How do they work? What are their effects? Do they really help? Are they transformative? What is their meaning? Can drugs really "mean" anything to people? How, anthropologically, could they not? Whyte and colleagues (2003) have intriguingly written of the "social lives of medicines," but what could that mean in the case of psychotropics? Are they like the late-night cavorting yams of the Dobu in Papua, New Guinea, that are magically enticed into a neighbor's garden (Fortune  1963)?
In this chapter I present ethnographic evidence to address these questions, but first I must outline my general approach to the understanding of psychopharmacology in contemporary global societies, which is predicated on recognizing the interrelation of several levels of analysis, including (1) the subjectivity associated with medication use, where subjectivity is understood as the relatively stable yet transformable structure of experience; (2) the potential of psychotropic drugs to affect the self, where self is understood not as a discrete entity but as a configuration of processes by which people orient themselves to their own being, to others, and to the surrounding world; (3) the context of culture, in which the power of cultural meaning involves nothing less than the ability to shape the experience of agony and monotony, relief and recovery, identity and lifeworld among those who take these drugs; and (4) the institutions in which drugs and illness are embedded, including biomedicine, government, nongovernmental organizations (NGOs), insurance companies, the pharmaceutical industry, and the policies and practices of employers.
In this analysis, what sense can there really be to an assertion of a critical interrelation among subjectivity, self, culture, and institutions for an understanding of psychopharmacology? What are psychiatric medications really for? Unbearable suffering? Supplemental nutrient? Demonic affliction? Neuronal misfires? Personality deficits? Bad behavior? Violent behavior? Who are they for? The afflicted who find medications a relief in quieting unrelenting voices? Exposed populations of the elderly, children, indigent recipients of health care, and the mentally ill who are incarcerated?4 In such cases, subjectivity is constrained by institutional structures of global capitalism in tandem with historically deep societal assemblages for social-political control and also in the service of establishing "the normal" (Foucault 1965, 1977; Deleuze and Guattari 1988; Rhodes 2004). This latter question of course concerns not only the use but also the misuse of psychotropic drugs.
None of my cultural analysis is intended to deny or ignore that there are myriad biological processes critical to drug response. Neuroscientific research on correlates, mechanisms, substrates, and biological contexts of psychopharmacologicals has become voluminous (Ng et al. 2013; Stahl 2013). The field of pharmacogenomics, or the way genes influence response to drugs, may shed light on differential individual and group effects, as may the emergent fields of interpersonal and cultural neuroscience (Schore 2003; Lende and Downey 2012; Narváez et al. 2012; Chiao et al. 2013). There are a host of individually variable features of cognition, personality, and the unconscious that are likely to mediate drug response. A significant part of this variation might be explained through emergent theories of epigenetics as the chemical and environmental "turning on/triggering" or "turning off /inhibiting" of genetic codes. Further, in clinical trials, there is the problem for pharmaceutical companies of the statistical "noise" that is the well-known yet little understood "placebo" effect. In line with my approach here, a compelling interpretation conceptualizes the placebo effect as a kind of "meaning response" (Moerman 2002). Ultimately, to theorize the effects of psychoactive drugs, we need a model of the effects of psychopharmaceuticals that is grounded also in the "tuning" of biochemical response inseparable from the "tuning" of socioemotional response, cultural meaning, and ecological constraint. A wide-ranging model is required since surely all are at once integral to experience, to disease and illness processes, and to outcomes.
Within this framework, while we are compelled to attend to the magnitude of what can be an excruciating experience, no less critical are the lengths to which people go to seek relief and to alleviate this suffering, since healing and transformation are no less characteristic of the human condition than are intractability and misery. In the case of mental illness, for better and for worse, the practice of taking psychotropic drugs has increasingly become a central part of the process of seeking relief. Moreover, recovery or at least improvement over time — with and without psychotropic drugs and characterized by great endurance and struggle — is a reality for many people, though the subjective experience and cultural interpretation of the bodily and social effects of medication is anything but simple and straightforward. Finally, taking psychotropic drugs is not merely a routine and pragmatic process of the self. There is marked existential struggle and sociocultural contestation surrounding identity, power, and medication. The decidedly social-relational experience and meaning of medications requires elaboration. As a step in this direction, let us look again at the media attention to the introduction of atypical drugs highlighted at the outset of this chapter.
CULTURAL REPRESENTATIONS OF ATYPICAL ANTIPSYCHOTICS
The heralding of clozapine for use in the treatment of schizophrenia in the United States in Time magazine offers a glimpse of the two-edged popular appeal of the story. On the one hand, reference in the article to the medication as a "magic bullet" conjured the notion of dramatic and much desired improvement that had not occurred through prior use of other medications. The article was quite specific in portraying this drug as a new weapon in the scientific-medical armamentarium, invoking a militaristic metaphor of "a fight" against disease (see Martin 2001) through the highly valued medical competence of physician-scientists (M. Good 1995) while at the same time invoking the idea of magical technique. On the other hand, the christening of this particular medication as a "miracle drug" conjured the notion of a substance imbued with the power to bring patients back to life, invoking not only the power of pharmaceuticals but also the religious metaphor of miraculous healing. The anthropologist will likely see these symbolic connotations in light of Malinowski's (1954) classic discussion of the blurred conjunction of magic, science, and religion in the production of cultural meaning. The historian will most likely be reminded of the intimate connection between alchemy and chemistry in the history of pharmacological treatment. Contemporary discourse on psychopharmacology is steeped in a robust historical link between magic and chemistry.
The other side of this cultural representation, however, is far from celebratory insofar as Time's depiction taps into cultural imagery associated with an all too familiar social stigmatization of the mentally ill. The reproduction of social stigma is evident in two ways. First, in invoking a Christian allusion to resurrection (Wallis and Willwerth 1992), the apparently promising image of healing is embedded in the brutal presumption that persons with schizophrenia had somehow previously been "dead." It is difficult to imagine any social designation more offensive than reference to persons with schizophrenia as not among the living. Second, there is the notion that persons with schizophrenia are not really human but somehow alien. All too often this appears to mean that "they" must lack fundamental human capacities for subjective experience of the self, emotion, and social attachment; such assumptions are not only empirically false but also constitute a punishing cultural conception of persons with mental illness (Jenkins 2004; Kring and Germans 2004).
Another point of emphasis in the Time article was the sense of newly found possibilities to reach developmental milestones missed because of illness, such as participating in a cultural rite of passage like one's high school senior prom. In this bionarrative (see Carpenter-Song 2009a, 2009b), not having done so because the ravages of schizophrenia represents a biographical gap, which the promise of clozapine offered to fill. The article featured a staged event of a "better late than never" prom held for clozapine patients. One young man is shown dancing, presumably enjoying himself enormously, though his dance partner was a hired dance instructor and not a personally arranged date of the sort one imagines for oneself at a high school senior prom.
The New York Times article on clozapine (Winerip 1992), drawing on celebrity images of Robin Williams and Robert De Niro in Penny Marshall's 1990 film, Awakenings, reported that media and medical excitement was momentous because former patients could go from "comatose to superstar." The film had been advertised as a "true story" based on the book of the same title by the neurologist Oliver Sacks (1973) that invoked the image of Washington Irving's (1882) Rip Van Winkle to tell a story of institutionalized patients who became catatonic after having encephalitis. They experienced a dramatic but sadly temporary improvement through another "miracle drug," L-Dopa. The film ends with the protagonist physician standing over the protagonist patient behind a magical Ouija board, directing the patient's hands with the invocation, "Let's begin." The posters and trailers for the film, like the media coverage of clozapine, had tapped into the appeal of miracles and featured the theme of triumph with the opening of new, blue horizons. Reliance on religious language and symbols, along with magical practices, to convey scientific developments in medicine suggest the relevance of the association between these domains as critical to psychiatric discourse and practice.
Posing challenges to the scientific community, the Harvard Review article by Duckworth and colleagues (1997) urged the exploration of "awakenings" as a clinical phenomenon for understanding the dramatic change and subsequent developmental challenges that could occur. Could "awakenings" be understood solely through resort to psychiatric science, or did realms of the unknown somehow come into play? Was the term awakenings merely a literary device to refer to psychological and social processes that could be accounted for biologically when induced by drugs? While in the 1992 Times story the clozapine proponent Herbert Meltzer was careful as a research psychiatrist to point out that recovery is not an overnight phenomenon, in speeches to advocacy groups and conferences he too deployed the term awakenings. Malinowski's intuition about the relation between magic, science, and religion is hardly restricted to small-scale societies. Indeed, a Zenith Goldline Pharmaceuticals advertisement for clozapine in the American Journal of Psychiatry promoted the drug by juxtaposing primitive "myth" of early hominids to modern "fact" in the form of scientific gold.
TOWARD THE STUDY OF CULTURAL CHEMISTRY
Clozapine (brand-name Clozaril), the first atypical, or second-generation, antipsychotic developed, was intended for patients who had little or unsatisfactory response to typical, or first-generation, antipsychotics (primarily phenothiazines such as Thorazine, Mellaril, Stelazine, and Prolixin). Clozaril was also used to replace another drug commonly prescribed during the 1970s, Haldol (haloperidol), a butyrophene derivative with pharmacological effects similar to the phenothiazines. In addition to the claim that it modifies positive symptoms of psychosis better than previous drugs, clozapine was said to have lesser extrapyramidal effects such as tardive dyskinesia and akathesia. Clozapine had already been introduced in Europe in 1971 but was withdrawn from the market in 1975 in the wake of cases of agranulocytosis, some fatal, involving dangerously depleted white blood cells. In the subsequent decade, most clinicians did not look upon clozapine favorably. Following trials that claimed both clinical efficacy and procedures for monitoring blood levels, along with approval by the U.S. Federal Drug Administration (FDA) in 1989, Sandoz Pharmaceutical Corporation brought the drug to the U.S. market in 1990. The drug was promoted as particularly efficacious for conditions of schizophrenia that were considered "treatment-resistant" or "last resort" (Alvir et al. 1993) and prescribed despite the additional risks of seizures, myocarditis, and weight gain. Heady hope accompanied the steady desperation of patients, families, and clinicians dissatisfied with typical antipsychotic drugs. The possibility of improvement appeared to eclipse the substantial risks involved. Clozapine was soon joined on the market and in the clinics in which we were conducting ethnographic research by other atypical antipsychotics such as Risperdal (risperidone), Zyprexa (olanzapine), and Seroquel (quetiapine), along with other drugs such as Geodon (ziparsidone) and Abilify (aripiprazole). Currently, these atypical antipsychotics are prescribed far more commonly than clozapine. Overall, the number of people using atypical antipsychotics increased from 0.3 million in 1996 to 1.6 million in 2001 (Zuvekas 2005). A recent report indicates that Abilify ranked number 1 in sales for all pharmaceuticals sold in the United States (IMS 2014).
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Table of Contents
List of Figures and Tables Prelude and Acknowledgments Introduction: Culture, Mental Illness, and the Extraordinary PART ONE. PSYCHOSIS, PSYCHOPHARMACOLOGY, AND FAMILIES 1. Cultural Chemistry in the Clozapine Clinic 2. This Is How God Wants It? The Struggle of Sebastian 3. Emotion and Conceptions of Mental Illness: The Social Ecology of Families Living with Schizophrenia PART TWO. VIOLENCE, TRAUMA, AND DEPRESSION 4. The Impress of Extremity among Salvadoran Women Refugees 5. Blood and Magic: No Hay que Creer ni Dejar de Creer 6. Trauma and Trouble in the Land of Enchantment Conclusion: Fruits of the Extraordinary Notes Works Cited Index