Talking Back to Psychiatry

The Psychiatric Consumer/Survivor/Ex-Patient Movement

Linda J. Morrison

• Publisher: Routledge
• Year: 2013
• eBook ISBN: 9781135476755
• Edition: 1
• Topic: Medicine
• Subtopic: Sociology

Linda Morrison brings the voices and issues of a little-known, complex social movement to the attention of sociologists, mental health professionals, and the general public. The members of this social movement work to gain voice for their own experience, to raise consciousness of injustice and inequality, to expose the darker side of psychiatry, and to promote alternatives for people in emotional distress. Talking Back to Psychiatry explores the movement's history, its complex membership, its strategies and goals, and the varied response it has received from psychiatry, policy makers, and the public at large.

Chapter One

From Sick Role to Social Movement: Theoretical Explorations

THE SICK ROLE

Becoming “mentally ill” in a sociological sense involves the assignment of a particular social role, the “sick role” or patient role (Parsons 1951; Gerhardt 1989). As with any illness, physical or mental, the sick role includes rights and responsibilities for the person so placed: the right to be excused from normal role obligations, the right to be excused from blame for the incapacitation or illness, the obligation to seek appropriate expert assistance for the problem, and the obligation to follow through with that expert's advice. The assumption in Parsons’ original explication of the sick role as elaborated by Uta Gerhardt (1989) was that proper assumption and execution of these role responsibilities would result in a return to appropriate role functioning, thus restoring social order, sparing the social system of a dysfunctional member and a threat to its stability and equilibrium. “What matters is the social order. Illness becomes a disturbing factor dysfunctional for the upkeep of order in society … the social order works on the basis of powerful homeostatic mechanisms, and medical practice is meant to constitute one, if not ‘the’ most important one” (1989:64).

In return, the expert caretaker has a set of reciprocal rights and responsibilities regarding the person who comes for help in the sick role process. The “doctor role” includes the right to intrude on the individual's bodily space, and the right to expect exclusive cooperation or compliance/adherence with the expert and the treatment plan. The doctor's responsibilities require putting the sick person's interests in the forefront of consideration, and using professional expertise to the greatest extent possible in the effort to cure the sick person.

The doctor is thus a “producer of care,” in response to the patient's “willingness to be treated” (Gerhardt 1989:31). There is an essential inequality, an asymmetry, in the treatment situation due to the doctor's expertise and the patient's lack of it. Yet as Gerhardt points out (1989:32), it is the seeking of help by the consumer that makes the transaction possible. Thus the views of reciprocity shift according to the perceived imbalance of expertise, the desire for treatment, and the perception of treatment as social control.

The state of illness, whether physical or mental, can be seen as a form of deviance: a failure to meet normative role expectations. The moral underpinnings of this assumption are implied by Parsons’ second “right” of the sick role, which is the important right not to be blamed for the illness state. This involves a moral claim that one has not brought the condition on oneself, whether by engaging in irresponsible or self-destructive behaviors such as substance abuse, reclusive self-absorption, or laziness; or, alternatively, by an overly-zealous application of socially appropriate behaviors such as overwork, over-dedication to caring for family members, or excessive spirituality. Attributions of deviance can result from an excess of positive as well as negative behaviors, either of which may be viewed as non-normative by the mainstream members of the reference group (Erikson 1966; Ben-Yehuda 1985).

For Parsons, removal of sick persons from the everyday social world is considered advantageous in a number of ways. First, it emphasizes and embodies reduced social expectations by moving the person out of the “normal” environment with its reminders of duties undone. Second, it allows for an environment of focused activities for improvement and cure. Third, removal of sick persons in their deviant state serves to prevent other members of society from observing the seductive “secondary gain” of reduced responsibilities and supportive care that are enjoyed by the persons entering the sick role. If this removal were not accomplished, the attractions of the sick role might be too hard for others to resist, causing social functioning to be further eroded. Instead, sick people are welcomed back on re-entry into everyday life when they have been cured, receiving congratulations for a successful return from a deviant state to a normal one.

In role theory, then, the temporary release from social obligations due to illness is contingent on two factors: the incapacity is involuntary, and resolution will be sought by seeking and complying with appropriate medical advice. The deviance of illness is considered undesirable and temporary, a responsible sick person is rewarded with a successful treatment, and a return to normal functioning for the individual and society is the goal.

SICK ROLE: THE CHRONIC VARIANT

The “sick role” concept is vulnerable to critique because it does not include the realities of chronic illness. Parsons’ original explication was based on a state of “acute” illness, in which a person's desire and efforts to return to health and normal social functioning would likely be successful. It failed to account for the deviance and dependency experienced by patients whose illness states were “chronic.” For a person with a chronic illness, whose best help-seeking and compliant behaviors may fail to result in a return to health and normal functioning, the temporary deviant status is not resolved. Lack of resolution of the illness state necessitates a different sort of response from social actors and institutions.

In addition, chronic illnesses like diabetes, heart disease, cancer, and HIV/AIDS often lead to longer-term role changes. New social identities beyond the sick role may be required for a person who is not getting well in spite of efforts to meet the role obligations of a “good patient.” These social identity negotiations include finding ways for people to remain members of society without being “put away” during an illness or disability that often will be life-long, with patterns of remission and recurrence. Kathy Charmaz (1991) has described the evolving identity issues encountered by those who do not get well, including questions of guilt, ongoing deviance, incorporating the fluctuating loss of functioning, and inability to maintain relationships.

Physicians also become frustrated and may withdraw support when their efforts at intervention fail to resolve the problem. Charles Lidz, Alan Meisel and Mark Munetz (1985) have explored ways in which new, more collaborative relationships may emerge between medical staff and patients with chronic illness. As the illness continues over time, patients develop increasing knowledge and awareness of both the illness itself and its management in their particular case. Meanwhile, as physician involvement decreases over time, opportunities for patient autonomy and self-direction of care increase. Mutual respect for differential expertise may change the balance of power, knowledge and practice in the relationship: the physician's role changes from director of care to supportive assistant, providing the technical resources needed for treating the patient's condition. Meanwhile, the patient's power and authority are enhanced in the newly-defined relationship.

IMPLICATIONS FOR PSYCHIATRIC TREATMENT

The shifting authority, patient empowerment and validation of experiential knowledge recognized in chronic care might logically extend to psychiatric treatment, which tends to become a long-term process. For individuals diagnosed with mental illnesses, the chronic state is a familiar experience. While the symptoms may fluctuate over time, or may be somewhat controlled by treatment, there is rarely an actual cure or final resolution of the sick role. When a person experiences a return to a “normal” state, the illness may be labeled “in remission” for a period of time.

In fact, for many individuals, the psychiatric diagnosis brings with it a professional expectation of life-long illness which will require treatment and cooperation for many years. Yet the long-term collaborative and mutually-respectful patient-doctor relationship with increasing amounts of patient responsibility characteristic of chronic physical illness is not the norm for those diagnosed with mental illness.

Although the current medical explanations of psychiatric illness are considered less stigmatizing than the character and moral defects attributed to “mental patients” in the past, the long-term treatment regimens for serious mental illness require the diagnosed individual to enter the sick role and, for all intents and purposes, never to leave it. Applying Parsons’ sick role to psychiatry, the ideal obligations of mental patients would be to: (1) acknowledge their illness and seek help; (2) accept the psychiatric explanation for their personal experience; and (3) accept the psychiatric solutions, becoming a “good patient” for life.

In the model of treatment for chronic illness described above (Lidz et al. 1985; Charmaz 1991), recognition of the patient's experiential knowledge of the illness and self-determination in treatment decisions are essential to success. In a sense, the doctor is serving as consultant to the patient who is considered the expert in his or her continuing illness. In psychiatry, the patient's own experience of symptoms, life issues, medication effectiveness, and tolerance for unpleasant side effects is significant, and quite different from the experience of the treating physician or mental health staff. In fact, valuable information about such experience is only available to the professionals through patient self-report, and through behavioral observations. And yet, by the very definition of psychiatric illness, the patient's self-report may be considered less than reliable by the psychiatrist, particularly if self-knowledge conflicts with the physician's view of the situation.

Given physicians’ suspicion or disregard of patient self-assertions, a process of redefinition is pursued. In this process, the more a patient complies with treatment and the more the patient's expressed reality concurs with the psychiatrist's understanding of the illness experience (which might be deemed “adequate insight”), the more the person with the diagnosis is considered to be a “good patient.” It is expected that the more compliant a patient becomes, the more likely he or she is to improve, and compliance itself can be seen as evidence of symptom reduction. However, despite this improvement, the psychiatric patient may not be expected to return to a normal social role and shed the sick role altogether, but rather to remain in a chronic diagnostic state.

An alignment of the patient's perceptions and condition with those of (normal) providers is one of the goals of any form of treatment, and a significant measure of improvement. In psychiatry, however, unlike treatment for some physical conditions, a patient is rarely considered to be “cured”— in fact, if symptoms resolve and the person feels back to “normal”, the diagnosis is ordinarily shifted to one where the illness still exists; it has merely shifted to a state called “in remission” which may continue for years. In this very important way, “mental illness” differs from both acute and chronic medical conditions of “physical” illness.

In modern psychiatry, a person who has been diagnosed with a serious and persistent mental illness (SPMI) is rarely considered “cured” or completely free of illness. The implied expectation is that mental illnesses are chronic. They may remit but they are likely to recur. Compare, for example the yearly cold symptoms with congestion and cough that many people experience, followed by recovery to a “normal” state. In psychiatric illness, recovery from the symptoms would not be considered the end of the problem. The likelihood of a return to a symptomatic state, with resultant need for medical intervention, would be assumed. The comparable diagnosis in this case would be rhinitis, or bronchitis, recurrent, “in remission.” Next year, a person's next cold would be seen as a flare-up of ongoing, underlying illness, even if no symptoms had been present for many months.

For persons with a psychiatric diagnosis, especially for “serious and persistent mental illness,” it is very difficult to return to normal no matter how well one is feeling. To the contrary, a former patient is always expected to become a future patient and the sick role is ongoing. In fact, if a patient believes otherwise, this can be considered a symptom of exacerbated illness; such “mistaken” beliefs put one at risk of intervention and further treatment. Once psychiatrized, always at risk: for illness, and for treatment.

GOOD PATIENTS AND BAD PATIENTS

In the purview of psychiatry, a “good” patient is one who sees oneself as an ongoing candidate for return to illness (and to treatment), while the “bad patient” claims to be well. The good patient continues to inhabit the sick role, in a dependent or quasi-dependent state, while the bad patient resists the sick role and claims to know better. The psychiatrist maintains the power to define the situation, and the patient may be diagnosed with a psychiatric condition even when symptoms subside or are denied (with or without psychopharmacological treatment). The “chronic illness” adaptation of the physical sick role with its more empowered and self-reliant patient does not have a parallel in the world of psychiatry. The mental patient role, then, can be seen as a variant of the chronic sick role, without the pattern of increase in personal agency and decrease in medical authority, intervention and responsibility identified for chronic physical illness (Charmaz 1991; Lidz et al. 1985).

This disempowered role puts the psychiatric patient in an unusual situation. The more self-reliant a patient becomes, the more at risk for being judged ill or non-compliant with the long-term treatment cycle. (Keep in mind that we are dealing with what psychiatry calls “serious and persistent mental illness,” not the so-called “worried well.”) It is important to examine the ironic implications of a long-term dependency/sick role for psychiatric patients, with neither resolution nor power-sharing, and a continued recognition of psychiatric expertise even without a return to normal to resolve the sick role process. Under these circumstances, the problem continues to be located in the patient, who is defined as being unable to take responsibility for his or her own care. Success is then attributed to good care by the psychiatrist, while failure is attributed to a bad patient.

Yet there are important issues behind this comfortable (and far from benign) disequilibrium. By definition, if a person in the sick role is seen as having responsibility for the condition, or as avoiding treatment, then one's failure to meet the requirements of ordinary social roles is less readily excused. In addition, when the person resists the obligation to seek expert help and follow expert advice, then a more judgmental and less forgiving social response is likely.

When a bad patient resists seeking or accepting available help, actively denies having a problem, or is seen as responsible for the condition, then the attributions and reciprocal expectations of the sick role are transformed. The person defined as sick is seen to be maintaining the problem rather than working to solve it in socially acceptable ways. Only in rare situations is the sick role forced upon an individual. Non-compliant patients with diabetes, cardiovascular problems, or even HIV/AIDS, for instance, are rarely treated against their will. One exception is tuberculosis, which is defined as a public health problem.

In psychiatry, however, when voluntary entry into the sick role is not achieved, an active intrusion of social control may result, in which the person's state of disturbance or distress leads instead to persuasion or coercion by other members of society. Coercive and intensely persuasive or deceptive intervention, while uncommon in medical treatment, are routinely experienced in psychiatry. Ostensibly, the goal is to help the individual and help society at the same time by convincing or coercing the person to accept the help provided.

Goffman describes this helping process as the “betrayal funnel” (1961:140) in which a troubled (or troubling) individual is persuaded to accompany someone to a site, the case is presented, then the person is “sucked in” by subsequent events in which the power of choice is lost and others make the decisions through deception, forced choice or coercion. This entry into a “treatment” setting is not a voluntary entry into the sick role. To quote a slogan of the c/s/x movement, “If it isn't voluntary, it isn't treatment.” Accounts of “betrayal funnel” experiences are common in the survivor narratives of the c/s/x movement.

LABELING AND SECONDARY DEVIANCE

The defining framework of the sick role reveals its own limitations for understanding experiences of mental illness and the interplay of relations with psychiatry, the transforming self, and members of the larger society. The work of Thomas Scheff (1999) provides further theoretical explorations of these experiences within the sociological frameworks of deviance and labeling theory. As Scheff notes in his preface to the third edition of Becoming Mentally Ill: A Sociological Theory, “the theory in this book offers an alternative to the conventional psychiatric perspective” (1999:xiii). The origins, stickiness, and consequences of psychiatric labeling are important topics to activists in the c/s/x movement, many of whom use the term “label” when referring to psychiatric diagnosis.

According to Scheff, psychiatric labeling is a societal response to deviant behaviors observed within the context of social group. When a person persists in behaviors that Scheff calls “residual deviance” or “residual rule-breaking” (1999:53) (normative violations that cannot be normalized, “explained away” or excused as understandable “under the circumstances” by a person's family or peer group), an alternative explanation is needed for this behavior. Through societal reaction to the disturbing behavior, the person is labeled, stigmatized and assigned to a special status. The disturbing behaviors are seen differently when described as mental illness, and the person becomes a mental patient.

Scheff uses a set of propositions to describe the process of attribution and incorporation of the deviant role and the mental patient identity. In Proposition 6, he describes how a person comes to accept the deviant role: “labeled deviants may be rewarded for playing the stereotyped deviant role. Ordinarily patients who display ‘insight’ are rewarded by psychiatrists and other personnel. That is, patients who manage to find evidence of ‘their illness’ in their past and present behavior, confirming the medical and societal diagnosis, receive benefits” (1999:86–87).

He takes the process further in Proposition 7: “Labeled deviants are punished when they attempt the return to conventional roles … Thus the former mental patient, although he is urged to rehabilitate himself in the community, usually finds himself discriminated against in seeking to return to his old status and on trying to find a new one in the occupational, marital, social, and other spheres” (1999:88). Succinctly stated, “Propositions 6 and 7, taken together, suggest that to a degree the labeled deviant is rewarded for deviating and punished for attempting to conform” (1999:89).

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Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Acknowledgments
• Introduction: The Consumer/Survivor/Ex-Patient Movement
• Chapter One: From Sick Role to Social Movement: Theoretical Explorations
• Chapter Two: Negotiating Activist and Researcher Roles: Methodological Considerations
• Chapter Three: The Consumer/Survivor/Ex-Patient Movement: Historical Background and Themes
• Chapter Four: Resistant Identities: Voice, Choice, and Advocacy
• Chapter Five: Talking Back through the Larger Movement: Campaigns and Initiatives
• Chapter Six: The Politics of Identity, Power and Knowledge
• Appendix A: Conferences Attended
• Appendix B: Websites
• Appendix C: Primary Archival Sources
• Bibliography
• Index