Silence and Surveillance: Mental Illness, Evidence-Based Practice, and a Foucaultian Lens

Anna Scheyett

ABSTRACT. Evidence-based practice (EBP) has had a significant impact on aspects of social work practice in mental health. It is important for social work to consider EBPs and their implications, particularly around the dynamics of power and potential for coercion and oppression. This paper uses a post-modern lens to examine EBPs and explore the dominant discourses of science and mental illness that are its foundation. Specifically, it uses the work of Michel Foucault to explore three major thematic fields: silenced voice; moral fault; and power and knowledge; and concludes with a discussion of the implications for social work research and practice. [Article copies available for a fee from The
Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: <docdelivery@haworthpress.com> Website: <http://www.HaworthPress.com> 2006 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Mental illness, evidence-based practice, post-modernism, Foucault, consumer, social work research

Anna Scheyett, MSW, LCSW,CASWCM, is Clinical Assistant Professor, School of Social Work, University of North Carolina at Chapel Hill, 301 Pittsboro Street, Chapel Hill, NC 27599-3550 (Email: amscheye@email.unc.edu). The author would like to thank Dr. Leslie Bella for her guidance and support in the development of this paper. Journal of Progressive Human Services, Vol. 17(1) 2006 Available online at http://www.haworthpress.com/web/JPRO 2006 by The Haworth Press, Inc. All rights reserved. doi:10.1300/J059v17n01_05

71

72

JOURNAL OF PROGRESSIVE HUMAN SERVICES

In essence, Foucault says that if you think you understand madnessjust think again by looking at its history. Histories of institutions and treatments have now disclosed extreme varieties of engagement with this problemeach extreme being broadcast in its time with the same reassuring confidence. What evidence is there that our understanding of these phenomena has improved, that present-day certainties are more reliable than those in the past? (Still & Velody, 1992) INTRODUCTION Over the past ten years, evidence-based practice (EBP) has had a significant impact in some areas of social work (Gambrill, 1999) and the field of mental health (Tanenbaum, 2003). EBP is derived from evidence-based medicine, and both share at their foundation the conscientious, explicit, and judicious use of the current best evidence in making decisions about the care of individual patients (Sackett, Rosenberg, & Muir-Gray, 1996). To be considered evidence-based a practice must have been established as effective through scientific research according to set criteria (Mullen, 2002) involving a hierarchical ranking of evidence, with randomized controlled trials ranked highest, typically followed by well-designed non-randomized trials, cohort or case-control trials, multiple time series trials, and finally descriptive studies and case reports (Ganju, 2001). One EBP project that has had a pronounced impact on mental health services in the U.S. is the Evidence-Based Care for Persons with Serious Mental Illness (EBP/SMI) initiative. Led by investigators from the New Hampshire-Dartmouth Psychiatric Research Center, and funded by the Robert Wood Johnson Foundation and the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA), this initiative aimed to identify, from the literature, EBPs for adults with serious mental illnesses (SMI). Using a hierarchical rubric like the one discussed above, the initiative identified six evidence-based practices: (1) medication guidelines; (2) illness management; (3) assertive community treatment; (4) family psychoeducation; (5) supported employment; and (6) integrated substance abuse and mental health treatment (i.e., dual diagnosis services) (Calhoun, 2002). Since research has demonstrated that the majority of services received by people with SMI are

Anna Scheyett

73

not evidence based (Lehman, Steinwachs, & Co-Investigators, 1998), the initiative also had the goal of developing and disseminating training materials based on these EBPs to mental health care providers (Calhoun, 2002). Subsequent actions have included SAMHSA funded pilot sites and toolkits for planning and implementing these EBPs in the U.S.; other countries are looking at these EBPs with interest. Given the alacrity with which some social workers have adopted EBPs in general, and the EBP/SMI initiative in particular, I believe it is important for social workers to consider these practices and their implications thoughtfully. Reducing the painful symptoms of SMI is a goal of the EBP/SMI initiative, and these outcomes do occur. The challenge for us as social workers is to ask At what cost? In this paper I explore this question by stepping outside the positivist paradigm and asking what can be learned about the dynamics of power in mental health best practices from a different frame. Using a post-modern lens to examine the dominant discourses of science and of mental illness that engendered EBP/SMI, what do we see, and can these observations help us as social workers create processes that better meet the wants and needs of individuals labeled with mental illnesses? 1 For this project I utilize some of the concepts developed by Michel Foucault in Madness and Civilization (1965) and in his later works to inform my analysis of EBP/SMI. I also draw from the comments of a number of consumers who have been participants in dialogues and focus groups on EBP that I have facilitated over the past two years (Scheyett & Childers, submitted for publication; Scheyett & McCarthy, 2004) The paper uses a Foucaultian lens to explore EBPs and concludes with a discussion of the implications of these explorations for social work research and practice. EVIDENCE-BASED PRACTICES THROUGH A FOUCAULTIAN LENS In Madness and Civilization (1965) and in his later works such as Power/Knowledge (1980) Foucault offers dramatically nontraditional readings of the history of the treatment of mental illness, the history of confinement, and the nature of power. He examines the dynamic of repressive power in the relationship between Madness2 and Reason, and how this dynamic forms the unrecognized foundation of modern mental health treatment and research. In this article I examine the EBP/SMI initiative using some of Foucaults concepts, specifically the

74

JOURNAL OF PROGRESSIVE HUMAN SERVICES

concepts of silenced voice, moral fault, and the relationships of power and knowledge. Silenced Voice Foucault identifies the development of the internment houses of the mid-seventeenth century as the moment in which Madness was silenced (Rose, 1992). Here, and in subsequent moral treatment, Foucault holds that Madness lost its voice, it was deprived of its language; and although one continued to speak of it, it became impossible for it to speak for itself (Foucault, 1976, p. 69). In losing its voice and place, Madness also lost its meaning. Its language was seen as involutional and self-referential, with no possible meaning for the world of Reason. The dialogue between Madness and Reason was thus silenced, and the language of psychiatry, which is a monologue of reason about madness, has been established only upon the basis of such a silence. (Foucault, 1965, pp. x-xi). The EBP/SMI process would, at first glance, seem to be an effort to rekindle a dialogue between Madness and Reason. Throughout the initiative there is discussion of the importance of consensual values, of including consumers and their families in program development and treatment decisions (Drake et al., 2001), and including them in the EBP/SMI project itself (Calhoun, 2002). However, on closer examination, the initiative can also be seen as yet another monologue of Reason, stripping the voice of Madness of meaning and power. This can be seen in the establishment of the research questions and research processes informing EBPs, and the resultant EBP interventions. Silence and Research EBP is based in positivist research, which is driven by inquiry; thus it is essential to consider whose voice asks the questions. Are the outcomes studied in EBP research those of value to the consumer or to the mental health system? For example, in ACT research the most commonly examined outcome is days of hospitalization (Bond, McGrew, & Fekete, 1995), but though this results in lower system costs there is no indication that this outcome is the one of most importance to consumers. A consumer/advocate discussed this lack of consumer voice in defining EBP outcomes by saying I am concerned that the definition of success [in EBP research] is generated by constructs and hypotheses, and may miss what consumers consider to be success (Scheyett &

Anna Scheyett

75

Childers, submitted for publication). I would argue that the voice of the consumer is seldom if ever present in the genesis of the positivist research question. This occurs, at least in part, because in research consumers are the Other, the objects to be studied. Dialogue between researchers and consumers, between the researcher and the object of research, between Reason and the Other within the discourse of science, does not occur because dialogue requires two entities that recognize each others commonalities and humanity, while an Other can have nothing of value to say. The silence of Madness is imposed by the structure of the research upon which EBP is built. Silence echoes in the research process as it does in the research questioning. At their foundation, EBPs are based in a hierarchy that does not acknowledge the validity of consumer voicequalitative studies, interviews, first person accounts are not considered evidence and are ignored. Knowledge creation based in the direct voice of the consumer, considering positionality and contextuality, is prohibited, despite a body of literature on the possibility of rigor and trustworthiness in qualitative studies (Rodwell, 1998). I would argue that without this consumer voice in the research process there is no possibility for creating a knowledge-based system that facilitates consumer agency, autonomy, and the potential for recovery. For example, had there been a consideration of the consumer literature on the trauma of coercion and lack of privacy and autonomy in treatment in its analysis, then ACT may not have been seen as a benign and effective intervention (Deegan, 1997; Watts & Priebe, 2002). Consumer voice, and research methods which privilege consumer voice, are essential if evidence is to reflect the reality and meaning of consumers lives; as one consumer stated If we continue to use the definition that it [research] works only if you use a randomized controlled trial, we lose. (Scheyett & Childers, submitted for publication). Silence and Intervention The six specific EBP/SMI interventions are also filled with the silenced voices of consumers. Foucault states that Madness is judged only by its acts; it is not accused of intentions, nor are its secrets to be fathomed. Madness is responsible only for that part of itself which is visible. (Foucault, 1965, p. 250). In the EBP/SMI initiative there is little focus on meaning and subjective experience; practices emphasize skills and behaviors, work and education, with little acknowledgment of or attention to the existential challenges and subjective struggles

76

JOURNAL OF PROGRESSIVE HUMAN SERVICES

consumers may face. Nowhere in the EBP/SMI interventions is counseling provided to explore these important life questions. A consumer described this as a process where What weve done is taken away everybodys ability to struggle with and figure out why . . . (K.T., personal communication, 2003). Another consumer described the emptiness beneath surface EBP successes by saying, A person who receive services from an ACT team and make no community disturbances is a good outcomethey are quiet, perhaps leading a life of desperate isolation, but considered a success. (Scheyett & Childers, submitted for publication). The EBP/SMI researchers themselves acknowledge that in interventions such as illness management there is a paucity of exploration of outcomes such as hope, meaning, and purpose (Mueser et al., 2002). Nowhere in the actual services of the EBP/SMI is there the space, essential for recovery, where consumers can voice and grapple with the meaning of their experience. The EBP/SMI practice of medication management, which focuses on algorithms to determine which medications should be given to a psychiatric patient, (Gilbert, Altshuler, Rago et al., 1998; Mellman, et al., 2001) is a specific arena where consumer voice is conspicuously silenced. Much emphasis is given to medication compliance, to being good, obedient, and taking medication as told to by the psychiatrist. Non-compliance is implicitly seen as transgression, willful disobedience, rather than as assertion of autonomy and a clear communication from the consumer about his/her dissatisfaction with the effects of the medication. The physician, guided by research-based standardized instruments, is the judge of adequacy of response and tolerability of side effects (Mellman et al., 2001); the individual experiencing the effects is rendered invisible and silent while the providers voice is privileged. There is no opportunity for the practitioner to explore the meaning of taking medication for the consumer, no chance for the consumer to articulate his/her story and tell of medications impact on the individuals sense of self and identity (Rodwell, 1998). Given this, consumers concern about the dehumanizing effects of guidelines is understandable, and the reassurance of consideration of the individual (Mellman et al., 2001) rings hollow in a dynamic where the consumer is neither truly seen nor heard. Illness management is an EBP designed to help consumers cooperate with professional treatment and increase skills in symptom management and relapse prevention (Herz, Lamberti, Mintz et al., 2000), life coping skills (Hogarty, Greenwald, Ulrich et al., 1997), and medication compliance (Cramer & Rosenheck, 1999), all by means of increasing

Anna Scheyett

77

insight into their SMI, and providing education, training, and behavioral tailoring (Mueser et al., 2002). Here both the individuals voice and that of other consumers is de-privileged in comparison with the professionals knowledge. Illness management is a professional service, conducted in the context of a therapeutic relationship in which the teacher . . . is responsible for the overall treatment of the individuals psychiatric disorder. (Mueser et al., 2002, p. 1273). Thus illness management is hierarchically structured, with the provider imparting wisdom to the consumer in the context of a larger relationship within a structure where the provider is responsible or in charge of treatment. Though illness management includes respecting patients rights to make decisions about their own treatment (p. 1274), one must ask if a consumer can truly voice his/her wishes within this larger dynamic of responsibility and power. In addition, when writing of illness management, researchers are careful to distinguish it from illness self-management, which is peer-facilitated and helps people learn to cope and take care of themselves by connecting with others who have had similar experiences. The dialogic intervention of peer-to-peer support, of consumer voice speaking its experience and wisdom to another, is not included because rigorous controlled research evaluating the effects of these programs has not been completed (Mueser et al., 2002, p. 1273); this simply highlights the fact that the consumer voice in peer support is not valued enough to be equally researched in EBP-acceptable ways. It should be noted, however, that a body of literature on the effectiveness of peer services and supports does exist, which includes both qualitative and quantitative studies (Scheyett, 2000); extensive research has also been done on consumer-operated programs (Campbell & Leaver, 2003). This privileging of professional, disciplinary knowledge over the situated knowledge of the consumer is also seen in the family psychoeducation EBP, where professional experts provide support, skill training, and information regarding mental illness (Dixon et al., 2001); consumers are not co-leaders who can provide insights and information to families based on their life experiences in this EBP model. Similar to illness management, the EBPs assertive community treatment (ACT) and integrated dual diagnosis services (which often uses ACT as a part of the intervention) are grounded in a structure where providers are responsible for consumers and their voice is privileged over consumer voice (Drake et al., 2001). ACT is an intensive service where a provider team assumes responsibility for a consumer around the clock in their community settings (Burns & Santos, 1995; Phillips et al., 2001). A core principle of ACT is that the team is

78

JOURNAL OF PROGRESSIVE HUMAN SERVICES

assertive in engaging individuals in treatment and monitoring their progress (Phillips et al., 2001, p. 773, emphasis mine), whether the consumer wishes to be engaged or not. The consumers ability to voice his/her wishes and choices is silenced in the larger paternalistic structure of ACT-team-knows-best, which provides services whether the consumer wants them or not. Questions can also be raised about consumer voice and choice in the EBP supported employment (Bond et al., 1999, 2001). Supported employment programs use a rapid job search, individualized to the strengths, work experience, and preferences of consumers (Abrams, DonAroma, & Karan, 1997), and support services for employment are closely integrated with mental health services. I would argue that though the strengths and preferences focus may allow consumer voice, within the mental health systems paternalistic structure it may be difficult for consumers to truly express their wishes, and they may again experience silenced voice, now in a vocational arena. The fact that primary concerns about supported employment include low paying unskilled jobs and short retention times (Bond et al., 2001) raises the question of whether consumers really prefer and choose these menial jobs, or whether they acquiesce silently to professional suggestion and then leave the work site as quickly as feasible. In summary, recovery, the putative goal of the EBP/SMI initiative, is an individualized journey towards purpose and meaning. However, mental health services based in the EBP/SMI initiative may create iatrogenic barriers in this journey. In both its epistemology and its practices, the EBP/SMI initiative silences consumer voice and thus precludes exploration of the issues of meaning and existence essential to recovery. Moral Fault In his history of Madness, Foucault posits that the classical eras confinement of Madness shifted during the nineteenth century, and Madness was seen ultimately as the psychological effect of a moral fault (Foucault, 1965, p. 158). With the assumption of moral flaw, Madness also became burdened with guilt, with responsibility for its actions, and with conscience. No longer were the physical chains of the internment houses necessary, Madness was (and is) contained in the psychic chains of a treatment that is moral sadism (Foucault, 1976). The punitive treatment entails work, surveillance, and the admission of guilt and wrong and return to reason.

Anna Scheyett

79

Work, as a central component of the treatment of Madness, serves a number of functions. It is to some extent productive, but its most important functions are as symbolic participation in the world of Reason and as punishment/treatment. Surveillance also plays an essential role in treatment, with constant watchfulness by professionals making a continual demand for conforming behavior. Under constant surveillance, what Peter (2000) and others have called the normalizing gaze, Madness learns to behave always as if the normalizing gaze was upon it, and to restrain itself. In this surveillance, the observers power inserts itself into [the individuals] actions and attitudes, their discourses, learning processes, and everyday lives. (Foucault, 1980a, p. 39). In this internalized process of moral and social rehabilitation, Madness must learn to see itself as mad, express remorse for wrong behaviors and thinking, and return to the world of Reason (Gordon, 1992). Echoes of Foucaults concepts of work, surveillance, and the language of moral fault thread their way through the EBP/SMI. Work is the core of the supported employment EBP (Bond et al., 2001). It is seen as both productive and therapeutic (what Foucault might call disciplinary); not only does work increase consumers resources, but studies have shown that it improves self-esteem and controls symptoms (Bond et al., 2001)the structure of labor is good discipline, providing organization and promoting a return to Reason. Though not overtly articulated, the emphasis on work in the EBP/SMI raises questions about utilizing work as a moral treatment, a way of redeeming consumers and making them more worthy in the eyes of the community, earning back a position lost by the flaw of mental illness. Work becomes a symbolic act that signifies consumers as productive citizens, with all the moral connotations implicit in that phrase. The dynamics of surveillance can also be seen in the EBP/SMI, justified by the consumers flaw of lack of insight. The EBP Assertive Community Treatment (ACT), which can also be a part of the integrated dual diagnosis EBP (Mercer-McFadden, Drake, Brown et al., 1997), has been referred to as a hospital without walls (Swartz, 1995), and a number of consumer groups have raised concerns about its aggressive pursuit of consumers in the community (Fischer & Ahern, 2000). The ACT team defines itself as entirely responsible for its consumers, delivering medications, teaching skills, managing money, and ensuring attendance at all appointments (Phillips et al., 2001), thus enclosing them in a structure of surveillance and power. ACT can be seen as the ultimate surveillance in the Foucaultian sense, a surveillance that can enter ones home, speak with ones neighbors and associates, even control

80

JOURNAL OF PROGRESSIVE HUMAN SERVICES

ones money, housing, and medications, all outside the institutional setting. One consumer discussed the impact of ACTs surveillance by saying so many professionals could take over somebodys life swallow them up until they disappear (E.C. personal communication, 2004). This pursuit and surveillance is also seen in supported employment, where practitioners provide job coaching on site (Bond et al., 2001); consumers must behave at work and cannot escape the watchful eye of the professional. Even family psychoeducation can be seen as having an element of surveillance, with family members trained by professionals to watch for signs of relapse and non-compliance. This surveillance also extends forward in time, as many EBPsACT, supported employment, dual diagnosisare of long-term or indefinite duration. Consumers may never know if or when they will be freed from the watchful eye of the system. Moral fault is implicit in much of the focus on medications in the EBP/SMI initiative. In the medication management EBP, the language used for individuals whose symptoms are not reduced by medication is treatment resistant (Kane, Honigfeld, Singer et al., 1997; Mellman et al., 2001). This language suggests that the consumer is somehow fighting against and is at fault for the lack of improvement he/she experiences. Consumers who do not take their medication are non-compliant, with poor insight into their illness, in other words, flawed and disobedient. The illness management EBP works to help people collaborate with providers, to take the skills and structures providers give, and use them to return to stabilitya process akin to what Foucault refers to as the exterior Cogito of the physician structuring the flawed self of the weak and wrong-headed patient (Foucault, 1965). Part of illness management involves the consumer accepting his/her illness in a process often referred to as developing insight, reminiscent of the confessions of guilt in Madness and remorseful cooperation with the nineteenth century physician required in the asylum. Aggressive and coercive efforts are used in this process of acceptance. For example, the integrated dual diagnosis EBPs (Drake, Essock et al., 2001; Mueser et al., 2002) includes motivational interviewing (an intervention where professionals persuade consumers to comply with treatment using strategies some see as verbal double-binds and manipulation), and coercive efforts such as payeeships and involuntary outpatient commitment. The EBP/SMI initiative reinforces the sense of moral fault underpinning SMI, using the flaws of lack of cooperation, compliance, and insight as justification for the coercion of surveillance and labor.

Anna Scheyett

81

Interestingly, this sense of moral fault is diffused beyond consumers to practitioners not willing to engage in EBPs. Throughout the EBP/SMI there is an emphasis on fidelity to the models (Calhoun, 2002), a need to keep faith with the interventions and not wander astray. It has been noted in the literature that proponents of EBP in general argue that it is unethical not to support EBP (Gupta, 2003) and that pursuit of EBP is equivalent to pursuit of health for patients (Miettinen, 2003). Thus, those practitioners who question EBP are impugned as both unethical and unfaithful to patients and to researchserious moral flaws indeed. Power and Knowledge For Foucault, power and knowledge are inextricably intertwined (Foucault, 1980a; Gordon, 1992). In Western society, science is privileged as the true source of knowledge, giving it tremendous power. Foucault views this privileging of science as a form of repression, and asks which speaking, discoursing subjectswhich subjects of experience and knowledgedo you then want to diminish when you say: I who conduct this discourse am conducting a scientific discourse and I am a scientist? (Foucault, 1980b, p. 85). Thus there is tremendous power in claiming the knowledge of scientific evidence-based practices such as the EBP/SMI initiative. Holding the knowledge of best practices creates a hierarchy of power, with wise researchers and providers who know what is best bestowing their disciplinary knowledge (and thus the possibility of recovery) upon consumers and their families. The recipients (such as families receiving EBP psychoeducation, or consumers receiving EBP illness management) can only accept this knowledge without question; their experience and views are rendered powerless by the authoritative stance of knowledge. This knowledge supports the wielding of power within mental health systems; the coercive power that can be used in ACT or any other EBP is justified because the research evidence has shown it to be effective. However, the values, paradigms, and assumptions behind this power are not examined because the knowledge justification makes them right, obvious, and true. However, from a recovery perspective, as one consumer stated Unless we have a shared set of values and paradigms, no amount of EBP will make a difference. (Scheyett & Childers, submitted for publication). Power uses knowledge for its own political purposes as can be seen in the EBP/SMI initiative. Following the logic of EBP, any practice that does not meet the EBP criteria is not best, is flawed, and is viewed as wrong or untrustworthy. Implicit here is that the source of the flaw, the

82

JOURNAL OF PROGRESSIVE HUMAN SERVICES

problem in the mental health system that limits recovery potential, is poor practices and flawed individuals. Nowhere in the EBP/SMI are the larger political and structural issues that exacerbate or induce SMI examined and challenged. Structural issues that create barriers to implementation of EBPs are addressed, but larger issues such as poverty, discrimination, stigma, and violence are not examined. For example, the difficulty consumers may face when attempting to find employment is defined as a lack of work skills, not the stigma and discrimination perpetrated by employers and other community members (Link, Cullen, Mirotznik, & Struening, 1992). Foucault demonstrated that in the classical era the state used its power to create a system whereby medical knowledge labeled and confined individuals for what were ultimately economic and political (rather than medical) reasons. Concerned individuals might wonder if EBPs are a modern example of this same dynamic, of political self-protection at a systems level. Concerned social workers must be aware that if we focus exclusively at the individual level and do not acknowledge and address the structural barriers and oppressions facing consumers, we allow and support their perpetuation (Dominelli, 1988; Ife, 1997; Morell, 1996). As a final comment, it is ironic to note that despite the demand for rigorous research as the standard for practices, evidence-based medicine in general (of which EBP is a part) has no solid evidence base-no broad-based and rigorous studies have demonstrated that having practitioners provide services in an evidence-based medicine system improves patient outcomes (Miles, Grey, Polychronis, Price, & Melchiorri, 2003). Here the power inherent in the privileged position of research creates a knowledge reality called EBP, even though this knowledge is (by EBPs own standard) deficient and this knowledge reality is imposed upon de-privileged and much less powerful consumers. CONCLUSIONS AND RECOMMENDATIONS In examining the EBP/SMI initiative using some of the concepts of Foucault, significant issues emerge, issues of discounted and silenced consumer voice, of surveillance in a hospital without walls, of moral flaw in both SMI and its treatment, and of repression. Because of these issues, the EBP/SMI initiative can inhibit, rather than promote, recovery. However, before moving to a discussion of possible social work responses, I believe it is important to acknowledge both the limitations of Foucaults concepts, and the productive aspects of EBP.

Anna Scheyett

83

Limitations Foucault has been criticized both for distorting history and for romanticizing Madness (Erevelles, 2002; Gelb, 2000; Merquoir, 1986). In his work the suffering of mental illness is the suffering of exclusion. Little attention is paid to the fear and pain caused by symptoms of mental illnesses themselves, and to providers desires to relieve that pain aside from any motives of social control. In addition, in Foucaults presentation Madness never has the possibility of self-agency; it is a passive victim of confinement, treatment, and repression. I would argue that the archeology of the history of the consumer rights movement and the establishment of legislation such as the Americans with Disabilities Act demonstrate the falsity of this view (Sayce, 2000). To both deny the possibility of alleviation of suffering through mental health treatment and to deny the power that consumers have exerted over the state is to limit the discourse of mental illness within a frame of victim/oppressor. Similarly, limiting a view of the EBP/SMI initiative to repression denies its potential for productive, positive effects. With implementation of EBPs the possibility of individual professionals capricious use of treatment is lessened. In addition, ensuring that consumer receive services that have been deemed best validates their legitimate claim for support; as one consumer noted it says, in effect We deserve the best. (Scheyett & Childers, submitted for publication). EBPs are provided in a community settingand although surveillance continues this setting at least provides the possibility for contact and beginning communication between consumers and individuals not labeled SMI. The language of the EBP/SMI acknowledges the possibility of recovery, and its mention of consumer involvement in program planning and service plan development contain hints of openness to dialogue. As I stated at the beginning of this article, though there are benefits to EBPs, as social workers we must look at the issues of silence, moral fault, power/knowledge, and ask At what cost? Foucaults view, though perhaps distorted, serves as a magnifying glass, highlighting the very real issues of repression and power that might otherwise be overlooked if we remain within a positivist paradigm. I would argue that in an eagerness to embrace EBPs, many social workers and mental health professionals have not carefully scrutinized its costs, which can be very high. EBPS, as they exist currently, may decrease symptoms and improve some outcomes, but do so in a way that can be oppressive, paternalistic, stifling, and that may ultimately lessen chances for recovery (rather than simple stabilization).

84

JOURNAL OF PROGRESSIVE HUMAN SERVICES

Recommendations Social work is an action-based and a value-based discipline (Mullaly, 2002). As such, we cannot simply point out the problems of silence, repression, and moral blame within the EBP/SMI, we cannot merely say The cost is too high! We must also act. Foucault has long been criticized for being anti-humanist and callous to the realities of suffering, and for feeling no need to engage in or provide recommendations for action (Erevelles, 2002; Gelb, 2000). However, he does offer one powerful idea useful as a tool for criticism and for action, that of subjugated knowledge. By this term Foucault refers to a whole set of knowledges that have been disqualified as inadequate . . . located low down on the hierarchy, beneath the required level of cognition of scientificity. (Foucault, 1980b, p. 82). By re-voicing subjugated knowledge and moving it forward in action we are able to criticize and change the dominant discourse. Foucaults strategy was to use subjugated knowledge to look back and explore the struggles in history, in a process he referred to as genealogy (Foucault, 1980b). I propose that social work strive to open a space for the subjugated, situated knowledge of consumers and use this to look forward and explore recovery in a process we can consider one of generativity. How are we to begin this process? Broadly speaking, I believe this will require three important shifts: (1) from silencing consumers to listening to consumer voice; (2) from viewing consumers as morally flawed to seeing consumers as full and equal partners; and (3) from linking power and disciplinary knowledge to linking power to the situated and subjugated knowledge of consumers. Social work itself must re-begin communication with consumers and reopen the dialogue between Madness and Reason that has been silenced for so long. This means that we must be willing to listen to consumer voices, to put aside the specialized language of our discipline and the privileged position of our knowledge. We must also give up the power stance of us and them and move beyond what one consumer described as the battle lines [that] were always drawnyou were sick, they were well (Cloutier, 1994, p. 31), towards true mutualism and connection. Dialogue cannot occur in the traditional social spaces we have created for consumers, spaces of coercion and control in treatment. We need new venues that are safe for dialogue, that are as equal as possible so that we may listen, partner, and act on the situated knowledge of consumers. Glimmers of this activity can be seen in dialogue projects that bring consumers together with others to engage and work towards greater mutual

Anna Scheyett

85

understanding, but these efforts are nascent (Bluebird, 1995; Scheyett & Kim, 2004). Another potential place for partnership is with the consumer/survivor movement. There is a rich history in this movement, and real power in current consumer groups (National Mental Health Consumers Self-Help Clearing House, n.d.) Social workers need to connect here and to encourage additional dialogue in a radical humanist process of subjective joining and understanding (Howe, 1987). Specifically, how can this occur? How can social workers listen to and partner with consumers in order to raise situated/subjugated knowledge and experience, and de-privilege the current structures of EBPs? To do this, I believe social work efforts must focus in two domains. First, social workers must engage in the long-term process of creating new research and practice structures grounded in and driven by the knowledge and lived experience of consumers. Second, social workers must engage with consumers in the here and now to recontextualize the mental health services they provide, connecting the personal, political, and clinical. Only through this two-pronged approach can social work attend to both current consumer needs and long-term system reform; a dual role conceptualized by Mullaly (2002) as both challenging oppression and tending to the wounded, those who are currently harmed by the oppressive system. Research The creation of new practice structures grounded in consumer knowledge requires consumer-driven research/knowledge generation. In an article titled From Lab Rat to Researcher, Campbell and colleagues (Campbell, Ralph, & Glover, 1993) describe a continuum of possible roles for consumers in research, from lab rat/object to respondent to consultant to partner to independent researcher to full stakeholder in the research and dissemination process. For social work to support empowered research roles (e.g., consultant, partner, independent researcher) for consumers, and to support the operationalization of consumer research findings in practice, it is useful for us to be guided by the concepts of consumer voice, partnership, and power in situated knowledge. In order to support consumer voice, social workers must be involved in supporting the development of a consumer-defined research agenda. Consumers have not had full opportunity to voice their own questions and define the outcomes that are important to them, to question the dominant discourse and articulate their views and needs. Only when

86

JOURNAL OF PROGRESSIVE HUMAN SERVICES

the research questions belong to consumers can the evidence the research produces be meaningful and the practices it engenders be non-oppressive. In addition, answers to consumer-defined research questions should be found through techniques that do not silence or denigrate consumer voice. This means that social workers and consumers will have to work together to de-privilege traditional positivist research strategies, advocate for the legitimacy of non-positivist approaches (e.g., narrative, constructivist, dialogic) (Guba & Lincoln, 2004; Rodwell, 1998; Rosenwald & Ochberg, 1994) and partner in the creation of new research approaches, all with the goal of elevating consumer voice and giving authority to the situated/subjugated knowledge of consumer experience. Beyond listening to consumer voice, social work research should engage consumers as full research partners, co-creating knowledge through approaches such as participatory action research (Fisher, 2002; Nelson, Ochocka, Griffin, & Lord, 1998; Ristock & Pennell, 1996) or the hermeneutic circle of constructivist research (Rodwell, 1998). In addition to this partnership, however, is another important role for social work, that of facilitating and supporting independent consumer research, creating a power/knowledge nexus in the situated knowledge of consumers lived experience (Griffiths, Jorm, & Christensen, 2004). By sharing the knowledge and research skills of social work, we can facilitate consumers empowerment to own the research process and generate relevant practice knowledge to meet their goals and needs. Finally, if the knowledge generated in these research processes is to be emancipatory, it cannot be hoarded by a privileged few. New knowledge creates new power, and thus should be widely disseminated. New practices, interventions, strategies to promote recovery identified by research should be shared not merely with providers, but with consumers and their families as well, discussed in a language accessible to all (rather than the specialized voice of science) and diffused throughout the community. Practice Through the generation of new practice knowledge in the research process discussed above, new emancipatory actions that social workers can engage in may be identified. However, todays social workers are left with the question of what to do in the here and now, when the expectation is that they will practice from an EBP framework. I would suggest that by broadening and contextualizing the dialogue with consumers,

Anna Scheyett

87

again using the concepts of voice, partnership, and power in situated knowledge, social workers can use what may be helpful about EBPs while avoiding (at least some) of its oppressive effects. To illustrate, let us take the EBP of illness management. The goal of the illness management EBP is to help people reduce their symptoms of mental illness and cope more effectively with their symptoms (Mueser et al., 2002); the assumption is that by doing this consumers will progress in their recovery. In a traditional illness management intervention, the professional would assess the consumers deficits, and then provide skills that have been shown by science to work to address the deficits. This would include teaching the consumer cognitive-behavioral strategies for coping with symptoms, helping him/her develop strategies to remember to take medication and come to appointments, and teaching him/her about mental illness, signs of relapse, and how to get help. The approach is hierarchical, assumes that SMI is something to simply be managed, and that the reason symptoms are problematic are because the consumer is deficient in the skills needed to manage them. Consumers, on the other hand, may have very different views and needs. Being truly heard and understood is important to the recovery process; one consumer expressed this by saying There again it comes down to does this counselor really, really understand? (Scheyett, submitted for publication). Consumers may also experience the illness management teaching and behavioral tailoring of the provider expert as paternalistic and controlling. A consumer expressed his/her frustration with this paternalism by saying Im tired of people telling me how to run my life . . . [I] want some control and some respect . . . They treat you like a child; Im 24 years old. (Scheyett, submitted for publication). A more anti-oppressive intervention would take a very different, collaborative social work approach (see, for example, Poulin et al., 2000). A social worker would begin by establishing a relationship and context of meaning for the work with the consumer (Brun & Rapp, 2001). This would involve listening intently to the consumers voice and story, engaging in dialogue with the consumer around what s/he wants from the relationship, what resources and strengths the s/he brings to the work, what recovery means and would look like to him/ her, and what s/he sees as short and longer-term goals (DeJong & Miller, 1995). One consumer who reported that s/he had experienced such a relationship with a mental health provider described it by saying that what was the most important was the mutualityI never felt talked down to. (Scheyett, submitted for publication).

88

JOURNAL OF PROGRESSIVE HUMAN SERVICES

During this initial process a consumer could, for example, identify a goal of having more meaningful relationships, and see the distraction of hearing voices and feeling like people think Im odd as barriers to this goal. This would be followed by partnering with the consumer to identify a range of resources, strengths, and situated knowledge that can be used to help the consumer reach his/her goal (Rapp, 1998). These could include the consumers prior experiences and learning (e.g., Could we think about good relationships youve had in the pasthow did those happen?), conversations with other consumers who have had similar experiences (e.g., going to a peer support group and raising this issue in the discussion), and practices identified in the research as helpful in reaching the consumers goal (e.g., medication adherence strategies to help reduce the voices). Here, rather than an expert telling the consumer what works, the consumer and social worker partner to co-generate a range of options, and can then discuss the pros and cons of each grounded in the consumers knowledge of self and experience. As a consumer stated If you want to know what worksask me (Scheyett, submitted for publication). The advantages and limitations of an EBP such as the medication compliance strategies of illness management can be discussed, just as the advantages and limitations of advice from a family member or another consumer can be discussed. After full exploration of all options, with an EBP being only one option, the consumer can make an informed choice, and give truly informed consent to an intervention strategy. The process outlined above is essential, but it must be emphasized that it is by itself insufficient for practice. It is important that the dialogue between social worker and consumer include discussion of the external barriers the consumer faces in reaching his/her goals. These barriers include stigma and discrimination against people with mental illnesses (Dickerson, Sommerville, Origoni, Ringel, & Parente, 2002; Wahl, 1999), disability structures that ensure people will remain in poverty (Dobelstein, 1992), and the wide-spread de-privileging of consumer voice discussed throughout this paper. Without this conversation, the unspoken message that the causes of the consumers problems are due to internal flaws remains. If these structural barriers are acknowledged and discussed, and if the consumer is encouraged to connect with peers and dialogue in this consciousness-raising process, then the self-eroding effects of societal blame the victim can be reduced and the chances for recovery maximized. Social work is a profession that focuses on empowerment and opposes oppression. However, in our work with consumers, in our

Anna Scheyett

89

eagerness to be anti-oppressive, I fear that social work may rush into consumer-driven research and practice initiatives without having first done the hard work of divesting itself of privilege and establishing true dialogue and shared language with consumers. This process takes time, takes work, and must be revisited continually. Perhaps ultimately what social work needs is to shift from establishing best practices to creating best processes(Anthony, 2003), to shift from searching for what to do to fix things to learning how to be to work together, to ground our work in the voices of consumers and their situated knowledge, to partner with consumers in both research and practice. Only after we have learned this, after the discourse of science and the heretofore silenced discourse of consumer experience are metamorphosed into a discourse of valued voice, can we begin to work together towards ways of consumer recovery. NOTES
1. Throughout the paper I use the term consumer to refer to individuals with SMI. This term is preferred by some individuals, while other terms with varied connotations, such as survivor, ex-patient or ex-inmate are preferred by others. I choose to use consumer because it is used in the EBP/SMI literature, but intend no disrespect to the meanings inherent in the other terms. 2. Throughout this article I use the term madness when referring to Foucaults oeuvre, rather than the more contemporary SMI or mental illness in order to more accurately reflect his text.

REFERENCES
Abrams, K., DonAroma, P., & Karan, O. (1997). Consumer choice as a predictor of job satisfaction and supervisor ratings for people with disabilities. Journal of Vocational Rehabilitation, 9, 205-215. Anthony, W. (2003). Studying evidence-based processes, not practices. Psychiatric Services, 54(1), 7. Bluebird, G. (1995). Participatory dialogues. Washington, D.C.: U.S. Department of Health and Human Services. Bond, G., Becker, D., Drake, R., Rapp, C. A., Meisler, N., Lehman, A., et al. (2001). Implementing supported employment as an evidence-based practice. Psychiatric Services, 52(3), 313-322. Bond, G., McGrew, J., & Fekete, D. (1995). Assertive outreach for frequent users of psychiatric hospitals: A meta-analysis. The Journal of Mental Health Administration, 22(1), 4-28.

90

JOURNAL OF PROGRESSIVE HUMAN SERVICES

Calhoun, M. (2002, April 2003). Grant results report: Evidence-based care for persons with serious mental illness. Retrieved June 24, 2003, from http://www.rwjf.org/ reports/grr/036805.htm Campbell, J., & Leaver, J. (2003). Emerging new practices in organized peer support: Report from NTACs National Experts Meeting on emerging new practices in organized peer support. Alexandria, VA: National Technical Assistance Center for State Mental Health Planning. Campbell, J., Ralph, R., & Glover, R. (1993, October 2-5). From lab rat to researcher: The history, models, and policy implications of consumer/survivor involvement in research. Paper presented at the Fourth Annual National Conference of State Mental Health Agency Service Research and Program Evaluation, Annapolis, MD. Cloutier, G. (1994). Overcoming the black garden. In L. Spaniol & M. Koehler (Eds.), The experience of recovery (pp. 29-34). Boston, MA: Center for Psychiatric Rehabilitation. Deegan, P. (1997). Recovery and empowerment for people with psychiatric disorders. Social Work in Health Care, 25(3), 11-24. Dickerson, F. B., Sommerville, J., Origoni, A. E., Ringel, N. B., & Parente, F. (2002). Experiences of stigma among outpatients with schizophrenia. Schizophrenia Bulletin, 28(1), 143-155. Dominelli, L. (1988). Anti-racist social work. London: MacMillan. Drake, R., Goldman, H., Leff, S., Lehman, A., Dixon, L., Mueser, K., et al. (2001). Implementing evidence-based practices in routine mental health service settings. Psychiatric Services, 52(1), 179-182. Erevelles, N. (2002). Voices of silence: Foucault, disability, and the question of self-determination. Studies in Philosophy and Education, 21, 17-35. Fisher, M. (2002). The role of service users in problem formulation and technical aspects of social research. Social Work Education, 21(3), 305-312. Foucault, M. (1965). Madness and civilization: A history of insanity in the age of reason. New York: Vintage Books. Foucault, M. (1976). Mental illness and psychology (A. Sheridan, Trans.). New York: Harper Colophon Books. Foucault, M. (1980a). Prison talk. In C. Gordon (Ed.), Power/Knowledge: Selected interviews and other writings, 1972-1977 Michel Foucault (pp. 37-54). New York: Pantheon. Foucault, M. (1980b). Two lectures. In C. Gordon (Ed.), Power/Knowledge: Selected interviews and other writings, 1972-1977 Michel Foucault (pp. 78-108). New York: Pantheon. Gambrill, E. (1999). Evidence-based practice: An alternative to authority-based practice. Families in Society: The Journal of Contemporary Human Services, 80(4), 341-350. Ganju, V. (2001). Bridging the gap between research and service with evidence-based practices. Washington, D.C.: National Technical Assistance Center for State Mental Health Planning. Gelb, S. (2000). Be cruel! Dare we take Foucault seriously? Mental Retardation, 38(4), 369-372.

Anna Scheyett

91

Gordon, C. (1992). Histoire de la folie: An unknown book by Michel Foucault. In A. Still & I. Velody (Eds.), Rewriting the history of madness: Studies on Foucaults Histoire de la folie. London: Routledge. Griffiths, K., Jorm, A., & Christensen, H. (2004). Academic consumer researchers: A bridge between consumers and researchers. Australian and New Zealand Journal of Psychiatry, 38, 191-196. Guba, E., & Lincoln, Y. (2004). Competing paradigms in qualitative research. In S. Hesse-Biber & P. Leavy (Eds.), Approaches to qualitative research: A reader on theory and practice (pp. 17-38). New York: Oxford University Press. Gupta, M. (2003). A critical appraisal of evidence-based medicine: Some ethical considerations. Journal of Evaluation in Clinical Practice, 9(2), 111-121. Howe, D. (1987). Making sense of practice. Aldershot, England: Wildwood House. Ife, J. (1997). Rethinking social work: Towards critical practice. South Melbourne: Longman. Link, B. G., Cullen, F., Mirotznik, J., & Struening, E. L. (1992). The consequences of stigma for persons with mental illness: Evidence from the social sciences. In P. J. Fink & A. Tasman (Eds.), Stigma and mental illness (pp. 87-96). Washington, D.C.: American Psychiatric Press. Mellman, T., Miller, A., Weissman, E., Crismon, E. L., Essock, S., & Marder, S. (2001). Evidence-based pharmogologic treatment for people with severe mental illness: A focus on guidelines and algorithms. Psychiatric Services, 52(5), 619-625. Merquoir, J. G. (1986). Foucault. London: Fontana/Collins. Miettinen, O. (2003). Commentary on A critical appraisal of evidence-based medicine: Some ethical considerations. Journal of Evaluation in Clinical Practice, 9(2), 123-127. Miles, A., Grey, J., Polychronis, A., Price, N., & Melchiorri, C. (2003). Current thinking in evidence-based health care debate. Journal of Evaluation in Clinical Practice, 9(2), 95-109. Morell, C. (1996). Radicalizing recovery: Addiction, spirituality, and politics. Social Work, 41(3), 306-312. Mueser, K., Corrigan, P. W., Hilton, D., Tanzman, B., Schaub, A., Gingerich, S., et al. (2002). Illness management and recovery: A review of the research. Psychiatric Services, 53(10), 1272-1284. Mullaly, B. (2002). Challenging oppression: A critical social work approach. Ontario, CA: Oxford University Press. Mullen, E. J. (2002). Evidence-based social work-theory and practice: Historical and reflective perspective. Retrieved April 1, 2003, from http://www.uta.fi/laitokset/ sospol/eval2002/CampbellContext.PDF National Mental Health Consumers Self-Help Clearing House. (n.d.). History of the mental health self-help and advocacy movement. Retrieved February 2, 2000, from http://www.mhselfhelp.org/history.html Nelson, G., Ochocka, J., Griffin, K., & Lord, J. (1998). Nothing about me without me: Participatory action research with self-help/mutual aid organizations for psychiatric consumer/survivors. American Journal of Community Psychology, 26(6), 881-912. Ristock, J., & Pennell, J. (1996). Community research as empowerment: Feminist links, postmodern interruptions. Toronto: Oxford University Press.

92

JOURNAL OF PROGRESSIVE HUMAN SERVICES

Rodwell, M. (1998). Social work constructivist research. New York: Garland Publishing. Rose, N. (1992). Of madness itself: Histoire de la folie and the object of psychiatric history. In A. Still & I. Velody (Eds.), Rewriting the history of madness: Studies in Foucaults Histoire de la folie. London: Routledge. Rosenwald, G., & Ochberg, R. (1994). Introduction: Life stories, cultural politics and self understanding. In G. Rosenwald & R. Ochberg (Eds.), Storied lives: The cultural politics of self-understanding (pp. 1-18). New Haven, CT: Yale University Press. Sackett, D., Rosenberg, W., & Muir-Gray, J. A. (1996). Evidence-based medicine: What it is and what it isnt. British Medical Journal, 312, 71-72. Sayce, L. (2000). From psychiatric patient to citizen: Overcoming discrimination and social exclusion. New York: St. Martins Press, Inc. Scheyett, A. (submitted for publication). The what and ways of service provision: Do needs voiced by women with serious mental illnesses differ from those of men? Scheyett, A. (2000). My new colleagues: Consumer/providers and peer support. National Association of Case Management Reports, 2(7), 7-10. Scheyett, A., & Childers, P. (submitted for publication). Consumer views of evidencebased practices in adult mental health services: A group discussion. Scheyett, A., & Kim, M. (2004). Can we talk?: Using facilitated dialogue to positively change student attitudes towards persons with mental illness. Journal of Teaching in Social Work, 24(1/2), 39-54. Scheyett, A., & McCarthy, E. (2004). Needs assessment for the North Carolina Bridging Science and Service Initiative, Part 1: Consumer and family focus groups. Chapel Hill, NC: University of North Carolina at Chapel Hill. Still, A., & Velody, I. (1992). Introduction. In A. Still & I. Velody (Eds.), Rewriting the history of madness: Studies in Foucaults Histoire de la folie (pp. 1-16). London: Routledge. Swartz, M. (Writer), & B. Gallagher (Director) (1995). Hospital Without Walls [videotape]. In SAMHSA (Producer). Durham, NC: Duke University. Tanenbaum, S. (2003). Evidence-based practice in mental health: Practical weaknesses meet political strengths. Journal of Evaluation in Clinical Practice, 9(2), 287-301. Wahl, O. F. (1999). Mental health consumers experience of stigma. Schizophrenia Bulletin, 25(3), 467-478. Watts, J., & Priebe, S. (2002). A phenomenological account of users experiences of assertive community treatment. Bioethics, 16(2), 439-454.