Living Outside Mental Illness
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Living Outside Mental Illness

Qualitative Studies of Recovery in Schizophrenia

Larry Davidson

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Living Outside Mental Illness

Qualitative Studies of Recovery in Schizophrenia

Larry Davidson

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About This Book

Schizophrenia is widely considered the most severe and disabling of the mental illnesses. Yet recent research has demonstrated that many people afflicted with the disorder are able to recover to a significant degree.

Living Outside Mental Illness demonstrates the importance of listening to what people diagnosed with schizophrenia themselves have to say about their struggle, and shows the dramatic effect this approach can have on clinical practice and social policy. It presents an in-depth investigation, based on a phenomenological perspective, of experiences of illness and recovery as illuminated by compelling first-person descriptions.

This volume forcefully makes the case for the utility of qualitative methods in improving our understanding of the reasons for the success or failure of mental health services. The research has important clinical and policy implications, and will be of key interest to those in psychology and the helping professions as well as to people in recovery and their families.

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Publisher
NYU Press
Year
2003
ISBN
9780814720905
1
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Is There an Outside to Mental Illness?

(With Maria O’Connell, David Sells, and Martha Staeheli)
What is needed is not the insistence that one see with his [sic] own eyes; rather it is that he [sic] not explain away under the pressure of prejudice what has been seen.
—Edmund Husserl, Philosophy as Rigorous Science
HOW, THEN, TO BEGIN? By articulating what it is that we are interested in learning more about through our investigation. We may have framed our primary research question already, albeit implicitly, but it will be useful in guiding our efforts to make this question both focused and explicit. It is:
How does the person who has schizophrenia affect the course and outcome of the illness?
With our focus being on processes of improvement, in particular, we may frame this question more specifically as:
How do the person’s experiences and activities affect processes of recovery in schizophrenia?
Once these questions are made explicit, it is customary in the conduct of research to review the relevant scholarly literature in order first to discover what answers have been proposed to these questions in the past, based on what evidence. The review of the literature also is intended to identify gaps in what is currently known about the topic, and what next few steps could be taken to advance current knowledge. Despite being a well-established, almost rudimentary, step in conducting research, this fairly straightforward step has been the matter of some dispute within the qualitative research community. We will begin our discussion of methodology here, by exploring this dispute.
Presuppositions, Preconceived Notions, and Other Forms of Unintended Prejudice, and What We Can Do about Them
Why would qualitative researchers question the appropriateness of reviewing the existing literature on their topic of interest prior to initiating a new investigation? The issue at stake here has to do with the status of all the preconceived notions and presuppositions about the nature of the phenomena in question that investigators inevitably bring to their research, and the question of what to do about them. Are we able to investigate experience “completely without prejudice,” as phenomenology encourages us to do? If so, then how are we to accomplish this? If not, then what must we do instead?
Husserl was himself a keen idealist in pursuit of an approach to research that was without presuppositions. It was his belief for most of his career that all such prejudices could be bracketed in the phenomenological reduction, enabling the phenomenologist simply to describe experience as it appears. In other words, each of us already sees reality in and through originary experience; the challenge, as captured in the quote above, is not to “explain away” what we see based on our theories about what is.
Following Husserl’s lead, a school of qualitative research has emerged that suggests that investigators approach their subject matter with as pure and untarnished a lens as possible. As a first step in clearing the path to a description of originary experience, these investigators attempt to purge themselves of all prejudices and preconceptions about the nature of the phenomena they are to examine. Within this school of thought, it therefore makes no sense to review the existing literature on one’s topic prior to undertaking phenomenological inquiry. Such a review would only add to the assumptions and prejudices of which one is trying to rid oneself. Reviewing what we think is known is actually moving in the wrong direction, so this line of thought contends, as we then have to place such knowledge in brackets in order to describe our experiences precisely as they are experienced (rather than as they are thought to unfold).
According to this perspective, the less one knows about a topic prior to investigation, the better able one will be to arrive at a pure description of how it is experienced. Being familiar with this perspective, we were not too surprised, for example, when we discovered that some of our best qualitative interviews were conducted by a second-year medical student who knew very little about schizophrenia. Having no prior experience working with people with psychosis, there was not much that this young man needed to put in brackets in order to approach his subjects with a fresh and unbiased eye (Davidson, Haglund, et al., 2001).
Despite our delight in discovering in this medical student a natural phenomenologist, we have yet to achieve or to witness the achievement of such a state of pure presuppositionless. In this we certainly are not alone, as most experienced qualitative investigators likewise have reached the conclusion that it is not possible to purge oneself entirely of all preconceptions (e.g., Merleau-Ponty, 1962). Late in his career, Husserl too finally gave up striving for pure presuppositionless, focusing instead on the fact that all experience necessarily unfolds over time. If experience is temporal in nature, then what sense does it make to strive for a static state of presuppositionless? We should instead view ourselves as immersed in a historical process. We are products of our individual and collective history, building on what has come before us and creating the building blocks for what is yet to come. We cannot escape the social, cultural, and historical evolution of which we are ourselves a part in order to stand, as it were, outside of it or to reflect on it from a distance. As a result, purification is no longer the best metaphor for how qualitative researchers prepare themselves for their work.
What else, then, can we do about our nagging and inevitable prejudices? And what implications will this have for our review of the literature as an initial step in our investigation? Following the later Husserl (e.g., 1970a), we opt for the less ambitious aim of bringing these nagging preconceptions to explicit awareness. In this view, assumptions are detrimental to the research enterprise only to the degree that they operate implicitly and out of our thematic awareness; to the degree, that is, that we do not know that they are influencing us. To the extent that we can bring these ideas to awareness, we can then examine them and play with them in our imagination in order to see how they might be influencing, and limiting, our perceptions and understanding.
We describe the phenomenological technique of “imaginary variation” in the next chapter when we set about the empirical enterprise of doing research. For now, we will simply conclude that reviewing the existing literature on our topic is not only a useful, but also a crucial, step in preparing ourselves for our phenomenological journey. It is through this review that we will be able to make explicit the most salient assumptions governing our current understanding of schizophrenia and influencing us in our approach to this topic. This review helps us to identify the predominant notions that both delimit (i.e., constitute) and limit our understanding of psychosis, giving us a springboard from which to leap into the experiential waters described by participants in our studies. In this task we aspire not so much for the naiveté of our medical student immersing himself in the immediacy of these experiences but to achieve the disciplined naiveté of an “immediacy beyond reflection” (Kierkegaard, 1983). Let us turn, then, to reviewing the existing literature on recovery in schizophrenia.
Kraepelin’s Legacy
Given the focus of this volume, we will not attempt to review the thousands of pages of books, monographs, journal articles, and other publications that have been devoted to research on, and theories of, the cause, course, treatment, and outcomes of schizophrenia. As a context for understanding the last 40 or so years of work on recovery in schizophrenia, however, some historical background is useful. In order to keep our review of this background brief, we necessarily will have to truncate our treatment of over one hundred years of psychiatric research and practice, relying on simplistic distinctions between complicated theories in order to summarize this history in a few paragraphs. Readers who are unfamiliar with this history, and who are interested in a more detailed review, are referred to Strauss and Carpenter’s seminal 1981 book Schizophrenia and to Carpenter’s more recent review (Carpenter and Buchanan, 1994).
The illness, or family of illnesses, we currently consider to be schizophrenia was first identified by Emile Kraepelin just prior to the end of the nineteenth century. As we noted in our Introduction, Kraepelin (1904) originally labeled this condition “dementia praecox,” or premature dementia, in order to capture the inevitable downward and deteriorating course he considered to be the hallmark of this illness. According to his clinical observations—which, again, occurred within the context of long-term hospitalization—schizophrenia was characterized by an unremitting course leading to progressive deterioration and early death. It was assumed to be an organic disorder that attacked the person’s brain, leaving those afflicted with little hope for a life beyond neurological degeneration and irreversible dementia (Kraepelin, [1904] 1987).
This understanding of schizophrenia as a neurobiological disorder has formed the basis for a number of approaches to the illness over the last century, ranging from involuntary frontal lobotomies and insulin shock treatments earlier in the twentieth century to the new generation of more effective medications developed within the last decade. Proponents of this model do not necessarily believe that schizophrenia is caused solely by genetic or biological factors. The stress-vulnerability version of the model views schizophrenia as caused by a complex interaction of genetic predisposition, subtle neurological impairments, stressful life events, and inadequate resources for coping with these events. Although this model acknowledges the role that social environment and coping play in schizophrenia, it typically has failed to address the question of how people come to be more or less successful in managing the illness. In addition, and more important, these models do not allow for the possibility that people can ever recover fully, or even partially, from the disorder. The most one can hope for is containment of the damage caused by the illness and a degree of mastery over one’s continuing symptoms. The illness and its underlying vulnerability will persist for the remainder of the person’s life, it is believed, requiring active treatment and rehabilitation for the person to preserve any remaining areas of independent functioning (Davidson and Strauss, 1995).
This Kraepelinian model has not only formed the foundation for various treatments of schizophrenia over the last century but also has informed social policy and community attitudes toward people with mental illness. Although not responsible for the two hundred years of segregation that preceded it, it has perpetuated the stigma of mental illness and justified the continued exclusion of “the mentally ill” from social debates about their fate (Davidson, 1997). The legislation, policies, and programming that dictate the locus of care and the practices of mental health professionals have been decided with little to no input from the people most directly affected by these decisions: the patients themselves. Based on the perception that the person is lost to the illness, others have stepped in to make decisions and speak for the person.
Such an exclusion of the person would be less surprising were we concerned with the technical evolution of surgical procedures that typically have developed independent of the wishes or preferences of prospective patients (e.g., earlier use of mastectomy). Psychiatry has differed from most other parts of medicine, however, in extending its authority to include most aspects of patients’ lives, including where they live, with whom they associate, what they eat, when they bathe, and what they do with their time. While this psychiatric hegemony was more obvious in the context of the large state mental hospitals in which hundreds of thousands of people lived the majority of their adult lives, these same institutional structures and attitudes can been found operating at a more implicit, but yet powerful, level in the impoverished lives of the hundreds of thousands of individuals now living in the community (Davidson, Hoge, et al., 1995; Estroff, 1995).
The degree of social control exerted by psychiatry over the lives of people with psychiatric disabilities usually is found only with conditions that render the person entirely incapable of taking care of him- or herself, such as severe developmental disabilities and autism, or with communicable diseases that threaten the lives of the broader public, such as tuberculosis. It was for this reason that Foucault (1965) did not consider it to be simply a coincidence that the first insane asylums were instituted in depopulated and refurbished leper colonies. The majority of people with severe psychiatric disabilities do not pose any particular public health or societal risk that would justify this degree of segregation and control by others, however (Monahan, 1992; Monahan and Arnold, 1996; Mulvey, 1994). In addition, and as we will see below, most people with severe psychiatric disabilities do not require the long-term custodial care or supervision that may be required by some individuals with irremediably devastating conditions (e.g., Harding, Zubin, and Strauss, 1987). The fact that such was the fate of hundreds of thousands of people over at least one hundred years of our history, and that a less overt but still intrusive degree of supervision continues to be provided in some community settings into the present day, reflects the pessimism and hopelessness of the Kraepelinian model.
This despairing picture remained relatively unchallenged for the first half of the twentieth century until two related developments began to converge on an alternative view of serious mental illness. These two developments were the emergence of the contemporary Mental Health Consumer/Survivor Movement and a body of rigorous outcome research conducted by clinical investigators skeptical of Kraepelin’s certainty about the inevitability of a chronic course and poor outcome for schizophrenia.
“Nothing about Us without Us!”
Not everyone with a severe psychiatric disorder becomes the passive victim of an intrusive and controlling mental health system. Many people, as we noted in our Introduction, do not come into contact with the mental health system at all and therefore never receive any treatment for their condition. In other cases, people have rejected the services offered them, either picking and choosing what they find helpful and can tolerate or attempting to go it alone. In still other cases, people who have been recipients, or objects, of psychiatric treatment have spoken out about what they consider to be its less-helpful aspects and its abuses and have worked to change the conditions that allow for this kind of treatment to continue. These individuals have come to call themselves self-advocates or members of the Mental Health Consumer/Survivor Movement; survivor referring to the fact that they “survived” psychiatric treatment (most often involuntary hospitalization) and are now trying to change the psychiatric system so that future generations will not have to face what they endured.
There have, of course, been isolated individuals who have been discharged from psychiatric hospitals and who have spoken out about their mistreatment for as long as there have been such institutions. What distinguishes the contemporary Consumer/Survivor Movement from its predecessors is that it has become a collective political force that has effectively joined societal debates about the future of mental health services for people with psychiatric disabilities. Their motto in doing so, adopted from the broader Disability Rights Movement, is the phrase: “Nothing about us without us” (Charlton, 1998).
This motto is meant to express the sentiment among people with psychiatric disabilities that they fully intend to remain in control of their own lives. Whether this requires wresting control back from the mental health system or not ceding control to the system in the first place, the Consumer/Survivor Movement is based on the shared conviction of people with psychiatric disorders that they do not need other people to make decisions or to speak on their behalf; that, despite their disabilities, they are capable of doing so for themselves. In arguing for self-determination, consumer/survivors have taken issue with the Kraepelinian model and the intrusive social policies associated with it. In a representative statement, this approach has been described as “highly paternalistic … emphasizing illness over health, weaknesses rather than strengths, limitations rather than potential for growth.” As a result, advocates have come to view the Kraepelinian model “as stamping out hope by implying that biology is destiny and emphasizing an external locus of control” (Munetz, Geller, and Frese, 2001, p. 36).
As an alternative, the Consumer/Survivor Movement has, over the last 25 years, endorsed a more optimistic and personally (and politically) “empowering” model under the rubric of what they have termed “recovery.” We place recovery in quotes because recovery from psychiatric disorder may look quite different, and take on different meanings, from the typical use of the term in relation to physical conditions. At its most basic level, the recovery model argues that psychiatric disability is only one aspect of the whole person (Corrigan and Penn, 1998) and that recovery from psychiatric disorder does not require remission of symptoms or other deficits. In other words, and unlike in most physical illnesses, people may consider themselves to be “in recovery” from a psychiatric disorder while continuing to have, and be affected by, the disorder. What recovery seems to entail is that people overcome the effects of being a mental patient—including rejection from society, poverty, substandard housing, social isolation, unemployment, loss of valued social roles and identity, and loss of sense of self and purpose in life—in order to retain, or resume, some degree of control over their own lives (Anthony, 1993; Deegan, 1996a, 1996b).
Is Recovery Possible?
But are these psychiatric consumers/survivors credible? Is there any validity to the model that they are proposing as an alternative to the Kraepelinian view? Should people who have psychotic disorders be allowed to retain, or to take back, control of their own lives? Just because they demand to be included in policy debates does not necessarily mean that they are right or that they have the right to self-determination if their impaired judgment puts the larger society at risk. If their own definitions of recovery include continued disorder and disability, why should we listen to people who appear to admit that they are at least, in part, “insane”?
Critics of the Consumer/Survivor Movement argue that the leaders of this movement do not represent the majority of people with serious mental illnesses. These effective and eloquent advocates appear to be less disabled by their conditions than most of their peers. They either have milder conditions (e.g., dysphoria as opposed to major depression) or, these critics argue, they were misdiagnosed and do not suffer from a psychiatric disorder at all. Kraepelin’s legacy has been so deeply entrenched in psychiatry that some experts have claimed that anyone who does, in fact, recover must have been misdiagnosed because what they had could not have been schizophrenia in the first place. In elegant but circular reasoning, this position is based on the tautology that people who have schizophrenia cannot recover, therefore, if people do recover they could not have had schizophrenia. They must have had something else.
The counterevidence to these criticisms is provided by a growing body of research involving longitudinal outcome studies of people diagnosed with schizophrenia according to established criteria. As we noted in our Introduction, since the late 1960s a highly consistent picture has emerged around the world, across countries and individuals, and over time consisting of a broad heterogeneity in outcome for individuals with schizophrenia regardless of setting. Each study conducted documented a full range in outcome, from severe and continuous incapacity to full recovery, with a significant portion of each sample falling into each category along this spectrum. Most differences across these studies were attributed to methodological artifacts such as differing sample characteristics, with one noteworthy exception. Participants were more likely to have a favorable outcome if they lived in the developing, as opposed to developed, world (Ciompi, 1980; Davidson and McGlashan, 1997; Lin and Kleinman, 1988; McGlashan, 1988; McGlashan, Carpenter, and Bartko, 1988).
Since 1988, when a special issue of Schizophrenia Bulletin was devoted to this topic, there have been at least another 10 studies on long-term outcome appearing in the literature along with several studies exploring in more detail differences across domains of functioning within people and over time as well as across individuals. In o...

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